Thursday, June 14, 2012

My most recent response to Dr. Oransky

Dear readers,

There is a rather heated discussion going on with Dr. Oransky on his blog about how to define the term "previvor" and whether Dr. Oransky appropriately used the term in his TedMed talk in recent weeks.  Check out Tuesday's blog below for the full history of this issue.

In the meantime, I thought you might like to see my most recent response to Dr. Oransky.  Dr. Oransky's response to me was:
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.
And I posted the following response on his blog:
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 it 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 matt ers that are indeed excessive, then your continued attack on the the high-risk community really weakens your argument. Respectfully, Joi

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Tuesday, June 12, 2012

Is your doctor or genetic counselor a disease monger?

Diseasemongering. Wow, what an ugly term. And one I had never thought would be associated with a doctor's counseling of patients with BRCA mutations that cause significantly increased risk for breast and ovarian cancer. Yet this is precisely what one speaker did in a recent TedMed presentation.

For those unfamiliar with TedMed this is what it is:
TEDMED is a community of people who are passionate about imagining the future of health and medicine.

Once a year, TEDMED holds a "grand gathering" where leaders from all sectors of society come together for three and a half days. They explore the promise of technology and the potential of human achievement. This unique event combines dazzling celebration, high-powered learning and unforgettable theater.

TEDMED is the only place where a Nobel Prize winning neurobiologist has a conversation with a four-star general… where an opera singer (with a double lung transplant) chats with a NASA space physician… and where a ballet dancer talks to an exoskeleton designer.

Together, they weave a tapestry that combines the best thinking from every field and creates infinite new possibilities.

TEDMED has no agenda and no policy prescriptions. Instead, we seek to serve the nation -- and the world -- by creating a safe place where people with very different ideas can come together to talk, to learn and to celebrate the amazing world we live in.
The 2012 TedMed included Dr. Ivan Oransky, whose clever and memorable 10-minute talk used the example of MoneyBall to make the point that the health care industry wastes billions of dollars treating not diseases but the preconditions for such diseases.   He starts with the point that the healthcare system is incapable of predicting what will happen to people who have a "pre" condition and he uses humor to make his point by saying we all have the condition "predeath."  His talk used a variety of examples, including "subclinical acne," "prehypertension," "prediabetes," and "preanxiety,"  among others.   He jokingly says that if the audience survives to the end of his talk they will be "previvors."

Up to this point in the talk I had agreed with many if not most of Dr. Oransky's points. But starting at the 5 minute 30 second mark, Dr. Oransky begins an attack on women like me who have BRCA mutations, on the medical community that treats us, and upon FORCE -- the only advocacy organization that provides education, support, advocacy and research for this community -- that is both shocking and disturbing.
"I made up "predeath" .... I didn't make up previvor. Previvor is what a particular cancer advocacy group would like everyone who just has a risk factor but hasn't actually had that cancer to call themselves."
He goes on to poke further fun at the term previvor by suggesting that there could be a new reality TV show for previvors where if a participant develops the disease they are off the island, which got a good laugh from the audience.  Then he took another hard hit at FORCE:
“We have advocacy groups like the one that’s come 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 visibility.”
Now those are harsh words and an accusation against FORCE that really cannot go without response.

Point 1: Use of the term Previvor

Dr. Oransky says that all of the "preconditions" about which he talks are "preposterous."  This and the other direct criticisms of "previvors" are in my opinion a direct belittling of the hereditary cancer community.  I can only hope that it is because Dr. Oransky, although medically trained, somehow missed the training on cancer genetics and is speaking out of lack of knowledge.  He advocates that the medical community should not seek to identify people with "pre" conditions, including women who carry BRCA mutations, because this is "overmedicalization" and people with preconditions might not go on to develop the disease.   OK, he is right.  Having a BRCA mutation is not a 100 percent guarantee that breast or ovarian cancer will develop.  But the odds are overwhelmingly stacked against such a woman.  Dr. Oransky need not go back to medical school to gain a better understanding of the odds, he need only consult the excellent web-based decision tool developed by Stanford Medical School to learn that if he were to have a 25-year-old BRCA1-positive daughter, her odds of being alive at age 70 without having developed breast or ovarian cancer are only 15 out of 100 if she does nothing. (For comparison purposes, women in the general population have a 79 percent chance of living to age 70 without developing these cancers)  If she were to not know about her genetic risk and were to follow the USPSTF recommendations to begin mammography screening at age 50 her odds would not change at all, she would only have a 15 percent chance of living to 70 without developing breast or ovarian cancer.  BUT if the medical community can find and counsel her about her risk then her odds of being alive and cancer free at age 70 begin to rise.  Being armed with knowledge is where lives can be saved.

I would urge Dr. Oransky to contact some of the many women who have responded to his blog and talk with them about their family cancer history.  I have a friend with a BRCA1 mutation who celebrated her 47th birthday in recent months.  It was an emotional birthday for her as she is the first female member of her family reach age 47 in at least 3 generations.  All of the other women in her family died of breast cancer before this this age.  Does she consider herself a previvor?  To be honest I haven't asked.  But what most of us living with BRCA mutations but without a cancer diagnosis consider ourselves is lucky.

Sue Friedman, the founder and executive director of FORCE, wrote a letter to Mr. Oransky as well as a blog post taking exception to his TedMed presentation and attack on the hereditary cancer community.  Mr. Oransky has now issued a response which continues to criticize FORCE for its definition of the term "previvor," which he believes is excessively broad.  Mr. Oransky says he would like to engage in a dialogue about the definition of the term "previvor" but at no point does he apologize for his attack on FORCE and on the hereditary cancer community.  Rather than spreading life saving information about hereditary cancer risk, Dr. Oransky has sidetracked the discussion by belittling the term previvor.

Point 2: FORCE does not want to make more people feel they are at risk so they can raise funds

I find Mr. Oransky's point that
“We have advocacy groups like the one that’s come 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 visibility.”
also troubling.  Part of FORCE's mission is to raise awareness so from that perspective, yes, FORCE does seek to raise visibility.  And yes, FORCE does seek to raise needed funds for its mission.  But Mr. Oransky implies that these goals are self serving and do not provide any public benefit.  This is where he is wrong.  A quick look at FORCE's publicly available financial data reveals an organization that is unlike most other breast cancer charities because it does not spend a dime on professional fundraisers and very little on paid staff.  In 2010 FORCE spent only $121,000 on salaries for 6 employees and performed the vast majority of its mission with the use of volunteers.  Other breast cancer charities spend hundreds of thousands of dollars on fundraising expenses and millions on salaries.  FORCE does not and is not seeking to raise money to make itself or its employees rich.

As for his point about making more people feel they are at risk, again this implies that there is no real risk, which is not the case.  Rather, with respect to HBOC, the risk is real regardless of a person's knowledge of that risk.  We do not know how many people have BRCA mutations or other mutations that put them at high risk for breast or ovarian cancer, but what we do know is that every week women find out about their BRCA mutation after a breast or ovarian cancer diagnosis.  Many of these women are my friends and, unfortunately, I have been to the funerals of women diagnosed with hereditary breast cancer whose lives very well might have been saved had they known about their BRCA mutation before their cancer diagnosis rather than after.  This is why FORCE seeks to raise money and raise awareness:  to save lives.  And research shows that it does work.  Check out this archived blog post about the positive benefits of risk-reducing strategies for BRCA-positive women.

Mr. Oransky owes the hereditary breast and ovarian cancer community and FORCE an apology for poking fun at women have paid for lack of knowledge with their very lives.  Being a previvor means making some difficult and painful choices.  Choices that most of us would very much rather not have had to face.  No woman removes her breasts lightly.  Mr. Oransky's current offer to quibble over the semantics of the definition of previvor is disrespectful of the women who face these decisions, as was his misuse of the term in his talk.

Mr. Oransky, your next story should be about a high-risk family with a BRCA mutation.  I suspect you will find that the odyssey through the medical care system is not what you might expect.  And I know where you can find some names: through FORCE.

Do I think the doctor who initially recommended genetic testing to me was disease mongering?  No, I don't.  I believe he saved me from the cancer diagnosis that my mother received when she was far younger than I am now.  And he may very well have saved my life.  Has my genetic predisposition to cancer been overmedicalized?  I don't think so.  Do I consider myself a previvor?  Perhaps, although I don't think about the term much.  I just consider myself lucky.

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Thursday, June 7, 2012

Celebrate the Women in Your Life

Our Honorees: Jan, Linee, Monica, and Charite
Photos by Lyndsey Yeomans
Jack and Lola Photography 
Celebrate the Women in Your Life was a celebration of life, love, friendship and honor.  Sunday June 4th in Venice, California more than 100 FORCE friends and family came together to celebrate the women in our lives and to raise money for hereditary breast and ovarian cancer research.  Our event was hosted by Switch Studios and our hosts Matt and Nadja could not have been more gracious and helpful.  The celebration included two screenings of the Glamor Reel Moments film A Proper Send-Off directed by Eva Longoria based on the story of our friend Jan Livingston Mokhtari as well as a champagne brunch, silent auction and ceremony to honor  four women who have helped raise awareness of hereditary breast and ovarian cancer and who have made a significant difference in the lives of others, including Jan Livingston Mokhtari for sharing her story in A Proper Send-Off; Linee Zajic for her multiple volunteer roles with FORCE including LA Outreach Coordinator, Director of Healthcare Partnerships and Director of Outreach Western Region; certified genetic counselor Charité Ricker for her work with FORCE and for her outreach to the underserved Spanish speaking population of high-risk families; and certified genetic counselor Monica Alvarado, for being one of the first FORCE volunteers, for serving on the FORCE Healthcare Advisory Board, and for her unwavering willingness to be of help wherever and whenever needed, including with outreach to the Spanish speaking community.

Jan Livingston Mokhtari
I met Jan three years ago when Jan and her sister Stacie began to attend FORCE meetings. Jan has known that she carries a BRCA2 mutation since 2004 but really her family story goes back much farther than that. Jan’s mom was diagnosed with breast cancer at age 41, and Jan’s grandmother had died of breast cancer when she was in her 60s. When Jan's mom and grandmother battled breast cancer, the BRCA genes had not yet been discovered. When Jan was in her 20s her mother battled breast cancer for a second time, then her family got another shock: her 32-year-old cousin was diagnosed with breast cancer. The cancer, which was originally believed to have been was caught early, claimed her cousin’s life a mere 18 months later. But Jan and Stacie’s cousin left them a gift, the gift of knowledge that their family’s repeated struggles with breast cancer were caused by a BRCA mutation. Jan was 31 and newly married when she learned that she had a BRCA mutation. Stacie got the same news, both sisters share their mother’s genetic legacy.

Jan launched into the odyssey that is high-risk surveillance for breast and ovarian cancer and after a couple of years her doctors began to talk with her about the option of preventive mastectomies. Not knowing any BRCA carriers outside her family and being frankly quite scared of surgery because of her mother’s experience, Jan found FORCE and attended her first meeting, where she was relieved to learn that preventive mastectomy was not the mutilation that she had feared. Jan ultimately made the decision to have prophylactic mastectomies after the birth of her second child.

In the weeks leading up to her surgery, she began telling friends about her decision and her friends took it into their own hands to create a proper send-off for Jan’s breasts. One friend mentioned casually doing a boudoir photo shoot as a farewell to her breasts. Jan envisioned something with a friend in the privacy of her own bedroom but that is not what happened. Two weeks before her surgery she received a call from a producer she had never met telling her that she would have a professional shoot at a studio in Hollywood four days later and that all of the professionals involved would be donating their time. The photographer was none other than Robert Ascroft, whose magazine covers and celebrity shoots are famous. Much of the rest of the story is wonderfully told in the film A Proper Send-Off.  Robert Ascroft, make up artist Su Han, who also donated her time for Jan's special photo shoot, and actress Victoria Smurfit, who played Jan's friend in the film, all attended our celebration and screening, which made it even more special.

Many thanks to all to helped create the day and many thanks to everyone who attended.  The day was wonderful beyond compare because you were all there.  Together we raised more than $10,000 for the FORCE Hereditary Cancer Research Fund.  Our goal is to find better prevention and treatment options and to save lives.  Together we can make a difference.

Finally, many, many thanks to our sponsors, without whom our day would not have been possible.  Special thanks to our gold sponsor the Center for Restorative Breast Surgery in New Orleans, who donated the iPad for our raffle as well as to govino for donating the festive champagne flutes for serving our mimosas and bellinis.  Thanks to Lyndsey Yeomans of Jack and Lola Photography for donating her time to photograph our event.  We will be posting more photos on the LA FORCE Facebook page.


Event Sponsors

Gold Sponsor

Silver Sponsors

R. Kendrick Slate, MD: Plastic and Reconstructive Surgery,
Cedars-Sinai Medical Center

Kouros Azar, MD: Plastic and Reconstructive Surgery, Thousand Oaks, California

Huntington Reproductive Center Medical Group

Govino, the ultimate go anywhere wine glasses.


Friends of FORCE

Richard P. Frieder, MD: Gynecology, Obstetrics and genetics

Andrew Da Lio, MD: Plastic and reconstructive surgery, UCLA

Diagnostic Automation Inc.

The Cole Family

The Mokhtari Family


With Special Thanks to:

Our Photographer: Jack and Lola Photography

Photographer and Director Robert Ascroft

Actress Victoria Smurfit


Our Host: Switch Studios
Our hosts: Matt and Nadja

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