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What’s a previvor? Cancer advocacy group that coined term objects to how I used it at TEDMED

with 67 comments

When I posted my TEDMED talk last week, one of the terms I highlighted from it was “previvor.”  Here is how I described that term in my talk:

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.

Yesterday, I received a letter from Facing Our Risk of Cancer Empowered (FORCE), the advocacy group that coined the term, expressing concerns about how I had used it. (I’ve made the whole letter available here.) FORCE wrote that they intend previvor to describe people with “a very high risk for a deadly disease like cancer.” And in a different version of the letter that they posted online, executive director Sue Friedman wrote:

I feel compelled to correct what I believe is a misunderstanding on your part about the term “previvor,” and the intent of the advocacy group FORCE in coining and using the term.

She also wrote:

We coined the term to refer to individuals who are genetically predisposed to cancer but have not been diagnosed.

I’m very happy to engage in this dialogue, because based on what they write in their letter, I think that FORCE and I actually agree far more than we disagree. Where we disagree, it turns out, is on whether FORCE’s own definition of previvor is consistent with their intent. Here’s that definition:

“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

The medical community uses the term “unaffected carrier” to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.

If a group of people with a mutation that puts them at high risk for cancer finds it useful to label themselves in some way, I have no issue with that. 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.

I am deeply moved by the difficult choices that women with BRCA1 and BRCA2 mutations are forced to make. In fact, those difficult choices are some of the reasons why I remain concerned about “pre-diseases.” Many of those definitions are so broad as to put us all into a state of extreme worried well, at far greater risk of overtreatment than of anything else, as I noted in my talk. Labeling everyone “with some other predisposing risk factor” a “previvor” only contributes to that confusion, and makes those choices more difficult. I submit that it is not consistent with FORCE’s admirable goals of helping people make better health care choices — goals we should all be working toward.

Perhaps FORCE will consider my feedback, and rewrite their definition — which I would welcome.

I’ll conclude this post the same way I ended last week’s:

I look forward to more conversation, and feedback.

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Written by Ivan Oransky

June 12, 2012 at 9:34 am

Posted in Uncategorized

67 Responses

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  1. I am BRCA positive. And thank god for that I suppose since now I am “allowed” to have a label according to you. Thank god I am not someone from a family riddled with cancer without a clear genetic link yet. I think it is impossible for anyone to quantify a risk point at which someone is allowed to be a “previvor” Each person, along with their physicians, needs to decide what their own acceptable risk level is before taking action. Some women with BRCA choose a surveillance approach and some choose surgery. These decisions are based on each individual woman’s risk tolerance as well as her own personal family history. In my father’s family, every single male has had heart disease and most women as well. Is my brother allowed to be a heart disease “previvor”? I think so. Statistics are a dangerous game in medicine (and I am an econometrician). When I first discovered my BRCA status, I obsessed about the statistics. My doctor told me something that stuck with me: “Well if you get breast cancer, then your chances are 100%” Your “money ball” approach of statistics dehumanizes illness and when you contract a terminal illness, the ex-ante statistics are of little comfort. We are lucky to have screening options and we’d be foolish not to screen for the illnesses we are most likely to get.

    Lindsey

    June 12, 2012 at 11:29 am

  2. Do you realize there is a National Previvor day? So regardless if you are confused or not, our governmental leadership has recognized our group and allowed us a week in September. Here is MY problem, as a previvor with your “speech” – it is much like making fun of a population of amputees…you are poking at women who had body parts removed – I CHOSE to have my breast tissue cut out of my body, I also had a complete hysterectomy. It really doesn’t seem like a laughing manner. Yes, I know, I may NEVER have gotten cancer had I not had these surgeries – would you like to have a phone conversation? I would love to share the family tree I have…a family tree of CANCER. Showing what family member had what cancer, showing how old they were when they died…from cancer. My issue with you is that you spoke out of ignorance because you relied on your twitter followers to come up with a word – and someone provided you the word previvor. You obviously did not dig very deep because, I can guarantee if you had, you would have stopped yourself from using our group as your poor analogy. Your reference angers me because we are making extremely difficult choices. I was 29 when I chose to have a mastectomy – I was 34 when I had a hysterectomy – both completely changed me, my life, my health. You obviously aren’t listening to your doctor when he tells you to lose weight, guess what? I work every day on my health. I don’t have a choice – I am fully aware of the other risks I have because of a hysterectomy. You were not sitting in my doctor’s office when I was told the only way she could assure me the symptoms I was experiencing were not ovarian cancer was to remove everything. That the surveillance I was relying on is considered research because they “hope” they catch cancer early – and they often do not when it is ovarian. For everyone else in my life who has tried to make your argument, I say this, if you had an 87% chance of winning a million dollars, would you not place that bet?? Guess what, that was MY chance of developing breast cancer if I kept my breast tissue…and, if you research, you will find, women with a gene mutation often develop cancer at a younger age AND have more aggressive forms of cancer…sorry, my life, I was not going to bet against those odds. Please seek to understand and take a look at how you use us in your speech and the laughter you received – you may actually understand how damaging this is to a group trying to gain understanding for the choices we make and trying to support others behind us.

    Sara

    June 12, 2012 at 11:50 am

  3. Dear Dr. Oransky,

    I would like to clarify that although I do disagree with your use of the word previvor in your talk, my personal objection to the content of your talk has more to do with 1) your tone which struck me as dismissing and making light of people facing inherited risk of cancer 2) the generalization about over-treating pre-conditions which omits factual information about some serious conditions for which interventions could be life-saving 3) what in my opinion seems to be an implication that our organization uses the word irresponsibly to raise money and make more people think they are at risk who may not be and 4) what in my opinion seems to be an implication that our organization contributes to the overmedicalization of preconditions. However, if I’m understanding your latest blog correctly, it appears that your objection is to the definition of the term itself, not to the work of our organization, why we coined it, or the community it identifies. Unfortunately that didn’t come across so well in your presentation so I appreciate your clarification.

    To your point about updating the definition of the term: at the time that we coined it, we did so to address and respond to a specific need expressed by members of our community. We are open to and might consider serious and thoughtful suggestions for reframing of the term that would still define and empower the community for whom it was coined. Having said that, outside of your talk, I have not personally seen the term misapplied in a way that inappropriately inflates people’s concerns about diseases that they may or may not ever contract. Perhaps you could send us some examples of where the term itself has been misused and caused harm and we can determine if there would be benefit to tightening the definition so that it will not be misapplied.

    Respectfully,
    Sue Friedman, DVM
    Executive Director, FORCE

    facingourrisk

    June 12, 2012 at 11:53 am

    • In addition to how you describe the term previvor as stated above, at about the 7 minute 10 second point in your presentation you also state:

      “We have advocacy groups like the one that’s come up with previvor who want to make more and more people feel they’re at risk or might have a condition so that they can raise more funds and raise visibility.”

      facingourrisk

      June 12, 2012 at 1:18 pm

      • Dr. Friedman and others:

        Thanks for the continued discussion.

        As I note in my post, I find FORCE’s inclusion of “or some other predisposing factor” in the definition of previvor problematic. I can — and do — hold FORCE’s goals of helping women make informed health care decisions in the highest regard, while also finding the chosen definition likely to “make more and more people feel they’re at risk or might have a condition so that [the group] can raise more funds and raise visibility.” As I noted, I find the current definition “not consistent with FORCE’s admirable goals of helping people make better health care choices.”

        I’m glad that FORCE is “open to and might consider serious and thoughtful suggestions for reframing of the term.” My suggestion of removing “or some other predisposing factor” is a serious one. I did not “misapply” the term; I described it accurately based on what’s on FORCE’s site. This discussion suggests that FORCE doesn’t actually want to group people with very high genetic risk with everyone who has any risk factor at all, so why not make sure that everyone coming across it knows exactly what FORCE means by the term?

        ivanoransky

        June 12, 2012 at 4:20 pm

  4. I am so incredible disappointed that someone who is as educated as you are was so dismissive of the fact that women labeled with this term do survive. I honestly hope that NO one in your life ever has to deal with Breast cancer because I have watched too many beautiful women perish too soon. There is No real way to diagnose early cancer in young women and this term brought awareness to all of us who feared our fate.

    Devin Greene

    June 12, 2012 at 12:59 pm

  5. Please visit my Blog written in response to your original presentation: http://ellyndavidson.com/2012/06/12/previvors-have-powerful-knowledge/

    ellynd

    June 12, 2012 at 1:05 pm

    • Whether we’re baseball managers, doctors, insurers or healthcare consumers, we have to be guided by the stats. Why does your doctor advise you to lose weight? Because the stats he has available indicate that if you don’t, you will likely suffer from condititions that will kill or disable you at a younger age than you might otherwise. My insurance company will pay for me to remove healthy organs if I have a genetic mutation because their numbers show it costs less to do that than to treat the likely number of cancers that will eventually be found among that population. Why would you go through the arduous process of long-term calorie restriction, or I submit to major surgery we may not actually need? Because, based on what we now know, we don’t like our odds otherwise.

      Jill

      June 12, 2012 at 4:08 pm

  6. I have already shared a brief story on your other site, but wanted to add that your statement “We have advocacy groups like the one that’s come up with previvor who want to make more and more people feel they’re at risk or might have a condition so that they can raise more funds and raise visibility.” is what hurt the most. These are REAL lives. I am 31 years old and had my breasts cut off 6 mths ago. I will never be able to breast feed again, (and if you knew me, that is heartbreaking for me) and I now have silicone with NO breast tissue and no feeling. Hate to be so blunt, but I want you to realize that making so light of a cancer previvor was truly devastating. It would take more than a group making me “feel” like I was high risk to make me go though a double mastectomy and a future hysterectomy. Not only was this particular statement a personal attack on all of us BRCA positive women/men who are a part of FORCE, but it was a personal attack on Sue Friedman who founded FORCE after fighting cancer twice. She has given her life for others. This is not able raising funds and making people FEEL they are at risk, we ARE at risk!! Devon Roell, BRCA2 positive, mother of 5, 31 yr old PREVIVOR

    Devon

    June 12, 2012 at 4:07 pm

  7. Wow, I have to say that this feels like a case of not listening to the full argument. I don’t think that anyone is arguing that an 80% risk of cancer is not to be paid attention to. There is a disconnect here between identifying people with a real disease predisposition and slapping a pre-disease label on someone whose risk for a disease is no higher than the background population risk. Has none of the stories about the harms of overdiagnosis and ovetreatment made any impression on the public? There are devastating cases (and we are not sure how frequent they really are) of people getting interventions that cripple them for diseases that do not exist. There is a good reason why the USPSTF reconsidered their mammography and PSA screening recommendations for the general population.

    These are without a doubt sensitive issues. But failing to acknowledge the distinction between a BRCA1 positive woman and someone at an average risk of breast cancer strikes me as disingenuous. Science (and journalism) demand precision from our communication. How can FORCE possibly not benefit from clarifying their definition to reflect their admirable mission? And this is sure to benefit the majority of the population who worry about diseases whose overdetection and overtreatment are apt to do more harm than good.

    Marya Zilberberg

    June 12, 2012 at 5:18 pm

    • It’s because we still don’t know all the mutations that convey a strong risk of breast and ovarian cancer. Many women with very strong family histories (sometimes nearly every woman on one side of the family) test negative for BRCA, yet they clearly are subject to hereditary cancer risk. Would you have FORCE exclude these women? Are they not revivers because we haven’t found their gene yet? This is not voodoo medicine. These women are encouraged by their doctors to undergo surveillance and surgery just like BRCA positive women. Do you have a percentage risk that you have in mind that we should use as a cut-off?

      Lindsey

      June 12, 2012 at 9:22 pm

      • Lindsey, as I clearly stated in my post above, my concern lies with people who have only the background average population risk for a disease, and not those with a dramatically elevated risk. For most people a family history elevates their fairly low risk by 2-3-fold, which is still pretty low. These are the people that an overly broad definition puts at risk of overdiagnosis and overtreatment. I have no issue with applying the definition to those with an alarmingly elevated risk.

        Marya Zilberberg

        June 13, 2012 at 7:52 am

    • I think a key part of FORCE’s definition of previvor has been overlooked by many. “The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.” They exclude those in the general population, those at average risk. Also, after a little digging on the FORCE website I stumbled upon the blog which describes how the term was coined. Dr. Friedman says: “The term includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor who are living with the knowlege of being high-risk.” This can be found here: http://facingourrisk.wordpress.com/2008/07/22/previvor-past-present-future/ Again, further clarification from FORCE that they are not targeting men and women of average risk to develop cancer.

      Kim

      June 13, 2012 at 4:46 pm

      • Many thanks for bringing that 2008 post to my and my readers’ attention, Kim. It looks as though “who are living with the knowlege of being high-risk” is no longer part of the sentence defining previvor on the FORCE website, which I quoted: http://www.facingourrisk.org/info_research/previvors-survivors/cancer-previvors/index.php

        Adding it back would be a great way to start modifying the definition in a way that would make it more clear and remove any doubt about it being too broad. Better yet, specify which predisposing factors FORCE means. Dr. Friedman referred to LCIS, for example.

        ivanoransky

        June 13, 2012 at 4:55 pm

      • The problem comes with determining what cut-off should be used to separate average, moderate, and high risk individuals. For those without a known mutation in the family, risk models such as BRCAPro and IBIS offer some guidance as to who should have more frequent and earlier mammograms in the moderate risk group. But a medical professional uses these tools and makes these recommendations, not FORCE. But it would do FORCE a disservice to prevent certain individuals from viewing their well-written patient materials and participating in their support groups and online community. It would be difficult to say only individuals with X% or greater risk of breast cancer should be a part of their group.

        Kim

        June 13, 2012 at 5:31 pm

      • Completely agree that a cut-off is difficult. And I don’t see any reason to prevent anyone from looking at FORCE’s materials, nor from supporting their important work. I do think it’s important to distinguish high-risk people from others, however, if the term “previvor” is going to be used. Many people who fit the definition as it now reads are low-risk, and in fact their risk of overtreatment is great, if they are given the impression, through a label, that they are at the same high risk as the people whom FORCE seems to most be concerned with targeting.

        ivanoransky

        June 13, 2012 at 7:28 pm

    • Having listened to the lecture, read all the posts, and being very familiar with FORCE, I believe that I have heard and understand “the full argument”. However, I do not understand how you accuse FORCE of “slapping a…label on some whose risk…is no higher than the background population risk.” I challenge you to come up with proof that FORCE has done this.

      In fact, the major issue that you take is with FORCE using the term “other predisposing factor” in the definition of previvor. However, in the above post, you identify women at high risk by saying “real disease predisposition”. How is it that you believe that their definition is any less ambiguous than the wording you use above?

      In order to clarify the statement, FORCE may require a better definition of those who are at “dramatically elevated risk” (as you state below). I think Lindsey’s question is a fair one, do you (or Dr. Oransky or anyone else who believes that these women are being “overdiagnosed and overtreated”) have a percentage cut off for high risk? American Cancer Society recommends women at a 20 to 25% lifetime risk or greater to consider MRI screening. This would equate to a 2 to 3 fold risk. Would you consider this overtreatment?

      A genetic counselor

      June 13, 2012 at 8:07 pm

  8. Your criticism of the word “previvor” as being too inclusive is reflective of your own agenda in “bringing awareness” to the over-diagnosis of “pre-conditions”. This is not the agenda of the “advocacy” group FORCE, which you fail to realize is also primarily a support group. Since being diagnosed with hereditary breast cancer in my 20s, this group has been an invaluable resource. Women with BRCA mutations represent a subset of individuals who are affected by hereditary cancer, increased lifetime risk and difficult decisions. The broadness of the definition of previvor represents the mission of a support group, not the medical profession. Nobody should feel excluded from support and advocacy when faced with hereditary cancer or increased lifetime risk simply because their specific case is outside a too narrow definition, hence the broadness of the term.
    Further, nobody is running around labeling other people previviors, rather it is a term that is available for those who find psychological comfort in having a name for the unique situation (and many hardships) that come with a hereditary cancer diagnosis.
    I am a 29 year old breast cancer survivor. Rather than a simple lumpectomy and breast conservation surgery, my medical team recommends a bilateral mastectomy to prevent future cancers. Is this over diagnosis or does it become reasonable since I have already had one cancer? The best recommendation, based on current medical understanding, is that I have a salpingo-oophorectomy at 35, in order to prevent ovarian cancer (due to my specific mutation and extensive family history of the disease). Qualified professionals who have assessed my personal situation recommend this course of action. Does preventative surgery for hereditary cancer truly reflect an over diagnosis of pre-conditions?
    Perhaps one day, I may choose to refer to myself as an ovarian cancer previvor, and I will do so proudly. It won’t be that I survived pre-cancer (a term it’d be more reasonable to attack) but that I survived my hereditary risk for a horribly undetectable disease that has killed my mother, cousins, aunts and grandmothers.

    Laura

    June 12, 2012 at 5:27 pm

  9. Dear Dr. Oransky,
    Thank you again for your further clarification of your objection to the definition of our term and the level of precision that you suggest be applied to it’s use. The inclusion of the phrase “or some other predisposing factor” was not added to inflate the numbers of people who feel they’re at risk or raise more funds. We used the term to be inclusive of those women who had strong family histories and very high cancer risk without a BRCA mutation and those with a predisposing condition such as LCIS that confers a very high risk for cancer. These are members of our community who sought support and inclusion from FORCE because again they felt marginalized due to the risk they faced and the choices they were being asked to make. We do not wish for individuals at high risk for cancer to feel further excluded or marginalized when they are already going through medical challenges and turning to our community for support. Given that, we are open to your suggestions on modifying the term in a way that still makes it meaningful for people who have to make difficult decisions about how to manage their cancer risk and helps them feel empowered and supported. I encourage you to email me directly with suggestions.

    Respectfully,
    Sue Friedman, DVM
    Executive Director
    FORCE

    facingourrisk

    June 12, 2012 at 5:38 pm

  10. In Oransky’s response he says “And in a different version of the letter that they posted online…” almost implying that Friedman’s 2 documents differ. I object to the “tone” of his original talk and his response.

    Carol

    June 12, 2012 at 5:45 pm

    • Thanks for the feedback. I do want to point out, however, that the letters are in fact different. I wasn’t implying anything; I was stating a fact. It’s understandable and reasonable that the letter Dr. Friedman sent me on official letterhead, signed by a number of people, would be different from the letter she posted on the blog, and I wanted to make them both available in the post.

      Feel free to check these links to confirm that the two letters are not the same:

      http://theoranskyjournal.files.wordpress.com/2012/06/force-tedmed-response.pdf
      http://facingourrisk.wordpress.com/2012/06/12/a-public-response-to-dr-ivan-oransky/

      ivanoransky

      June 12, 2012 at 5:51 pm

      • Dear Dr. Oransky and all,
        Indeed there were two separate etters: an official letter from members of FORCE’s Board of Directors, Advisory Board, and staff and my public blog which is my personal reply. The former will be posted to our server on the FORCE website and shared and is the same as the version that was sent personally to you which you link to above, with a few additional names of people who asked to be added. This will be shared as soon as we have it posted to our server.
        I hope this clears up any confusion.
        Respectfully,
        Sue Friedman, DVM
        Executive Director
        FORCE

        facingourrisk

        June 12, 2012 at 10:07 pm

  11. Dr. Ivan:
    I am a ‘previvor’ and an MD (a retired psychiatrist who started out in ob/gyn). My husband is a research (MD) scientist and has taught me much about the unique barriers to research and progress in American healthcare. Without going into too much detail please hear me out. Please do not lump “previvors” with preclinical acne or even pre-diabetics. We are a different lot entirely. My sister was dxd age 51 with 1cm ER+ breast cancer, no meds ‘needed’ aside from some post opTamoxifen for five years. She elected to have her contralateral breast removed at time of the cancer surgery (mastectomy and node resection) as she somehow thought: why worry about cancer in my other breast? She travelled to see some of the nations top oncologists although her home doctor was mentor to most all of them. None wanted to give her chemo with such a small tumor. She only found out about the BRCA status AFTER her surgery (1996).Thirteen years later she felt a small a supraclvicular node (same cancer but now ER negative and was found to have mediastinal mets which were kept at bay somewhat with Xeloda but then, 2.5 years ago she got a rare syndrome: leptomeningial carcinomatosis (huge word for mets to her brain lining) when she was unable to walk or balance, and she died within a few months. In retrospect we are finding that BRCA mutants fare better if they are given neoadjuvant chemo. In other words, our cancers behave differently! So had this info been around for my sister perhaps, just perhaps, she might still be alive today. I had elective prophylactic mastectomies and oophorectomies long before the word ‘previvor’ was around, and trust me, no surgeon was jumping to do my surgery!! The word was coined so that we have a way to communicate easily. Survivors are ones who have had cancer, previvors have the gene (or in some case if no gene has been found or the proband never was tested, then they have no way to tell if they inherited a mutation. it also includes those who have lobular carcinoma in situ with family history of breast cancer, as they seem to fit in this risk group as well. I do agree with Sue, that maybe as time goes on we can tighten the term somewhat, or make subset terms…..but I have not seen it misused and in fact it is not used medically but more just in our groups so we understand one another. I just saw my gyn today for my annual exam and he was very thankful to learn we have a local chapter of FORCE as he just saw two women in their 30′s with BRCA mutations and is glad they have somewhere to go for support, as it it is a lonely confusing road indeed. BTW I agree with most everything else you said in your talk. American healthcare is a mess and we waste a lot of money on tests that may not be needed…and I applaud you helping communicate with lay public and doctors. Just try to understand that our word, unlike the others you referred to, was NOT coined by doctors..but rather by people groping for understanding! thanks
    Lori Adelson MD

    Lori A.

    June 12, 2012 at 9:53 pm

  12. Dear Dr. Oransky,

    I enjoyed most of your Tedmed talk but must take issue with your mockery of the term “previvor.” I wish I could call myself a previvor; instead I must call myself a terminal cancer patient. Let me tell you a little about myself. I am a lifelong vegetarian and athlete. I have never needed to lose weight or change my diet or cut back on smoking or drinking. I gave birth to my children at home for a total cost of $2000 per child. I had no family history of cancer and no reason to think I was at risk. Imagine my shock at being diagnosed with Stage 1 breast cancer at the age of 41. And then to test positive for the BRCA 2 gene. And then to face a Stage 4 recurrence four years after my initial diagnosis.

    Instead of taking action to remain a previvor, I am refinancing my house and working to pay off bills so my husband can comfortably raise our children after I die young. Or young-ish. The nonprofit group you mocked, FORCE, will be there to help my children as they receive genetic counseling and testing to see if they inherited my deleterious gene. If my daughter carries the mutation, she has an 80% chance of developing breast cancer and a 40% chance of developing ovarian cancer. Her risk will begin when she is ten years younger than I was at my diagnosis. So when she turns thirty, she will need close monitoring or she may choose prophylactic mastectomies and ovary ablation so she can live to dance at her daughter’s wedding, a joy that will likely be denied me. Even better- maybe Mark Burnett will cast her on that great new show you pitched- Previvor. America can watch as my daughter waits to see if she ends up with cancer like her mom. Riveting entertainment!

    In closing let me repeat that I enjoyed most of your talk. But if your goal is to cut health care costs it makes a whole lot more sense to empower with knowledge the carriers of cancer genetic mutations and others with strong family histories of cancer than to spend the thousands of dollars a month it is costing to keep, for example, me alive while I hope for a cure for my cancer. May you never have to walk in the shoes of a cancer survivor, Dr. Oransky. It is much better to be a previvor.

    All the best,

    Mary G.

    Mary G

    June 13, 2012 at 12:05 am

    • OUTSTANDING, MARY G! We PREvivors are a FORCE with whom to be reckoned!

      Carol

      June 13, 2012 at 10:33 am

      • I am still hoping for an apology from the good doctor, if not for childishly playing in a semantic sandbox over what it means to have ” some other predisposing factor” then for getting a cheap laugh from his audience by using the heartbreak of women like me who turn to FORCE. A reality TV show called Previvor? If you get cancer you are asked to leave the island? Really? I am laughing so hard I might miss my next oncology appointment.

        Mary G

        June 14, 2012 at 10:52 am

  13. Marya Zilberberg, who has commented on this post, has a post at her blog about this discussion, in which she commends “Dr. Friedman…for being open to narrowing the definition of the term ‘previvor.'” I’d urge my readers to give Marya’s post a read: http://evimedgroup.blogspot.com/2012/06/force-against-disease-mongering.html

    ivanoransky

    June 13, 2012 at 1:01 pm

  14. Very interesting post and discussion of the language around the previvor (and the question of overtreatment vs. being proactive).This is a conversation really worth having, and I look forward to following where it goes.

    Catherine
    http://www.facingcancer.ca

  15. Dr. Oransky,

    I haven’t had the time to really read through each and every comment. I preface my comment so as not to offend any of the women who have taken issue with your remarks or your suggestion. I fully expect to be flogged by both sides for stating my opinion….

    I understand the nature of TED talks do not allow for much time to elaborate on any specific topic. This conversation is better suited for a CNN debate where everyone’s points are discussed and issues may be answered in real time.

    Here is my only problem with the way in which “previvor” was mentioned in your talk. When you quoted the statistics about the number of women who would have to be screened to prevent one broken bone, you made a powerful point. In the case of those with BRCA mutations (or, as in my case, a significantly strong family history whereby the head of genetics at a major cancer hospital places my daughter in the same category as a BRCA carrier despite no known or as yet identified mutation–yes, my daughter is a “previvor”) … those statistics, if mentioned would have been horrifying. I know they are different for BRCA1 and BRCA2 but I believe it would have been worth quoting something along the lines of “One hundred women will be screened and of those 100 women, up to 87 of them may be spared a cancer diagnosis depending upon the choice they make.” That’s a fairly big deal. Just my opinion.

    As for these remarks since part of the talk went directly to finances, I’m torn…

    “Advocacy groups ….. who want to make more and more people feel they are as risk so they can **RAISE MORE FUNDS and RAISE VISIBILITY****

    That may be true for the national organizations, some of whom have begun to function as businesses. Some of the funds raised are indeed raising visibility and providing aid where it is needed. Lots of those funds are being misdirected and I am in agreement with your observations about using “fear” to raise funds. Thanks primarily to Komen, I have somewhat shied away from the national groups in favor of the local organizations that are doing the same thing.

    It’s your remark about “raising more funds” that has touched a nerve. Komen uses donor dollars to line the pockets of those at the top of the food chain. Komen set about to crush the local organizations which are truly 100% volunteer run “boots on the ground” in their own communities by initiating law suits against these little guys over coined phrases like “the cure” ….. I am familiar with the great work FORCE does and I am in NO WAY implying they are “Komenesque” …. but still, it takes money to run things on such a large scale…… Your point about money is duly acknowledged.

    I’m sure you didn’t realize you would be stepping into the edge of The Pink Zone. There is a war brewing and it’s not the war on cancer. We are on the verge of a pink implosion. I monitor many activities and volunteer my time with both national and local organizations. There is more that unites us than divides us but you would never know it by watching the way we are acting. It’s a middle school game of Queen Bees and Wanna Bees. And in the middle? Women whose lives have been adversely affected/effected by all of this. Women who are metastatic and who will die of a disease despite billions of dollars and decades of research. Women like me who have “weird” BRCA mutations on BOTH GENES, neither of which match my 2x breast cancer diagnosed mom…. I lived in fear for myself for 19 years. After my own invasive cancer, my fear has shifted completely to my “previvor without a mutation” daughter.

    I am just looking to see some real change in every direction….to see this eradicated.. to support the new center at U PENN which is specifically researching BRCA…..

    With utmost respect,

    AnneMarie

    AnneMarie

    June 13, 2012 at 2:20 pm

    • AnneMarie — thanks very much for the thoughtful comment. I completely agree that these are complex issues that can elicit understandably strong responses, and that there is a spectrum when it comes to the practices of organizations.

      I am always interested in making sure that I provide as much context as possible, and your suggestion about specific risks for BRCA carriers is an excellent one. Thank you for that specific and constructive feedback.

      The issue, as I think I’ve made clear, and that I think you also understand, is that the FORCE definition of “previvor” goes far beyond women with BRCA mutations and other known high-risk factors by including “some other predisposing factor.” That concerns me in the context of our national discussion of overdiagnosis and overtreatment, as Marya has pointed out. So I’m very pleased that this conversation is happening, and that FORCE is willing to consider changing its definition.

      ivanoransky

      June 13, 2012 at 3:13 pm

  16. Dr. Oransky,

    Like other women on here who have depended on the excellent information provided by FORCE for the most difficult medical decisions of my life, I have to share my concern with your dismissal of the term “previvor.” I am deeply offended by your column, in all honesty. You state “The problem is that there are hardly any people alive who do not have “some other predisposing factor” for cancer.” I think this statement is deeply disingenuous. It is true that by being an animal, we are at risk for cancer, but that fact is not helpful. I think a rather broad definition stands as there are many conditions that indicate a greatly heightened risk for cancer, not just being BRCA1 or 2 positive.

    I am BRCA negative, yet come from a family where as yet no woman carrying the “some other predisposing factor” (the phrase you object to) lived to see 50. Many female relatives died in their 20’s and 30’s. I also was diagnosed with multiple atypia lesions in my 30’s, which fairly well convinced my doctors and finally myself that I was next in line for hereditary cancer. FORCE and the “previvor” label were a lifeline, and helped to guide me to other women making the same difficult choices and undergoing the same procedures as myself.

    Your dismissal of this term, and by extension this organization and its awareness-raising campaigns, is hurtful and not helpful.

    I stand with FORCE.

    Lisa D.

    June 13, 2012 at 4:39 pm

  17. Dr. Oransky,

    I believe that it is disrespectful of the hereditary cancer community and the women who give their very lives because of the lack of knowledge of their cancer risk to lump this community in with a talk directed at the ills of disease mongering. I do not believe the medical professionals who counsel women with a family history of breast cancer to consider genetic testing are disease mongering. True, I did not have cancer when my doctor first recommended genetic testing, but knowing that I carry a BRCA mutation has allowed me choices to avoid a cancer diagnosis that my mother did not have.

    An additional thought on the issue of defining the term “previvor.” As you know, women in this country have a 1 in 8 or 1 in 9 chance of developing breast cancer in their lifetime, from that standpoint merely being a woman is a risk factor. While the term “previvor” was originally coined for people like me who have a known genetic mutation placing us as what I consider to be astronomical risk, other women are also at very high risk and should also be considered “previvors.” For instance, a research study announced at ASCO last week found that women who had radiation therapy to their chest for childhood cancers have risk for breast cancer that is equivalent to having a BRCA mutation. This is precisely the type of “other predisposing factor” that makes these women previvors and part of the high risk community. At this point researches do say there are other factors that can make a woman high risk, and many of those factors have yet to be identified.

    I have written a blog post to expand on this discussion, which can be found here:
    http://positiveresultsthebook.blogspot.com/2012/06/is-your-doctor-or-genetic-counselor.html?showComment=1339628579549#c2374926937608136845

    Joi Morris

    Joi Morris

    June 13, 2012 at 7:33 pm

    • Joi, thanks for leaving the thoughtful comment, and for expanding your thoughts in a blog post to make your readers aware of this discussion.

      If your reference to the lifetime risk of breast cancer is to demonstrate that all women are at some risk that makes them into a previvor, I must respectfully note that is the kind of lack of clarity in labeling that I was concerned enough about to label “pre-death” in my talk. Similarly, using a term like “previvor” suggests cancer is inevitable, and while it is in fact quite likely for some people, as many have correctly noted on this thread, it varies widely and is quite low for many people. I think it would be much better to determine risk and therefore be able to judge the relationship of risk and benefit for individual people, rather than suggest that cancer is inevitable for all women.

      ivanoransky

      June 13, 2012 at 10:02 pm

      • I am afraid you misconstrued my words. I also suspect you did not fully read my blog as I noted that even having a BRCA mutation does not mean that cancer is inevitable, although for many BRCA families is may seem so as generation after generation of women are mowed down by this disease at ever younger ages. I also did not mean that every woman is by definition a previvor, just that being a woman is, in and of itself a risk factor. To assert otherwise is to defy reality. Rather, what I meant is that there are a variety of things that can significantly raise risk, such as treatment for other cancers with radiation, and that those women should not be excluded from the high-risk community by a tightly parsed definition as you suggest. You, by virtue of your hypertension are at increased risk of certain medical complications, including stroke. I suspect that you do what is necessary to reduce that risk by controlling your condition. Women at high risk for breast cancer must, as you do, do a variety of things to reduce their risk and/or to find a cancer at a sufficiently early stage to be curable. Once you begin to look closely at the research, you will discover that there are clinical differences in these cancers that mean a greater percentage of early diagnosed cancers in these women will go on to be fatal, regardless of the treatments current medical technology can offer. Women staring down the barrel of this gun have every right to call themselves whatever they want, including previvor, and it is disrespectful of the women facing these very real risks who must make life altering decisions that are considered “extreme” to many to poke fun at the term previvior and to equate it with your clearly designed to be amusing label of “pre-death.”

        I believe that the point of your talk was to point out where the medical community goes overboard in the treatment of conditions or non-conditions that are unlikely to come to fruition. I continue to believe that your inclusion of the term previvor in your talk and your continued defense of the use of the term in this context is disrespectful of the high-risk breast and ovarian cancer community. One of the biggest challenges faced by FORCE and by our community is that there are still many, many doctors who do not believe in genetic testing and women’s lives are lost because the medical establishment fails them on this front. The world for which you advocated in your talk would be one where even fewer doctors looked closely at their patient’s medical history because to do so is a waste of time and medical resources. That is a vision of the future of our health care system that is totally at odds with my beliefs and with the mission of FORCE. If you wish to truly focus the discussion of excessive health care spending on matters that are indeed excessive, then your continued attack on the the high-risk community really weakens your argument.

        Respectfully,
        Joi

        Joi Morris

        June 14, 2012 at 7:42 pm

      • Thanks for the clarifications and further discussion, Joi. It means a great deal to me that despite your concerns that I am attacking a community, and disrespecting it, that you are willing to continue to engage here and elsewhere.

        I fear we’re talking past each other when we talk about definitions, perhaps because we’re looking for something different. I’m trying to make sure that the right amount of health care is focused on people who need it, with the least amount of intervention for people who don’t need it. I understand that you are concerned that there are far too many people who aren’t getting the help they need. That — if I’m reading you correctly — makes you reluctant to exclude too many people from the high-risk community. My concern is that leaving too many people subject to the definition of previvor actually weakens the power of the word, and leaves many lower risk women at a high risk of overtreatment. I have not, as I think you’re suggesting, argued for removing parts of the definition that “significantly raise risk.” In fact, if you look at the exchange that Michelle Malone and I have been having on this thread, I’m arguing for making the definition more specific by adding those conditions that confer high-risk.

        I appreciate that you may not think that’s a good idea, and I respect that. But my questions about the usefulness of a definition, and my attempts to make it more clear, are not attacking or disrespecting a community that uses that term. Quite the opposite.

        ivanoransky

        June 14, 2012 at 8:09 pm

      • I do agree that we may be talking past each other here. Setting aside the issue of redefining the term previvor, on which we may or may not agree, your use of the term previvor in your talk as the butt of a string of jokes reflects in my opinion a lack of empathy for a community of primarily women (although men with BRCA mutations do have increased risks too) who have suffered greatly in ways that I don’t think you fully appreciate. I don’t know if you were aware of the depth of the struggles of this community when you chose it at your target but I am fielding phone calls of the nuclear fallout of your harsh words and I can tell you the emotional pain they have caused is real. Your words have been hurtful to this community regardless of whether you intended disrespect or not and the simple truth of the matter is that you owe this community an apology for the pain you have caused.

        Joi Morris

        June 15, 2012 at 1:51 pm

  18. From a post “And I don’t see any reason to prevent anyone from looking at FORCE’s materials”. The FORCE materials are not secret!

    My sister died in 1981 at 37 of BC and OC, my mother had BC at age 80, I had St 2 BC with lumpectomy, chemo (ACT) and radiation in 2003. My genetic testing came back as “unknown variant”. I was diagnosed with Stage 3C OC in early 2006 and was treated with pre-op chemo to shrink the tumor followed by debulking surgery and insertion of a catheter for IP treatment . Two weeks after surgery, my husband, a research pharmacist at St. Jude here in Memphis died at work of cardiac arrest. I thought of giving up but that would leave my kids orphans, my granddaughters without a Mimi and my sisters’ motherless children without Aunt Carol. I decided to fight back and become an advocate for BOTH breast and ovarian cancer. I attended my first FORCE conference and felt at home with bright, well-spoken speakers and directors. I am now an annual sponsor of the organization. In late 2008, I had further genetic testing which showed I was BRCA1 positive. My 2 kids were negative, my sisters’ 3 kids are all positive and my brother is also positive. My counselor and breast surgeon both urged me to have mastectomies but said I could wait until after the holidays. On my pre-op visit to the breast surgeon, my favorite mammographer decorated my boobs with washable markers. When the doc opened my gown we all had a good laugh. Over Valentine’s Day weekend in 2009, I threw myself a “Life Is Good” party complete with a BOOB cake. I decided to NOT have reconstruction because of the poor survival rate for Stage 3C OC, I didn’t want to lay around getting pumped up so I went para-sailing, sky-diving, zip-lining and was an example to my family and friends. In 2010 I had a malignant recurrence in a periaortic lymph node in 1 out of 18 nodes and was treated with surgery and Gemzar. I had been appointed as a director in the Ovarian Cancer Awareness Foundation and have been elected President. Last evening I met with 2 young ladies who are the new coordinators of the Memphis FORCE group. I am so grateful to FORCE and OCNA (Ovarian Cacner National Alliance) and will support them and advocate for all as long as possible. My nieces and nephew are all being proactive in their surveillance as PREVIVORS and I couldn’t be more proud.

    We previvors and our leaders are a FORCE with which to be reckoned!

    Carol

    June 13, 2012 at 9:42 pm

    • Thanks very much for sharing your story, Carol.

      No one was suggesting FORCE’s materials were secret. My comment, as you will see from the context from which you took it, was in response to a comment from Kim in which she expressed concerns that limiting the definition of previvor might keep some people from viewing the materials.

      ivanoransky

      June 13, 2012 at 9:53 pm

  19. Dr. Oransky, I think it’s time to stop playing defense and to admit that you’ve been wrong ridiculing the BRCA / high cancer risk community. As much as I agree with the idea that in many areas, American society pays outsize attention to minor risks, and possibly harms more people out of a misplaced desire to save the few … you’ve done a major disservice to the concept of rational risk management by continuing to battle Sue’s selfless cancer risk support group.

    Do you really fail to understand that the FORCE previvors aren’t calling themselves this way _not_ just because they have elevated risks but because they are taking dramatic steps to reduce the risk. Exactly as dramatic as some of the surgeries of the survivors. And just as approved by the medical profession. Previvorship isn’t in a mere perception of the risk, it is in the path to cure.

    Having watched their dear ones die from cancer, and having been rejected some of the mainstream cancer activists as well as by the male chauvinists who’d rather have a woman loose her life than her breasts, the hereditary cancer community can’t choose any other way but the way of acceptance of other high-risk humans. To demand that FORCE withholds its support from some of its sisters who don’t have a BRCA mutation is outrageous. It may be the job of your doctor, your genetic counselor, and your insurer to ponder if your risk is or isn’t high enough to justify preventive surgeries, but FORCE’s job is entirely different. It is there to provide support to all.

    Dm

    June 13, 2012 at 11:45 pm

    • Dm, thanks for the comment.

      I don’t see this as a battle. I see it as a productive discussion of a critically important issue about which people feel strongly, for good reason.

      At no point have I suggested that FORCE withhold its support from anyone, nor that having a BRCA mutation is the only marker of high risk. My understanding is that anyone can get support from the group, and as I’ve said several times, it is performing admirable and vital work. My issue is with an overly broad definition of “previvor,” for reasons I’ve made clear a number of times in this thread. And I’m very gratified that Dr. Friedman is willing to consider modifying that definition.

      ivanoransky

      June 14, 2012 at 12:05 am

      • My issue is with an overly broad definition of “previvor,” for reasons I’ve made clear a number of times in this thread. And I’m very gratified that Dr. Friedman is willing to consider modifying that definition.

        Doesn’t it surprise you that you’ve stated your position many times, but your point fails to get across? Let me try explaining the “definition problem” one more time, too.

        Define “definition”. It seems to me that you seek a definition of “previvor” as a medical diagnosis or as a public health policy term. But it is neither. It is used as a self-identification of a high-risk community, and it is grounded in feelings as well as in statistics and medical facts. And in this respect, FORCE’s definition is perfectly correct. It isn’t a diagnosis or a syndrome to be defined with a narrow precision, it’s more like a membership badge.

        What Sue was willing to do is to tweak the “communal solidarity definition” if you demonstrate that there are other users of this term who use in a way detrimental to the hereditary cancer community. Which would be the right thing to do since the word has been coined to bring people together, not to pull them apart. Of course you can’t find any such “divisive users of the word”, then why do you continue to gripe that the definition is too broad? It isn’t too broadly defined for its stated purposes.

        Dm

        June 14, 2012 at 1:49 am

      • Dm, I appreciate your continued thoughts, and I have been very pleased by the discussion of whether the definition is appropriate. I think that robust discussion is evidence that the point is getting across; getting across doesn’t require everyone to end up agreeing. I’d urge you to read Marya Zilberberg’s post, which has been referenced on this thread, about how FORCE can take an important stand against disease mongering:

        http://evimedgroup.blogspot.com/2012/06/force-against-disease-mongering.html

        ivanoransky

        June 14, 2012 at 9:34 am

  20. Dr. Oransky-

    I watched your video a few days ago and have been composing a response to it ever since then. I suppose from the outside looking in, as someone who has never experienced what PREVIVORS have gone through, the drastic measures that we take do seem a tad silly. If you simply state “I’m cutting off my breasts in order to prevent cancer but I don’t have it yet” I suppose it does seem a bit ridiculous.

    However, Dr. Oransky I can assure you it’s anything but.

    You see, I am not a BRCA carrier. I am an “uninformed negative” simply because I was adopted and there wasn’t enough family history to successfully test me for the gene. However, I have the pleasure of having another genetic condition- Cowden’s Syndrome. Cowden’s Syndrome is a tumor suppressor gene mutation. It’s very rare. Most of my doctor’s have to be told about it and then go research it before they decide how to treat me. I’m seen by a genetic counselor, not on a regular basis now but there’s always one in the background if I have questions. Cowden’s Syndrome gives you numerous benign tumors. To date, I’ve had approximately 25 surgeries for various things. (I suppose at this point I should say that I’m 28)

    When I had a benign brain tumor (Lhermitte Duclos) the neurosurgeon was astute enough to suggest I get tested for Cowden’s. I was 19 at the time. When I tested positive for the mutation I was given information about all of the risks and additional screenings. I was warned about the elevated breast cancer risk and told that I had the option of a preventative mastectomy. I decided to wait and go with increased surveillance instead. I had my first mammogram and the ripe old age of 23. Do you know what it’s like to sit in a breast center waiting room with a terrycloth robe on getting pitying looks from the 50 and 60 year olds there for the annual?

    Every mammorgram I had, I immediately had an ultrasound. Then a breast MRI. Then an unltrasound guided needle core biopsy. Then an excissional biopsy. This entire process would take months. Do you have any idea how agonizing it is to wait to hear if you have breast cancer before you’re 30?? The same doctor had performed all but one of my breast biopsies (I had been having them since I was 13, for fibroadenomas first). We had formed a very good relationship. He begged me to have a mastectomy. As well as 3 other doctors. You see, I’d had purulent (yes I’m in nursing school so I know big medical words :) ) nipple discharge, and several biopsies come back with ADH (atypical ductal hyperplasia). I’m sure you can appreciate that I was on a slippery slope to DCIS or invasive breast cancer. What’s funny is that the 4 doctors that begged me to have the mastectomy actually would’ve profited more from my NOT Having one. Have you checked out the price of the aforementioned tests?? And all of those were done twice a year. I would’ve ended up racking up medical bills in the millions. And what if I’d actually been diagnosed with breast cancer? Then you add chemotherapy/radiation, lumpectomy, PET scans, etc,etc. So the assertion that you made, of doctor’s being able to profit from things like this is simply not true in all cases. It would’ve made more business sense to keep me having tests.

    I finally decided I was DONE. I was done waiting in agony to see if this was the time I didn’t dodge the bullet. I was done getting legally tortured by mammograms and breast MRIS and needle biopsies. I was done worrying about whether I was going to die young. So I agreed to have a prophlaytic bilateral mastectomy with reconstruction.

    I frantically searched from some type of support group and some type of group that I’d fit into it. I wasn’t a survivor, so I didn’t want to label myself as one. Someone turned me on to the FORCE page and the term PREvivor. PERFECtT! I found where I belong! I quickly got the book “Previvors” and read it. Then I gave it to my mother to read, and it helped her understand why I was making such a radical decision.

    In April 2011 I marched into the hospital perfectly healthy and had my breasts removed. And..things didn’t quite go as planned. I had complications. PLURAL. It was a pain. It was heartbreaking. But it wasn’t life threatening. And now, a year later, I’m perfectly fine.

    I say all of that to say this. I took major offense to your dismissal of the term previvor. It’s something I’m proud to be a part of. FORCE was a lifeline for me in a very hard time in my life. And yes, it was hard. Gut wrenching. But never once did I regret my decision or turn back and FORCE made me realize it was ok to be like that and have moments of complete melt down.

    I respect your opinion of the term. I really do. Not everyone agrees with being a previvor. In fact some people with a genetic mutation chose to do nothing at all. But for those of us who stare our inevitable fate in the face and choose NOT to be a victim- please have a little more respect for us and what we’ve been through. Each person comes to FORCE for a different reason, but everyone has a reason to be there. People with genetic mutations are not the same as someone simply paranoid about getting cancer.

    Dr. Oransky, thank you for allowing people to post comments. I know my little story won’t change your mind completely, but you do need to realize what a previvor REALLY is.

    Michelle

    My PREvivor blog: http://www.tatatothegirls.blogspot.com

    Michelle Malone

    June 14, 2012 at 12:07 am

    • Michelle — I deeply appreciate your sharing your story, and I remain deeply moved by the wrenching decisions women at very high risk of cancer need to make every day, as I noted in my post.

      Your story, in fact, drives home for me in a dramatic way just how powerful the word “previvor” is, and that’s why I am concerned with how broad the current definition is. Your experience is a good demonstration that the word shouldn’t be used lightly. As you’re aware, not everyone with “some other predisposing factor,” such as age, will face the same risks you do. That phrase, in the current definition — http://www.facingourrisk.org/info_research/previvors-survivors/cancer-previvors/index.php — dilutes the term’s power. Modifying the definition to make it more clear would help.

      ivanoransky

      June 14, 2012 at 9:21 am

      • Dr. Oransky-

        Amazingly enough I’m beginning to see your point. :) I do stand by my original opinion that I think you talked about it far too lightly on the talk which did dilute the term’s power, as you maintain that the current definition is. However, I will agree with you that the definition itself is a tad vague.

        Out of curiosity ( and I may have missed this in earlier comments, so if I did please forgive me) what would you suggest changing the definition to? You can’t say “BRCA positive predisposition” because that excludes people like me who have ANOTHER genetic risk. You can’t say “genetic predisposition” because that would exclude people with a hereditary risk and vice versa. How would the definition be amended to make it broad enough for everyone it applies too but not so broad that the entire population begins labeling themselves with it?

        Michelle Malone

        June 14, 2012 at 12:41 pm

      • Michelle, thanks for the continued discussion and feedback. I’ve suggested in a few comments — the threading of which here makes them difficult to follow, so I can understand why you’d miss them! — eliminating “or some other predisposing factor” in favor of a list of specific risk factors, and/or conditions that carry a high risk of cancer. As others have pointed out, finding a threshold for risk is a challenge, but if the term is to mean what FORCE seems to hope for it to mean, then that threshold has to be clarified somehow.

        ivanoransky

        June 14, 2012 at 6:58 pm

      • What if FORCE were to eliminate the term “other predisposing factors” all together? The definition already clearly states “hereditary mutation or family risk” What other predisposing factors are there? At least significant enough to warrant preventative surgeries or increased surveillance. In fact I may email Sue with my suggestion

        Michelle Malone

        June 14, 2012 at 7:03 pm

      • I think that eliminating that phrase altogether would make the definition much more clear, yes. But would it exclude people that FORCE thinks should be included? Alternatively, adding “who are living with the knowledge of being high-risk” — which was in a 2008 version by Dr. Friedman http://facingourrisk.wordpress.com/2008/07/22/previvor-past-present-future/ — might be one way to go.

        Thanks so much for your engagement on this issue.

        ivanoransky

        June 14, 2012 at 7:20 pm

    • You know the ironic thing is- most people associate the term Previvor with the BRCA mutation and nothing else. I’m an outreach coordinator for a local FORCE group and I asked them to change the verbiage since it talked about BRCA so much and I didn’t want anyone to feel excluded. Now it seems that the opposite could be happening. Maybe going back to the old form of the definition would be better.

      Michelle

      June 16, 2012 at 7:36 am

  21. Dear Dr. Oransky,
    While we may wrangle endlessly about a proper definition of “previvor,” it remains a term that was coined, not by the medical community, but by a group of individuals who are struggling to define themselves and the unique aspect of risk that they face. FORCE, the organization that you unfairly and flippantly castigate for using fear-mongering as a fundraising tool, is largely comprised of volunteers and women who have been diagnosed with the BRCA gene. FORCE members have devoted countless hours to providing information and support to a population that has a wholly disproportionate likelihood of developing breast or ovarian cancer. Many of us, like myself, were alerted to this status by virtue of watching family members die, often young and in pain. Unfortunately, your dismissive tone in this highly public forum struck a chord with many women who have experienced encounters with doctors who have also treated their risk lightly. You are correct in maintaining that there are those among our -since previvor is inappropriate- “choose your label for lucky to be alive” population that would never have experienced cancer. If the statistics are correct, 13 out of 100, who are BRCA positive have that privilege of living out their lives cancer-free. You imply, in your lecture, that the medical community should not be testing and treating the “choose your label for lucky to be alive” population because they never get the disease. Out of the rest of that hundred that you neglect to mention, some fortunate ones are presently “survivors,” dealing with often debilitating cancer treatment and the increased likelihood of premature death. Sadly, many of those BRCA positive individuals, whose doctors were ignorant, unable or unwilling to properly test, treat, or acknowledge their levels of risk are labeled “dead,” a term that is unequivocal. There are still far too many doctors out there who are clueless about what “BRCA positive” means and your words serve to reinforce and even legitimize that ignorance. While none of us argue against the need for controlling medical costs, one would hope that someone who claims to be a “journalist,” would research carefully before shooting his mouth off at a target that actually saves lives and ultimately, health care dollars. As you quibble defensively and maintain the legitimacy of your misstatements about FORCE, its mission and the definition of “previvor,” there are another few words whose definitions you might wish to consider. They are “wrong,” “ill-considered,” “sorry,” and “apology.”
    Sincerely,
    Pearl
    BRCA+, preventative bilateral mastectomy, hysterectomy and member of the “choose your label for lucky to be alive” community

    Pearl Englander

    June 14, 2012 at 1:07 am

  22. Dear Dr. Oransky:
    As I see it, the real travesty is the number of women out there with significant family histories – e.g., multiple relatives with breast and ovarian cancer – who aren’t at all aware of the BRCA mutations, the availability of genetic testing, and the screening and risk reduction options available. I met a young woman last week (while traveling for my own breast reconstruction following prophylactic mastectomy) who said her grandmother, her mother and another couple of relatives all had breast cancer, yet she had never heard of BRCA testing. If the medical profession and the general public need anything, it is GREATER awareness of this issue. If the term “previvor” can draw attention to it, it will save lives! Until all those at risk are aware of their risk and have access to testing and prophylaxis, it is irresponsible to argue against casting a wide net.

    Kate

    June 14, 2012 at 3:45 am

  23. Dr. Oransky: I have continued to hope you would apologize for mischaracterization of previvors and your unfortunate lumping of them with overtreatment, pre-conditions, etc. In all this exchange, you have simply focused on one phrase in FORCE materials and continued to lecture these women about the need to change its wording. You give no evidence of the phrase having been misused in any sort of bracket creep or crass fund raising efforts. So, please fess up, you were wrong on TEDmed and we can get on with appreciating the many great things you do.

    Jim Coyne

    June 14, 2012 at 12:17 pm

    • Jim, thanks for your comment and for the kind words about my work. I appreciate that not everyone shares my and others’ concerns with how an over-broad definition of previvor could lead to medicalization. While agreeing to disagree is a reasonable outcome, I’ve been very happy with the engagement on that issue here and elsewhere.

      ivanoransky

      June 14, 2012 at 6:52 pm

  24. To lump pre-acne with breast cancer? Are you crazy? You have a valid point though, which is totally lost in your arrogant and seemingly ill informed talk. Shame on you.

    candace g frates

    June 14, 2012 at 12:52 pm

  25. Dr. Oransky, in your original blog post about your speech at TEDMED, you bragged your message being picked by mainstream media outlets, from The Atlantic to The Irish Times. I checked them all, and you know what? All these media stories had common decency not to ridicule the hereditary cancer community and the word “previvor”.

    I don’t see how the term “previvor” is relevant for you crusade against overtreatment of “pre-conditions”. The journalists didn’t seem to find a good connection, either. Pre-vivor is a precursor to exactly what health condition, in your opinion? What is this “vivor” “disease”, Doctor???

    Your uninformed use of the word “previvor” has become a painful distraction from the main message of your talk, but sadly, you are not ready to recognize your mistake or to have decency to apologize. Could you please articulate more clearly, how did “previvor” turn into a part of your supposedly “pre-disease overtreatment” talk, and why do you think that it was morally acceptable to have cheap fun at the expense of BRCA families?

    Dm

    June 14, 2012 at 6:27 pm

    • I’m certainly not trying to speak for Dr. Oransky and he can certainly speak for himself or correct me if I’m wrong- however I think what he was trying (and failed, at least in the video) to say was that the definition of the term is too broad, therefore leading to people who aren’t at risk seeking treatment as if they are. I know it came off badly in the video (at least it did to me) but I understand the point he was trying to make now.

      Michelle Malone

      June 14, 2012 at 7:06 pm

    • Dm, the subject of my talk was the disease model and medicalization. As I’ve explained a few times now, my concern is that a definition which includes too many people — in this case, one that basically includes all women, not just those at high risk — is the kind of definition that medicalizes every aspect of life in a way that I do not think is good for the public health.

      I appreciate your continued feedback on how I handled these issues in my talk, as I appreciate the feedback from others here and on others’ blogs. But it seems time to agree to disagree on whether the current FORCE definition is the best way forward given its vitally important goals and work.

      ivanoransky

      June 14, 2012 at 7:13 pm

      • Why, sure, I get it that we agreed to disagree how precisely a “previvor” should have been defined. Does it mean that we agreed to agree on the rest of it – that in practice, there has been no harm and no waste caused by the label “previvor”, and that the hereditary cancer sisters have been unjustly slighted by your comments? Do we fully agree that it was unethical to insinuate that FORCE was out to medicalize normal women health for a financial gain? It looks like we do agree on all that, then what else stands in the way of your apology?

        Dm

        June 15, 2012 at 2:11 am

      • Dm, the reason we don’t agree on why “previvor” is too broadly defined seems to be that we have different perspectives on the risks and harms of medicalization, so we are likely to disagree on a lot, including what you suggest here. In a comment I left in response to Joi Morris, I discuss these different perspectives, and why questioning a definition, and trying to make it more clear, is the opposite of maligning a group: http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/#comment-218

        FORCE does cite previvors in fundraising efforts. This is something the group tweeted just yesterday: http://www.facingourrisk.org/information_research/research-fund.php

        ivanoransky

        June 15, 2012 at 6:46 am

      • I think, in the big picture, the previvor world would appreciate you stepping back, taking a deep breath, and apologizing. You have now engaged us in a discussion of semantics. However, what replays in my mind is your decision to use us as a joke…a reality tv joke…and if we get cancer we are kicked off the island. I have retold this joke to several people in my life. People who supported me as I recovered from having my breasts torn out of my body….as I try to figure out who I am with fake breasts and no ovaries…at 35. Ironically, they gasp at your joke, not laugh. Perhaps, it is because they sense and feel my heartache?? Or maybe it’s because they are envisioning all the men and women in my family who have fought cancer?? Please, just apologize for your insensitive, poor taste, not funny at all, “jokes”.

        Sara

        June 15, 2012 at 12:38 pm

  26. I think you owe women with BRCA mutations an apology. In your talk you belittle the significance of having a BRCA mutation when you say it is “just a risk factor” and poke fun at us for calling ourselves previvors. We have almost a 9 in 10 chance of developing breast cancer, almost as much as a 1 in 2 chance of developing ovarian cancer… I imagine if you were a woman with a BRCA mutation and all of the women in your family with the mutation had died in their 40’s, you would also consider surgeries or increased surveillance in order to be around for your kids to grow up…
    I’m 38 and about to have my second child. I’ll be having my ovaries removed after this because I want to be around for my children. There is no good detection method for ovarian cancer, so this is really the best option for me. It’s not right to laugh at me for having to make this hard decision. I think you owe us all a public and formal apology rather than changing your “stance” to say it is all about the definition of “previvor”. I don’t really care about the word, I care about being able to prevent cancer.

    CBL

    June 15, 2012 at 8:57 am

  27. Dm, the reason we don’t agree on why “previvor” is too broadly defined seems to be that we have different perspectives on the risks and harms of medicalization, so we are likely to disagree on a lot, including what you suggest here

    Well, thanks for showing your true face, and for not hiding behind semantics of word definitions anymore. I actually think that we agree on a whole lot about dangers of overtreatment and overmedicalization of normal and near-normal conditions. But don’t twist my words. I wrote how you unjustly hurt the hereditary cancer community, and how unethical it was. This is what I actually wrote, and you just answered with a curt “negative”:

    Does it mean that we agreed to agree on the rest of it – that in practice, there has been no harm and no waste caused by the label “previvor”, and that the hereditary cancer sisters have been unjustly slighted by your comments? Do we fully agree that it was unethical to insinuate that FORCE was out to medicalize normal women health for a financial gain?

    Although we may share a lot of convictions of risk and benefits of medicalization of the norm, I’m disgusted by realization what kind of an “ally” we have found in you. This important cause deserves a better champion, not the one who is mired in unethical low-life attacks like yourself. Good bye.

    Dm

    June 15, 2012 at 1:07 pm

  28. Where have I heard this before:

    “poking fun at this kind of pathos is really in poor taste. At least as importantly, ridicule would obscure the fact that there’s a real and desperate human being in this story who made a choice that actually seemed like the best one at the time, given her options.”

    Oh yes, Mr. Oransky, words you posted about another medical condition fairly recently.

    Liz

    June 15, 2012 at 1:34 pm

  29. This “debate” certainly has changed since the controversial TEDMED lecture. That lecture was entitled “Pre-games, previvors, and pre-death: My TEDMED talk on what medicine can learn from Moneyball”, which ends with the statement “…in our healthcare system, we need to figure out is that really a good pitch or should we let it go by and not swing at everything”. It really does seem like the main point is that the preventative surgeries offered to BRCA positive women is overtreatment. It was never mentioned during the lecture that, for some individuals who are labeled previvors, the term is appropriate. It was also never mentioned that, given the cancer risks that many of these women face, preventative care is an excellent use of medical resources.

    With all due respect to Dr. Oransky, it appears as though the backlash that this talk created necessitated a change in your position. I believe this is why the “debate” has morphed into a dissection of five words. In fact, the “lesson” BRCA positive women could learn from Moneyball seems to be all but forgotten, except of course by the BRCA positive women who have watched the talk. Now it appears as though there is a “debate” about semantics with a very narrow focus on five words.

    These five words allow the inclusion of women with Li-Fraumeni syndrome, Cowden syndrome, Peutz-Jeghers syndrome, hereditary diffuse gastric cancer syndrome (just for a start), women with a history of LCIS, ADH, a previous history of radiation exposure to the chest wall, a strong family history of early onset breast cancer without a known gene mutation, a strong family history of early onset breast cancer with an uninformative negative BRCA testing result who have no living family member with breast cancer for testing, a mother who took DES during pregnancy, etc. This list is incomplete and exactly why the words “or some other predisposing factor” are necessary. It may seem this opens the door for “all women” to be considered high risk, but really this just opens the door for any women who is at high risk for any reason and does so without making the definition paragraphs longer and missing women who should be included.

    Previvors have something in common, their high risk for breast cancer and the choice to take action prior to being diagnosed. This choice is not an easy one and should not be taken lightly. FORCE has given these ladies a label, it gives them a common bond no matter the reason behind the preventative surgery. No one person should aim to divide these women by nit-picking the hidden meaning behind “some other predisposing factor”. I would suggest FORCE not make any changes to the current definition and instead, work to enlighten healthcare professionals and the general public about the multitude of other “predisposing factors” that put a woman at risk.

    I would also propose that we agree to drop this debate about these five words, congratulate FORCE and medical community for practicing what is probably the best example of preventative medicine since the advent of the vaccination, and move on to a real example of overdiagnosis and overtreatment.

    A genetic counselor

    June 15, 2012 at 6:21 pm

    • Dear Dr. Oransky,
      In response to the outcry from the hereditary cancer community regarding your crass and careless handling of our community’s word “previvor” you have done little more than focus on the semantics of three words in the definition intended to provide inclusion for a diverse group of women who suffer similar fates to women with BRCA mutations. The intention of FORCE in this matter is clear and your point is duly noted.
      Moving this discussion along to your place in all of this, I would like to provide a thorough analysis of your choice of words in referring to FORCE and the hereditary cancer community it represents.
      “If you survive until the end of my talk, you’ll be a previvor. Now, I made up “pre-death”…. I didn’t make up previvor. Previvor is what a certain cancer advocacy group would like everybody who just has a risk factor, who hasn’t actually had that cancer to call themselves. You’re a previvor. We had HBO here this morning, I Mark Barnett is in the audience, I’d like to suggest a reality TV show called Previvor. If you develop a disease, you’re off the island.
      First of all, in discussing previvor, you note you are referring to FORCE’s term. You ignore the genuine population to whom this term genuinely applies and infer that this organization, in some disingenuous way is recruiting previvors (rather than providing support which is the true intent). In turn, you make farce of the term previvor, which to many of my sisters in the hereditary cancer community has been a lifeline and an identity.
      Further, you go on to say, “We have advocacy groups, like the one who came up with previvor, who want to make more and more people feel they are at risk, or might have a condition so that they can raise more funds and raise visability, etc.” Again you infer that FORCE has some sinister motive in providing an inclusive definition of the term previvor. At this point, it has been pointed out many times that the motivation is truly the utterly benign intent to provide support to diverse women with similar issues.
      To quote you a final time, “There are no bad people, there are just bad incentives.” I personally believe that had you actually researched the support and advocacy group known as FORCE, you may have chosen to address this term with a bit more respect and sensitivity. As a good person, your hesitance to provide any type of apology causes me to believe you must be bound by bad incentives. We do live in a litigious society and I am sorry that causes you to withhold a due apology in addition to ordering unnecessary tests.
      I urge you to spend as much time responding to your own choice of words as you have on the three words “other predisposing factors”. The hereditary cancer community struggles constantly with misunderstanding regarding the difficult choices we must make regarding diagnostics and prevention. This community would really like to hear from you regarding three different words and those are “I am sorry”.

      Laura

      June 15, 2012 at 10:06 pm

  30. Dr. Oransky,in his video mocked and humiliated all previvors throughout the World who have been helped, educated and inspired by FORCE.
    In his video he laughed not only at the word previvor but also insulted FORCE who he says raise money from previvors.
    Whilst I have no respect for anyone speaking about things they DO NOT understand I would like to point out that FORCE has only ever sponsored the International previvor community and never had any aim of “making money”.

    Since the Previvor community has pointed out Dr Oransky’s mockery of both previvors and of FORCE he has come up with a new idea that he has a “problem with the deffinition” of the word previvor. If that was the truth then we would have heard it in his video. Did we? NO!
    Instead, we heard in his tone and in his words complete abuse and mockery of previvors and of FORCE.
    He is trying to get out of what he said by changing the issue. Typical journalistic tactics, that can not be respected by intelligent and educated people.

    Dr Oransky – YOU made a HUGE mistake out of ignorance.
    YOU owe the Global Previvor Community an apology.
    YOU owe Dr Friedman an apology.
    YOU owe FORCE an apology.
    After all three apologies then maybe you will be able to regain a small amount of self respect.


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