tag:blogger.com,1999:blog-3151510227529512182024-03-06T13:59:55.873-06:00Women with CancerPlease join me as I develop an on-line community that supports, empowers and motivates women with cancerJodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.comBlogger131125tag:blogger.com,1999:blog-315151022752951218.post-5151213262314061442015-03-24T17:57:00.000-05:002015-03-24T17:57:04.506-05:00Stable Disease <div dir="ltr" style="text-align: left;" trbidi="on">
It's one of those days. I can't stop smiling.<br />
Spring has arrived after a long, grey winter here in south Texas. It was dank, it was long, it was wet and cold. I felt like we were living in England only without high tea or great accents.<br />
I've been dealing with a progression of my cancer that turned a lot of things upside down for a time. My husband's cancer also recurred for the fourth time. Between my cancer, and his cancer, we marked a permanent path down to the MD Anderson Cancer Center. We considered lobbying for frequent flyer or some other kind of "big user" award. Surprise, this went nowhere. Obviously we find our way through difficult times, by weird humor and staying focused on what needs to be accomplished. We waited for appointments, then scans, then scan results, and then a surgery date for DH.<br />
On my part I've learned a lot about the seasons of metastatic disease in these past four short months. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpwUjTN7e3M2i_kuxntccQbmHx3VwEdrtrtZhD5JJ_VaGu2FxguPtVNXwBmdG5nQgMI61rWL28PMwE8GVLfHkLhPdBdL5rFIrEN85WRKvBT0T48iT36ZRNnM9OHrpPCjKfPDX_B3JtKPGB/s1600/IMG_2457.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpwUjTN7e3M2i_kuxntccQbmHx3VwEdrtrtZhD5JJ_VaGu2FxguPtVNXwBmdG5nQgMI61rWL28PMwE8GVLfHkLhPdBdL5rFIrEN85WRKvBT0T48iT36ZRNnM9OHrpPCjKfPDX_B3JtKPGB/s1600/IMG_2457.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Amaryllis & orchid. Amaryllis planted 12/2014.</td></tr>
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When I planted this amaryllis I had just learned that the metastasis in my stomach had grown and become more aggressive, not receded via hormone therapy as was hoped. The symptoms and realities of stomach mets are not pretty. At its lowest my weight dropped to 89 pounds. Malnutrition was a valid concern. Eating anything was a challenge and the holidays and all its delicious foods were approaching. Managing nausea on a daily basis, one of the difficulties thousands of cancer patients face, was something I hoped not to have to juggle again yet I did. The motto was whatever food worked hit the "approved list." If palatable Hostess Twinkies even would have been acceptable. Oddly enough I found that potato chips or occasionally pretzels worked. I sipped ginger ale and ginger tea.<br />
All those things helped but two key elements were instrumental in leading to happier day I'm experiencing now. One was welcoming the opportunity to consult with a supportive care physician and the other was my own desire to participate in a clinical trial.<br />
The natural progression of treatment was to switch from the aromatase inhibitor letrozole to the estrogen receptor antagonist fulvestrant, or Faslodex. This comes in two hefty 250 mg injections straight into your rear end that can feel like a pack of hornets if too cold or if njected by unskilled hands. These injections are paired with #GDC-0032, an investigational P13K inhibitor developed by Genentech. Many advocates and people I respect have heard positive news about this medicine, which works by shutting down one of the key highways involved in cellular proliferation.<br />
The first month of the trial involved frequent appointments and blood lettings, and some start-up frustrations because I was the first and only patient on the trial. What this means is that something as simple sounding as an EKG can become a big deal because it involves a brand new protocol and by the way, who is writing the rule book? In other words, the kind of excruciating details that leads to waiting and frequent, long emotive sighs.<br />
But detail is the name of the game. Health tracking via the phenomenally old fashioned paper form and ink pen is a daily event. There's nothing like a clinical trial to throw a glaring spotlight on any and all dysfunctional bodily functions. What goes in and more important, in what form it comes out, are just fodder for the data accumulation that ultimately becomes known as side effects.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEKjuMRSGSXiyagaWpBf7MjwaUXnh19GxdygZepxMzKo5bdwnFbK0zFmEWKkfcW0f9seeIEfIE8SbkmccuQL-3-wxVKMEQishvY0aiSZmJUK2uRau78Zyq-L-3fk6DXQic20KT8x0NFTqa/s1600/IMG_2475.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEKjuMRSGSXiyagaWpBf7MjwaUXnh19GxdygZepxMzKo5bdwnFbK0zFmEWKkfcW0f9seeIEfIE8SbkmccuQL-3-wxVKMEQishvY0aiSZmJUK2uRau78Zyq-L-3fk6DXQic20KT8x0NFTqa/s1600/IMG_2475.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Clinical trial recording. </td></tr>
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There are unexpected trial benefits, aside from access to what might become a very successful cancer-fighting treatment. When you enter a trial -- at MD Anderson anyway -- you are assigned a clinical research nurse who is there for you 24/7. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDT2ke023xJRelbX5sDwXVhZE4bVEkscIymAEUb5KoPNVkG9Tz68apAWX030LXRnjMMf6aaVk07kd2EJyNgHdNF-DSNmGoGybg_7yqEGfzbGPcNjHfZ_FVjOq8h7ij8802oPOi4Z2Vp4xN/s1600/IMG_1463.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDT2ke023xJRelbX5sDwXVhZE4bVEkscIymAEUb5KoPNVkG9Tz68apAWX030LXRnjMMf6aaVk07kd2EJyNgHdNF-DSNmGoGybg_7yqEGfzbGPcNjHfZ_FVjOq8h7ij8802oPOi4Z2Vp4xN/s1600/IMG_1463.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Silvia Hodge, RN.</td></tr>
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It's like the patient navigator you always wanted, only better. She arranges all the appointments, answers questions, commiserates and if she's swearing about my constant emails underneath her breath, I don't hear it. She even laughs at my jokes. Points, points, points. What I know is that she is one of the most patient-centered individuals I've met and I'm lucky to work with her.<br />
The other improvement in my health came from my work with a gifted physician in the supportive/palliative care department. Often confused with hospice, supportive care does exactly that, supports the individual's experience with cancer and treatment-related side effects. It's brilliant. By working with a new medication and adjusting accordingly nausea is no longer part of my daily experience. I'll no longer say I won't ever have it again, we are talking about cancer here after all. <br />
Last Wednesday at 7:30 am we started a round of testing to see how successful my current treatment is. My symptoms are better and my awesome oncologist has frequently said that she "doesn't treat a number." She puts as much stock into how I'm feeling as the raw data, tumor markers and scan results, for example. And for now I'm in a kind of a valley, a holding pattern. My disease is not actively progressing nor am I clear of disease, either. It is best described as stable. There are areas to watch and I am content with that, watching them. Not everything in cancer has to be acted upon immediately. The trial scanning protocol is conservative and we will scan again (both MRI and CT scan) in just two months. Any bit of cancer that has ideas other than holding still will be caught and brought to justice. That's what I've learned in this season of cancer. I'll always have cancer yet I have a team at MD Anderson that will go the distance with me. Friends have stepped forward and clearly demonstrated their love, compassion and courage. Yes, some things could be better as far as my health nows. But being here and writing and chatting with you today is simply marvelous. It just is.<br />
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<tr><td class="tr-caption" style="text-align: center;">Make someone's day a little better, a little brighter.</td></tr>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com6tag:blogger.com,1999:blog-315151022752951218.post-28044603426365525982014-11-04T22:36:00.003-06:002014-11-04T22:36:28.789-06:00Sabbatical <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana, sans-serif;">For the past few months it seemed like I was on a cancer sabbatical.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWHQpT6kW-AVqyx3N-NDADRFM0LBSz7pzp1Xy2algEVuGxEIn5ymcORJ3TXZ9nGvfY1Ekl3wzHtqkSbrV-KW8t2BBm15MQkADjYU-7_jZtiF9hMwfJnvx3_wb0Ln95C0bqstCOnrfe2Nnu/s1600/IMG_2013.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWHQpT6kW-AVqyx3N-NDADRFM0LBSz7pzp1Xy2algEVuGxEIn5ymcORJ3TXZ9nGvfY1Ekl3wzHtqkSbrV-KW8t2BBm15MQkADjYU-7_jZtiF9hMwfJnvx3_wb0Ln95C0bqstCOnrfe2Nnu/s1600/IMG_2013.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Outside Crested Butte, Colorado </td></tr>
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<span style="font-family: Verdana, sans-serif;"> DH and I hiked in Colorado and along the Blue Ridge Parkway. I visited a friend in Chicago, started knitting up a storm after a visit to a yummy yarn shop there, and joined Dr. Deanna Attai in San Francisco for ASCO's Breast Cancer Symposium, where she presented our poster on #BCSM, "Can Twitter Social Media be an Effective Tool for Breast Cancer Survivor Support and Education?" Later that month my sister and I had a marvelous time together at our nephew's wedding in Iowa. Her son and his girlfriend were able to join us as well and everyone was having such a great time no one took photos of all of us together. It's been an extraordinarily rich time, the colors brighter. I'll remember mountain air at dusk edged in lavender.</span><br />
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<span style="font-family: Verdana, sans-serif;">That's how life flows, in and out, as rhythmic as the sea. </span><br />
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<span style="font-family: Verdana, sans-serif;">My time between cancer check-ups had been moved out to four months from every three months. <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzfTTcdixiUCXOK5FsuXmksGePOgd8ovWrY1kvnQJH3ke3z9YO3rTXD5kZ9C3QltggjMdjoQvzRFOhbWFCJLlDak1lAi1p81s1zxcYgpM_K-ZNbZnl8v9cUKLK3zQ99eL9Xpp2wx8FCca/s1600/IMG_2076.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCzfTTcdixiUCXOK5FsuXmksGePOgd8ovWrY1kvnQJH3ke3z9YO3rTXD5kZ9C3QltggjMdjoQvzRFOhbWFCJLlDak1lAi1p81s1zxcYgpM_K-ZNbZnl8v9cUKLK3zQ99eL9Xpp2wx8FCca/s1600/IMG_2076.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Deanna Attai, MD. ASCO Breast</td></tr>
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It was like stretching out in newly discovered freedom. Due to a glitch with my new insurance injections of Xgeva were interrupted so all of a sudden I had NO cancer appointments for two months. No email reminders..... your appointment is in seven days, your appointment is in three days, your appointment is tomorrow. <i>Excuse me, but you need to show up now.</i> Any cancer patient will tell you that the never-ending appointments remind you all over again of your illness just about the time you've managed to reduce the dreads and dark thoughts down into a manageable size.</span><br />
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<span style="font-family: Verdana, sans-serif;">It never even occurred to me that this was too good to last but as I was leaving yesterday to meet with my oncologist for last Friday's scan results I suddenly tweeted: "cancer stirs up all the great uncertainties. Even tho I'm feeling well I'm holding on to the other shoe hoping it doesn't drop." </span><br />
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<span style="font-family: Verdana, sans-serif;">Well, the shoe didn't actually drop but I was reminded that cancer can change the trajectory of your life far like that. The good news is that my scans indicated stable disease. That is excellent given the scope of disease when my mets were diagnosed. Scans, combined with your physical well being and symptoms, are the key players in determining the course of treatment. Tumor markers, substances in the blood that measure your response to treatment, are also factored in. The challenge that presented itself is that my tumor markers have more than doubled since my last appointment. Something is happening cancer wise, we just don't know <i><b>what</b></i> that is yet, or even<b><i> if</i></b> there will be a problem. It could be growing disease that isn't yet visible. It could be disease that isn't doing anything, that is simply there. Because it is. kAll we have is a number, albeit a scary one. I can't treat a number, my oncologist said and I agree with that. </span><br />
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<span style="font-family: Verdana, sans-serif;">She was concerned and assertive. We wouldn't change treatment but we will change strategy. The four-month sabbaticals between appointments is over for now. I'll return in two months for more detailed imaging, MRI's of the abdomen and pelvis instead of CT's. In the interim, I'll meet with my GI oncologist again to see if a repeat endoscopy is in order. A year ago that's how metastatic breast cancer was discovered in my stomach lining. That's the dog that caused all the symptoms I was experiencing a year ago and have started to return, a bit at a time. For the time being I'm returning to my broth/bread/ice cream diet to stay on the safe side. </span><br />
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<span style="font-family: Verdana, sans-serif;">Earlier this year we celebrated when I was able to eat salad again, and enjoy a big glass of water at once. I'm sure those days will return. My cancer sabbatical has shored me up with a wealth of experience and images, long days where cancer never entered my mind. Whatever this is, we'll get through it. Earlier today a friend posted what seemed perfect for the next few months of uncertainty, "Hope for the best. Cope for the rest." </span><br />
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<span style="font-family: Verdana, sans-serif;">That's how we roll. </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.cancer.gov/cancertopics/factsheet/detection/tumor-markers" target="_blank">Tumor Markers</a> -- NCI </span><br />
<span style="font-family: Verdana, sans-serif;"><a href="http://www.asco.org/quality-guidelines/american-society-clinical-oncology-2007-update-recommendations-use-tumor-markers" target="_blank">ASCO Guidelines on Tumor Markers</a> -- ASCO*</span><br />
<span style="font-family: Verdana, sans-serif;"> Thanks to @thecancergeek for tweeting this during out 11/3 #bcsm tweet chat, "Ask the Docs." </span><br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com12tag:blogger.com,1999:blog-315151022752951218.post-24834720475725942672014-09-24T12:22:00.002-05:002014-09-24T12:22:40.407-05:00True October <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="letter-spacing: 0px;"><i><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” Margaret Mead</span></i></span></div>
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<span style="letter-spacing: 0.0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It’s coming. I’m not talking about Christmas — even if the ornaments are out already — but the October pink that will soon cover the earth. Trickles of pink already started appearing in August. Within a few years’ time I expect we will see pink streamers competing with the red, white & blue bunting at July 4 festivities. </span></span></div>
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<span style="letter-spacing: 0.0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Breast Cancer Awareness Month, initiated in l985, is now a commercial mainstay of the cancer scene — the pharmaceutical companies, hospitals, cancer centers and nonprofit organizations that aim to prevent, treat and cure this awful disease. And yes, here we are almost 30 years later, same month, hearing some of the same talk about prevention and early detection. It seems to me that everyone is aware of breast cancer. Few understand it and even more I think, are afraid of it than ever before. </span></span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; letter-spacing: 0px;">Fear doesn’t help. Early on I tried to shrug off my initial, Stage III diagnosis with my oncologist. I wanted not to have cancer. “But this is the good cancer, right?” I asked him. As always, he told served up truth on a platter.</span></div>
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<span style="letter-spacing: 0.0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“There are no good cancers.”</span></span></div>
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<span style="letter-spacing: 0.0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Then when my cancer metastasized I was compelled with that same urge. I wanted to know that the metastasis creeping around wasn’t particularly <i>dangerous. Or threatening.</i> Yet. I wanted out of the Stage IV group and into the category of women who die with — not of — breast cancer. </span></span></div>
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<span style="letter-spacing: 0.0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">What can I say. A metastatic diagnosis temporarily leaves you senseless.</span></span></div>
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<span style="letter-spacing: 0.0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Since those early days, between what I’ve experienced with my disease and seen in the metastatic community, my thoughts and perspective have inevitably changed again. </span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">From where I’m sitting the pink parade can go on without me. Games can take place. Eventually November will arrive. The issue isn’t whether or not awareness helps but the kind of awareness we need to advocate for, the kind of awareness worth the time you have here on earth. Coping with October is about focus, not on noise or commercialization, but on the very real work that must be done now.</span></span><br />
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<span style="font-family: Helvetica;"><span style="font-size: 12px; letter-spacing: 0px;">Almost one third of all women and men diagnosed with early breast cancer — there are approximately 1.6 million new cases a year worldwide*— will go on to develop metastatic disease. Metastatic or Stage IV illness, where cells leave the original tumor and establish new outposts in the skeleton or visceral organs, is not curable. It can be treated in a variety of ways that range from the mildly (</span><span style="font-size: 12px;">expletives</span><span style="font-size: 12px; letter-spacing: 0px;"> deleted) disruptive to a life-long balancing act with chemotherapy and its cumulative, toxic impact. The grim and often-repeated survival statistics are not inspiring nor do they bear repeating. Prognostic stats use information from the past to predict how you will do in the future. But as any oncologist can tell you, you can have five women with biologically similar cancer, they can have the same treatment and you can still have have five completely different outcomes due to the individual characteristics of each women and how her disease reacts to treatment. Treatment fails too many. </span></span><br />
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<span style="letter-spacing: 0.0px;">If we are to reach a point where breast cancer is 1) turned into a chronic disease for <i><b>all</b></i> subsets, from the seemingly indolent to the shockingly aggressive </span><span style="letter-spacing: 0px;">and 2) treatments are stripped of the toxicity that renders a patient’s quality of life unmanageable then </span><b style="letter-spacing: 0px;">advanced</b><span style="letter-spacing: 0px;"> </span><b style="letter-spacing: 0px;">breast cancer must have more research and education. <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7mFmmegQj_zICz0E8HHiTM2haJ6y3exfH7KgRiYq9dV85cCsFTtP1Xso2eO7kbhhN8-lRmrgt869VJvPT4eJP5FSUKXwWQCXGSKBlny_0WEN6G3D60Buq9EzSKKM2RXQ-SyRs5ayHTqsR/s1600/10696222_10204310790397576_7167461919319325739_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7mFmmegQj_zICz0E8HHiTM2haJ6y3exfH7KgRiYq9dV85cCsFTtP1Xso2eO7kbhhN8-lRmrgt869VJvPT4eJP5FSUKXwWQCXGSKBlny_0WEN6G3D60Buq9EzSKKM2RXQ-SyRs5ayHTqsR/s1600/10696222_10204310790397576_7167461919319325739_n.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Joyce. Part of treatment for<br />
thousands yearly.</td></tr>
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<span style="letter-spacing: 0.0px;">Late last week the second international congress on advanced breast cancer — ABC2 — issued new guidelines on advanced and metastatic disease with an <b>urgent plea for “high-quality research” for this “historically neglected population.”</b> These <a href="http://annonc.oxfordjournals.org/content/early/2014/09/17/annonc.mdu385.full.pdf+html"><span style="letter-spacing: 0px;">guidelines </span></a>bring the best evidence to bear on advanced disease, including the recent trials on everolimus (Afinitor) for hormone-positive metastatic disease and pertuzumab (Perjeta) and trastuzumab emtansine (Kadcycla) for HER2-positive disease. It also details treatment guidelines for hormone positive, triple negative, hormone positive and locally advanced breast cancers (LABC). </span><br />
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"Advances in survival outcomes for ABC, particularly MBC, have been frustratingly slow," the report notes. "MBC remains a virtually incurable disease and LABC patients vernally have a poor prognosis with a high risk of distinct recurrence." </div>
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<span style="font-family: Helvetica; font-size: 12px; letter-spacing: 0px;">The report is significant for many reasons. To reach consensus on anything related to breast cancer treatment in and of itself is remarkable. The international group of health professionals, advocates and researchers is the first to define treatment guidelines and advocate for metastatic disease from a global perspective. The report is clear, </span><span style="font-family: Helvetica;"><span style="font-size: 12px;">distinct</span></span><br />
<span style="font-family: Helvetica; font-size: 12px; letter-spacing: 0px;">and bold. The guidelines take an additional step and pinpoint where “…research efforts are urgently needed.” They include:</span><br />
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- Patients with metastasis to the liver, pleural cavity or the skin; </div>
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<span style="letter-spacing: 0px;">- Men with advanced breast cancer prescribed aromatase inhibitors (exemestane, letrozole, or anastrozole); </span></div>
<span style="font-family: Helvetica;"><span style="font-size: 12px; letter-spacing: 0px;">- Patients with advanced HER2+ disease who relapse shortly after </span><span style="font-size: 12px;">treatment</span><span style="font-size: 12px; letter-spacing: 0px;"> with trastuzumab (Herceptin) and, </span></span><br />
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<span style="letter-spacing: 0px;">- The role of surgery for the breast tumor when the cancer has already metastasized.</span></div>
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<span style="letter-spacing: 0px;">The report also stresses the need for </span>multidisciplinary, international trials and the education of health professionals on the application of the new information, psycho-social support, early palliative care and patient engagement -- all the things empowered patients stress.</div>
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In fact the steady work of advocates stressing the unique clinical needs of advanced and metastatic patients shows. The typical scenario is to test new drugs on metastatic patients. Then, once efficacy is established, there is a quick movement to test the treatment in earlier stage patients. While moving trials to treat earlier stages is as it should be, the continued treatment of the metastatic patient with that drug and others is left unclear. "So this is what we plea for, that yes, once you have enough data, move to the early setting, but remain and keep investing some effort in understanding how best to treat the advanced breast cancer patient. They are one third of all breast cancer patients patients and they deserve that," said Professor Fatima Cardoso, lead author and co-chair of the latest guidelines. </div>
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"Emerging drug research and treatment guidelines work hand in hand," said renowned advocate and author <a href="http://www.advancedbc.org/content/about-musa-mayer" target="_blank">Musa Mayer. </a>"As the research discovers new treatments to prolong and improve life for people living with mets, the guidelines help us use the tools we have today as broadly and accurately as possible, clarifying for governments and payers all over the world what resources are basic for optimal care."</div>
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I could probably continue to write about all that's contained in this report for the rest of the day. I've read it a few times now and continue to learn more. But I'll close with the thought of "optimal care" for every person diagnosed with breast cancer, from Minneapolis to the Maldives, Tuscaloosa to Tanzania. That is the truth I see in October. The ground swell to bring metastatic breast cancer issues to light is here. Raise your voice. </div>
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<span style="letter-spacing: 0.0px;">Notes: </span></div>
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<span style="font-family: Helvetica;"><span style="font-size: 12px; letter-spacing: 0px;">The first International Consensus Guidelines Conference on ABC (ABC1) was held in 2011. ABC2, which attracted some 1100 participants from 71 </span><span style="font-size: 12px;">countries, took place last November in Lisbon. The conference was organized by the European School of Oncology (ESO) and the European Society of Molecular Oncology. A list of participants is available in<i> The Breast. </i></span></span><br />
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<span style="letter-spacing: 0.0px;">1. “Experts issue plea for better research and education for advanced breast cancer,” September 18, 2014 <a href="http://medicalxpress.com/"><span style="letter-spacing: 0px;">medicalxpress.com</span></a> </span></div>
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<span style="letter-spacing: 0.0px;">2. <i>Annals of Oncology </i>(online) <a href="http://annonc.oxfordjournals.org/content/early/2014/09/17/annonc.mdu385.full.pdf+html"><span style="letter-spacing: 0px;">“ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC2), </span></a>September 18, 2014. Published in <i><a href="http://www.thebreastonline.com/article/S0960-9776(14)00158-1/abstract"><span style="letter-spacing: 0px;">The Breast </span></a> </i>September 20, 2013. </span></div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com4tag:blogger.com,1999:blog-315151022752951218.post-83419428771737767582014-04-10T17:28:00.001-05:002014-04-10T17:28:29.023-05:00Just A Salad <div dir="ltr" style="text-align: left;" trbidi="on">
Last week I finished the first salad I've had in months. Of all things this is the last test you'd think of as a measurement for metastatic breast cancer. But it's just one of the many ways this disease can impact the lives and health of the women and men <a href="http://mbcn.org/education/category/most-commonly-used-statistics-for-mbc" target="_blank">it strikes every year.</a> As with primary breast cancer, you can take two different women with exactly the same breast cancer and how it manifests itself will vary.<br />
The salad itself was simple. Measly even, compared with the vegetable-laden salad bombs I used to toss together. It was all spinach, with hard-boiled egg, some chunks of chicken, mushrooms and a smattering of some excellent French feta (don't ask me who did the labeling on that one) DH picked up at the market. DH had made the salad himself, in fact, after his internist not so gently suggested he make a concerted effort to work more "green stuff" into his diet. He was out cycling so I figured if things did not go well he would be spared knowing that his creation, like so much other food, was quickly spit out by my digestive system.<br />
That's been the problem. After my initial mets diagnosis and accelerating through the summer and fall I continued to lose weight from nausea and vomiting. Blergh. It took my energy and my strength. Suddenly I empathized with pregnant women suffering from morning sickness. I took ginger in every conceivable form, threw that up, carried saltines in my purse, and ate teeny little meals. My nutritionist at MD Anderson became my inner cheerleader. Yes! I could eat every two hours! I would eat nutritionally-dense foods! I would add peanut butter to everything! I could do this! But when DH returned from the grocery with a carton of Ensure I suddenly felt like we were in the middle of a senior citizen sitcom with a lousy script.<br />
During this time I learned another rite of passage of the metastatic underworld: familiarity with emergency rooms. Emergencies in metastatic illness can happen quickly. Ultimately I did not wrestle with this fact but learned what I needed to do. Dehydration from vomiting can send you down a bad path. When the nurse scolded me for waiting too long before coming in I was about to turn pissy on her until I realized that what she was telling me was that witnessing suffering is hard. <i>It didn't have to</i> <i>get this bad, she was telling me.</i> The next time it didn't.<br />
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Beginning in June my regular oncologist was taken up by meetings, conferences and vacation. DS (darling sister) and I joked about this upset by calling the substituting oncologist Dr. Today. Unlike my regular onc, Dr. Today did not come into the exam room prepared. She usually appeared sleepy. Or bored. Or both. I was convinced my cancer bored the hell out of her. Since I was on the vomiting end it was not all that boring to me. Not surprisingly, when my regular oncologist returned we talked for less five minutes before we had a GI consult arranged. </div>
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That brings me back around to my salad. As you know, metastatic lobular cancer was found in the lining of my stomach at the end of October. My oncologist told me that the aromatase inhibitor I was on, the formerly $4-now-$22 letrozole, <i>would work</i> at eliminating the cancer but it would work more slowly than chemotherapy.<br />
He was right. It has been worth the wait.<br />
It was a year ago today that I was lying in the ultrasound suite at MD Anderson waiting for the results of a lymph node biopsy from my neck. You know the rest of that story, but the one I just told you is new. There will be many more. As of now all systems are go in a gentler, slower way. Yesterday I just returned from five days in San Diego as part of <a href="http://www.aacr.org/home/survivors--advocates/scientistharr;survivor-program.aspx" target="_blank">AACR's Scientist-Survivor Program</a>. I managed to practice self-care AND fully participate in the program. No, I didn't get to the 7 am "Meet the Expert" sessions I wanted to attend, I missed some lectures, and I put up my feet instead of putting on heels for a late evening reception. When the mental fatigue and fog set in I remembered to keep my eye on the prize: learning, educating and advocated for women with breast cancer.<br />
And believe me, did I ever enjoy my salad. Dear God, few things have ever tasted so good.<br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com13tag:blogger.com,1999:blog-315151022752951218.post-8637566524729965402014-01-13T18:41:00.000-06:002014-01-13T18:44:54.250-06:00Cue the Kellers <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-size: 14px;"><a href="https://twitter.com/AdamsLisa" target="_blank">Lisa Adams</a> is a stunningly articulate blogger and mother of three from New England who has suddenly found herself as the Rorschsach test for two prominent journalists who should have known better. The husband and wife team, Emma and Bill Keller, writing for the <i>Guardian</i> and<i> The New York Times</i> respectively, in the end tell us more about their own fears and experiences with cancer than they do about Lisa and her current difficult treatment for metastatic breast cancer. She has currently been hospitalizaled at New York's Memorial Sloan Kettering Cancer Center (MSKCC) for almost two weeks now.</span><br />
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<span style="font-size: 14px;">The two pieces of writing are disrespectful, inaccurate, and to return a word grenade lobbed by Emma Keller in her Guardian piece, "unethical." Somehow both writers managed to conclude that Lisa is dying (metastatic and terminal are not synonyms), a huge assumption that isn't theirs to declare. Most bloggers I follow, including Lisa Adams, pay more attention to accuracy than these journalists did. Keller, former executive editor of </span><i style="font-size: 14px;">The New York Times,</i><span style="font-size: 14px;"> originally misstated the number of children Lisa has. Emma's piece has been removed from the Guardian "pending investigation."</span></div>
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<span style="font-size: 14px;">There are many levels on which their "blame the patient" posts are so wrong but I'll stick with two: the gigantic misunderstandings surrounding metastatic breast cancer and a withering lack of savvy about social media and its role in fostering healthy epatient communities. </span></div>
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<span style="font-size: 14px;">Somehow, both writers have found the whole idea of patients writing about their experience, and how @adamslisa in particular does so, strangely offensive. Cue the Kellers with a big welcome sign to the 21st century! Cue the Kellers: no one is forcing you to read anyone's tweets! Cue the Kellers: ever since blogging platforms evolved we've heard from men and women about their disease experience and exchanging that knowledge with others. Cue the Kellers: <a href="http://pewinternet.org/Reports/2011/P2PHealthcare.aspx">Peer to Peer Healthcare </a> published in 2011 by Pew Internet, a project of the Pew Research Foundation. </span></div>
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<span style="font-size: 14px;">For many of us, social media has been the only vehicle in which something approaching truth can be found about living with cancer, and I mean actually living with it, not understanding what cancer is or a definition of chemotherapy. We want hints on helping a phlebotomist find the sweet spot and ten ways of stopping nausea without Zofran. We want to find out more about genomic analysis and in when it's <i>really </i>helpful. No breast cancer patient is going to find these kind of essential details about treatment from the web sites of breast cancer organizations. We find this info from other patients. The organizations may have been founded with the best intention to end disease but each is ultimately vested in its own survival. Patient communities, on the other hand, and patients within social media, exist to help educate and help each other. Patients share freely. It is interactive, dynamic, and powerful, not a one-way street like a newspaper.</span></div>
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<span style="font-size: 14px;">The understated nastiness of Bill Keller's <a href="http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html?_r=0" target="_blank">"Heroic Measures"</a> starts early. He refers to Lisa as " ... a research subject and proselytizer for the institution" (MSKCC). The subliminal shift to "research subject" shows where his perspective hovers about cancer. He constantly uses military language and metaphor, which isn't part of Lisa's style book. Bill Keller's perception of cancer is limited, naive and just plain stupid. Women with metastatic breast cancer or anyone with metastatic cancer period can endure difficult periods of illness and pop back to tell us about it next month. Cancer treatment, even today with many advances, is grueling. Earlier today I corresponded with a woman who has been in hospice three times. She isn't even 60. Yet Keller's point of view is based on this, "In October 2012 I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the Unites States,* patients are offered the option of being unplugged from everything except pain killer sand allowed to slip peacefully from life." If that's not enough, since Keller has already misread what Lisa has written about the palliative care she's receiving, "His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America."</span></div>
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<span style="font-size: 14px;">Wow. He writes on from there for about two more pages. That basis is where Bill Keller's understanding of Lisa's situation stopped, if he ever had any understanding of her situation to begin with. He extrapolates the experience of one (elderly? it looks like Keller himself is middle aged) family member with cancer to everyone with cancer and especially to that woman whose tweets annoy him. It is a failure on an unforgivable scale.</span></div>
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<span style="font-size: 14px;">Cue the Kellers: next time you want to write about cancer, take a look at your own stories. Better, yet, just talk between yourselves.</span></div>
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<span style="font-size: 14px;">*Thousands of patients in the United States are offered palliative care on a daily basis. The UK doesn't hold a patent on this. There is a weekly tweet chat on Twitter every Wednesday evening on hospice and palliative care under the #hpm hashtag at 8 pm CT.</span></div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com18tag:blogger.com,1999:blog-315151022752951218.post-87871349012842708512013-11-19T15:20:00.000-06:002013-11-19T15:20:54.276-06:00The Cone of Uncertainty <div dir="ltr" style="text-align: left;" trbidi="on">
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Anyone living along a coastal area knows about the cone of uncertainty. These are widely ranging swaths of land that lie in the projected path of a hurricane or typhoon. The cone starts small, at the point of landfall, then widens exponentially to include every blade of grass or bird that could possibly be impacted by the storm event. </div>
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At one point prior to Hurricane Ike the weathermap showed IKE sucking up heat as it moved across the entire Gulf of Mexico, then striking the Houston Ship Channel and barreling up a narrow corridor until it landed directly on my house. I was sure of that. This was not a happy moment. I crawled into the bathtub with the dog and ate almonds and chocolate while the storm ripped all the leaves off the trees for miles around and anniliated large sections of beach and homes in Galeston, which suffered the most devastating damage. </div>
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<span style="color: #0000ee; text-decoration: underline;">Hurricane Ike's Cone of Uncertainty </span></div>
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This came back to me again because I've been living in a cone of uncertainty for the last month or so. My thoughts darkened. I felt like I was sheltering in place, treading water, as I waiting for results from tests and as importantly, learning what those tests meant in the context of my life, my health. This is especiallly important in cancer, where an errant fact might look bad yet fit in a cohesive narrative on an indivual level. From what I knew? I could be in trouble. Or not. And I wouldn't know the answer for a number of weeks. </div>
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At the end of October metastatic breast cancer was found in the lining of my stomach. My oncologist had ordered an endoscopy to check out my gut's workings when I continued to lose weight and suffer from bouts of nausea and vomiting without rhyme or reason. None of these episodes could be related say, to a batch of minor food poisoning or a 24-hour virus running through the community. </div>
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Metastatic lobular breast cancer, this little darling of a breast cancer I have (only comprising from 10-15 percent of all breast cancers) can weasel its way anywhere, sneaking along through the lymph system and even wedging between the lining of the stomach and the muscle. When my oncologist explained this yesterday, drawing a decent stomach, esophagus and upper intestine, he penciled in how the cells line up between the two layers. From there it was a mental skip and a jump to grasp what is described medically as a "plastic-type" presentation. As the cells accumulate the stomach itself becomes more rigid and and lead to the symptoms I've been experiencing. </div>
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But the stomach mets did not represent progression. <i> No progression.</i> In cancer land there's no better music to one's ears. The stomach mets were mostly likely present when I was diagnosed with metastatic disease in April. These would not have become apparent on CT until they formed tumors and given the symptoms I've already had, I shiver to imagine how ill I would have been by then. </div>
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So the good news definitely is no progression. The obvious news is learning to live with a stomach that's been damaged by cancer. Some, but not all, of the damage will ease as Femara continues its work. An aromastase inhibitor, which works by blocking the enyme that allows androgen to convert to estrogen, Femara has done remarkable work in my system in six months, nearly knocking out the extensive lymph node involvement I presented with. This is like removing the tree trunk from all the limbs. The more we continue to shut down the feeding system, the fewer malignancies -- like these monsters creeping along in my stomach -- will be there to find. </div>
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In the meantime my disease falls back into the manageable, chronic category. If I continue to take the daily medicine I could be fine for many, many months. I'll have scans again in eight weeks. But no one is a fool, either. There are some indescriminate lesions we want to remain boringly, indescriminate. We want them to stay as boring as they are now. </div>
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I'll watch, yes, I'll be mindful, but I certainly am not qoing to stick around and wait for trouble. No one can say when the next inevitable progression or drug resistance will occur, when the cone of uncertainly will hover again. All of us know that cancer can change its mind in a moment, fake out your immune system, and even recruit a few buddies to help its do its dirty work. We do what we can. Stay rested, eat well, exercise. Don't give the creeps an inch.</div>
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I felt hope growing yesterday, small, but true, and deep. </div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com11tag:blogger.com,1999:blog-315151022752951218.post-6867343716300225372013-10-01T18:04:00.000-05:002013-10-01T19:44:43.108-05:00October 2013<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-weight: normal; text-align: left;">It's October 1, 2013. Our government? Lights out. Our culture? Splashes of pink pop up like crabgrass, from the grocery store aisles to newspaper supplements.</span><br />
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<span style="font-weight: normal; text-align: left;">But the truth is out. Those most affected by metastatic breast cancer are not fooled by the government's stonewalling nor are they taken in by a commercialized illusion of cancer. They are busy with other things. Things like living. Things like dealing with neuropathy or nausea from yesterday afternoon's treatment. Things like tracking down a researcher while juggling a child's after-school schedule, or sharing news about Perjeta, the first neoadjuvant treatment for women whose breast cancer tumors express the surface protein HER2-neu (human epidermal growth factor 2), which account for perhaps 20 percent of the 160,000 new cases of breast cancer expected this year. Things like researching second generation sequencing and asking about the differences between genomic profiling and chemo-sensitivity testing. These are just some of the things people with metastatic disease do. Some are preparing for palliative radiation therapy, a new round of chemo, others are returning home with drains and pain medicine, another has just entered hospice care. Every year approximately 40,000 die of metastatic, not primary, breast cancer. That comes to 1,000 women every day.</span><br />
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<span style="font-weight: normal; text-align: left;">Everyone is changed. Our shared humanity ties us together in a sacred space.</span><br />
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<span style="font-weight: normal;"><span style="text-align: left;">Two weeks ago I attended the Metatstatic Breast Cancer Network's annual conference that was held in conjunction with the MD Anderson Cancer Center in Houston. There </span><a href="http://www.massgeneral.org/doctors/doctor.aspx?id=19077" style="text-align: left;" target="_blank">Don S. Dizon, MD</a> <span style="text-align: left;">of </span><a href="http://www.massgeneral.org/cancer/" style="text-align: left;" target="_blank">Massachusetts General Hospital</a><span style="text-align: left;"> and frequent </span><a href="http://connection.asco.org/commentary/author.aspx?authorid=1199" style="text-align: left;" target="_blank">ASCO Connection</a><span style="text-align: left;"> contributor, presented a perspective on living with metastatic breast cancer that didn't as much resonate as detonate. That's because the words typically associated with metastatic disease aren't of the back-slapping</span><i style="text-align: left;"> hey, </i><span style="text-align: left;"><i>make my day </i></span><span style="text-align: left;">variety. In oncology corridors the frequent phrases are </span><span style="text-align: left;"><i>incurable, progressive, </i></span><i style="text-align: left;">chronic and relapsing </i><span style="text-align: left;">to the frequently repeated "</span><span style="text-align: left;"><i>many live well a long time." </i></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-0tdJd_2V2pNzXbTabXv3rINdgOlrNva-bgT3cpEGd56IZcdFuqKIjk0v6sLxdFki065x8_jJ7C1Ot6WHbvjgLQlCP7oYrj2WMiXqJs17p5f1LqmwayviX_BqsUrG8qaD7t_7T2A625wG/s1600/Image.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-0tdJd_2V2pNzXbTabXv3rINdgOlrNva-bgT3cpEGd56IZcdFuqKIjk0v6sLxdFki065x8_jJ7C1Ot6WHbvjgLQlCP7oYrj2WMiXqJs17p5f1LqmwayviX_BqsUrG8qaD7t_7T2A625wG/s320/Image.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Don S. Dizon at MBCN's Annual<br />
Conference in Houston 9/21/2013.</td></tr>
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In the first weeks following my metastatic diagnosis I frequently deconstructed "many," "live well" and "long time." How was many was many? Greater than 70 percent of women live a long time? 60 percent? I gnawed on my own chances. I had little blobs of cancer in a lot of places, a tad more difficult than one big blob that could be nixed out with a scalpel or a jolt of radation. Listen, someone else's cancer is always cooler than yours. What about a long time? Was that ten years? How about 11? Twelve sounded magnificent but 13! Greedy and perhaps unwise. At that point in my own experience acceptance and uncertainty had not yet laid down the essential, parallel tracks through my consciousness, like the smudge of a jet stream against a fall sky.<br />
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In fact statistics on metatstatic disease, which uses information gathered from the past to project how you may do in the future, now feel absurd to me. They feel inaccurate and out-dated. Social media amplifies the difficult at the expense of underplaying the rhythms of regular life. Many out here in mets country are visually unidentifiable. We don't look sick. Tumor biology and the array of available treatments <b><i>now</i></b>, plus the unknown interplay between each woman's individual health, her tumor and reaction to treatment are the final arbiters of health, of lived days. All these intangibles. There are no answers, only guidlelines and decisions formed by each woman's preferences, her perception of the facts, and an oncologist's wisdom and experience in helping to guide the patient and significant other (s) through the process.<br />
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"Breast cancer sucks. Metastatic breast cancer sucks even worse," Dizon said. He wasn't swearing for an easy conference chuckle (zesty cancer crowds swear a lot) but because it led him to what was even more important, "Feel it. Own it. Embrace it. Then move on."<br />
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Dizon uses a three-prong approach to make some order out of a disease with so many uncertainties. When oncologists say, "everyone's different," that is the truth. Give 100 different women Femara and the range of reported side effects will stagger you. To keep things simple Dizon recommended three words: pragmaticism, realism and optimism.<br />
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A pragmatic approach to metastatic disease, which has stages I'm only now understanding that are not linear but cyclical, simply means being practical. "No one else has to walk in your shoes," he said. "Do what matters. With metastatic disease it's all about you and those you love."<br />
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It's about you and those you love. It occured to me not to let cancer screw that up, that nothing was that powerful. "Prepare for an uncertain present, and an even more uncertain future," he said.<br />
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For me, that is where both optimism and a realistic approach play. This week I have another set of staging scans. That's the reality. Numbers and digital images may or may change my current prescription. But what Don Dizon brought home was his emphasis that being realistic does not mean ceding your independence or sense of less. Cancer won't make me less than.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5WQcQdTYIOm1-owJHbKRlYqiPKk92VeDDiY5QlUNIACoQRvcp266nYAeavVorJp9X__hsgoSs02vpijHSCaeG-xnCBL5DDBpq7rznd-u1Ecw5tP6V1KYXHM8uiacLE8ca_GDIc-VoM9Vs/s1600/IMG_0966.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5WQcQdTYIOm1-owJHbKRlYqiPKk92VeDDiY5QlUNIACoQRvcp266nYAeavVorJp9X__hsgoSs02vpijHSCaeG-xnCBL5DDBpq7rznd-u1Ecw5tP6V1KYXHM8uiacLE8ca_GDIc-VoM9Vs/s320/IMG_0966.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MBCN Conference Shirt Says it all.</td></tr>
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I listened, then walked around for a few moments after his address. When you step into a ballroom full of women amd men who have lived with this illness for many years -- its peaks and valleys, months of clear scans, a body's sudden betrayal, an errant tumor marker, a treatment failure -- your perspective once again expands. It can only be so. Your eyes fill with tears. I know who these women are now. I see them. Yes, finally, I get it. I know each and every one would divorce themselves from this disease in a heartbeat if it were at all possible So far it isn't. But I can feel it, own that, and embrace my life.<br />
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I wish the same for you.<br />
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Some pertinent links for October:<br />
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1) <a href="http://www.advancedbreastcancercommunity.org/countus/2013-global-survey.html?country=united-states" target="_blank">The Advanced Breast Cancer Community, Who Are We? </a><br />
2) The power of grass roots advocacy & growth: <a href="http://www.metavivor.org/Research.html" target="_blank">Metavivor, supporting metastatic breast cancer research </a><br />
3) Amazing work: <a href="http://thinkbeforeyoupink.org/?p=2387" target="_blank">Think Before You Pink</a><br />
4) Takes no offense from the word no: <a href="http://www.usatoday.com/story/news/health/2012/10/16/inflammatory-breast-cancer/1617317/" target="_blank">Terry Arnold</a>, survivor and advocate for Inflammatory Breast Cancer (IBC). IBC is a rare (approximately 4 percent of all cases) and aggressive form of breast cancer that often appears as a rash and may not appear with a lump. It is frequently misdiagnosed. This is one case where early detection can make a profound difference.<br />
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To come: <br />
1) <a href="http://www.abc-lisbon.org/" target="_blank">ABC2 - Advanced Breast Cancer Second International Consensus</a> - Novemeber 7 - 9, 2013<br />
2) <a href="http://www.sabcs.org/" target="_blank">San Antonio Breast Cancer Symposium - </a> December 10 - 14, 2013<br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com13tag:blogger.com,1999:blog-315151022752951218.post-45689124822414772312013-04-26T10:27:00.002-05:002013-04-26T10:37:24.871-05:00Cancer: Round Two <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Times; font-size: medium;"><i><br /></i>On Tuesday, April 9 we celebrate DH's (darling husband's) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.</span></div>
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<span style="font-family: Times; font-size: medium;">The next day I'm at MD Anderson for my yearly visit to the survivorship clinic. This will mark - let's celebrate anyway - my 15th cancer-free year. The mammogram shows an anomaly. We take another view. The second shot is inconclusive. My nurse practitioner meets me in the exam room and says, "I don't want to alarm you, but we need to get another an ultrasound to make sure it's benign."</span></div>
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<span style="font-family: Times; font-size: medium;">I'm not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well. Never has, never will. It's sneaky. The cells line up in a single file instead of clustering to form a mass.</span></div>
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<span style="font-family: Times; font-size: medium;">But by the time I'm in ultrasound, where a radiologist in heavily accented English says, "Do not talk when I have needle in your neck," I realize, <i>this is how your life changes. </i> I see the oblong node above my collar bone, a plump little dude, and the needle moving up and down within it. For a moment something pierces. "So sorry," the doctor says, "I didn't put novocaine in the muscle."</span></div>
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<span style="font-family: Times; font-size: medium;">The ultrasound room is so dark and quiet it has become its own universe, sealed off from regular life. Yet I know that behind the door is a small waiting room where four or five women in bathrobes are waiting. They read old magazines, legs crossed, feet jiggling and twitching. Those gestures mark time. They are waiting while I'm lying still, insanely comfortable on a new gurney (brand new, $4,000 worth of new, the wonderful ultrasound tech informed me) and bundled up in heated blankets. Then I realize a third person is in the room; the pathology assistant for the second, then third biopsy. The tissue will be analyzed immediately. I will know what I need to know what I already know from seeing the enlarged lymph node on the screen. Between biopsies I actually fell asleep. Right now that is my operating definition of mercy, to understand that another diagnosis of cancer is imminent and to be all right with that knowledge.</span></div>
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<span style="font-family: Times; font-size: medium;">With cancer it's not one simple moment but a series of steps, one leading to the next. By the time I arrive home, when DH asks how my visit went, I have to tell him, "not well." He is a three-time melanoma survivor. "Not well" tells him something he never wanted to hear.</span></div>
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<span style="font-family: Times; font-size: medium;">Since April 10 I have been largely offline, either at MD Anderson or trying to get the next appointment in place, and talking with gracious physicians who have been generous with their time, explanations and kindness. </span></div>
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<span style="font-family: Times; font-size: medium;">Plus after 15 years NED I now enter the changed world of cancer diagnostics. I am no longer a CT or MRI virgin. I drank the fruit-flavored barium smoothie, I've had the contrast IV's. I ran into the inevitable young phlebotomist who missed a vein the size of a worm; I looked at her pleasantly and said, "go get someone else." </span></div>
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<span style="font-family: Times; font-size: medium;">The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer. All of this stems from the first cancer, so neither surgery nor radiation are needed at this point.</span></div>
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<span style="font-family: Times; font-size: medium;">Biologically? The cancer's make-up is the same: 100 percent estrogen positive, progesterone negative, HER 2-neu negative. It's time to take away this cancer's food source. I'm about to be so thoroughly estrogen deprived that what I used to complain about menopause will soon become "the good old days." There are many options for shrinking this cancer and I have every hope that this will happen. The fact that it has been 15 years since my original diagnosis helps considerably. </span></div>
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<span style="font-family: Times; font-size: medium;">Last night I started treatment via the local Kroger's, where I picked up a prescription for Femara (letrozole), an AI or aromotase inhibitor. Where tamoxifen blocks the estrogen receptors on cancerous cells themselves Letrozole blocks the enzyme that converts androgens into estrogen in postmenopausal women. In premenopausal women the ovaries are the primary estrogen source. In two months we'll look at what the Femara has accomplished, then consider the double whammy of Aromosin (exemestane) and Affinitor (everomilus), another AI combined with an oral chemotherapy agent. With both approaches I'll receive monthly injections of Xgeva (denosumab) to shore up my bone strength. </span></div>
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<span style="font-family: Times; font-size: medium;">This morning DH wonders if I've experienced any side effects. "No," I told him, "all systems are go."</span></div>
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<span style="font-family: Times; font-size: medium;">It has been difficult, and still is, to relate to this new information. Yet my life is different. How I prioritize will be different. One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me. That is how I feel about you. And that we are all in this together, in this moment and those to come.</span></div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com106tag:blogger.com,1999:blog-315151022752951218.post-67558552037039863852013-03-18T19:32:00.001-05:002013-03-19T13:49:27.328-05:00Survivorship Guidelines. For real. <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Arial, Helvetica, sans-serif;">Late last week the National Comprehensive Cancer Network (<a href="http://www.nccn.org/about/default.asp">NCCN</a>), a nonprofit alliance of 21 comprehensive cancer centers, announced its <i>first ever</i> set </span><span style="font-family: Arial, Helvetica, sans-serif;">of clinical practice guidelines for survivorship care.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> There are some 13.7 million cancer survivors in the United States alone. Of those, 2.9 million are breast cancer survivors. All of us have found our way through those first difficult months and years following diagnosis. Treatment itself was one thing. Trying to adjust to life after cancer was another.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> But by any measure the guidelines are good news for any man or woman in treatment now. </span><span style="font-family: Arial, Helvetica, sans-serif;">The 100-page report covers eight distinct areas:</span><br />
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<li><span style="font-family: Arial, Helvetica, sans-serif;">anxiety and depression</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">cognitive function</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">exercise </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">fatigue</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">immunizations and infections</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">pain</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">sexual function </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">sleep disorders. </span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Standards for evidence-based survivorship care are only being developed now. The first conference on survivorship science as an entity in and of itself did not take place until 2003. In 2004, the CDC and Livestrong published "A National Cancer Action Plan for Cancer Survivorship," which included the simple, yet powerful recommendation to establish an </span><span style="font-family: Arial, Helvetica, sans-serif;">infrastructure for a comprehensive database on cancer survivorship. I don't know if that has transpired. While that sounds smart to me, making smart things happen is not one of the hallmarks of our framented health care system.<b style="font-style: italic;"> </b> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> Then as most of you know, in 2005 the Institute of Medicine published its landmark consensus report <i><a href="http://www.iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx">Lost in Transition</a>, </i>which made the case for survivorship care. Six years later </span><span style="font-family: Arial, Helvetica, sans-serif;">Livestrong held a collaborative symposium of stakeholders, health care professionals and advocates to begin a consenus building project to articulate the "essential" elements in surivorship care. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> A later IOM report, "From Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs," recommended that psychosocial screening be part of quality cancer care. This is well covered in NCCN guidlines but why other concepts from </span><i style="font-family: Arial, Helvetica, sans-serif;">Lost in Transition</i><span style="font-family: Arial, Helvetica, sans-serif;"> and </span><i style="font-family: Arial, Helvetica, sans-serif;">Elements</i><span style="font-family: Arial, Helvetica, sans-serif;"> didn't become part of NCCN's report aren't clear, even though both reports are mentioned. NCCN surivorship care guidlines, for example, don't even support the need for a survivorhip care plan or treatment summary. While we all understand that there's no economic incentive in place for this let's get serious. A one page print out is not rocket science. Both "Lost" and "Elements" stress the need for education - of providers and patients - and coordination of care. NCCN's guidelines don't venture that far.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;"> NCCN's <a href="http://www.nccn.org/professionals/physician_gls/pdf/survivorship.pdf">guidelines</a> are directed at professionals. How this material will make its way from the nation's 21 comprehensive cancer centers to the community setting, where the majority of women are seen, is not explained. Color me skeptical but I see a packet of information stacked on an oncologist's already stacked desk. Neither were there <i><b>any outside patient advocates </b></i>or organizations on the committees as listed in the report. This makes no sense to me. You'd think that patient advocacy networks would be tapped for their assistance and guidance in moving this material to where it needs to be. </span><i style="font-family: Arial, Helvetica, sans-serif;">Let patients know and let them help. </i><span style="font-family: Arial, Helvetica, sans-serif;">No one is more invested in assuring the provision of good survivorship care than we are</span><i style="font-family: Arial, Helvetica, sans-serif;">. </i><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"> A few other take-aways to the report:</span></div>
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<li><span style="font-family: Arial, Helvetica, sans-serif;">at least 50% of (all) survivors suffer from some late effect of cancer treatment. The most common problems seen are pain, depression and fatigue.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">anxiety and depression affect up to 29 percent of all survivors; and some 19% meet the diagnostic criteria for post-traumatic stress syndrome.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">the increasing trend toward more treatment, combined chemo, radiation, hormone therapy and surgery can result in more late effects. One example was the study from last week on increased of heart disease for women receiving radiation therapy.</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;"> Believe me, I am far from done with this topic. Sometimes It seems the more we do to treat - not cure - cancer - the more potential for problems there are down the road. We can't go back and undo treatment we selected, decisions we made when faced with a difficult, confounding disease. I do believe we can do a better job with survivorship though, and these guidelines are one place to start.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> I hope you'll take a look at the report. You will need to establish an account but you can access the material by registering with your email address </span><a href="https://subscriptions.nccn.org/profile.aspx" style="font-family: Arial, Helvetica, sans-serif;">here:</a><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Interesting note: I just saw a news release from NCCN announcing that two additional cancer centers have been added to their network. They are UC San Diego Moores Cancer Ceneter and University of Colorado Cancer Center.</span></div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com19tag:blogger.com,1999:blog-315151022752951218.post-45077406784217752822013-02-27T12:27:00.003-06:002013-03-06T13:03:07.645-06:00Is Metastatic Breast Cancer on the Rise in Young Women? <div dir="ltr" style="text-align: left;" trbidi="on">
<i><span style="font-family: Times, Times New Roman, serif;">Update: 3/2/2013: Ann Partridge, MD, director of the breast medical oncology at the Dana Farber Cancer Institute, with excellent questions on the study data and findings: see below.</span></i><br />
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<i><span style="font-family: Times, Times New Roman, serif;">Update: On Thursday, February 28, #BCSM co-moderator Deanna Attai, MD added more clarity in this appearance on <a href="http://www.youtube.com/watch?v=53IZk6RFqkM" target="_blank">@MyFoxLA</a></span></i><br />
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<span style="font-family: Times, Times New Roman, serif;">Something long noted in breast cancer circles was study coming out today in the <i>Journal of the American Medical Association</i> that found a very small, but statistically significant, increase in the number of young women between the ages of 25 to 39 who are diagnosed with metastatic breast cancer. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">The change noted comes down to an absolute increase of 1.37 women per 100,000 women over 34 years, or approximately 2 percent per year. The same increase was not noted in older women and was consistent across all ethnic and socioeconomic groups. One surprise is that there was a more pronounced increased in women with hormone sensitive breast cancer, rather than ER- cancer. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Why this is happening is yet to be determined and was not the purpose of the study. We are left with more questions than answers. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Studies are often complicated, and this one, a retrospective, observational analysis of <i>three</i> different sets of incidence and survvial rates from the US Surveillance, Epidemiology and End Results (SEER) program at the National Cancer Institute from l976 through 2009 - even more so. The collection of SEER data began in l973, yet the study years ran from 1976 - 2009. Even the largest data set used, SEER 18, only comprises 28 percent of the US population. SEER 9, by comparison, only includes 9.5% of the population, and the third set, SEER 13, 15 percent. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">Study author Rebecca Johnson, MD, Seattle Children's Hospital and University of Washington, wrote in the study that, "Whatever the causes - and likely there are more than 1 - the evidence we observed for the increasing incidence of advanced breast cancer in young women will require corroboration and may be best confirmed by data from other countries. If verified, the increase is particularly concerning, because young age itself is an independent prognostic factor for breast cancer."</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Vast improvements in diagnostic imaging between 1976 and now, staging work-ups and other factors come into play. "The changes noted may be multifactorial," said Jennifer Litton, MD, of The University of Texas MD Anderson Cancer Center, "with changes in rates of incidence and younger women having more aggressive underlying biologies coupled with potentially other genetic factors. What is much more clinically important than this would be changes in overall survival."</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Breast cancer advocates concur. "These numbers do not change it for anyone who dies of this disease today," said Joy Simha, co-founder of the Young Survival Coalition. "We need to focus on finding the cause of breast cancer so we can make change happen."</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Another aspect confirms what was discussed in last night's #BCSM discussion. "What the study enforces to me is the need for all young women to be aware of changes and to be proactive about their health," said Deanna Attai, MD, breast surgeon and #BCSM comoderator. "Doctors need to be educated that there's no such things as "too young for breast cancer." No such thing."</span></div>
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<span style="font-family: Times, Times New Roman, serif;">For women with breast cancer today? Nothing changes. If you're in treatment today? Nothing changes. But if you're watching the larger picture of cancer incidence in the United States in a population that already suffers unduly from a breast cancer diagnosis? Heads up. This is a signal we need to heed. </span></div>
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<span style="font-family: Times, Times New Roman, serif;">3/3/2013: Comments from Ann Partdridge, MD: breast medical oncologist from the Dana Farber Cancer Institute in Boston and medical advisor to the Young Survival Coalition: </span><br />
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<span style="font-family: Times, Times New Roman, serif;"><span style="font-size: 1.1em; line-height: 1.8em;">It is not clear from the study "whether the overall rate of breast cancer in young women is actually increasing," said Ann Partridge, MD, a medical oncologist from the Dana-Farber Cancer Institute and Harvard Medical School in Boston, Massachusetts. In other words, the study does not indicate whether the increase in advanced disease means that there is an overall increase in disease in young women.</span></span></div>
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<span style="font-family: Times, Times New Roman, serif;">That is important because other studies using SEER data have indicated that the rate of overall disease is stable in young women, said Dr. Partridge.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">She pointed out that Dr. Johnson and colleagues found that the rates of localized and regional disease held steady in young women. Therefore, because they found an increase in advanced disease, there<em>should</em> be an overall increase in young women, she said.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">However, the researchers "did not show/discuss data on overall rates of breast cancer in young women," Dr. Partridge wrote in an email. This omission, combined with the fact that the study findings might be in conflict with findings from other studies using SEER data, "leads me to wonder about the article," she said.</span></div>
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<span style="font-family: Times, Times New Roman, serif;">Check out the rest of the <a href="http://www.medscape.com/viewarticle/779917">article</a> and others: </span></div>
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<span style="font-family: Times, Times New Roman, serif;">From Liz Szabo, USA Today: <a href="http://www.freep.com/usatoday/article/1949157?odyssey=mod%7Cnewswell%7Ctext%7CFRONTPAGE%7Cp" target="_blank">"Deadly Breast Cancers are Rising in Young Women"</a></span></div>
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<span style="font-family: Times, Times New Roman, serif;">From the NYTimes: <a href="http://www.nytimes.com/2013/02/27/health/advanced-breast-cancer-may-be-rising-among-young-women-study-finds.html" target="_blank"> "Study Finds More Breast Cancer at Young Age"</a></span></div>
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<span style="font-family: Times, Times New Roman, serif;">From NPR: <a href="http://www.npr.org/blogs/health/2013/02/27/172969262/younger-women-have-rising-rate-of-advanced-breast-cancer-study-says" target="_blank"> "Younger Women Have Rising Rate of Advanced Breast Cancer Study Says" </a></span></div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com15tag:blogger.com,1999:blog-315151022752951218.post-87922119687289092952013-02-25T07:56:00.000-06:002013-03-06T13:07:26.979-06:00Cancer and My Marriage <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="letter-spacing: 0px;"><i>Note: Ask any survivor about side-effects or working with an oncologist and you’ll receive a notebook’s worth of helpful information. Ditto for managing cancer on the job or with children. But ask them about their relationship and you’re apt to hear variations on this theme, “He never blinked,” or “He really showed me how strong a man he truly is.” In other words, you’re not apt to hear what it’s truly like for some women. While we celebrate relationships where love’s better nature rules, it’s also time to honestly share the kind of stress cancer and its associated treatment brings to many two-income families where jobs, children, carpools and chemotherapy all need to be balanced in the course of a day. I was asked by a woman whom I admire to publish this essay here. It is my honor to do so.</i></span></div>
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<span style="letter-spacing: 0.0px;"><i><span style="letter-spacing: 0px;"> </span><span style="letter-spacing: 0px;">--- Jody Schoger</span></i></span></div>
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<span style="letter-spacing: 0.0px;">I never thought I would write an anonymous blog post.</span><br />
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<span style="letter-spacing: 0.0px;">Nonetheless, here I am, writing about cancer’s impact on my marriage after my late-night Google searches only yielded stories of marital triumph, replete with images of the devoted spouse proffering a tender kiss on his partner’s bald head. My hope is that the next despondent, lonely cancer patient might feel a little less crazy reading my story</span><br />
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<span style="letter-spacing: 0.0px;">I love my husband and do not want to be disloyal to him. I will remain strategically vague on some details and alter others to</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">shield my family’s privacy. We have had the kind of marriage people say they can bet on. Single friends confess that they hope to find a partnership like ours. Obviously, things are always messier on the inside, but we undoubtedly share a strong love for and commitment to one another.</span><br />
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<span style="letter-spacing: 0.0px;">When I was diagnosed we’d been married with children for more than a decade. Like every couple we had our strengths and weaknesses. We were strong in the communication department, which allowed us to navigate the transitions of parenthood, moves and job changes.</span><br />
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<span style="letter-spacing: 0.0px;">Even with these strengths at our disposal, nothing challenged our relationship like my cancer diagnosis. I was in treatment for almost a year, with follow-up drugs and surgeries that impacted my quality of life for a prolonged long period of time, far longer than either one of us expected. I had chemo, a mastectomy and radiation which was then followed by a</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">series of reconstructive surgeries. All the while, I held down a job, tried to help raise my children and hold things together.</span><br />
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<span style="letter-spacing: 0.0px;">Our marital glue was communication, adventure, and sex. Chemobrain wiped out my ability to communicate, especially about emotional issues. Strong emotions made me queasy,</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">leading me to shut down even more. Also, my forgetfulness was a constant source of frustration to my husband, who came to treat me like one of the children, nagging and cajoling me.</span><br />
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<span style="letter-spacing: 0.0px;">The painful truth was that he wasn’t totally off-base in doing this. He had to keep the household together, and I was falling apart. As for adventure, it is hard to be spontaneous when you are immunocompromised,</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">nauseated and unprepared for the</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">undertow of fatigue that can</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">pull you in and wipe you out. And of course, our sex life was horribly disrupted. Given the length of our relationship and the presence of children, we were surprisingly regular in our sexual activity. Chemo brought on chemical menopause; the mastectomy took away a critical erogenous zone and left me with profound loss of body confidence. Radiation, for me, was painful and a complete energy drain. All this together is the opposite of sexy.</span><br />
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<span style="letter-spacing: 0.0px;">I have read accounts of the sympathetic, supportive husbands who wait patiently for a partner to heal. My husband was like this probably two-thirds of the time. But he is only human. All the things I couldn’t do he did ... from driving carpools, cleaning the house, doing laundry, communicating with teachers, mediating sibling spats, and tween-age drama</span><span style="color: #37628d; letter-spacing: 0.0px;">.</span><span style="letter-spacing: 0.0px;"> He was holding down his own job, and could only</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">watch</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">as the little energy I had energy my went to my work. By the time I arrived home I was</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">completely spent and totally unavailable emotionally </span><span style="color: #37628d; letter-spacing: 0.0px;">or </span><span style="letter-spacing: 0.0px;">sexually.</span><br />
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<span style="letter-spacing: 0.0px;">Plus my bitterness at the length of treatment grew </span><span style="color: #37628d; letter-spacing: 0.0px;">a</span><span style="letter-spacing: 0.0px;">s the months dragged </span><span style="color: #263e0f; letter-spacing: 0.0px;">on. </span><span style="letter-spacing: 0.0px;">If it had been a month or two,</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">I think we could have endured it and come out relatively unscathed. But this has gone on for years. Not only was this ordeal loosening our glue, but</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">the friction points of marriage – the ways we see things so differently –– began to push us further apart. Because of my limited energy and concentration, we couldn’t have one of our major realignment conversations that used to bring us back to a place of mutual understanding and respect about our differences. Add to this mix the financial strain of decreased income and increased expenses. A chunk of my income comes from freelance work, which was now off the table because of my illness. Even though we have good insurance, I was stunned at how quickly medication co-pays and deductibles added up to big numbers. Money</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">is the source of conflict even in stable situations and we began to argue about purchases that never were an issue before.</span><br />
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<span style="letter-spacing: 0.0px;">Eventually we hit several crisis points. There were the periodic pity parties my husband had about his utter deprivation,</span><span style="color: #37628d; letter-spacing: 0.0px;"> </span><span style="letter-spacing: 0.0px;">emotionally, physically and sexually. It was a stretch for me to comfort him, since he was basically right. Guys really don’t reach out to other men when they are vulnerable. Where I am sure my girlfriends would have rallied to my side had our roles been reversed, he was left basically alone. None of our extended family members live near us. There wasn’t a grandparent, an aunt or even a cousin to give him a break for any length of time. </span><span style="letter-spacing: 0px;">Nor did it help our bond that he was petrified at the idea of actually losing me. At his lowest moments, he would vacillate between his frustration with my helplessness and the terror of my possible death.</span><span style="color: #37628d; letter-spacing: 0px;"> </span><span style="letter-spacing: 0px;">He told me through tears one day, "I can't stand that the one person I want to talk about all this with is you, and you are really not really able to talk."</span><br />
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<span style="letter-spacing: 0px;">Another crisis came after my treatment was over and I started to regain my cognitive and physical energy. It would no longer do for him to treat me like his other child. But it takes more than a simply saying, “Mom’s back in business.” The children had learned that Dad was the Real Parent in the house, an idea reinforced by the ways he would second-guess my authority as a mother. It was difficult to stand up to this. How do you stake a claim to your authority when you are not the same in memory, strength, or energy? I confronted him about this. To his great credit, he has worked with me to rebalance our parenting team, with the understanding that I am still not </span><span style="color: #37628d; letter-spacing: 0px;">100 </span><span style="letter-spacing: 0px;">percent. Regaining authentic balance in our partnership remains an ongoing challenge.</span><span style="letter-spacing: 0.0px;"></span></div>
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<span style="letter-spacing: 0.0px;">Our sex life is on the mend but is still a source of strife. I have not figured out how to feel comfortable naked, with all the scars riddling my torso and the false breast that feels numb and dead. My energy remains unreliable. At night, once the dishes are washed and the children tucked in, I often want to crawl in the bed to sleep. We are trying to be more deliberate about carving out time for ourselves and our relationship, but it is so hard. So, so hard.</span><br />
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<span style="letter-spacing: 0.0px;">There is a lot of talk in the cancer world about survivorship plans for patients. What I really need is a survivorship plan for my marriage. In my support group, I see a lot of people getting divorced after the crisis of treatment subsides. These wounds cut deep, touching our greatest insecurities. Luckily, I do know a handful of survivors whose marriages did recover. I just wish I had more of a roadmap for how to steer my marriage toward success and away from the potential disaster.</span><br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com180tag:blogger.com,1999:blog-315151022752951218.post-38579202775370062022013-01-08T12:19:00.000-06:002013-01-08T12:19:29.389-06:00Kicking off 2013 with Regina Holliday <div dir="ltr" style="text-align: left;" trbidi="on">
One of the great assets of dipping into social is the opportunity to watch movements and events - from political uprisings to breaking news like Sandy Hook - take place. Some flare then fall away. Others begin as a small spark and grow steadily until one tipping point after another is scaled. Then suddenly, everyone wonders what it must have been like <i>before. </i><br />
<i> </i>Regina Holiday is one of those sparks. I've been following her work and advocacy for more than two years with sheer admiration for her guts, passion, intelligence and relentless determination to set things right. Hers is so much more than, "I never want what happened to me to happen to anyone else," even though this is certainly part of her mission.<br />
That mission involves medical data, patient empowerment and making possible the movement toward centered patient care.<br />
Every hospital in the country is going to tell you they practise patient-centered care. But patient centered care in its loosest definition, includes (not excludes) the patient's significant other, an explanation of the patient's diagnosis and outlined treatment plan, a copy of that plan, an explanation of tests and procedures, repeated as many times as the patient and significant other needs to grant approval. As I said, this is a loose definition.<br />
Regina Holliday and her husband, Fred, received none of this in a large hospital in the greater DC area in 2009. From the bare outline of her story you'd think it was something from the dark ages. It wasn't. Her husband died on June 17, 2009, just two short months after being diagnosed with a Stage IV renal carcinoma. This diagnosis had been missed -- the symptoms not even investigated - on four separate occasions. In a major metropolitan area. He was given antibiotics, then pain killers and told to go home.<br />
But Regina and Fred's story doesn't end in tragedy. It only begins there. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLPSyggJgevXhriIP9QDRdv4ugfVxN4K9ZHp5NO8TZ1FqG4dm_kbP_1PDU_CzbwyAzvWfsK_lGNNa48JW6i4Qj29dNM0XVA5zqmNbmUMX0PE25iT31VHxbjh0XQy2LSDltSOXDd0jJN9DW/s1600/5711821461_3ff9ab2c68.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLPSyggJgevXhriIP9QDRdv4ugfVxN4K9ZHp5NO8TZ1FqG4dm_kbP_1PDU_CzbwyAzvWfsK_lGNNa48JW6i4Qj29dNM0XVA5zqmNbmUMX0PE25iT31VHxbjh0XQy2LSDltSOXDd0jJN9DW/s320/5711821461_3ff9ab2c68.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little Miss A-Type: Regina Holliday's jacket. </td></tr>
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Regina transformed her grief into action. An artist by inclination and training, she documented their story in murals, paintings. She spoke publicly, at prestigious patient conferences and symposiums. She became the visual reality of the epatient- "give me my data" movement that is part of the Society for Participatory Medicine.</div>
For all these reasons and so many more - we had Regina as our first guest for 2013 on #BCSM last night. It was 60 bristling minutes of discussion about change, educating others, and taking charge of our own health.<br />
I've put together a Storify of the chat <a href="http://<script src="//storify.com/jodyms/a" target="_blank">here</a> and the full Symplur transcript <a href="http://hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=BCSM&fdate=01-07-2013&shour=18&smin=00&tdate=01-07-2013&thour=19&tmin=15&ssec=00&tsec=00&img=1" target="_blank">here:</a><br />
When Regina asked the (<i>alleged</i>, my very obvious editorial judgement) oncologist for details about her husband's diagnosis, her referred to her as<i> Little Miss A-Type Personality. </i><br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com6tag:blogger.com,1999:blog-315151022752951218.post-17009212482399691832012-12-11T16:51:00.000-06:002012-12-12T17:17:00.503-06:00Advocacy at #SABCS<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrHDw9WlmyFSN7CKGZkinZwi9ewy7zoORF3lNHj0zpq485vsliDRTWIq_4RwvkdY91pZpvylpQFwwnZVaY0i7p88SHMwU9MGBdh3xMj1cBVWqTger1pUSwGE9HdJkkVSwobTMqsmlClxL7/s1600/IMG_0057.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrHDw9WlmyFSN7CKGZkinZwi9ewy7zoORF3lNHj0zpq485vsliDRTWIq_4RwvkdY91pZpvylpQFwwnZVaY0i7p88SHMwU9MGBdh3xMj1cBVWqTger1pUSwGE9HdJkkVSwobTMqsmlClxL7/s320/IMG_0057.jpg" width="240" /></a></h4>
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<tr><td class="tr-caption" style="text-align: center;">Dec 6, 2010 San Antonio: 7:15 am</td></tr>
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My mind is stuffed with data - slides, posters and much more after attending the 35th annual San Antonio Breast Cancer Symposium last week, an international gathering covering everthing about the science of breast cancer. </div>
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Conferences like this are a conundrum: there are more sessions to attend and people to see than one person can possibly manage ... yet we know how vitally important the information is for women with triple negative, inflammatory and/or metastatic breast cancer. We all know women whose lives depend on what is happening in the translational research context and Phase III trials. We all want to have the chance to stand up to applaud, cheer and yell. This year there was polite applause. While I keep hearing the phrase - from lab to the clinic - there wasn't a lot for the woman having an appointment tomorrow. That is the truth from what I've studied so far. Knowing what is possible helps us understand how to pinpoint our advocacy.</div>
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Here are a few highlights: </div>
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<tr><td class="tr-caption" style="text-align: center;">Susan Rafte, Houston</td></tr>
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<li><b>34 Years:</b> that's how much time was needed for the first-ever "civilian" moderated session. Susan Rafte, founder of the Pink Ribbons Project in Houston, moderated a three-part panel on breast cancer survivorship that included presentations on sexuality during and after treatment, the risk of secondary cancers and cognitive dysfunction. Patricia A. Ganz, MD, speaking on the cognitive issue, was a far better bet than the small but attention-grabbing study on chemobrain presented later in the week. Establishing a survivor-led session was a huge advance in advocacy that we want to see continued not just at SABCS, but at ASCO and ASCO Breast. <i><b>Let patients help</b></i>, is what @epatientdave in the Society for Participatory Medicine says. Ditto that!</li>
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<li><b><i>Atlas Shrugged</i></b>: The Adjuvant Tamoxifen: Longer Against Shorter or (ATLAS) study showed that use of tamoxifen for 10 years instead of five provided a 2.8 percent decrease in overall mortality, especially in the second decade following diagnosis. You could hear the collective groans from survivors who have taken the drug. You could hear the collective groans from medical office staff in charge of answering the phones. You could hear the questions about tamoxifen/vs aromatase inhibitors and who to start when and on what from oncologists. In the long run this trial will not change your life; it will add to the wealth of information oncologists have in developing treatment plans for women diagnosed today. With one huge exception: if indeed pre-menopausal women are going to be prescribed 10 years of tamoxifen then an effective survivorship plan that includes side-effect management must come with the prescription. No kidding. What use is the information if adherence in the population under 45 barely approaches 50 percent? This issue itself is bigger than the trial findings. Adherhence is a worrisome trend considering the natural history of ER+ breast cancers and its tendency for "late" recurrence (be sure you know when late recurrence means five or when it means after 10 years - it varies). At some point in THIS life I hope to hear one physican stand up and state the simple truth, "There's no doubt. This is a tough drug to take and we've known this for a long time." </li>
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<li>S<b>cience is Incremental</b>. Breakthroughs are rare. Advances don't arise from a vaccuum. Most point to the 2005 ASCO presention of Herceptin in HER2+ cancer as the benchmark. "Cancer researchers often toil in a grey mist, a world of indistinct outlines, an oft-depressing, or at least frustrating place," George Sledge, MD, past president of ASCO, wrote in <i>OncologyTimes.</i> Wow. It helps when we understand the researcher's daily challenge; the clinician's hopes. A basic understanding of how medical progress happens is essential for making sense of SABCS. Without it the symposium would be a very disappointing place. Distinguishing hope and hype, promise or promotion is key.</li>
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<li><b>Anecdote vs Evidence</b>. My experience is essential as an advocate and writer. It empowers me as "ears" within the breast cancer community. But my experience is not evidence. It's my story. </li>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCmiT1a6F4FGDWB2QPMgnalioTGxDnZJjwNAoaltCTTb45GofdzqfGbENpqm8Z3t5yOjEm8UM8_L_qLvzj28vTobm4-2z53IHaaBgzIqI7fFEPkucInyzTtC0ARl34jgS5MSA7fTVi5QFj/s1600/IMG_0072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCmiT1a6F4FGDWB2QPMgnalioTGxDnZJjwNAoaltCTTb45GofdzqfGbENpqm8Z3t5yOjEm8UM8_L_qLvzj28vTobm4-2z53IHaaBgzIqI7fFEPkucInyzTtC0ARl34jgS5MSA7fTVi5QFj/s320/IMG_0072.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Science in action. Biomarkes w/in HER2+ drawing.</td></tr>
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<li><b>Moving Forward in HER2+ Cancers. </b>There was good news here: one year of traztuzumab is still the gold standard. And to see where things are going? Take a peek at my horrible photo above: it gives you some idea of the depth of detail necessary to develop effective treatments. We are talking about layers within an individual cell itself that are at times impossible to fathom. All within one cell. Plus another discussion on "functional genomics" left me with the impression that it may not be an individual biomarker itself that makes the difference in developing effective treatments but the architecture in which those biomarkers exist, or better yet, the roadmap or pathways the biomarkers populate.</li>
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<li><b>Avastin: </b> So long, farewell...or at least, until the drug can be matched with the right biomarker.</li>
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<li><b>Advocacy</b>: The breaking story as far as I'm concerned? The photo here, advocates and fellow recipients of scholarships from the Alamo Breast Cancer Foundation. Betty Summer (L) and Vicky Carr, are part of a group that formed within the conference itself. <i style="font-weight: bold;">This is why advocates attend conferences like SABCS. </i>These women identified a need in the triple negative breast cancer population and moved forward immediately. Not tomorrow or next week. They went to work that day. They met, planned, thought, and considered the evidence. They found physicians involved in triple negative research and asked tough questions: where is the promise? Where is the hope? Before the weekend was over they were formulating a plan, "drilling deep," as we heard all week, outlining strategic initiatives to address an aggressive and confounding form of breast cancer. If there's success, and I'd say there was, it will be in watching their story unfold. They are part of the solution. So are you.</li>
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There's much more to come. Thanks for reading,</div>
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From Cure Magazine on advocacy:</div>
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<a href="http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2012/12/3/Breast-cancer-advocates-a-visible-presence-in-San-Antonio">http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2012/12/3/Breast-cancer-advocates-a-visible-presence-in-San-Antonio</a><br />
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With thanks to the Alamo Breast Cancer Foundation for the scholarship that made it possible for me to attend the 2012 San Antonio Breast Cancer Symposium.</div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com20tag:blogger.com,1999:blog-315151022752951218.post-26528350591404565382012-11-28T16:22:00.004-06:002012-11-28T16:22:47.411-06:00Your Mind on Chemo <div dir="ltr" style="text-align: left;" trbidi="on">
Mentioning chemobrain to a group of cancer survivors is the equivalent of yelling "FIRE" in a crowded theater. <br />
Yesterday it was impossible to miss the collective shouting when the Radiological Society of North America (RSNA) announced the results of a small study demonstrating the physiological process behind the symptoms that plague so many of us.<br />
Now there is a scientific explanation behind that freaky and disabling symptoms that make up the word "chemobrain." While sometimes used derisively, sometimes jokingly, sometimes teasingly, there is now no getting around the fact that administering chemotherapy causes significant and demonstrable changes in brain metabolism.<br />
Makes sense, you think.<br />
And it does. But common sense isn't science; and even those medical professionals who listened sympathetically to their patients had little to offer in return. Part of the answer came in the way the scientists approached the problem.<br />
Instead of studying chemotherapy's effect on the brain's appearance, Rachael A Lagos, D.O., and colleagues at the West Virginia Univeristy School of Medicine instead looked at its effect on brain <b>function </b>through an analysis of PET/CT brain imaging results utilizing special software.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMgChJyEFlwHpu_cV-hnLAcMAtsYyUdwzN5ZSPOGo2kyfbTprEgIIj2CKDNsKtDnfzvirV1k3NBtWeXETCByg5ZSw09Z6kGCUQowrsjlshFt91gckgBQaCbi6615jcLKjT-y1ylf202Aj5/s1600/safe_image.php.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMgChJyEFlwHpu_cV-hnLAcMAtsYyUdwzN5ZSPOGo2kyfbTprEgIIj2CKDNsKtDnfzvirV1k3NBtWeXETCByg5ZSw09Z6kGCUQowrsjlshFt91gckgBQaCbi6615jcLKjT-y1ylf202Aj5/s320/safe_image.php.jpeg" width="320" /></a></div>
What a difference that made. The proof was in the scans where <b>"statistically significant decreases in regional brain metabolism" </b>were noted. Those changes were seen in areas associated with contentration and memory.<br />
Long story short: your brain has as much difficulty processing chemotherapy drugs as the rest of your body does.<br />
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By now you all know that <a href="https://www.facebook.com/robertbazell" target="_blank">Robert Bazell</a>, heath/science correspondent and author of <a href="http://www.randomhouse.com/book/9960/her-2-by-robert-bazell" target="_blank">The Making of Herceptin</a> covered the story for <a href="https://www.facebook.com/nbcnightlynews?fref=ts" target="_blank">NBC Nightly News</a> and a crew came to talk with me yesterday morning about my chemobrain experience. <br />
My experience may have been different from yours. Mine may have lasted longer. You may have had sypmtoms that disappeared overnight. I don't know how much of the cognitive problems I encountered can be attributed to chemo or simply the totality of treatment -- radiation, multiple surgeries, and tamoxifen, the ultimate in brain scrambling medications. But I don't need a study or PET/scan of my brain to say that definitively about Tamoxifen. After seeing this short and doable demonstration from a radiation resident (the RSNA study was a poster session, mind you) from just ONE aspect of cancer treatment is more than enough for me.<br />
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<tr><td class="tr-caption" style="text-align: center;">Exercise works for easing chemobrain. Truly does.</td></tr>
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<b>Now where we need to go is to continue the discussion on working through the disability.</b> That's why the crew filmed the additional segments that they did. Those weren't random. Both cycling and quilting were activities I took up AFTER treatment to help cope. There is no doubt that physical exercise, intense aerobic activity, is one of the best possible things you can do to cope with chemobrain, fatigue, and regain strength and vitality. Taking up quilting involved learning a compelte new set of tasks, and yes, not seriously injuring myself or anyone else when using a rotary cutter. A third way to help anyone suffering cognitive impairment would be assistance with organizational skills. Anyone who knows me and looks at my waning organizational skills can attest to that. A good text on ADD probably woundn't hurt either. Stress management is also key. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9_8ajmxfcipogBrmg2jv-qzmkcpsc5SPx5AuhojEEBDa5w1hyphenhyphenNtvyBC671qURnSUC0ZUvqnq1aQxw5PmM5KuUhPtGRSNUa1qPPaMXmOCiyIwTEYojQSFN6n2CbgYE6sTNcqSTjIW7D_am/s1600/2012-11-27+09.27.10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9_8ajmxfcipogBrmg2jv-qzmkcpsc5SPx5AuhojEEBDa5w1hyphenhyphenNtvyBC671qURnSUC0ZUvqnq1aQxw5PmM5KuUhPtGRSNUa1qPPaMXmOCiyIwTEYojQSFN6n2CbgYE6sTNcqSTjIW7D_am/s640/2012-11-27+09.27.10.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Quilting is something I took up after cancer treatment....it's soemthing creative and stress managment all in one. Here I'm using English paper piecing of 3/4" hexagons. There's no way to machine piece them accurately.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJGgwVvu4Jeta0J1a4oCldgX6_P0HdkOzwgleEI6dIE8NgsEQGonzz__vT-mhKATABGUF_6vtqjIaqF-KXKnMu1CxOpZNjw36b0rW6CVMvJD4z1b5VXtZdZCJJ67I1JbYnq5KTP170QzU0/s1600/2012-11-27+09.07.37.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJGgwVvu4Jeta0J1a4oCldgX6_P0HdkOzwgleEI6dIE8NgsEQGonzz__vT-mhKATABGUF_6vtqjIaqF-KXKnMu1CxOpZNjw36b0rW6CVMvJD4z1b5VXtZdZCJJ67I1JbYnq5KTP170QzU0/s320/2012-11-27+09.07.37.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Debbie Strauss of NBC News.<br /><br /><br /></td></tr>
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When I watched both the broadcast and web footage last night I was reminded that for many of us, the cancer itself wasn't a problem but recovering from treatment <b>WAS. </b> While we were talking I told correspondent Debbie Strauss that during those difficult months I remember staring at a blank piece of paper trying to write a simple paragraph. <br />
A paragraph. Something I used to do in my sleep. Something I could do upside down or inside out. No, writing a paragraph has never been the same. But never has the sense of accomplishment carried such a sweet ring, either. And that will always be enough.<br />
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More where this came from:<br />
<a href="http://video.msnbc.msn.com/nightly-news/49986490#49986490" target="_blank">Reserarchers Find Evidence of Chemobrain</a><br />
<a href="http://video.msnbc.msn.com/nightly-news/49986490#49986490" target="_blank">Healing from ChemoBrain Gradual</a><br />
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BoingBoing: <a href="http://boingboing.net/2012/11/28/new-evidence-of-chemo-brain.html" target="_blank">Chemobrain....Isn't All in Your Head</a><br />
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Great blog on chemobrain <a href="http://chemo-brain.blogspot.com/2012/11/you-can-thrive-can-you-help.html" target="_blank">AnneMarie Ciccarella</a> and this recommendation: <a href="http://www.idelledavidson.com/" target="_blank">Your Brain After Chemo</a>, by journalist Idelle Davidson.<br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com9tag:blogger.com,1999:blog-315151022752951218.post-78692511194856801492012-11-18T18:57:00.000-06:002012-11-18T18:57:01.201-06:00Acceptance <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="background-color: white; color: #181818; font-family: georgia, serif; font-size: 14px; line-height: 18px;">“Understanding is the first step to acceptance, and only with acceptance can there be recovery.” </span><br />
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― <a href="http://www.goodreads.com/author/show/1077326.J_K_Rowling" style="color: #666600; text-decoration: none;">J.K. Rowling</a>, <i><a href="http://www.goodreads.com/work/quotes/3046572" style="color: #666600; text-decoration: none;">Harry Potter and the Goblet of Fire</a></i></div>
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Of all the emotions associated with cancer acceptance doesn't get that much play. Grief and anger certainly grab their fare share of cancer talk time. Mind-numbing disappointment is right up there as well. The same goes for the kinetic sense of shock felt upon hearing a cancer diagnosis. <br />
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On the other end of the spectrum is gratitude. Totally problematic. No one I know needed cancer to appreciate the beauty in a moment, the significance of a child's love, or the fleeting nature of time. Let's get serious. The majority of survivors I know weren't emotional or spritual reprobates<b><i> before</i></b> they were diagosed. None of us, before or after cancer, are sensitive and luminous beings about every single thing all the time. That is too gooey for words.<br />
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And "cancer as gift?" We won't go there. If cancer's a gift my friend <a href="http://www.uneasypink.com/" target="_blank">Katie Ford Hall </a>said, "then I'm demanding a refund." Stop by customer service, thank you very much.<br />
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Acceptance is the middle ground. Acceptance is pragmatic and realistic, it means that cancer (or any threatening illness) is something I will have to deal with for the rest of my life. Acceptance, though stark, frees you. It empowers you to take positive steps to address your diagnosis, from seeking a second opinion, to making lifestyle changes after treatment. It means that you live with the knowledge cancer could return without living in fear of that happening. Sometimes I tell friends, as if to remind them, "you don't have cancer <i>today.</i>" Acceptance helps keep our feet on the ground.<br />
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Accepting cancer in your life doesn't equate to being at peace with it; and it doesn't mean that grief is bypassed since few things in life, other than a ruler, are linear. You can accept your diagnosis and be actively mourning the loss of safety and certainly your family is experiencing. Lost time hurts. Acceptance demands that we look at the problem, rather than away. At it's simplest it is life on life's terms.<br />
<br />
That's where I am right now: life on life's terms. I've been thinking about this since Friday when @liftweights4jc (Jason) asked on Twitter, "Does anyone ever come to a place where they have peace about having had BC?" My answer is yes, I think so, but I don't know what your experience is or has been. Nothing would be more rewarding for all of us, espeically during the holidays, to explore the question. <br />
<br />
So I quickly dropped a note to my #BCSM co-moderators, Deanna Attai, MD, and Alicia Staley. Were they interesting in discussing this? The answer was a resounding yes. I hope you can join us tomorrow night at 9 pm ET/8 pm Central/6 Pacific on Twitter.<br />
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And if you can't, I'd still love to hear your answer to: "Have you come to a place where you have peace about having had cancer? How did it happen?"<br />
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Happy Thanksgiving to all of you. You are such bright lights in my life,<br />
<br />
Jody<br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com20tag:blogger.com,1999:blog-315151022752951218.post-33984701470795829572012-10-24T09:58:00.001-05:002012-10-24T10:01:46.241-05:00Changing Narratives <div dir="ltr" style="text-align: left;" trbidi="on">
For the longest time October would arrive with difficult memories of my father's death. When I was 24 he went into the hospital with severe headaches and then died within three weeks of small cell lung cancer that had metastasized to his brain. He was 52. My family's shock and grief felt so disabling I wondered how we would find our way again, collectively and individually.<br />
<br />
But you do, because that is how love works through time.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin0d0ToZrL7OgKJNCYzWBdtGki_RWaMVlVHTWB-_eUNHVofxbl3xf0TM0JmhM6lkysbHmMTP9Q6b19v4ZLS05Nb7kz60Wah-eDzGrRn6eSBQOPHBmT_VHsA4wQqEOnRHjy742l7EgcObnf/s1600/IMG01118-20121024-0925.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin0d0ToZrL7OgKJNCYzWBdtGki_RWaMVlVHTWB-_eUNHVofxbl3xf0TM0JmhM6lkysbHmMTP9Q6b19v4ZLS05Nb7kz60Wah-eDzGrRn6eSBQOPHBmT_VHsA4wQqEOnRHjy742l7EgcObnf/s320/IMG01118-20121024-0925.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Perfect Purple</td></tr>
</tbody></table>
Eventually October reclaimed its spot as one of the best times of the year - sparkling fresh air, cider, cinnamon, and little goblins dressed in sheets coming up the driveway with flashlights and parents in tow. Even in l998 October was <i>still </i>a month. That year it marked the beginning of my second course of chemotherapy, a milestone of sorts in my own cancer narrative. October marked the first (of two) times I particiatped in a Komen walk in an outrageously awesome t-shirt my beautiful sister produced just for the event. The shirt was my favorite color - purple. She had enough made so I could give them to the special men and women who'd done so much for all of us during treatment.<br />
<br />
That's how love through time works.<br />
<br />
And this year October changes again. All of us who care and write about lives affected by cancer sense a shift. Conversations about breast cancer are changing, thanks to the work of writers and truth tellers who speak honestly about their experience with breast cancer. While the changing conversation isn't fast enough to dampen the suffering in our midst we keep at it, louder and louder, <i><b>because we can. And we must. </b></i>I just realized yesterday (ah, some of us are slow) that those learning about breast cancer from their own diagnosis or that of a friend come into the experience bombarded with the pink images it took many of us years to deconstruct. <a href="http://gaylesulik.com/" target="_blank">Gayle Sulik, Ph.D</a>., author of <a href="http://pinkribbonblues.org/" target="_blank">Pink Ribbon Blues</a>, dedicated ten years of research, interviewing and writing to become an "overnight" success and change agent in breast cancer culture. We are all the wiser to remember the time it takes and collective work necessary to approach a tipping point.<br />
<br />
A debt of gratitude to all of you truth-tellers for your honesty and advocacy.<br />
<br />
jms<br />
<br />
And a huge thank you to <a href="https://twitter.com/LizSzabo" target="_blank">Liz Szabo,</a> for the wonderful spotlight she provided to the conversations we're changing through #BCSM. Her write-up, with video: <a href="http://www.usatoday.com/story/news/nation/2012/10/23/breast-cancer-group-support/1637633/" target="_blank">"Breast cancer survivor group is a social movement."</a><br />
<br />
#BCSM co-moderators Deanna Attai, MD, Alicia Staley and I are incredibly honoroed. If you haven't checked Liz's other articles on her breast cancer and health issues please do so. Just this month alone has covered inflammatory breast cancer, breast cancer and pregnancy and ways to help breast cancer survivors in way that is informative, real, and immediate. I think she's one of a kind.<br />
<br />
Also thanks to<a href="https://twitter.com/lizscherer" target="_blank"> Liz Scherer </a>(it's a Liz day!) for the awesome shout on her blog <a href="http://flashfree.me/2012/10/10/wednesday-bubble-hold-your-breasts-its-breast-cancer-awareness-month/" target="_blank">FLASHFREE: It's Not Your Momma's Menopause in: Hold Your Breasts; it's Breast Cancer Awareness Month.</a>'<br />
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While I'm on Liz movement...add in:)</div>
Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com6tag:blogger.com,1999:blog-315151022752951218.post-80541076668311651212012-10-18T12:27:00.000-05:002012-10-18T12:28:06.840-05:00Beautiful Pilgrims<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpjzyy858c2rSEYQB-Jb3EXRpEt2jxoVmTy3LKGXZ_WvWdhEMvzsxiFk_H64-tci_89J8Nxj3PIFyJt4XHvaWq9fDxST6NrDYVTPHFvNSO2t93WXjj0xveTzR7b99mOmAWZ2QrgaDRVVcz/s1600/IMG_0041.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpjzyy858c2rSEYQB-Jb3EXRpEt2jxoVmTy3LKGXZ_WvWdhEMvzsxiFk_H64-tci_89J8Nxj3PIFyJt4XHvaWq9fDxST6NrDYVTPHFvNSO2t93WXjj0xveTzR7b99mOmAWZ2QrgaDRVVcz/s320/IMG_0041.JPG" width="320" /></a><i style="font-family: 'Lucida Grande'; font-size: 11px; letter-spacing: 0px;">The other night my sister and I were talking about breast cancer awareness/advocacy and #BCSM. I said to her that the month of October leaves me concerned as an advocate - it can be divisive, renew anxiety in survivors and far too often fund-raising hoopla overshadows the reality of cancer.</i><br />
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;"><i><br /></i></span>
<span style="letter-spacing: 0.0px;"><i>I asked her what poem came to mind from the words community and support. One the reasons I love her so much? This is what she sent to me. For all of you beautiful pilgrims.</i></span><br />
<span style="letter-spacing: 0.0px;"><i><br /></i></span>
<span style="letter-spacing: 0.0px;"><i>-- with love to Megan and for Lisa Adams.</i></span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;"><br /></span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">The Shape of the Leaf -</span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;"><br /></span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">This is the shape of the leaf, and this of the flower, </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">And this the pale bole of the tree </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">Which watches its bough in a pool of unwavering water </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">In a land we never shall see. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">The thrush on the bough is silent, the dew falls softly, </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">In the evening is hardly a sound. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">And the three beautiful pilgrims who come here together </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">Touch lightly the dust of the ground, </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">Touch it with feet that trouble the dust but as wings do. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">Come shyly together, are still. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">Like dancers who wait, in a pause of the music, for music </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">The exquisite silence to fill. . . . </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">This is the thought of the first, and this of the second. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">And this the grave thought of the third : </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">'Linger we thus for a moment, palely expectant. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">And silence will end, and the bird </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">'Sing the pure phrase, sweet phrase, clear phrase in the twilight </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">To fill the blue bell of the world ; </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; margin-bottom: 10px;">
<span style="letter-spacing: 0.0px;">And we, who on music so leaflike have drifted together. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px;">
<span style="letter-spacing: 0.0px;">Leaflike apart shall be whirled </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px;">
<span style="letter-spacing: 0.0px;">'Into what but the beauty of silence, silence forever^' . . . </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px;">
<span style="letter-spacing: 0.0px;">. . . This is the shape of the tree. </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px; min-height: 13px;">
<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px;">
<span style="letter-spacing: 0.0px;">And the flower, and the leaf, and the three pale beautiful pilgrims ; </span></div>
<div style="font-family: 'Lucida Grande'; font-size: 11px;">
<span style="letter-spacing: 0.0px;">This is what you are to me. </span></div>
<div>
<span style="letter-spacing: 0.0px;"><br /></span></div>
<div>
<span style="letter-spacing: 0.0px;">-- Conrad Aiken</span><br />
<span style="letter-spacing: 0.0px;"><br /></span></div>
</div>
Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com2tag:blogger.com,1999:blog-315151022752951218.post-67474358006656006792012-10-07T16:09:00.004-05:002012-10-07T21:53:08.688-05:00Redefining Pink<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="background-color: white; font-family: 'Arial Unicode MS', Arial, Helvetica, sans-serif; font-size: 18px;">haze </span><span class="pg" style="background-color: white; color: #333333; display: inline; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; font-style: italic; font-weight: bold; padding-right: 3px;"><span id="hotword"><span id="hotword" name="hotword">verb</span> <span id="hotword" name="hotword">(used</span> <span id="hotword" name="hotword">with</span> <span id="hotword" name="hotword" style="cursor: default;">object),</span> </span></span><span class="secondary-bf" style="background-color: white; color: #333333; display: inline; font-family: verdana; font-size: 13px; font-weight: bold;"><span id="hotword" name="hotword">hazed,</span> </span><span class="secondary-bf" style="background-color: white; color: #333333; display: inline; font-family: verdana; font-size: 13px; font-weight: bold;">haz·ing.</span><br />
<br />
<div class="body" style="background-color: white; color: #333333; font-family: verdana; font-size: 13px; margin: 0em 0px 0em 0em; padding: 0px;">
<div class="pbk" style="font-size: small; margin: 0px; padding: 0px;">
<div class="luna-Ent" style="background-image: none; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 1em; margin: 0px; padding: 0px 0px 5px;">
<span class="dnindex" style="color: #7b7b7b; display: block; float: left; font-weight: bold; width: 28px;"><span id="hotword"><span id="hotword" name="hotword" style="color: #333333; cursor: default;">1.</span></span></span><br />
<div class="dndata" style="font-family: verdana; font-size: small; margin: 0px; padding: 0px 0px 0px 37px;">
<span id="hotword"><span id="hotword" name="hotword">to</span> <span id="hotword" name="hotword">subject</span> <span id="hotword" name="hotword">(freshmen,</span> <span id="hotword" name="hotword" style="cursor: default;">newcomers,</span> <span id="hotword" name="hotword">etc.)</span> <span id="hotword" name="hotword">to</span> <span id="hotword" name="hotword">abusive</span> <span id="hotword" name="hotword">or </span><span id="hotword" name="hotword" style="cursor: default;">humiliating</span> <span id="hotword" name="hotword" style="cursor: default;">tricks</span> <span id="hotword" name="hotword" style="cursor: default;">and</span> <span id="hotword" name="hotword" style="cursor: default;">ridicule.</span></span></div>
</div>
</div>
</div>
<br />
October has started to feel like a new form of hazing. Since the end of September everything you see -- from buses to billboards to Monday Night football to the grocery store -- shimmers in pink. You can "support breast cancer research" (so it is said) by purchasing everything imaginable and then a multitude of unimaginable things as well. Every year it gets worse.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4KxKf-EwE6OxLTff7Reum3xOlEPUkujN2yDKnhadfCbz9y5C0w_1S1fD7HsLXxFrkAkUlokKgY14QNcacKHU6uwft0kss2hXCCfZ1CurNyhN9TwUGvRA-TI7x6xz3ec-8yPCUYcjxGv9s/s1600/images-2.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4KxKf-EwE6OxLTff7Reum3xOlEPUkujN2yDKnhadfCbz9y5C0w_1S1fD7HsLXxFrkAkUlokKgY14QNcacKHU6uwft0kss2hXCCfZ1CurNyhN9TwUGvRA-TI7x6xz3ec-8yPCUYcjxGv9s/s1600/images-2.jpeg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br />
There are 37,000,000 listings for breast cancer<br />
awareness products. Don't buy it.</td></tr>
</tbody></table>
<br />
Just Google Breast Cancer 'Awareness Products. You could spend the rest of your life reading the lisings, about 37,000,000 results to be exact.<br />
<br />
The year I was diagnosed I spent the first day of October beginning my second course of chemotherapy. I was celebrating. Why? Because Taxotere was so much easier than FAC. Instead of a three-day infusion on a pump it was<i> only</i> an hour-long drip. That felt like vacation. I was celebrating because after six months I was half way through chemo, celebrating because after four surgeries and a life-threatening infection, I finally had enough energy to drive myself to MD Anderson. I no longer looked like a walking skeleton. I was celebrating because my hair had grown out and it looked cool, even though it was about to fall out again. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDIpKJc2UkM0-Sfpg-xeYXg23_UswxbDYITdU0xTuVKXxcFppKaIRvgEyaKFuiTB4WTDsc69z8rE_3UYpFXAHI0ejjlp2GAz65CM0JjqTilZKhG9J8m-rVGy14nWZOxABlezmE1vnLcPp_/s1600/IMG_0062.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDIpKJc2UkM0-Sfpg-xeYXg23_UswxbDYITdU0xTuVKXxcFppKaIRvgEyaKFuiTB4WTDsc69z8rE_3UYpFXAHI0ejjlp2GAz65CM0JjqTilZKhG9J8m-rVGy14nWZOxABlezmE1vnLcPp_/s320/IMG_0062.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Jody and Tyler McCready, who turned 18 October 5.</td></tr>
</tbody></table>
My celebration was not about pink. My celebration was about getting through cancer treatment one day at a time. I was celebrating because that's the way I roll. <br />
<br />
But that does not mean I am dishonest about cancer in general and breast cancer in particular. That doesn't mean I'm not deeply critical of consumerism masquerading as research, of flawed studies, of misinformation about breast cancer when and where and I find it. <br />
<br />
<div style="text-align: left;">
</div>
Plus as a patient among many the pink hoopla was embarrassing. There were thousands with cancer at MD Anderson who were NOT having parades in their honor. Those with blood and lymph cancers, colon, ovarian, uterine or lung carcinomas. Myelomas, sarcomas, glioblastomas. Women with those cancers had treatments as grueling and some with significantly more mortality. But they did not have a pink machine. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMreIrf8m6EJWXiJLVPVvVC9UQFC8jYdhuozaZkKWz6yihph1YWVbU4Z9PgH6ZV4NjwDflaLa5rBSlZwfq31kXxxrd2eCKYd709PjeAGPrV6U9yctozn9X3uMIzVahLZNhKBH4z8SBBdKe/s1600/images.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMreIrf8m6EJWXiJLVPVvVC9UQFC8jYdhuozaZkKWz6yihph1YWVbU4Z9PgH6ZV4NjwDflaLa5rBSlZwfq31kXxxrd2eCKYd709PjeAGPrV6U9yctozn9X3uMIzVahLZNhKBH4z8SBBdKe/s320/images.jpeg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Are you buying something you don't need?</td></tr>
</tbody></table>
We need to ditch the machine, redefine and be realistic about pink. A few thoughts:<br />
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<li><b>Relating to the Ribbon. </b> Each woman's perception of the pink ribbon is part of her story. There are 2.3 million breast cancer survivors and 2.3 million stories. Listen to them.</li>
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<li><b>Awareness vs. Education</b>: Have you been living in a yurt? People are aware of and affected by breast cancer, from cab drivers to elementary school children. What they understand about the disease itself may be something else entirely. That's our job as breast cancer advocates, to know the facts and pass them on. In the week following my diagnosis I thought I was getting a handle on what I needed to do and why. Then my oncologist presented a full-page treatment outline that ended with "five years of tamoxifen." Oh. For the archives the <a href="http://www.breastcancerdeadline2020.org/breast-cancer-information/31-truths/" target="_blank">National Breast Cancer Coalition</a> has an excellent series on the fact and myths of breast cancer. </li>
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<li><b>It's not just about white, educated professional women. </b> Sistas, both African American and Hispanic women get everything you do, plus. Both are characterized by late diagnosis. African Americana women often have more aggressive disease and cancer itself has now overtaken heart disease as the leading cause of death in the Hispanic population. If you do anything this month find out what is happening in underserved communities <b><i>where basic outreach still is essential. </i></b> This point is missing in pink discussions. There are cases where lives actually DO depend on getting women in for mammograms. That doesn't mean we stop working for better detection. <b><i>Breast cancer advocacy must move forward in a coordinated way: targeted outreach, targeted research, targeted education built on a foundation of mutual support and respect.</i></b></li>
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<li><b>Early detection isn't everything. Biology is. </b>Some 30 percent of all breast cancer cases will metastasize. Initial staging is one factor of many impacting breast cancer survivorship. Genomic science must continue to burrow into cancer biology -- triple negative and inflammatory breast cancer, reasons why some cancers are aggressive and others aren't. As a survivor this means I have a plan that I review yearly in MD Anderson's Survivorship Clinic and with my internist. My health and life depend on this. Intellectually I grasp that cancer can outwit our best efforts and adherence to recommended guidelienes. Instead of living like there's no tomorrow I live as if today is the best thing that's ever happened. Because it is.</li>
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<li><b>Stop racing for a cure. Let's start thinking about them, instead. </b>There isn't a cure. Eventually there will be genomic analysis of your particular tumor and an individualized plan developed to eradicate it. While the oncologist's toolkit is expanding today's kit will look rudimentary within another generation. The biology of breast cancer, and the mutations giving rise to cancer, is in some ways in its infancy. Every layer of science explained reveals yet another layer of complexity underneath. <b>So we can not, must not, fritter away research dollars.</b> Make your voice heard in your congressional representative's office and make it known repeatedly that you support the current level of funding at the <a href="http://www.cancer.gov/" target="_blank">National Cancer Institute</a>. Keep in mind that one in two men, and one in three women will be diagnosed with cancer over the course of their lifetime. </li>
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<li><b>The power of mutual respect. </b>My cup of tea might be your cup of coffee. You might support an organization I do not, but that doesn't mean we don't share a mutual goal and support each other's experience. Because I am with you on your journey, in supporting your hopes and understanding your fears. My feelings about pink are just that: feelings. Opinions. Many writers take on pink - look at the writers of the <a href="https://www.facebook.com/BCConsortium" target="_blank">Breast Cancer Consortium</a> and the work of my <b><a href="http://www.symplur.com/healthcare-hashtags/bcsm/" target="_blank">#BCSM</a></b> co-moderator <a href="http://www.awesomecancersurvivor.com/2012/10/lawsuits-for-the-cure-from-the-archives.html" target="_blank">Alicia Staley.</a> Join us on one of our Monday chats for the input of <a href="http://www.cfbci.com/index.html" target="_blank">Deanna J. Attai, MD, FACS</a> and the other medical oncologists, radiologiss and surgeons who routinely join our chat. </li>
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<li><b>Pretty in Pink? Not always. </b>Some 30 percent of all breast cancers will metastasize. On <a href="http://mbcn.org/developing-awareness/category/mbca-day/" target="_blank">October 13, Metastatic Awareness Day</a>, we will recognize women affected with Stage IV cancer. This is where attention is needed. If you haven't, check out these organizations: <a href="http://www.metavivor.org/" target="_blank">Metavivor,</a> <a href="http://mbcn.org/" target="_blank">Metastatic Breast Cancer Network</a>, <a href="http://www.tnbcfoundation.org/uncommonknowledge_prijatel.htm" target="_blank">Triple Negative Breast Cancer Foundation</a> and the <a href="http://www.eraseibc.com/" target="_blank">Inflammatory Breast Cancer Foundation</a>. Take a look at how these groups are approaching metastatic disease. The days that these women feel isolated and cut off from the mainstream breast cancer culture - are over. We all know too many women with disease recurrence. We are not leaving them behind.</li>
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<li><b>Global Awareness. We need to expand our global breast cancer conversation. In 2010 m</b>ore than 50% of the world's deaths from breast cancer occurred in developing, not high-income nations, according to Benjamin O. Anderson, MD, discussing The World Health Organization's Initiative for Noncommunicable Diseases last month at ASCO Breast in San Francisco. For many countries pink isn't about mammography, which may not be practical, but what kind of intervention will make the greatest impact in decreasing mortality immediately. </li>
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The first week of Breast Cancer Awareness has ended. Sometimes it reminds me of how Christmas has been commercialized - it starts early, is in your face, and makes myth of the experience itself. It can trivialize a serious disease, divert discussion and dollars. I happen to think if we continue to act fearlessly - as friends, as survivors, advocates and activists - in bringing our intellectural collective to bear on the issue we can change the landscape for your daughters. Last week I was stunned to hear someone on our weekly #BCSM chat express the thought that we - co moderators Alicia Staley and Deanna Attai, MD and I -- had a political agenda. If having an anti-cancer, evidence-based, pro-survivorship, community-based agenda is political then yes, I'll be the first to print campaign buttons and banners. On my dollar. Not from pimping cancer.<br />
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Here's looking at you, kids.</div>
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This past week we were shocked and saddened to hear of the recurrence of Lisa Adam's cancer. If you are not familiar with her or her story please read: "<a href="http://lisabadams.com/2012/10/05/what-should-i-do-when-i-get-diagnosed-with-stage-iv-some-starting-thoughts/" target="_blank">What to Do When You Are Diagnosed with Stage IV Cancer."</a> Lisa, her husband Clark, their children and friends are in my thoughts and prayers. </div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com17tag:blogger.com,1999:blog-315151022752951218.post-48001603410885667912012-09-28T19:57:00.000-05:002012-09-28T20:01:40.802-05:00Breast Cancer: Ready for Prime Time <div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Izzie Stevens/Grey's Anatomy<br />
(great sheets, eh?)</td></tr>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0px;">Cancer in prime time television is a mixed bag. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Snarkologists will recall the amazing case of the beauteous Izzie Stevens on <i>Grey's Anatomy</i>. Diagnosed with melanoma that had spread to her brain (clearly child’s play), she was given only a 5 percent chance of survival — and survive she did. <i> </i></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>After that there’s no place to go but up, so when I heard that the writers of <i>Parenthood </i>were bringing breast cancer into the lives of Kristina and Adam Braverman, I pounced. The show has taken on autism, substance abuse and adoption in past seasons.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="letter-spacing: 0.0px;"> <i>Parenthood</i> is a multi-generational saga where all the adult children and their spouses, ex-spouses, live-ins, children and </span><span style="letter-spacing: 0px;">soon-to-be fur children live in the same town as Mom and Dad, just like the rest of you do. In my family everyone moved straight out of Dodge after high school, which is why my family has not been and never will be the model for a television show. </span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>No matter. A typical <i>Parenthood </i>show zooms in and out of each character's world and includes “real life” situations like freak-outs over Dad’s failure to renew his driver’s license, children with stomach aches the first day of school, work woes for the single parent Sarah with Ray Romano in a new career low as her photographer boss, anal over-achievers who schedule everything on their iPhones and sub-optimal, under-achieving ones, who laugh at the anal ones yet forget to pick up the kid at school. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Just my kind of show. Now bring on the cancer. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Which is exactly how it happens in the real world. One moment you’re swimming along in the stream of life then in the next cancer drops into your world like an atomic bomb. Your thinking explodes into a million bits, while at the same time, you strive mightily to keep your formerly normal face in place.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>In the lull before the storm Kristina and Adam argue in bed about getting a dog. I swear this is a conversation DH and I had years ago, before Fur Child #One.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>“He’s going to crap all over the place,” Adam says.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>“So what? So do you.” So much for wifely humor. “I’m teasing.”</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0px;"> By the time that episode is finished, we see Adam and the kids looking at puppies when Kristina drives up after a medical appointment that clearly went the wrong way. She knows what we know. This is when we see, in slow motion, how their world is about to be turned upside down. You can see the knowledge that his wife has just been diagnosed with cancer sinking into Adam’s face, bit by bit.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span><i>Is that what it looked like, I wondered.</i> </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>It certainly felt real. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"> <span class="Apple-tab-span" style="white-space: pre;"> </span>What didn’t feel quite as accurate were scenes with the two different physicians, stereotypes squared, that Kristina and Adam consult. One is abrupt, hurried, obnoxious. He tells Kristina she has an early stage breast cancer that should be removed <i>right away</i> and oh, by the way, he has an opening at 8 am Friday. Color us surprised.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span> His polar opposite is a female physician with a consulting room straight out of <i>Architectural Digest.</i> Oh, for that sofa. She’s on emote control, empathy and confidence reverberating in equal parts. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;">In the interim, Kristina has coffee with another breast cancer patient, who seems to know exactly what Kristina needs to do and tells her so in no time flat.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span><i>What? Really? </i></span><span class="Apple-tab-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; letter-spacing: 0px; white-space: pre;"> </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; letter-spacing: 0px;">This is when I remember it’s television. The support of survivors is essential, but if someone I’d just met was in my face to that degree in the week following my diagnosis she would have been talking to the hand. My ears would have sewn themselves shut.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>All these nuances. There is never going to be a television portrayal that really “gets” cancer. Every year some 230,000 women are diagnosed with invasive breast cancer. That means that are that many stories plus those of their friends, families, and the people that care for them. Everyone has their take on what is real about cancer.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>There are two thing though, that need to undergo a seismic change across the cancer culture, from co-survivors to educators to nurses to social workers to doctors. The first is the notion that the internet is armageddon.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>“You’re not doing what the doctor said you’re not supposed to do are you,” Adam says when he finds Kristina web surfing. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>The internet is not the enemy. The internet is not going to create fear in a patient. The fear following a cancer diagnosis is part of assimilating new and difficult information. Patients are going to surf the internet for medical information in the exact same way that teenagers are going to pick pimples. <i>It is going to happen.</i> They are especially guaranteed to search, in fact, in absence of other information. If the physicians we turn to aren’t routinely sending their newly diagnosed patients home with a list of excellent web sites (that is if the physician doesn't have his or her own!) on breast cancer, and many helpful books as well, then part of the job has gone undone.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>The other seismic shift, equally shared in medical culture, is how to play the role of positivity in dealing with illness. Most women diagnosed with breast cancer aren’t feeling sick to begin with. They walk from the land of the well into the land of the bald, the nauseated, the medical record number, the breastless and the reconstructed. Then they are encouraged to stay positive about all this, as if failing to do so will somehow impede their survival. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Think about that. It makes no sense.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>This plays out as Adam and Kristina navigate the first murky, anxious days following the consults. When he finds her surfing the web, he reminds her that she needs to stay positive. Here’s what happens later. This is scene scripted from any cancer patient’s life. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>To the writers and cast of Parenthood? Well done.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; letter-spacing: 0.0px;"><i><span class="Apple-tab-span" style="white-space: pre;"> </span><a href="http://www.blogger.com/%3Ciframe%20id=%22nbc-video-widget%22%20width=%22560%22%20height=%22315%22%20src=%22http://www.nbc.com/assets/video/widget/widget.html?vid=1418581%22%20frameborder=%220%22%3E%3C/iframe%3E">“You just have to let me be scared.” </a></i></span><br />
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com12tag:blogger.com,1999:blog-315151022752951218.post-33400080855964535122012-09-17T19:31:00.000-05:002012-09-25T13:25:12.189-05:00Auction Day <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="letter-spacing: 0.0px;">A week ago I woke up in western Iowa, on the northern edge of town, to an absolutely picture-perfect morning. It was the kind of day you want to steal. I was at my father-in-law’s home and we were about to watch a way of life, part of an era, evaporate in front of our eyes.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>It was auction day. We had already moved my 89-year father in law into a senior living apartment two days before. The things various family members wanted, a particular rocking chair or trunk, were packed in their cars, trucks, and trailers. And beginning at 8 am sharp, the crew from the auction company carted out everything that remained from my in-laws’ 3000 sq. ft. house, from attic to basement, soup to nuts. By the time people started to gather, everything would be neatly stacked and arranged on tables that extended some 100 feet down the driveway, where a 1950’s red formica and aluminum breakfast table that would have been perfectly at home on the “Leave it to Beaver” set was the first to go.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>In smaller midwestern communities and towns, where life moves just that much slower, auctions are social events. Even the friendly hotdog vendor showed up. So did his friends. Neighbors stopped by. Some were curious. Some were peeved that they’d never seen my father-in-laws workshop or that the drill press was already gone. Friends of the auction crew came. Everybody knew someone. <span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="letter-spacing: 0px;">By the time the afternoon was out every shred of paper, furniture, plates, tools, even Mason Jars and thousands of kitchen and carpentry doo-dads would be gone.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>My in-laws made things with their hands. Literally. After having the house framed, my father-in-law did all the finishing work himself. They gardened. My mother-in-law canned the tomatoes and froze sweet corn. Her college degree was in home economics, and items assembled on the tables reflected that. Milk glass plates and cups for bridge parties. Boxes of old Simplicity patterns. Stacks of matching linen napkins, the creases from ironing still in place. They understood their time, their place and enjoyed their lives.</span></div>
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<span style="letter-spacing: 0.0px;"> With one strange exception, something my generation and those following, will never understand completely: they also never threw anything away. The products they bought had been built to last. And they did. Consequently a 1950‘s vegetable ricer, with a wooden pestle, has now found a new home. Someone bid on it and carted if off that afternoon. And so it goes.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Nostalgic? No, not at all. LIfe is constantly cycling around us. Everything has its season. But it is unusual, to see the items of anyone’s life laid out for all to see in this fashion. </span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>As we started the drive back to Texas the next morning the wind kicked back up again. Gusts came across rolling fields that looked like rippled quilts. I’ll remember that last glance, the sharp blue sky, terraced fields stretching forever, and one one small cloud, adding a spec of perspective to all that remained.</span></div>
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Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com7tag:blogger.com,1999:blog-315151022752951218.post-22516544718679907812012-08-02T18:25:00.000-05:002012-08-02T18:26:13.053-05:00"Things They Carried"<div dir="ltr" style="text-align: left;" trbidi="on">
You'll have to excuse me. I'm having a technological moment. Moments, more accurately.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfcRB-fhu40m7t90wsbaewK6ElOzqqjsY664U5YShNJlDyihwXxAqYXJu9rHKvvmtT4wbYTFWm60l709N92RZ9kX15L699257A0wEzayKWQWdHuHCezBY7xRjw9qLlfACzkababZ-Tm3-u/s1600/IMG00994-20120802-1525.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfcRB-fhu40m7t90wsbaewK6ElOzqqjsY664U5YShNJlDyihwXxAqYXJu9rHKvvmtT4wbYTFWm60l709N92RZ9kX15L699257A0wEzayKWQWdHuHCezBY7xRjw9qLlfACzkababZ-Tm3-u/s320/IMG00994-20120802-1525.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">New laptop in place. Yes, two keyboards. Don't ask.</td></tr>
</tbody></table>
Since returning home last Friday evening after more than a month on the road I've truly been challenged: my laptop wheezed its last while I was gone. You know the spear that pierces your heart when you realize that what separates you from all your files is six pounds of hard, molded steel and huge swipes of your credit card. A happy camper I wasn't. I was literally standing on the power button as if fierce thoughts might spark ignition.<br />
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And isn't it funny (yes, just friggin' hilarious, thank you very much) how things happen in tandem? My laptop blew. So did my electric truthbrush. For real. Then today? The digital scale. Voila! My belief that all things work for the greater good was restored.<br />
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Under normal circumstances I wouldn't have mentioned the scale but last week I was at Project Lead, a program of the <a href="http://www.breastcancerdeadline2020.org/homepage.html">National Breast Cancer Coalition</a>, six days of intensive, hands-on study of the science of breast cancer, epidemiology and public policy. We listened to phenomenal, challenging lectures, snacked on fresh fruit, went to the next lecture, grabbed a cookie, broke into awesome study groups, nibbled on chocolate. Then we went to lunch before the next lecture started. You get the picture. It was the best of college on steroids. So outrageously good. Before Project Lead, I traveled with <a href="http://livestrong.org/">Livestrong </a>to lobby with OVAC - <a href="http://www.ovaconline.org/">One Voice Against Cancer</a> - and at the end of June I was the social media "voice" for a five-day conference in Houston on health disparities - <a href="http://www.healthequity12.org/">HealthEquity12 </a>- in cancer and other chronic diseases. I was there when the Supreme Court decision on the Affordable Care Act was announced.<br />
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This brings me back to where I started. Even though I've been away, and traveled great physical and mental distances during the past month, the essentials are still the same. I think of all of you daily. I always carry my IPAD now, which contains a photo stream of shots compiled for a talk I gave on cancer survivorship. Within that stream are photos of Betsy, and Rachel, and Susan - beloved women who died this past year. Even if it's a quirk, or an illusion, simply having those photos 'on tap' mean the world to me. I can still see their digital imprint even though I will not see them again.<br />
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The writer John Cheever, that sublime polisher of the short story, once said after he lost some manuscripts that he just sat down and started another one. That is art. And perspective. Wisdom. My world certainly won't collapse if my Microsoft Outlook files can not be retrieved. I can re-gather that information. But my world would not have been the same if I hadn't known Rachel, and Betsy, or followed Susan through her treatment for inflammatory breast cancer. My world would not be as meaningful had I not taken up this cause I'm immsered in now. This is what what I'll be doing for the rest of my life. Because I carry them with me. And always will.<br />
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<b>The Things They Carried </b>is a brilliant short story and collection by the writer Tim O'Brien about a platoon of soliders in Viet Nam. I originally read it in Esquire, then in a collection edited by Ann Beattie (<b>The Best American Short Stories, 1987</b>). I remembered this powerful story today and this coming Monday, August 6, we'll use the theme of "things we carry" in our weekly #BCSM discussion on Twitter. </div>
</div>Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com15tag:blogger.com,1999:blog-315151022752951218.post-72379334599104507782012-06-13T21:10:00.001-05:002012-06-13T21:10:04.300-05:00Much Ado About a Lot<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">An issue affecting the breast cancer community came across my desk
yesterday. Take a look at this talk by Ivan Oransky, MD, director of Reuters
health, that was posted on Gary Schwitzer's <a href="http://www.healthnewsreview.org/2012/06/lessons-from-moneyball-dont-swing-at-every-health-care-pitch/">Health
News Review</a> June 6. It’s a puzzling talk about overtreatment and
medicaliazation that takes a surprising turn toward the end.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> Medicaliazation is just what it
sounds like - taking normal life processes like menopause, and building its
symptoms into a 'condition' that pharma then develops medications to
treat. Medicaliazation leads to the television and magazine ad campaigns
you know and love. My favorite is the perky Sally Fields, of "YOU LIKE
ME" Oscar fame, waxing rhapsodic-ally about <a href="http://news.consumerreports.org/health/2009/04/sally-field-and-boniva-misleading-ad-boniva-commercial-advertisement-for-osteoporosis-drug.html">Boniva</a>,
as though taking biophosphonates were as easy as having a picnic with the
grandkids. They aren't. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> In his talk
Dr. Oransky points out approximately 270 women have to be treated for three
years with biophonates to prevent one bone fracture, a fact I was glad to know
but not necessarily a stunning example. Some better ones are described in Otis
Brawley's book<a href="http://www.amazon.com/How-We-Do-Harm-America/dp/0312672977">, How We Do
Harm: A Doctor Breaks Ranks About Being Sick in America.</a> His
discussions of well-insured cancer patients being treated with "the latest
and greatest" (expensive) chemotherapy drugs in private clinics will curl
your toes. That is overtreatment. It is overtreatment when patients demand
unproven therapies and physicians, who don't want to lose that patient to
someone else, acquiesce. Prescriptions are written. There are a number of
yearly lab tests for otherwise healthy adults that are now considered to be
excessive. These are the examples of medical excess that clog the financial
arteries in our health care system. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> But then suddenly, and I can
only conclude deliberately, since this was a Ted talk and not an impromptu chat
around the water cooler, the word <a href="http://en.wikipedia.org/wiki/Cancer_survivor">previvor</a> became
part of the conversation. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> That Dr. Oransky finds <b>some</b><i>
</i>"pre-conditions pre-posterous" is not a point of contention to
me. I get that. Journalists, as he points out, medicalize different risk
factors all the time. You can read those daily on any news aggregator and worry
yourself sick. Some of the conditions Dr. Oransky cites, like subclinical acne
(um, the absence of pimples in case you were wondering) are funny. Who needs
navel gazing? As a woman who has had cancer - that uninvited, sudden and
disruptive guest – my own patience with disease mongering is nonexistent.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> But I don’t
personally group navel gazers, medicalizers, hypochondriacs (might as well say
that, too) or the “worried well” in the same category as women at risk for
hereditary breast and ovarian cancer. No way. Some call it “hereditary
breast and ovarian cancer (HBOC) syndrome. That is distinctly and completely
different. Notice that I also didn’t include the word previvor, coined by the
advocacy group <a href="http://www.facingourrisk.org/">FORCE</a>, in my
distinction, for reasons I hope to make clear. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> No one is destined for
cancer and everyone, by nature of being alive, is at risk. The only sure risk
factors for breast and ovarian cancer for those <b>without</b> a mutation are:
1) being a woman with both breasts and ovaries and 2) growing older. From a
medical standpoint, since 'pre' means before, does the word previvor denote the
fact that cancer is in fact, inevitable? As Dr. Steve Tucker pointed out
yesterday on Twitter, a mutation in one's DNA does not a disease state make. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> Not everyone
who has a BRAC1/2 mutation will develop breast cancer, but a good percentage of
them, over the course of a lifetime, will. That number ranges from 60%, or five
times the risk as that of the average woman, according to NCI. <a href="http://www.cancer.net/patient/Cancer+Types/Hereditary+Breast+and+Ovarian+Cancer">Cancer.net</a>
lists that risk in a range from 50 – 80% and Myriad Genetics, the company that
holds the patent on BRAC testing, lists the risk factor for breast cancer from
56-87% (before age 70) on its website <a href="http://www.bracnow.com/considering-testing/hboc-basics.php">bracnow.com</a>.
<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> If the point
of the talk was <b><i>not</i></b> to take issue with the women who carry this
deleterious mutation, whether they call themselves previvors or WWDM (women
with deleterious mutations), it wasn’t readily apparent to me when I watched
the clip. In the conversation that resulted on blogs, however, and not the Ted
Talk itself, Dr. Oransky later wrote, </span><span style="background: white; color: #222222; font-family: "Times New Roman","serif"; font-size: 12.0pt;">“The
problem is that there are hardly any people alive who do not have ‘some other
predisposing factor’ for cancer, which makes FORCE’s definition far too broad
to be useful. That was my point.”<o:p></o:p></span></div>
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Well, true enough. We can begin to split hairs all day long. It seems
that the phrase “some other predisposing factor” is the issue. <o:p></o:p></span></div>
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<span style="background: white; color: #222222; font-family: "Times New Roman","serif"; font-size: 12.0pt;"> Is
an organization that supports women with a heightened risk for cancer, as
defined through genetic counseling (which FORCE recommends) disease mongering?
Of all the nonprofits out there with curious agendas this is not one I would
have chosen. The irony to me is how a group working proactively to grapple with
and reduce their risk factors for cancer is held up in the spotlight in the
first place. There are any number of nonprofits chronicled by breast cancer
advocates that are far more slanted in their approach and promotion of
mammography as the end all to be all, even though experts will tell you
privately that if a mammogram isn’t digital you might as well not even have
one. <o:p></o:p></span></div>
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<span style="background: white; color: #222222; font-family: "Times New Roman","serif"; font-size: 12.0pt;"> This
TedTalk, and the conversations that came my way have given me much to think
about. So you understand what I’m talking about here, I encourage you to the listen
to the talk. Here are the words that stopped me cold: <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> “The good news is
if you can survive to the end of my talk … you will be a previvor (audience
laughter). Now, I made up pre-death….I didn’t make up previvor. Previvor is
what a particular cancer advocacy group would like everyone who just has a risk
factor, but hasn’t actually had that cancer, to call themselves. You are a
previvor. We’ve had HBO here this morning, and I’m wondering if Mark Burnett is
anywhere in the audience… I’d to see a reality TV show called Previvor.
Anyone who gets a disease is off the island.”<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> </span><span style="background: white; color: #222222; font-family: "Times New Roman","serif"; font-size: 12.0pt;">Disease mongering is one thing. Holding up an advocacy
group for ridicule? Whether intentional or not?</span><span style="font-family: 'Times New Roman', serif; font-size: 12pt;"> You decide.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif;">Additional links: </span><a href="http://theoranskyjournal.wordpress.com/2012/06/05/pre-games-previvors-and-pre-death-my-tedmed-talk-on-what-medicine-can-learn-from-moneyball/">http://theoranskyjournal.wordpress.com/2012/06/05/pre-games-previvors-and-pre-death-my-tedmed-talk-on-what-medicine-can-learn-from-moneyball/</a></div>
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<a href="http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/">http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/</a>
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I am compiling additional posts and will add them here. Right now it's late Wednesday evening, and I have more work to do. We've just learned that Susan Love, MD announced a diagnosis of leukemia. In l998 when I was diagnosed, her book on breast cancer was my guidebook. I wish her all the best and am grateful for her continued advocacy on the behalf of women with breast cancer. </div>
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</div>Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com26tag:blogger.com,1999:blog-315151022752951218.post-61165494793699525342012-05-17T08:14:00.000-05:002012-05-17T08:14:49.468-05:00Between the Headlines. You Choose.<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Verdana, sans-serif;"><span style="text-indent: 0.5in;">While
dire statistics about </span><a href="http://www.salon.com/2012/05/04/breast_cancer_is_rare_in_men_but_they_fare_worse/singleton/" style="text-indent: 0.5in;">male breast cancer</a><span style="text-indent: 0.5in;"> may have sounded like the big story from the American Society of Breast
Surgeons’ (#ASBrS2012) annual conference early in May, there were others with
more far-ranging consequences that didn’t hit the wire.</span></span></div>
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<span style="font-family: Verdana, sans-serif;">The
name of the game for any woman facing breast surgery now is still <a href="http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=47842">ACOSOG Z11</a>,
the sea-changing clinical trial which showed that extensive lymph node surgery
is no longer needed for women who have microscopic cancer cells in one or two
lymph nodes. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Verdana, sans-serif;">“There’s
still a need to educate surgeons and patients that axillary dissection is
unnecessary in many patients who have positive nodes (1-2) and who are
undergoing lumpectomy and subsequent whole breast irradiation plus chemotherapy
for breast cancer,” says Deanna Attai, MD, FACS, and co-moderator of the weekly
#BCSM chat on Twitter.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">With
ACOSOG Z11 one of the pillars of breast cancer treatment, axillary lymph node
dissection (ALND), took a serious hit.
Physicians know now that biology combined with staging predicts
long-term survival in breast cancer patients, not just the stage at
diagnosis. This study will save
thousands of women from painful, disfiguring surgery and its attendant
life-long risk of lymphadema. <a href="https://www.acosog.org/">ACOSOG,</a> a clinical study group of the American College of
Surgeons established by the National Cancer Institute, is also looking at
whether or not the same survival benefit applies to women undergoing mastectomy
instead of lumpectomy as part of their treatment. It seems logical to expect that it will. <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"> But to date no studies have been
done to show whether or not women who receive accelerated partial breast
irradiation, or APBI, could also bypass extensive lymph dissections. Yet. <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"> APBI, a form of brachytherapy, is
one of the newer kids on the block in treatment. In brachytherapy a device is implanted within
the breast next to or within the original tumor site. This is done on an outpatient basis after
pathology reports confirm that surgical margins are clear and the scar from the
lumpectomy incision has healed.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"> Brachytherapy also has attracted
some controversy. Last December at the
San Antonio Breast Cancer Symposium researchers from MD Anderson said that
bracytherapy<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"> was associated with higher rate of later
mastectomy, increased radiation-related toxicities and post-operative
complications, compared to traditional whole breast irradiation.<o:p></o:p></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPtFV-njjhpObdWTVgwf0KjsWDgCuAyJoG_9WVolWCDGvWIcz9Pxr2t-tJue6aGF_SbJDk5ZE2qUG0olek0c1SvuN_Vre10rqqISMJ7jYvrS6w8wymoxj1JDIRBbItyrRC_EiIzlMYaT7Y/s1600/Confusion+images.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPtFV-njjhpObdWTVgwf0KjsWDgCuAyJoG_9WVolWCDGvWIcz9Pxr2t-tJue6aGF_SbJDk5ZE2qUG0olek0c1SvuN_Vre10rqqISMJ7jYvrS6w8wymoxj1JDIRBbItyrRC_EiIzlMYaT7Y/s1600/Confusion+images.jpg" /></a></div>
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<span style="font-family: Verdana, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">
Then on May 2, the same day the ASBS conference opened, I saw this JAMA
article </span><a href="http://jama.jamanetwork.com/article.aspx?volume=307&issue=17&page=1827"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial;">“Association
Between Treatment with Brachytherapy vs. Whole –Breast Irradiation and
Subsequent Mastectomy….”</span></a><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"> with headlines like this “More Women Need
Breasts Removed” right on its heels.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">Coincidence? Probably. Soothsaying has never been one of
my skills. But note that a trial ASBS presented,
</span><a href="https://www.breastsurgeons.org/presskit/docs/2012_BRACHYTHERAPY.pdf"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial;">“Brachytherapy
as Effective for Local Breast Cancer Control as Whole Breast Irradiation</span></a><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">”
wasn’t released until May 4, two days after the JAMA article appeared.<o:p></o:p></span></span></div>
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<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">There’s a lot to say.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">In both cases, the retrospective data
analyzed by the MD Anderson group or the Mammosite® trial reported by the ASBrS,
survival was NOT adversely affected by the use of brachytherapy or APBI in
women with early stage breast cancer who had been treated with lumpectomy. In other words, a woman does not increase her
risk of death in choosing between the two.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">What the JAMA issue
does not analyze (nor could it) is the best candidate for the short-term course
of radiation. The JAMA data was compiled
from an analysis of Medicare claim forms (not medical records) of 92,735 women
– the average patient age was 74 – treated between 2003 and 2007. And while the potential risk of mastectomy in
patients treated with brachytherapy echoed loudly in headlines what were the
actual numbers? <o:p></o:p></span></span></div>
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<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">For older women with
early breast cancer, some 3.95, or close to four percent were more likely to
have to undergo a mastectomy vs. 2.18 percent undergoing whole breast
radiation. Granted, if you are the woman
in the differing 1.77 percent having to undergo a mastectomy after prior
lumpectomy and APBI would be difficult yet the inference, that the subsequent
mastectomy was related to brachytherapy cannot be inferred from claims data.
The information isn’t complete. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">Another question is
how many women within that 3.95 percent had cancer recur close to the original
tumor? That is the million dollar question and what only trials can determine.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">Dr. Len Lichtenfeld,
deputy chief medical officer of the American Cancer Society said </span><a href="http://abcnews.go.com/blogs/health/2012/05/01/brachytherapy-targeted-breast-cancer-treatment-comes-with-risks/"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial;">here</span></a><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">,
“The question has always been whether the use of these newer techniques has the
same benefit of treating those silent areas that we know exist in other parts
of the breast.” <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">The great majority of
local recurrences actually occur within one centimeter of the original tumor,
Dr. Attai said. In the ASBS study, seed
radiation via MammoSite® (the implanted device that delivers the radiation) is <i>as effective as</i> traditional or whole
breast radiation in preventing local recurrence in a subset of patients with early
breast cancer. These patients have now
been followed for five years. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">
“Right now offering APBI outside of a clinical trial is only recommended
for women </span><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial;">older than age 45-50, with tumors
<3cm, clear margins, and negative lymph nodes,” Dr. Attai said. “It will remain to be seen if factors such as
tumor grade, ER/PR and Her2/neu status, and other factors are important in the
patient selection process.” <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;"> <b>Bottom line:</b> if you are currently considering
brachytherapy carefully research both your surgeon and radiation oncologist.
You need to ask pointed questions. Accelerated radiation, delivered twice a day
for five days as opposed to 30 – 33, is a great deal more convenient for
working women. It also delivers less ionizing radiation to the surrounding
tissue -- remaining breast tissue as well as ribs, lung and heart -- than whole
breast radiation. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;"><span style="font-family: Verdana, sans-serif;">It’s important that
you know <i>what device the surgeon uses</i>
(whether MammoSite® or SAVI or Contura) and her/his experience with it. One of the coolest things I ever encountered
in my own ‘ask the doctor journey’ was when I was considering reconstructive
surgery and asked the plastic surgeon how many (free) flaps he’d lost. Without missing a beat and not minding the
question at all he simply said, “none.” <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Verdana, sans-serif;"><span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial;">But you have to ask.
You also need between the headlines for the information you need to make
critical decisions about radiation. Shorter-term
has its own set of side effects (physician skill is key) and benefits – better
cosmetic outcome and skin damage in most cases. As with any newer procedure a
surgeon’s training and experience are the best predictors for the best possible
outcome. In essence, APBI with
MammoSite® is shown as effective as conventional radiation for women with some
early stage breast cancer. </span><span style="color: #cc0000;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"> “MammoSite was the first device
approved and has the largest amount of associated data. Newer devices allow us
to better sculpt the radiation dose and minimize excessive exposure to the
skin, ribs and lungs, and potentially making this treatment available to a
larger number of women,” Dr. Attai said.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"> Keep asking your questions. Talk back to the headlines until you’re
comfortable that you’ve gathered all the information you’ve needed for the best
possible cancer treatment. I think that
with the right surgeon, APBI is an excellent option. But you have to know it’s available, to even
choose.<o:p></o:p></span></div>
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<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: Verdana, sans-serif;"># # #<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">1) May 7, 2012
Tweetchat:</span><span style="font-family: Verdana, sans-serif;"> </span><a href="http://hashtags.symplur.com/healthcare-hashtag-transcript.php?hashtag=BCSM&fdate=05-07-2012&shour=18&smin=0&tdate=05-07-2012&thour=19&tmin=15&ssec=00&tsec=00&img=1" style="font-family: Verdana, sans-serif;">Findings
from the ARBrS2012 Conference</a></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">2) American Society of Breast
Surgeons: <a href="http://breastsurgeons.org/statements/PDF_Statements/APBI.pdf">APBI
Selection Criteria</a> <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>Disclosure: </i> <span style="font-size: small;">I am a patient liaison for the American
Society of Breast Surgeons, a voluntary advocacy role. I was not asked to nor did I accept any
payment for this article. </span>But I did ask
questions because hearing both sides of the story, especially in regard to
breast cancer therapies, is always important to me.</span><span style="font-size: small;"><o:p></o:p></span></div>
</div>Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com12tag:blogger.com,1999:blog-315151022752951218.post-31875470512924644842012-05-07T18:23:00.002-05:002012-05-09T17:07:59.388-05:0048 Hours: My Life in a Clinical Trial<div dir="ltr" style="text-align: left;" trbidi="on">
<i>(Note: I'm back. I've been away longer than I anticipated for a cycling vacation with the girls and a family wedding in Seattle. But I've been on Twitter and #BCSM Monday evenings. I hope you have been too. Now that Houston's notorious summer weather is returning, I'm back in the writing swing.)</i><br />
<i><br /></i><br />
<b>What if? </b><br />
<b> </b> What if, once you turned 50, you could bypass the well-known and dreaded prep for <a href="http://www.cancer.gov/cancertopics/factsheet/detection/colorectal-screening">colon cancer screening </a>with something much simpler, and much easier?<br />
What if that test were as simple as a blood test?<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAyY6Ef5MpeQb2aLq7vpJTHAEoUyKnJ8H8sciQy1reqcYyOHJbkOJYtl9Glip8IckzlIzZ-vqQRCeerhkcg6j1CjTTxmnRFL9o2_fYeC3j5ljT-6D70zjW2SnwXYdsxmSlklKKlcdUQsRv/s1600/PoopKit.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAyY6Ef5MpeQb2aLq7vpJTHAEoUyKnJ8H8sciQy1reqcYyOHJbkOJYtl9Glip8IckzlIzZ-vqQRCeerhkcg6j1CjTTxmnRFL9o2_fYeC3j5ljT-6D70zjW2SnwXYdsxmSlklKKlcdUQsRv/s320/PoopKit.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of my 'homework.'</td></tr>
</tbody></table>
What if the only thing standing between that possibility and reality were healthy volunteers (that would be us, friends) who could spare a a few hours and a few poops to participate in a clinical trial?<br />
Sigh. Yes. I said poop.<br />
OK, I said a few poops.<br />
Let's use our inside, adult voices now. All I want is for you to use whatever word you need to keep reading. For most people shit happens daily. For too many, so does colorectal cancer, the third largest cancer killer in our country. It can be readily detected - and cured - long before invasive cancer has developed.<br />
<br />
Here's what happened. I was on deck to have a follow-up colonoscopy this year. My first was ten years ago when I finished breast cancer treatment. Ever since my diagnosis I thought the topic of a clinical trial would be part of treatment at MD Anderson. Even if you're willing, <a href="http://www.curetoday.com/index.cfm/fuseaction/article.PrintArticle/article_id/1298">finding the right trial is anything but easy.</a> Until last week.<br />
The researchers found me. There was the first surprise. And they waited for me, and not the other way around, while I was meeting with a nurse practitioner to discuss my upcoming colonoscopy. After all, I needed to select my preferred flavor of
<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000087/">GO-Lytely</a> (honestly, who could you make that word up?) and anesthesia, since something other than "JustKnockMeOut" was required for the orders.<br />
The <a href="http://clinicaltrials.gov/ct2/show/NCT01511653?term=edrn&rank=2">trial,</a> as you've already guessed, will test whether or not a proprietary biomarker in blood, urine, and stool samples can accurately predict the presence of <a href="http://www.cancer.gov/cancertopics/types/colon-and-rectal">adenocarinoma</a>, the most common form of colorectal cancer. This is a ten-center project sponsored by <a href="http://edrn.nci.nih.gov/">NCI's Early Detection Research Network</a> that seeks to accrue 6000 patients over the next three years. Let's say that everything works out, awesomely and wonderfully. Even with that, the earliest the news would hit the public eye through papers, conferences and then to the media would be five years. That's science. And if it doesn't work out, if the hypothesis fails, the only time you'll hear about this is possibly now.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbSLlyNr23JUCtPirvJcWZxy0bjgxCt4jLqPOGGaXpz37-q-SxPaN68kC9-BVNR4x6YhSAOTSm1k5msm3jiKCkN1RsVCBrTfixf4yR9Fpyk847dTVFGKvEZnbh-tpyJZLuR9RQu2NWHl3X/s1600/ClinicalTrialscartoonimage.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbSLlyNr23JUCtPirvJcWZxy0bjgxCt4jLqPOGGaXpz37-q-SxPaN68kC9-BVNR4x6YhSAOTSm1k5msm3jiKCkN1RsVCBrTfixf4yR9Fpyk847dTVFGKvEZnbh-tpyJZLuR9RQu2NWHl3X/s1600/ClinicalTrialscartoonimage.jpg" /></a></div>
In real life science can be excruciatingly slow. In real life the two researchers (whom I can't identify even though they were terrific) had to think through every possible way the sampling process could go wrong ...in detail you don't want to imagine although we had a great laugh about someone whose sample rolled away. Needless to say, I listened and signed the consent form. Blood was drawn and a urine sample was produced. <br />
Back to the poop.<br />
It really wasn't so bad. My new research friends went through every aspect of my 'homework,' and they then they sent me home with the necessary supplies in a white-shopping bag. At MD Anderson the white shopping is a clear giveaway for #NewPatientOnBoard. You might as well just stamp "PleaseHelpMe" on your forehead. It was difficult not to tell many sympathetic onlookers that this was nothing more than a "shitty test" but I held my tongue. I just smiled. <br />
Because the fact is we need to smile and laugh to work through our weird feelings about every single substance our bodies produce, regardless of what end is involved. I laugh right along with and at myself, especially in my anal (oh, so appropriate) attempts to make sure I followed the instructions <i>to the letter. </i>Heaven forbid my samples might fail to qualify. If there's a marker to be found then let mine be the first in line.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZTY7lyMcwRX1TQaFWxeld7QF9AHdTFNj5tSQNI940sXvdxQkPIF66vUP2nIQ_uoVQscE9GaOoKkN-lun-KUx9V-vUcJpMR8_S8PPzB3oF9e_DorJskO7alq-33FwhXl8TeuewRwSYrzaX/s1600/PatSteerRelayforLife.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZTY7lyMcwRX1TQaFWxeld7QF9AHdTFNj5tSQNI940sXvdxQkPIF66vUP2nIQ_uoVQscE9GaOoKkN-lun-KUx9V-vUcJpMR8_S8PPzB3oF9e_DorJskO7alq-33FwhXl8TeuewRwSYrzaX/s320/PatSteerRelayforLife.jpg" width="191" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This one's for you, Pat.</td></tr>
</tbody></table>
<br />
Earlier today I read a phenomenal post by Pat Steer, a CRC survivor I wrote about<a href="http://womenwcancer.blogspot.com/2010/03/enjoying-life-out-loud-with-metastatic.html"> two years ago.</a> Today she is the same woman, with the same clarity and courage. But her health is not the same. She has stopped treatment and describes this in <a href="http://fightcolorectalcancer.org/policy_news/2012/05/no_more_room_in_the_bucket">No More Room in the Bucket.</a><br />
Her post just happened to overlap my writing today. It reminds us to move past the 'ew factor for the greater good. If you're 50 and older, don't wait to discuss colorectal cancer screening with your doctor. Bring the topic up if she doesn't. If you live near <a href="http://clinicaltrials.gov/ct2/show/NCT01511653?term=edrn&rank=2">one of these cancer centers.</a> consider joining the clinical trial I just concluded. My last bit of homework is now in the mail. In the long scheme of things it wasn't much to ask. No, not at all.<br />
<br />
For other clinical trials, go to: <span style="color: #1f497d; font-family: Calibri, sans-serif; font-size: 11pt;"><a href="http://www.clinicaltrials.gov/" style="font-family: Calibri, sans-serif; font-size: 11pt;">www.ClinicalTrials.gov</a></span><br />
<br />
Thanks so much,<br />
Jody<br />
<br />
</div>Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com14tag:blogger.com,1999:blog-315151022752951218.post-19193209997466469142012-03-21T19:07:00.001-05:002012-03-21T20:49:16.180-05:00Fearless Friends<div dir="ltr" style="text-align: left;" trbidi="on">Last Sunday the Discovery Channel launched a seven-part series, <a href="http://dsc.discovery.com/tv/frozen-planet/">"The Frozen Planet,</a>" an epic documentary of the earth's polar regions and the very real threat posed by global warming.<br />
<div style="text-align: left;"></div><div class="separator" style="clear: both; text-align: center;"></div> <br />
I could spend the rest of my life watching television like this, or studying animals in general and dolphins in particular.<br />
<br />
Dolphins stay in small units, or pods, and communicate via an elaborate system of whistles, clicks, and squeaks. We all know about the squeaks from Flipper and bad Disney films. But their group behavior is something that can constantly teach us.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyBBaPa3vRgW-FOvfSuIp1UoWMO08pVZ3vFKXru6WDGp4PZ2W-GrJJ7CT1aadG71ZaHFMJGeaUtCM1aKgJgCESrV9g5s_VdcxqPeSYC1B1HxiZ9z9rrhIsN-HGcOlJg5T9xO2dsGNt-3uc/s1600/dolphinp.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="202" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyBBaPa3vRgW-FOvfSuIp1UoWMO08pVZ3vFKXru6WDGp4PZ2W-GrJJ7CT1aadG71ZaHFMJGeaUtCM1aKgJgCESrV9g5s_VdcxqPeSYC1B1HxiZ9z9rrhIsN-HGcOlJg5T9xO2dsGNt-3uc/s320/dolphinp.jpg" width="320" /></a></div>Instead of casting a weaker or ill member aside, as many other animals do, a pod of dolphins will often surround an ill dolphin and work as a team to bring her up to the surface for air to prevent her from drowning. In other cases, bottlenose dolphins have been seen biting and pulling through nets to save a captured companion or staying close to a female dolphin in labor.<br />
<br />
While these "empathy-based" behaviors are difficult not to anthropomorphize, I'm sure that's exactly what led a friend to leave us with a beautiful figurine of a dolphin leaping from the ocean's surface when she and her husband moved from our community to Florida several years ago. The dolphin was her gift to us.<br />
<br />
The tightly knit pod, she said, reminded her of the breast cancer support group where we all met. And that when one of our members - first Theresa, then Judy - sickened and ultimately died - we all pulled together, and brought our ill friends to the surface for air, so they might breathe easier, if only for a moment. We stayed with them, by them, around them, until there was nothing else we could do. Then water, life-giving and always mysterious, flowed in to fill the space.<br />
<br />
In Loving Memory --<br />
<i>Judy Halinan, Denell Hilgendorf, Elizabeth McCready, Rachel Cheetham Moro, Susan Niebur, Monica Phillips, Anne Robinson, Theresa Walleye.</i><br />
<br />
The term "Fearless Friends," was coined by Rachel Cheetham Moro in a tweet chat on January 23, 2010. She died on February 6, 2012. We will always miss her. </div>Jodyhttp://www.blogger.com/profile/14311014636548513060noreply@blogger.com18