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A Public Response to Dr. Ivan Oransky

To put this post in context, I was forwarded the link to this webcast from the recent TedMed Conference. I suggest watching this presentation by Dr. Ivan Oransky prior to reading the following blog.

Dear Dr. Oransky,

I recently watched your TedMed presentation and I share your concerns about medical overtreatment of certain conditions and the importance of weighing risk and harm when considering medical interventions. I agree with your point that not all medical tests and interventions have clinical value. I also agree that all stakeholders should share the responsibility for appropriately applying medical technology based on evidence and outcomes. However, I disagree with some of your statements, and 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.

In my opinion, your assertion that advocacy groups use “previvor" to make more people feel they are at risk and raise more funds is incorrect. I founded FORCE in 1999, not to make money, but to ensure that people have access to credible information about hereditary cancer, that hereditary cancer research continues to provide better options, and that no one must face it alone. FORCE does not inflate people’s risk. We refer people to genetics experts based on professional consensus guidelines published by the National Comprehensive Cancer Network (NCCN).

Further, previvor is a term developed for a group of people who carry a mutation that confers a high cancer risk in their lifetime. FORCE is a national non-profit organization with a mission to serve individuals and families with a BRCA gene mutation or hereditary cancer. We coined the term to refer to individuals who are genetically predisposed to cancer but have not been diagnosed. The term was a response to a plea by one of our members who lost her mother to cancer at a young age. Learning that she had inherited a BRCA1 mutation and potentially faced the same fate, she sacrificed her own breasts, ovaries, and fertility to reduce her very high risk. Yet she felt dismissed and marginalized by people who did not understand her situation. She articulated what many in our community felt: they needed and wanted a way to collectively organize, support each other, and advocate for resources to address their unmet needs.

My own breast cancer was diagnosed at age 33 and recurred the year following my initial treatment. I endured chemotherapy, radiation, and an increased likelihood of an early death from cancer. My son was only two years old at the time. I was forced to take a leave of absence from my work during treatment and went into medical debt to pay hospital and treatment costs. Had I known of my inherited predisposition at the time I would have taken steps to avoid cancer or detect it earlier. My experience is just one illustration of the financial, emotional, and physical costs of not knowing about a genetic predisposition to disease. These burdens impact entire families and can affect long-term quality of life. Many women pay with their lives.

Too many hereditary cancer families have watched their loved ones battle and too often lose their lives to the disease. They want to know what they can do to avoid the same fate for themselves and their own children. They face lifetime risks for cancer as high as 90%. Their risk-management options—preemptive surgery, risk-reducing medications, and heightened surveillance—are not without side effects or other risks. complex information about risk and risk-management and using it to make informed decisions. Although risk-management options are not ideal, most genetics professionals concur that hereditary cancer risk assessment and associated interventions have clinical utility. Research from peer-reviewed journals demonstrates that risk-management options can lower cancer-associated and overall mortality in the highest-risk cohort.

As an organization whose mission includes education, FORCE understands the challenges of presenting complex information in a balanced, understandable, compelling, and humane fashion. We take this responsibility seriously and we frequently consult with our expert advisory board for guidance. It is my opinion that your representation of previvors and our advocacy for the community was neither balanced nor accurate. Your baseball analogy illustrated your point about overtreatment of pre-conditions, but you neglected to mention inherited cancer risk, the situation for which the term was established. You cited “pre-acne” as an example of the absurdity of treating a precondition, even though the consequences of a diagnosis of acne and a diagnosis of cancer are not remotely the same. Women with BRCA mutations have elevated lifetime risk of developing breast and ovarian cancer that is many times higher than the general population. They are more likely to develop aggressive cancers and at a younger age when they are less likely to be screened. Thousands of women die from these cancers annually. Given these facts, the example of pre-acne is not a realistic comparison to inherited cancer risk and in my opinion insults a group of people with a very serious set of medical concerns.

Members of our community have an inherited mutation that leads to changes on a cellular level, which put them at very high risk for disease. Although our genetic differences may not be obvious on the surface they cause challenges that separate us from other people who do not possess these mutations. Ignorance and ridicule directed at people with medical challenges of any type are inappropriate.

I hope that you will provide a clarification of your statements about the meaning of the word previvor to include the fact that it was coined to describe and empower a specific group of people at very high risk for a deadly disease like cancer. Further, I encourage you to use your role as an experienced medical journalist and professor to delve more deeply into the difficult issues of people with BRCA mutations. In doing so you have the potential to make a positive impact on a lot of people.

I am not a baseball player, Mr. Oransky, but I do play tennis. In tennis when you do not swing at the ball, you lose the point. People with a BRCA or other inherited cancer-predisposing mutation face extraordinary risk for a disease that is too often fatal. Many of us have lost so much to cancer. Not swinging at a disease that has a high likelihood of coming our way is not a wise option.

Posted in: FORCE And FORCE Impact, Hereditary Cancer - General
Tags: BRCA, Hereditary Cancer, Breast Cancer, Cancer Prevention, Genetic Counseling, Genetic Testing, Prophylactic Mastectomy, BRCA1, BRCA2, Previvor, Prophylactic Surgery, Gene Testing, Survivor, Young Survivor, Exercise, Ovarian Cancer Early Detection, HBOC

4 Comments

June 12, 2012

Kate says:
Sue - Thanks as always for representing our community so passionately and eloquently! Kate

June 12, 2012

Carol says:
AMEN SISTER!

June 12, 2012

says:
Double amen from Lori. BTW in my web search about this man I found that Ivan asked his tweet followers to suggest words and perhaps only then did he learn the word 'previvor'. I pasted it here: Ivan Oransky ‏@ivanoransky Help me out: Looking for uses of the term "pre-[disease]" eg "pre-diabetes," "pre-hypertension," etc. I have a list, want more. Thanks! Details Reply Retweet Favorite Michelle N. Meyer ‏@MichelleNMeyer Follow @ivanoransky You mean like "previvor" (usually wrt cancer)? See, e.g., https://www.facingourrisk.org/FORCE_communit …. Also similar: various uses of "subclinical."

June 12, 2012

Lori A. says:
I found Ivans tweets! Ivan Oransky ‏@ivanoransky Help me out: Looking for uses of the term "pre-[disease]" eg "pre-diabetes," "pre-hypertension," etc. I have a list, want more. Thanks! Details Reply Retweet Favorite Michelle N. Meyer ‏@MichelleNMeyer Follow @ivanoransky You mean like "previvor" (usually wrt cancer)? See, e.g., https://www.facingourrisk.org/FORCE_communit …. Also similar: various uses of "subclinical."

June 12, 2012

Carol says:
PREsumptuous, PREconceived, PREACHiness, PREtentious, PREordained,PREinformed, PREcritical, PREfocused, PREsuming, PREACHifies, PREclude, PREjudge, PREhistoric,.What more is there to say? I'm a breast cancer survivor and a 2 time ovarian cancer survivor. Maybe he'd like to tell the 3 children of my late sister who died of breast and ovarian cancer that they shouldn't be concerned about being PREvivors. He is PREposterous!

June 12, 2012

says:
Sue- I watched the presentation and also read your blog. I agree with you that he absolutely went to far when talking about the word "previvor". He has no idea what women and men go through when faced with hereditary cancer, what their families go through, and the worry it causes. Comparing acne to cancer is like comparing apples to oranges; it's just completely inaccurate. A person with acne does not have to go through chemo treatments, radiation, nausea, diarrhea, losing hair or losing their life. He was way out of line comparing acne to cancer. I do agree that sometimes things are over treated, but not with hereditary cancer. Great blog! Julie post

June 12, 2012

Suzanne Citere says:
Excellent reply Sue!

June 12, 2012

facingourrisk says:
Excellent comment on his blog: http://theoranskyjournal.wordpress.com/2012/06/05/pre-games-previvors-and-pre-death-my-tedmed-talk-on-what-medicine-can-learn-from-moneyball/

June 12, 2012

Carey says:
Thank you Sue your reply was perfect! He is exactly the kind of doctor consumers need to be afraid of. He's the kind of doctor that caused me not to be diagnosed until cancer was stage 4. Too be sarcastic "Oh she's perfectly healthy, that cyst in her breast is nothing , or her family history of cancer means nothing. She's fine." Sue please never stop fighting for us! I love you!

June 12, 2012

says:
I just listened to the webcast. Wow love, love, love your response. I also want to send you a big warm heartfelt hug for all that you do. because you have empowered so many women and families with knowledge and truth. My family is now walking around in the dark and knowledge and truth are powerful in making informed decision. GOD bless you.

June 12, 2012

ivanoransky says:
Thanks for all of the feedback and discussion. I've responded here: http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/ I look forward to more conversation.

June 12, 2012

facingourrisk says:
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

June 12, 2012

Lee Asbell says:
http://leeasbell.wordpress.com/2012/06/12/brca-genes-dr-ivan-oransky-previvors-and-common-sense/ A link to my thoughts on this topic.

June 12, 2012

Previvors have powerful knowledge « Ellyn Davidson says:
[...] Oransky, I hope you will learn more about hereditary cancer mutations, about previvors and about this wonderful organization that continues to save lives. Share [...]

June 12, 2012

Lee Asbell says:
Sue, Now that Dr. Oranksy has made a public reply I hope we will hear more from you on this topic. Many thanks for your continued good work. Cheers, Lee

June 12, 2012

Robin says:
Thank you, Sue, for your well-articulated points and your compassion.

June 12, 2012

says:
Sue, Thank you for your levelheaded response to Oransky's ill-conceived and—frankly—inflammatory talk.

June 12, 2012

Lori A. says:
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

June 12, 2012

says:
Sue, wonderful response and thank you for all your do for the BRCA community. We are blessed to have you as our leader!

June 13, 2012

facingourrisk says:
Dear Friends, here is a link to a letter signed by members of FORCE's Board of Directors, Advisory Board, and staff in reply to Dr. Oransky's presentation. https://www.facingourrisk.org/advocacy/documents/2012-dr-oransky-response-website.pdf Note that two additional signatures were added since sending this to Dr. Oransky.

June 13, 2012

Gail Escobar says:
Excellent response to a medical "professional" who is clueless!!!

June 14, 2012

JanetheWriter says:
Sue, thank you for your response to this doctor's remarks. You've inspired me to write my own response (blog style) to Dr. Oransky: http://janethewriterwrites.blogspot.com/2012/06/my-three-names.html.

June 14, 2012

says:
Sue, this is a beautiful response that captures the expereinces of previvors in such and honest manner. As a researcher in this field, I have seen first had the benefits of women being aware of thier risks. Thank you for all that you and FORCE do to improve the lives of women everywhere!

June 14, 2012

crunchster says:
Dear Sue, Thank you for being the face and heart of this organization. Your patience and forbearance in trying to rebut this unwarranted attack bespeak a level of class that Dr. Orlansky would do well to emulate. Unfortunately, he seems to choose defensiveness rather than candor.

June 14, 2012

Sonja says:
I am a 4 time survivor...2x breast, 2x ovarian, with the first diagnosis at age 24. I carry the BRAC1 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, glib and uninformed. I wonder if you would have the courage to sit down with my two BRAVE and COURAGEOUS PREVIVOR daughters face to face and share your thoughts with them? I think not! My girls spent many years witnessing the difficulties of facing cancer...they decided to take the power OVER cancer! They took their chances of developing breast ca down from 87% to 1%...they will address the issue of their 60% chance of ovarian ca in the near future. For your sake, 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.

June 16, 2012

BRACHA - living with a high risk of hereditary breast and ovarian cancer says:
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.

July 4, 2012

says:
Sue, I have one word for your responses-brilliant! Thank you for all you do.

A Public Response to Dr. Ivan Oransky

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A Public Response to Dr. Ivan Oransky

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