Ivan Oransky, executive editor of Reuters Health, delivered a clever TEDMED 2012 talk on pre-disease states. He’s blogged a bit about it, and TEDMED just posted a video of the talk on YouTube.
The following guest post is by Michael Joyner, MD, a medical researcher at the Mayo…
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This is awesome….He says he’s pretty sure he diagnosed himself with ‘pre-anxiety’ in the green room…
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!
As person with the BRACA gene, I am very aware of the risk, I haven’t done all the surgery yet because
of other health issues. So I chose to be monitored more closely. I don’t like doing any more testing than
nessacary ,but I am aware of my risks as a previvor.
I guess you, or anyone you are close to, are not at risk for life threatening herditary diseases? So you can dismiss those of who are?
Do you have a genetic disease in your family that pre-disposes you to cancer? If not you have no right talking about something you CLEARLY no nothing about.
After watching about 7 of my grandfather’s siblings passing, ALL of my mothers first cousins fighting breast cancer and 3 passing, and my mother fighting 2 types of cancers, I felt highly blessed to have the knowledge of my BRCA2 status. I am a mom if 5 and I have seen too many young moms die due to cancer because they didn’t know of their BRCA status in time, therefore not doing preventative surgeries. You comparing this to losing some weight so you won’t become obese, or pre-acne is heartbreaking for us that have a difficult time due to cancer. An 87% chance of getting breast cancer isn’t wise to take so lightly. I truly hope you realize that difference now. :( thank you, Devon Roell, a “previvor” and part of that amazing cancer group who isn’t trying to “make people think they ate at risk to get more funds”
You are the kind of doctor who caused me to end up with stage 4 breast cancer at 45 years of age. As health care consumers we need to watch for you. I have learned from people like you that I have to be proactive with my health. and my children’s health. If you could prevent your child from contracting a deadly disease would you? Hereditary cancer usually surfaces 10 years early then the previous generation. You have no idea what you are talking about with regards to cancer. Medical science has worked so hard to learn about genetic disease your basically bashing it. The hereditary cancer community deserves a big apology from you.
I think before criticizing the previvors who have the BRAC breast and ovarian cancer gene mutations, Ivan Oransky should think long and hard about the lives saved by the surgeries that these women like myself have to go through to prevent the risk of these cancers. Knowledge is Power and saves lives.
Thanks for all of the feedback and discussion. I’ve responded here:
I look forward to more conversation.
Wow~ surely this much ignorance does not come through the mouth of a well educated person. So sad. I am NOT a pre-vivor. I am a SUR-vivor of unterine cancer @29 and breast cancer @42. Yep. 2 times THEN …thankfully a genetic test showing me why. BRCA mutation. Both my son, daughter and sister have tested positive for it. I am praying that they with preventative surgeries remain PREVIVORS ( Thanks FORCE for giving a term that is music to my ears ) Please educate yourself first Mr.Oransky before you give scary advice to a group already struggling with very difficult decisions. Many educated people , including my oncologist would not be advising like they do if this were not an ugly monster that can rear its head at earlier ages then the general popluation! Research sir…It will help you greatly!!!!
I want you to know that previvors may not have had cancer, but we most certainly *know* cancer. Please do not judge us and our decisions until you have some personal understanding about what it’s like to lose someone very close to you to cancer and know that your risk of having the same fate is so great. I can assure you that we don’t take these decisions lightly. FORCE advocates for us so that we may have more and better options for ourselves and future generations. I just want you to know that.
Dr. Marya Zilberberg has written about this exchange of perspectives on her blog.
I am a 4 time survivor
2x breast, 2x ovarian, with the first diagnosis at age 24. I carry the BRCA1 gene. I have 2 daughters, ages 22 and 27. They both carry the gene. After a year and a half of seeing genetic counselors, many doctors, much debate, discussion and lots of prayer they both made their own decisions. 2 and a half weeks ago they both had mastectomies and the beginning of reconstruction at Stanford on the same day, with the same teams of doctors. They are recovering beautifully and with plenty of pride!
To Dr. Olansky
I only have to say SHAME ON YOU!! I find your thoughts arrogant, 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.
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.”
BRCA+, preventative bilateral mastectomy, hysterectomy and member of the “choose your label for lucky to be alive” community
Other noteworthy blog posts in reaction to this discussion come from:
Sue Friedman at http://facingourrisk.wordpress.com/2012/06/12/a-public-response-to-dr-ivan-oransky/
Jody Schoger at http://womenwcancer.blogspot.com/2012/06/much-ado-about-lot_13.html
Ivan Oransky at http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/ (where many commenters have left other links to other blog posts and commentaries)
It is an interesting point that you make, Dr. Oransky. Both doctors and patients are presented with so much information in our modern age, and the potential for even more health data through testing, that finding the right balance between investigation (and the associated costs) and effective prevention and treatment can be tricky. You are correct that medicine is not free. The cost of insurance (which benefits many) is impacted by over testing. The main problem with your line of argument, however, is that it casts a broad swath across all medical conditions. Your premise seems to treat obesity, ovarian cancer, and anxiety as equals. While “preobese,” and “preanxiety” may get laughs, precancer is not funny. Ever. I am writing because you have a forum where you have the ability to influence people, and my hope is that my perspective might influence you to reconsider your approach to this topic.
Consider this, if I told you that if you crossed a certain street at a given point there was an 8% chance you would be hit by a car and possibly killed or paralyzed. Well, you might cross while exercising some caution. If I told you there was an 87% chance you would be hit by a car crossing at that point, but only a 2 % chance of being hit be crossing at a point further up, my guess is that you would be pretty happy to get that information and–I’m also sure you would not chance the 13%. You would walk up the road and cross at the safer point. Either way, with odds looming so large, this information would not be something you would ignore. Rather, you would seek it out in the hope that it would influence the outcome of your life. A life cut short verus a life lived out.
For those of us who come from families plagued by early and untimely deaths from hereditary cancer, this information about our genetic disposition truly gives us the opportunity that our mothers and aunts did not have. Let’s take my own mother. When she was 47, like her mother, my mother got breast cancer. Premenopausal and agressive. Six months of chemo later, she was clear. This was 1992. Her doctor did not suggest genetic testing. By your line of reasoning, her doctor followed your prescription–no testing, no worry about “precancers” like ovarian.
So my mother, whose half sister died of breast cancer in her 30’s, whose mother had breast cancers at 47 and again at 58, never was told about hereditary breast cancer which happens not randomly, but due to a genetic mutation. She never knew that if she had hereditary breast cancer and the genetic mutation, she had over a 60% risk of developing the “silent killer” known as ovarian cancer. She was done having kids. Chemo had thrown her into early menopause. Removal of her ovaries would have been easy and relatively inexpensive compared to what was to come.
Fast forward to age 55. Three weeks after a clean visit to her gynecologist, her breast cancer marker test came back elevated. Low and behold, she is then diagnosed with Stage IIIc ovarian (hence the “silent killer” name). What followed was truly tragic. At age 59, she died after a long and horrendous battle against the disease. No genetic testing so no one told her at age 47 that there was another place to cross the street, so to speak.
Imagine, Dr. Oransky, if someone would have thought to test her for a genetic mutation. If someone had “over medicalized her” and said, “Let’s see what your odds are.” What if she had been tested and given this information before she got ovarian cancer? What if in response to a positive result, she had removed her ovaries preventatively? The answer is simple; I would have a mother, my children would know there grandmother, and my dad would not have lost his high school sweetheart.
Where my I differ from my mom and grandmother is that by having access to testing, I was able to acquire the genetic information that allowed me to alter my course. Positive for a BRCA I mutation myself, I was the next generation up to bat. The difference– instead of choosing to play with my designated team (where I had an 87% chance of losing), I traded myself and chose to play with a different team (where I had a 98% chance of winning) at least in the hereditary breast and ovarian cancer game.
Just like in Moneyball, it was and is a numbers game for me. To win games you need to get on base. I plan to run the bases and play every inning of my game. Putting the analogies aside, I would ask that you reconsider your logic. Not all testing, diseases, and information are created equal. Just like in Moneyball, some stats matter more than others. Please don’t disparage all testing and prevention for all diseases. The quality of information, the severity of the illness, the overall risk and benefit are always unique. As such, do not lump those who call ourselves “previvors” with any other group. Whether we go by the catchy term “previvors” or you refer to us simply as “people who have an extremely high risk of developing breast and/or ovarian cancer due to a genetic mutation” doesn’t matter. We are a group of men and women who face daunting options, and we are empowered by each other. You know that is what FORCE stands for: Facing Our Risk of Cancer Empowered.
Losing weight for hypertension, and contemplating removing your breasts and ovaries, are quite simply not the same caliber of decision. The latter requires extensive research into options, outcomes and choices. This is where FORCE is most dear to us. Whether we choose to heighten surveillance or exercise prophylactic surgical options, we rely on each other and the doctors, nurses, geneticists, counselors, and friendships that FORCE puts at our fingertips.
I can appreciate the potential merit of your thesis regarding overtesting and the over-medicalization of society in general, but your ideas are trivialized by the defamatory claim you made against FORCE. To accuse this organization of using fear to raise money is as much distasteful as potentially actionable. Good arguments stick to facts, and in that regard your statement is baseless.
Finally, I must confess–I am envious of you. How nice it must be to be in a position where the sole thing your doctor tells you to do to be healthy is to lose weight. You are a lucky man. For the rest of us who have nursed our relatives through chemo and the unspeakable ravages of hereditary cancer only to bury them before their time, and on behalf of those who daily look at our children and vow to see their children, I boldly stand up and own our status as “previvors” and all the overmedicalization that comes with it! I am forever grateful that so many medical professionals have “over medicalized” hereditary cancer coming up with genetic tests to see if I am at risk, conducting research studies to give me options, and for giving me the opportunity to live out my life.
Thank you for the opportunity to express my view.
You have been given so much opportunity in life. Now it is your turn to look inward and ask yourself, as a physician, if you did no harm today. Unfortunately, today the answer is no.
All the woman in my family died of breast cancer, scientist developed a test, that can tell me that I have a gene mutation, that is the cause of the breast cancer in my family. I feel grateful that I will not DIE of Breast Cancer as I have the mutation, and had all the breast tissue removed from my body.
Your comments on Previvors is appauling.
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