Question from Susannah Fox to the President’s Cancer Panel after presenting results from the Report Cancer 2.0: “Given the evidence that people are ready, willing, and able to engage in online discussions about cancer prevention and treatment, what steps are being taken to ensure that the U.S. (and the world) does not miss this latest opportunity for education and discovery?”
This year in America approximately 83% of Americans searched online for health information.
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There's something about lists. We love them. We make them, scratch items off and then start another. We use lists for groceries, to compile all our things to do, priorities, projects, books to read and trips to take.
I was thinking about the top ten cancer stories of the year and looked through the NIH Comprehensive Cancer Center network -- some 40 of the country’s top cancer institutions. I couldn’t find what I was searching for, so I combined some of my picks with various newsletters. There are many stories I know are overlooked. Please add in those I've missed. For now, here are my ten top cancer stories for 2010.
1) Health Care Reform
For the first time—beginning in 2014 -- no one can be denied coverage due to a preexisting condition. For those of us who have to insure ourselves, for thousands of young adults and women who are unemployed, underemployed or in-between jobs, this is huge.
While surveys indicate that the majority of Americans don’t think much of the legislation, it’s essential we consider a wider and long-range view. An unhealthy nation can't compete. An unhealthy nation can't prosper, regardless of your politics. This is a very small step on a long road.
2) Sick of Pink: Komen Can't Cure
The slow burn on “pink madness” turned into a bonfire this year. Kentucky Fried Chicken’s “Bucket for the Cure” was a promotion even Saturday Night Live might find hard to top.
The sick of pink mood prevailed throughout social media, from the incredibly funny @ccchronicles and her pink awards roster (your handgun for the cure was my personal favorite) to an in-depth analysis by Alicia Staley on WEGOHEALTH about Komen’s clutch on their “for the cure” slogan. She asked the tough questions. The usually reticent Komen even replied. If you haven’t done so yet, take the time and look at "Lawsuits for the Cure." Many now wonder about if we’ve reached the end of awareness-building effectiveness. Getting a mammogram isn't necessarily a preventative measure but a diagnostic one. A vaccine is a preventative measure. Let's find one.
3) Breast Cancer Advances
This year we saw some turn-rounds in breast cancer treatment:
* Doctors now say that slowly progressive weight lifting like the program developed by the Pink Ribbon Project, does not increase a woman’s risk for lymphadema and in fact, may lower it.
* ZOMETA. Reports from the San Antonio Breast Cancer Symposium (SABCS) about using the bone-building drug Zometa as part of adjunct therapy for Stage II and Stage III breast cancers literally contradicted themselves. The problem evolved from comparing two entirely different trials. One sub-result showeda 29% survival benefit in women who were five years post-menopause, yet this received scant play. What? A thirty percent benefit doesn't sound like mincemeat to me. The best articles were from Sally Church "Some Additional Thoughts on Zometa in Early Breast Cancer", following a long conversation we had one night on Twitter, and another from CURE Magazine’s Melissa Weber in the Winter 2011 issue available here: http://bit.ly/gyZrkb.
*Mammography. Can you tell me why mammography is still paired with the word “controversy?” Are you confused about screening guidelines? I’ve yet to see any definitive cancer risk for ten mammograms – the number of tests you’d have from ages 40 – 49 by keeping the base age at 40 instead of raising it to 50. Finding the cancer isn’t the problem (when women get mammograms,that is – see #9) keeping the cancer from recurring IS. Of all the tests that are abused in medicine, I hardly think it's the mammogram. Somewhere we’ve missed the mark. A long-term study of head CT’s – especially in practices where physicians OWN machines -- would yield far greater radiation risks than a few extra mammograms. More on mammography if you are interested: http://www.medscape.com/viewarticle/732735
Other big stories in breast cancer:
* BioMarkers: Two ongoing studies, I-SPY 2 and Tailorx, involve molecular profiling to tailor specific treatments for a tumor. This is exciting.
* Inflammatory Breast Cancer: one of the most intractable of all breast cancers. A new clinical trial compares chemotherapy regimens for women with newly diagnosed IBC. Led by @teamoncology at M.D. Anderson.
4) Lung Cancer Hits the Radar as Women’s Health Issue
The death of Dana Reeves, a non-smoker, from lung cancer in 2006 put a new face on a horrible and stigma-laden disease. Now we know that the incidence of lung cancer in women has increased six-fold over the last 30 years. Adenocarcinoma, once rare, is now the most common type of lung cancer in women of all ages, particularly in young people who haven't smoked.
This year, simultaneous advances in medicine and the persistence of patient advocates helped move lung cancer, the most underfunded yet largest cancer killer in the US, into the public eye.
A study published in the journal Lung Cancer showed that CT scans reduced the death rate among 53,000 current and former heavy smokers by 20 percent compared with regular X-Ray screening. The study looked at death rates in a different, smaller population of heavy smokers, and estimated that those who received up to two CT scans would have between a 36 and 64 percent lower risk of dying, compared to those who went unscreened.
New clinical trials and advances in personalized treatment have provided some boosts and tools for oncologists to use in treating women with lung cancer.
From Edward Winstead, NIH: For Lung Cancer, A New Drug and a Way Forward and this from Reuters: More Signs Lung Cancer Screening Could Save Lives
5) Patient -Centric Care
I had “patient centered” care at MD Anderson back in the dark ages of the late 90’s – beginning in l998 to be exact. That’s what I chose after consulting with a number of oncologists and surgeons in the greater Houston area.
“Patient-centric” seems obvious – who else should the care be about – the doctor? A new era is evolving. We've all seen a few “surgeon kings” change the air in the hallway as they pass by. I applaud those hospitals and physicians who have been patient-centered for years and have no need to revise their terminology. Patient-centric care, where your participation, your input, your questions and clear communication are not just encouraged but expected – helps professionals tailor a treatment plan that best suits YOUR cancer. Please don’t “settle” for anything else.
Here are two great examples. One is on “Shared Decision Making,” by Dr. Victor Montori at the Mayo Clinic. The interview captures the essence of clear communication, from both the patient’s and the physician’s perspective.
The second is a terrific application of theory in practice. I applaud @emacartney and the Palo Alto Medical Foundation for the 2006 creation of PAMF’s Cancer Patient Advisory Council. The council does more than committee speak or fill blank pages with names on a roster, but have affected change in both survivor care and wellness programs.
6) Lifting a Veil: Palliative & Hospice Care
When you are newly diagnosed or in treatment palliative care and hospice services are the very last subjects you want to think about. It’s much more than the financial necessity or making a will. As you heal from treatment and begin to value your life more and more, the task of addressing how you want it to end becomes – if not easier to do – more understandable from many angles. To me it is a loving thing to do for yourself and your family. Just lifting the blinders and acknowledging the topic is a start.
This year a study showed that palliative care (which actually means supportive) actually extended the lives of people with advanced lung cancer. What HPM (hospice and palliative care) professionals recommend, in fact, is being part of the patient’s team at the point advanced disease is diagnosed. In this way, difficult end-of-life decisions can be grappled with before the later effects of illness cause both patient and family even more stress.
My attitude changed over the years, following the death of my mother and subsequent death of friends to cancer. We can’t control when we’re born, but to some degree we can let others know how we'd like it to end. There’s even a study underway – Communication in Oncologist-Patient Encounters or C.O.P.E. – that will help train professionals to help initiate end-of-life conversations with their patients.
7) The Power of ONE
Never discount the power of one. Here's what just a few women I’ve met this year have done to turn the tide.
*Suzanne Lindley, founder of Beat Liver Tumors. If you don’t know the story of the Texas housewife who took on Congress, please read: http://bit.ly/ihGsZq
*Tami Boehmer, author of Incredible Survivors, intimate portraits of people who are thriving despite a grim prognosis.
*Britta Aragon, founder of Cinco Vadas, for her work building awareness about toxins in make-up and skin care products.
8) The fastest growing cancer?
No, it isn't breast cancer. The fastest growing cancer is thyroid cancer, which I wrote about earlier this year. The disease has a large presence on social media thanks to advocates and writers Kairol Rosenthal and Katie Schwartz. These are intelligent, passionate (and funny) women who reach thousands. If you know of any women with thyroid cancer send them to @dearthyroid, for information, support, and community.
Adherence is the ugly step-child of cancer care. This year we found out that almost half of the women who were prescribed hormonal therapies for breast failed to complete their course of therapy. Then a study released at SABCS in December revealed that only half of the 1.56 million women (in study group) age 40 and over received a mammogram in any given year. Further, only 60 percent received more during a four-year period - http://bit.ly/17fPC5.
The potential for future health woes inherent in these two findings gives me the chills. As women with cancer it’s essential we move out of ourselves, out of our own cancer cluster and start talking with every woman we know. Be bold. Ask. Did you get your mammogram this year? Your colonoscopy? When was the last time you had a physical? Or a pap smear?
Women CAN get basic screening at little or no cost. The CDC's National Breast and Cervical Cancer Early Detection Program has provided free-or lost cost screening for more than twenty years. Here’s where to start: http://apps.nccd.cdc.gov/cancercontacts/nbccedp/contactlist.asp
Adherence is essential in all proactive health measures – from a healthy diet, to exercise and stress reduction. It’s not enough to take a pill or take a walk every once in a while. Our ancestors didn’t need a mobile ap to tell them to get up and feed the pigs or milk the cows. The sheer fact that they had animals to tend to made the aspect of choice irrelevant.
Maybe we need to reclaim some of that spirit and stop thinking of exercise, for example, as something we may or may not do. Maybe the choice will be which one, or, what’s the most efficient exercise I can do today with limited time. Maybe our choice isn’t what silly diet to try next but what foods will I pick to nourish my body today? Maybe the choice isn’t whether or not to take tamoxifen or my aromatase inhibitor (did any of you skip a chemo treatment? Or a radiation treamtment? Me neither) but what coping mechanism can help me overcome these hot flashes? We need to help each other do better in every regard. Let’s find ways to help each other succeed.
10) You are unique. So was your cancer. Personalized treatment will come.
As each child has her own unique genetic footprint, so does cancer. Our cancers are not alike. No one size fits all protocol cures breast cancer, or lung cancer, or colon cancer, or leukemia. No one even agrees on what constitutes a “cure.” I’m perfectly content with the term “in remission.”
As researchers reach more deeply into cancer cells, following the wandering paths of enzymes and proteins, the whys of recurrence and metastatic activity will begin to fall in place. Perhaps one study result will become the stone that finally creates the avalanche needed to demolish cancer. Its my hope to watch this avalanche pass by and around me in my lifetime.
All good things to you and yours,