Wednesday, June 13, 2012

Much Ado About a Lot


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 Health News Review  June 6. It’s a puzzling talk about overtreatment and medicaliazation that takes a surprising turn toward the end.
         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 Boniva, as though taking biophosphonates were as easy as having a picnic with the grandkids. They aren't. 
          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, How We Do Harm: A Doctor Breaks Ranks About Being Sick in America.  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. 
          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 previvor became part of the conversation. 
          That Dr. Oransky finds some "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.
          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 FORCE, in my distinction, for reasons I hope to make clear.
          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 without 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.
         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.  Cancer.net 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 bracnow.com.          
         If the point of the talk was not 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, “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.”
         Well, true enough. We can begin to split hairs all day long.  It seems that the phrase “some other predisposing factor” is the issue.
         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.
        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:
        “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.”
          Disease mongering is one thing.  Holding up an advocacy group for ridicule? Whether intentional or not? You decide.
        *   *    *



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.  




26 comments:

The Accidental Amazon said...

Dr. O's entire TED talk struck me as a glib, poorly thought-out and lazy grab at self-promotion. Even his legit points about how the healthcare system can pathologize normal life processes were not well articulated. And why he picked on women with BRCA mutations is beyond me. Another doofus with a degree. Dudes like him are a dime a dozen. I'm disappointed in TED Talks for letting him deliver this low quality drivel.

John A. Lynch said...

I'm not a woman nor do I have breast cancer, so I'm hesitant to weigh in here. But (deep breath), Dr. Oransky's underlying message is sound, although I agree he lacked sensitivity.

Having just published a blog post relevant to this subject entitled "America's Health Scare System - Fear is the Answer", you can guess that I share Dr. O's basic premise. In it, I use the example of women with DCIS choosing double mastectomies for prevention even more aggressively than their surgeons as an example of exaggerated fear driving poor decision-making.

Cholesterol obsession is another example I use, as my point is much broader. I also distinguish between hypochondria and legitimate medical concerns, noting that DCIS needs to be addressed - just maybe not with the most aggressive option possible.

And that's my main message: patients need to understand, and in some cases fear, the consequences of aggressive medical interventions as much as they fear their disease or condition itself - because sometimes the treatment will kill them before their disease would.

This is seen most obviously with end-of-life care, where a study of lung cancer patients showed those who rejected intensive care lived 33% longer than those who didn't. But it applies more generally as well.

Sorry to take up so much of your space here. I hope I haven't offended anyone.

Jody said...

Thanks for writing, John. I think Dr. Oransky's underlying message about medicalization and predication (that medicine does a bad job of predicting) is sound, but the way "previvors" was discussed - in the overall context of medicaliation - was poor.

Your example of cholesterol is good, and for goodness sake's, no one has mentioned prostate cancer. Talk about a population where harm has been done. That is medicalization. It's not just a female experience, as Dr. Oranksy said.

In the BRAC population, reduction of risk improves overall mortality. That is a fact. In prostate cancer? How many men now suffer incontinence and impotence that a cancer that may have done nothing in the first place. That is medicalization: using a questionable technology as "screening" that turns out to do more harm than good. Why? Because men must be "screened" yearly for prostate cancer.

The case of DCIS is often brought up as well. I don't have data: but my bet is that women who choose a double mastectomy for a DCIS diagnosis (which can turn to invasive cancer) are making a well-informed choice. I don't think they are jumping in to say, "YES, sign me up for a double mastectomy." I don't now how we can make blanket statements on whether or not women are making "poor decisions" in electing mastectomy without having good data about the pathology of those tumors. What many women have found, unfortunately, is that biology trumps staging. A woman's Stage III cancer for example, with today's technology, may be much less threatening than another's DCIS. For another woman, the constant merry-go-round of check-ups, biopsies, and screening is more than she wants to contend with.

I think, if you'll stick around these forums, you will find breast cancer patients are some of the best informed patients around. The choices are difficult, for women with DCIS; and even more so for women with BRAC mutations. To compare this with the very good example of end-of-life care - is the same derailing that happened in the Ted Talk. These are apples and oranges.

Again, thanks for commenting. I am always glad to open the conversation beyond this community. I hope you've learned more about this topic.
jms

-- jody

Manny Bermas said...
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Manny Bermas said...
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Jody said...

FYI -- I just deleted three spam comments concerning "ionzed water" for cancer patients.

-- jms

BRCA1Positive said...

I am a 4 time survivor...2x breast, 2x ovarian, with the first diagnosis at age 24. I carry the BRCA1 gene. I have 2 daughters, ages 22 and 27. They both carry the gene. After a year and a half of seeing genetic counselors, many doctors, much debate, discussion and lots of prayer they both made their own decisions. 2 and a half weeks ago they both had mastectomies and the beginning of reconstruction at Stanford on the same day, with the same teams of doctors. They are recovering beautifully and with plenty of pride! To Dr. Olansky...I only have to say SHAME ON YOU!! I find your thoughts arrogant and uninformed. I wonder if you would have the courage to sit down with my two BRAVE and COURAGEOUS PREVIVOR daughters face to face. I only hope you never have to face this issue in your family...your thoughts on this matter will be a very bitter pill to swallow.

Jody said...

Thanks so much for writing, BRCA1Positive....I am so thrilled that your daughters are recovering well, and as you say, with pride. They should be proud for facing such horrendous decisions with courage. My good wishes to them, and to you, for your continued health. You all have faced more in a short time than most face in a lifetime.

-- jody

drattai said...

Jody, thanks for such a thoughtful and informative post. I agree with your comment that breast cancer patients are some of the most educated and informed patients. As a breast surgeon, I see patients at high risk (BRCA positive as well as atypical hyperplasia) and of course women who have been diagnosed with breast cancer. Part of my job is to move past the initial "just take them both off" reaction. Educating a woman regarding her treatment options including recurrence and survival benefits (or lack thereof) of different treatments as well as the risks of under-treatment and over-treatment is important.

There is no question that we overdiagnose and overtreat breast cancer as well as a whole host of other diseases such as prostate cancer, elevated cholesterol, and osteopenia / osteoporosis just to name a few. But at this point in time we also cannot say with certainty that a low-grade DCIS today will be that same animal tomorrow. One of the hallmarks of cancer is its unpredictable nature. We are getting better at defining the true nature of an individual's cancer but we're not fully there yet.

In addition, there is no way that I as a physician can ever truly put myself in the shoes of one of my patients. She is the one that has to live with her decision and as far as I'm concerned, my role is to provide the education so that she can make the decision that is right for her. At the end of the day, I may not agree with her decision, but as long as I feel she had the proper information, I'm comfortable supporting almost any decision that one of my patients makes.

Jody said...

Continued education to understand risk/benefit is what each and every patient needs, Deanna, if we're to make continued head-way in treating women for all the different diseases that make up breast cancer.

I'm especially grateful for the dedication and time you spend to clarify issues, answer questions and promote understanding. Your work is noticed and appreciated.

-- jody

Beth L. Gainer said...

Jody, this is an outstanding post about an important topic. I also thought Oransky's talk was off the mark when he discusses previvors. Why did he have to pick on women, especially when there is a sound scientific predictor for these women? He classifies previvors as if they were some kind of hypochondriacs.

I'm also sorry to have heard about Dr. Love. My thoughts and prayers go out to her.

The Accidental Amazon said...

Deanna, thanks for bringing up DCIS. We all hope that future research will be able to help provide more options and understanding about how to evaluate DCIS so that we will know within a reasonable certainty which types we can leave alone & which types are more likely to turn invasive and thus need immediate treatment. I get very tired of glib pronouncements about this subject as well.

Mr. Lynch, I agree that cholesterol is an excellent example of a subject that needs further understanding before we address it aggressively with statins, etc., before a patient has any other risks or symptoms of heart disease, stroke, coronary artery disease, etc. Osteopenia is another example.

What bothers me is when an otherwise educated person undermines his valid assertions by demonstrating ignorance about a complex issue with mockery. Perhaps the TED 16-minute format is the wrong one for addressing the topic of over-medicalization. It's dangerous to broadstroke a complex subject with a spurious attempt at wit.

Jody said...

Good thoughts, all of you. And Kathi, I agree. I think the situation of cholesterol example (how many people do you need to treat, at what cost, before one heart attack is prevented) is an excellent example.

.

Jody said...

This is such an important discussion, and I appreciate how you've approached it. As a medical sociologist, medicalization is a process I've studied in depth, so I want to reiterate the definition and context that Jody and others have alluded to so far.

Medicalization is defined as a process by which non-medical problems become defined and treated AS medical problems. Applied to a variety of situations ranging from childbirth, menstruation and menopause to alcoholism, homosexuality, compulsive buying, aging, skin whitening, height, shortness of breath...and the list goes on...the "condition" comes to be viewed as something that needs to be controlled. The medical system (through a host of protocols and interventions) is the entity used to control it.

Through medicalization almost any condition, pre-condition, potential condition, or risk of a potential condition can be defined within medical terms, assigned medical language, embedded within a medical framework, and treated with a medical intervention. In fact, the thrust of medicalization has been so strong in much of the world that nearly every life situation now falls somewhere within a medical jurisdiction.

This is, I believe, the context of Oransky's message. Without the trend of medicalization, it would not be possible for advocacy groups to make claims and gain social validation for pre-diseased conditions. Managing those pre-diseased conditions is sometimes a cash cow for industry.

That said, I agree fully that individuals are in a situation where they have to make decisions (real life decisions) while being bombarded with information (some more valid than others) about risks. The decision to act, whether medically or in other ways, to manage risk is completely rational even if some actions are peddled by a profit-driven medical system. So while the trend toward fear-mongering for profit is valid, Dr. Oransky's insensitivity to this reality and the fear people have of something as dire as invasive breast cancer is unfortunate and for some, reasonably infuriating.

I hope the discussion will continue.

Gayle Sulik

Jody said...

The comment above was emailed to my from Gayle Sulik after she had difficulty signing in on the Blogger platform.

Her in-depth discussion on medicalization is a blog post or Ted Talk on its own accord.

Thanks So much Gayle, for weighing in on this. You added significantly to our understanding.
-- jms

Nancy said...

Jody,
I read your post yesterday and had to process it a bit. I am brca2+ and quite honestly, I've never been a huge fan of the previvor label, though I tend to shy away from all labels. Having said that, I was put off by his cavalier attitude more than anything. Even his baseball theme felt trivializing to me. Breast and ovarian cancers sure as hell are like no game. These are huge decisions women who are brca+ are struggling to make based on their own medical information and family histories. To place this group in the conversation at all about over medicalization doesn't even make sense to me. I think he did so just so he could insert the term previvor into his talk as a buzz word of sorts. The talk was all about show not substance. Perhaps I'll write my own post, it seems I'm rambling! Thanks for your well thought out words and for directing me to this TED talk. As always, our words matter don't they?

Jan said...

I agree with Nancy that "previvor" is a contrived word that wouldn't sit well with anyone who doesn't like the term "survivor." I believe the coining of "previvor" to define a certain subpopulation is almost as artificial as the medicalization issue itself.

I took Boniva for several years, but when I changed insurance companies, I went back to Fosamax. Who needs to pay a huge amount for something of marginal benefit?

Thanks for this important discussion. xx

Jody said...

Nancy,
I understand discomfort with the previvor label perfectly. Some women prefer having a name/label or a way to describe their condition. That's how I understand that the term evolved, and it certainly isn't for everyone.

You make a good point about adding the word "previvor" as a buzz maker. It certainly does that.

I look to journalists for balance, for fairness, and in the case of a Ted talk, perspective about health care in a way that is new or fresh. This is not what I saw.

Thanks for writing, Nancy, and I'll look forward to reading your thoughts on the pro's/cons' and in-betweens of the word previvor.

Jody said...

Jan,

I appreciate your comment on Boniva:) Interesting that research NOW says take only for X amount of time, I don't have specifics but I recall five years. My thought is that it is of the greatest value for young survivors in that first year following completion of chemotherapy, when estrogen levels are suppressed. Or that's how it worked for me.

Now all these years later osteopenia is stable and I no longer take any biophonate.

One of the difference with previvor compared with survivor, of course, is one is what women with a shared condition chose/choose to call themselves through an advocacy organization and the word survivor has been in the vocabulary since 1986, when the National Coalition for Cancer Survivorship, "...In 1986, the founders of NCCS set out to establish an organization that would change the parlance from cancer “victim” to cancer “survivor,” envisioning an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis." As you pointed out, how different people react to the term itself can be as varied as their individual cancers.

Amazing to think though, that people with cancer used to be called "cancer victims" or as we discussed about the article you had the other day, "cancer sufferers." Ouch!

Thanks again.
-jms

slbarto said...

I am BRCA2+...I had a prophylactic bilateral mastectomy at 29 and a complete hysterectomy at 34. I believe Oransky used us out of ignorance and is continuing to argue about the definition of previvor as a tactic to distract from his offensive jokes. I also wrote a blog about my feelings of his lack of apology. http://slbarto.blogspot.com/2012/06/just-because-you-have-voice.html

Julie Goodale said...

Great post - so important to continue this discussion. I agree that he does have some valid points about the healthcare system, but quite poorly presented. He's too busy trying to be clever and amusing to provide real, useful information - other than prompting some very good and useful discussions. He could have made his points with more validity and less insult by not focusing on women with a very real risk.

I think the biggest issue for everyone, no matter what the condition (or potential condition), is a frank analysis of the potential rewards versus the costs - both physical & financial. Is the risk of disease/condition great enough, and would that condition be serious enough to justify action? What are the risks of potential treatments? Because ALL treatments have some consequences. Is the cost in $$ and physical/psychological justified given the potential benefit and risks? Far too many people don't have these discussions with their doctors.

As for labels - I'm not wild about previvor. I understand and applaud the attention being brought to the issue, just not sure I like the term. But I'm not so wild about lots of terms.

Idelle Davidson said...

Hi Jody,

This is such an interesting subject. Fear does enter into how we make decisions sometimes. I think some of the genome-testing companies feed into that as well, offering people the opportunity -- for thousands of dollars out of pocket -- to have their DNA tested for an assortment of disease risk factors.

Fear isn't always necessarily a bad thing, though. Sometimes it spurs us to take care of our health. Hopefully though, we get second or third opinions, even when we trust and respect our doctors.

Jan said...

Thanks for this important post, Jody. Dr. O. needs some education on how to reach people without offending them. Despite some good points he made, making fun of FORCE really rubs me the wrong way. The audience shouldn't have laughed at his jokes; all that does is encourage continued bad taste. xx

Andrea Downing said...

Dr. O's comments are soooo damaging and misinformed for young previvors like me.

If you want to know what a Previvor goes through, here is my story: http://www.bravebosom.com/2012/07/17/oh-snap/

Finding out that I had the BRCA1 gene and having a prophylactic mastectomy was not only the toughest decision I've ever made - it may have saved my life.

Thanks for the thoughtful post on this!

-Andrea

tahera said...

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