Thinking about BRCA prevention 10 years after mastectomies

As we approach January 2017 I am approaching the 10-year anniversary of when I removed my breasts to prevent breast cancer due to my BRCA2 mutation (January 11, 2007).  I am immensely grateful to arrive at this season fully healthy and having never experienced the cancer my mother faced when she was a decade younger than I am now.  I am also grateful for the role that my BRCA mentors played helping me through that difficult time in my life. Those women who shared with me their experience of preventive surgery and let me see the results made me able to make that hard choice to remove my breasts to protect my health.  Being BRCA is not a sisterhood that I would have chosen but I am immensely grateful for the friends that I have met along this path. 

Thank you!

What is next?

Me, my husband and our sons in August 2016

In my family, the next generation is beginning to grapple with our genetic legacy.  My sons and niece are now in or approaching their 20s and will soon need to decide on testing for our family mutation.  While I certainly believe my choice to have surgery was the right one for me and I am grateful for my health, I remember before my surgery wishing there were other options.  I also remember thinking that for the next generation, there would be.  And yet, here we are 10 years later and women like us are still choosing surgery to protect their health.

I have done a lot of studying of what has made the greater breast cancer movement so successful in spurring new breast cancer research in the past three decades.  The answer is actually quite simple: women banded together and 1) raised their voices to demand better surgery and treatment options, and 2) women banded together to raise the money to fund that research.  This is something the BRCA community has really not done well.  We have come together to support one another through our personal journeys and certainly there are far more educational resources now than there were 10 years ago, but we as a community, by and large, have not yet said "we want our daughters (and our sons) to have better ways of preventing the BRCA cancers that they face."

I don't want to sit with my niece and tell her that the only real option for preventing breast and ovarian cancer is to remove her breasts and her ovaries.  And yet I fear that day will come far too soon.

HeritX

This is why when my oncologist friend Thomas Bock asked me to join a new organization he was forming to focus exclusively on research to prevent BRCA cancers, including the prostate and pancreatic cancers that threaten my sons, I said yes.  That was two years ago. I have learned a lot since then.  I have met hundreds of researchers, attended scientific conferences, reviewed grant applications and many other things I never thought I would do.  

In early 2015 I sat in the office of one of the scientists who discovered my BRCA2 mutation.  He is still one of the most prolific researchers in BRCA. When Dr. Bock asked him what research he was doing on prevention he responded that he was not doing any.  In fact, he said that because women seem pretty happy with surgery and it is effective, he didn't really see the need for BRCA prevention research.  I am happy to say that due to the work that Thomas and HeritX are doing he has changed his mind and his lab is now actively involved in designing BRCA prevention projects.  This is only one example.  There are many others.  The bottom line is that 2 years ago there was essentially no research focused on preventing BRCA cancers and now HeritX has not only launched a number of projects but has also brought together an international collaborative working group of scientists who believe in this goal and who are working on it with us.

I believe that we can influence the future.  

In early 2017 HeritX will be launching a vaccine prevention research project.  Can you imagine if a vaccine could be available that would prevent our BRCA mutations from causing cancer to develop? Wow.  That would be a gift for my niece, my sons and all of the next generation. Will it happen soon?  No, likely not.  But there are scientists who not only believe this is possible but are ready to undertake this work. I can think of nothing better to support with my efforts and my donations than this research.  It is important not only to my family but to many others.  You can find out more about HeritX at www.HeritX.org.

As you consider your year-end donation priorities, please think about making a donation to support this work.  As Hilary Clinton famously said in another context, "It takes a village."

Wishing you and your family a happy and peaceful holiday season and a very healthy 2017!


Joi


PS - My mom is fortunate to be a long-term breast cancer survivor.  We are raising money together for HeritX.  You can visit our fundraising page here.


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Ending the family legacy of breast cancer

This week CBS's 60 Minutes took an in depth view of PGD -- preimplantation genetic diagnosis -- in a segment called "Breeding Out Disease."  PGD is actually a technology that has been in use for several years and we discussed it in Positive Results. Use of  PGD though is becoming increasingly commonplace.  Where a few years ago the only couples considering this technology likely would have been those who needed assisted reproductive technology and who were considering IVF anyway, now couples who can conceive "the old fashioned way" are considering IVF and PGD to end their family cancer history.  After watching generation after generation of women battle breast cancer, ovarian cancer, or both, it is not surprising that today's empowered young women want to control the destiny of their children.  Increasing numbers of these women are saying "This cancer ends with me!"

Here is an excerpt from Positive Results that discusses PGD:

"This mutation ends with me.

I am NOT passing it on to my children."

~Amy

Pre-implantation genetic diagnosis (PGD) is the newest technology available for prenatal diagnosis of genetic disorders. PGD involves micro-dissection of an embryo at the eight-to-sixteen-cell stage of development after in vitro fertilization (IVF). At this early stage, all the cells are undifferentiated—they each have the potential to grow into the placenta, amniotic membranes, or the complete fetus. One cell can be removed from the cell mass and tested for genetic diseases without any ill effect to the developing embryo. Embryos that are free of the genetic condition, such as a BRCA mutation, are then transferred to the uterus. A number of companies now offer PGD through networks of IVF centers throughout the United States. For couples who require IVF in order to conceive a baby, this is a reasonable option for additional peace of mind. If you are interested in PGD, ask your IVF provider if it has a relationship with a PGD testing lab. For those couples who can conceive the “old fashioned way,” using PGD would require IVF, including ovarian stimulation, harvesting of eggs through a procedure, artificial insemination, and then implantation.

What the 60 Minutes segment on PGD did not discuss is the true latest in reproductive technology: egg harvesting and freezing.  As women are delaying not only having children but also marriage in favor of careers, an increasing number of BRCA-positive women are facing a cruel dilemma:  doctors recommend that BRCA-positive women (especially BRCA1-positive women) remove their ovaries between the ages of 35 and 40 but many of these women find themselves approaching this deadline without a mate.  The solution many of these women seek is to preserve their future fertility by freezing eggs in advance of removing their ovaries.  If these women elect to keep their uterus, they can carry a baby to term even without their ovaries.  One woman I met recently had a toddler on her hip who was conceived in this way called her son her "miracle baby."  And she is not alone in choosing this route.  The next logical question is "Can I test my eggs to see if I might pass along my BRCA mutation to a child conceived from this egg?"  Although it is early days for this technology, which is most still done through studies, the answer appears to be yes, the egg can be tested prior to freezing and storage.  Perhaps 60 Minutes will discuss this in it's next segment.




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Happy Previvor Day!

This year National Previvor Day coincides with the first day of Breast Cancer Awareness Month just in time to reinforce the message that women who are at high risk for breast cancer need to be aware of their risk in order to have effective options for preventing disease and/or for detecting it at its earliest and most curable stage.  Do you know if you are at genetic risk for breast or ovarian cancer?  For more information visit FORCE: Facing Our Risk of Cancer Empowered and read Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer!





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Breaking News!!! Supreme Court Invalidates Patents on BRCA Genes!

Today the United States Supreme Court made history when it unanimously ruled that the Myriad Genetics’ patents on the BRCA1 and BRCA2 genes were invalid.

Specifically, the court ruled:

“It is undisputed that Myriad did not create or alter any of the genetic information encoded in the BRCA1 and BRCA2 genes. The location and order of the nucleotides existed in nature before Myriad found them. Nor did Myriad create or alter the genetic structure of DNA.”

The Court acknowledged the work done by Myriad in locating the BRCA genetic sequence among the tens of thousands of nucleotides on each chromosome but held:

“In this case … Myriad did not create anything. To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention.”

So what does this mean?

• It paves the way for other companies to test for mutations on these genes and in fact companies have already stepped forward to offer BRCA testing.
• Patients will now have the opportunity for patients to get a second opinion to confirm their genetic test results prior to making life altering preventive surgery decisions.
• More women (and men) will have access to potentially life-saving genetic information because competition should lower the cost of these genetic tests
• No single company will be able to prevent others from conducting testing and research on the BRCA genes.

What does this decision mean for personalized medicine more broadly? This decision is a watershed moment with implications that reach far beyond the BRCA genes because approximately 25 percent of the humane genome has been patented. Several thousand companies currently own different slices of DNA and all of those patents have been invalidated by the Court’s decision.

The personalized medicine revolution is no longer being held hostage by the patent system.

Should you have questions about genetic testing, consult your genetic counselor and FORCE.




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Angelina Jolie’s Mastectomies: What All Women Need to Know

In light of Angelina Jolie’s announcement that she underwent a double mastectomy to prevent breast cancer, Books for Better Living asked Joi Morris, a woman who went through a similar ordeal, to share what every woman needs to know about hereditary breast and ovarian cancer risk.  The following article appears on the Books for Better Living website.


Angelina Jolie has made a career of playing strong women in film. By revealing that she had undergone preventive mastectomies to reduce her breast cancer risk arising from an inherited BRCA1 mutation, she is showing her mettle in real life. She wrote:

“I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.”

Jolie, who is 37 years old, is fortunate to have access to the best medical care available. She could make the many decisions required with the best information available on her cancer risks. I too faced these decisions after learning of my BRCA2 mutation. I too was fortunate to have access to excellent health care and the support of a loving husband. But the choices are nonetheless daunting and emotionally fraught and far from simple or straightforward.

When to Seek Genetic Testing

The first decision is whether to seek genetic testing. It is estimated that more than 750,000 people in the United States carry a mutation on either the BRCA1 or BRCA2 gene, with approximately 90% of them not aware they are at risk. Jolie could act to protect her health because she knew her BRCA1 status. I took the test because my doctor recognized that my family medical history suggested a risk for a BRCA mutation. My mother is a breast cancer survivor who was diagnosed at the age of 43, one warning sign of a BRCA mutation.

Should you consider genetic testing? Not everyone should be tested, but if you answer yes to any of these questions, then you should seek out a genetics professional to discuss your family history and the appropriateness of genetic testing:  Read more




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Angelina Jolie's mastectomies affirm that knowledge is power

I awoke today to dozens of emails from friends and family sending me links to Angelina Jolie's New York Times article about her decision to undergo preventive mastectomies because she is BRCA1 positive. This is indeed big news, mostly for Angelina Jolie and her family, but also for all of us who are part of the big "BRCA family." Those of us who have made the same life changing decision to undergo preventive mastectomies without a cancer diagnosis all identify with Jolie's decision.

"I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer." ~ Angelina Jolie

This reflects my experience exactly.  The decision to have preventive mastectomies is difficult and emotionally painful.  The decision was hard for me, as it was for Jolie and as it is for every woman who faces it.  Like Jolie, I kept the decision private until after the surgery, mostly to protect my young children.  I didn't want people asking me about surgery in front of them as I thought this might prove scary or upsetting.  After the surgery, I was happy to speak openly about my decision and the process.

At the time I made my decision to have preventive mastectomies in 2007, no celebrities had publicly discussed having a BRCA mutation or electing preventive mastectomies.  Had Angelina Jolie been a role model for me at that time it would have made a difference.  And I anticipate that it will make a difference to thousands of women now who are facing decisions about genetic testing and about protecting their health if they are BRCA positive.  At the time I tested positive for a BRCA2 mutation in 2006, the only other person I knew with a BRCA mutation was my mother, who had survived breast cancer.

Fortunately for me, I found FORCE: Facing Our Risk of Cancer Empowered, the national nonprofit dedicated to fighting hereditary breast and ovarian cancer through support, education, advocacy and research.  Through FORCE I met other BRCA-positive young women who had already made the decision to have preventive surgery.  Being able to talk to these women, to hear their stories, to ask them the questions that I could not ask my doctors--such as how they coped emotionally and how did surgery affect their sex life--was a turning point in my thinking. To see these young women, near my age or younger, who looked good and were happy with their decisions to have surgery, made what I had thought was an almost impossible decision seem reasonable.   Meeting them and seeing their reconstructed breasts was the key to my being able to make the decision to pursue prophylactic surgery.

It is has been more than six years since my preventive mastectomies.  In that time I have written a book to help other BRCA-positive women navigate the difficult decision-making process: Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer.  I have been a volunteer for FORCE to provide education and support for other women making these decisions.  I am an Advocate in Science for Susan G. Komen for the Cure because I think the only way for better options to be available is to participate in the research process.  And I have joined the Board of FORCE because I believe that of all the breast cancer groups out there it is the one making the biggest difference in the lives of women like me.

What is FORCE doing?  Here is a short sampling of the dozens of programs and initiatives in which FORCE is involved:

• FORCE is involved in advocating for women who are precluded from getting genetic testing because of Myriad's patent on the BRCA1 and BRCA2 genes.  FORCE presented testimony to the United State Patent and Trademark office on the impact gene patents on the hereditary cancer community and filed a brief with the United States Supreme Court seeking to have the patents overturned.
• FORCE is involved in advocating for genetic testing to be included in all health care coverage under the new Affordable Care Act for all women and men who need it.  
• FORCE is involved in advocating for expedited research and development of drugs for women currently fighting hereditary breast or ovarian cancer.
• Find out more about what FORCE is doing here and here.

I wish Angelina Jolie well.  I am thrilled that her husband, Brad Pitt, is supportive.  She has made a life-affirming decision both in proceeding with the surgery and in being public about it.  If you or someone you love is facing the same decision, know that you are not alone.  FORCE has volunteers who will talk with you any time.  Just contact the helpline.  And if you need answers to your questions, start with Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer.

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Supreme Court hears arguments today on BRCA gene patents

Today is a big day for the HBOC community. It would be impossible to miss the news that the Supreme Court is hearing arguments today in the case known as The Association for Molecular Pathology v. Myriad Genetics, a case that has been winding its way through the court system for more than two years.

I awoke this morning to an excellent story by Nina Totenberg of NPR wherein she states that "There is no way to overstate the importance of this case." I agree. This case is not only of the utmost importance to those of us who have BRCA mutations but also to all aspects of the upcoming personalized medicine revolution, which Ms. Totenberg elucidated well in her piece in which she described the financial incentives and impacts of the decision for the biotech industry. I am troubled though that one very important aspect was not covered in this story, especially as today is Tax Day. Specifically, no mention was made about the fact that the government is a big sponsor of biomedical research and in fact spent millions on the hunt for the BRCA genes through the NIH and then the genes were patented by a private company and none of that public investment in discovery was repaid. The story focused on the dollars spent by Myriad on the search for the BRCA genes and why it deserves to protect this investment through the patent process. But what about the public dollars, my tax dollars and your tax dollars? Has everyone forgotten that Myriad was far from the only team of scientists racing to find these genes? Many of those teams of scientists in this country and other countries were financed at least in part with public money. Myriad just happened to be the first over the finish line. Had it been Dr. Mary Claire King, whose research sparked the all out race to find the specific genetic code for the Breast Cancer Genes then I have no doubt that we would not be paying $3,400 per test for a test that is less than comprehensive. For more information about this race to find the breast cancer gene please read Breakthrough: The Race to Find the Breast Cancer Gene by Kevin Davies and Michael White.  It is an excellent read and an exciting story but it makes very clear the amount of effort that went into this discovery by people other than those scientists at Myriad.

My friend Joanna Rudnick, the amazing BRCA-positive filmmaker who made "In the Family" about living with a BRCA mutation wrote an amazing Blog about her journey about about her thoughts on today's Supreme Court arguments.  Please read her blog and share it with your friends.  Also, in honor of the Supreme Court arguments, POV is making In the Family available for free streaming for a limited time.  If you have not yet seen it, now is the perfect opportunity.  And please share your thoughts.

As Nina Totenberg said, the implications of this case reach far beyond the breast cancer genes, yet those of us with mutations on those genes are possibly the ones watching this case most closely. The NPR story can be found here.

Joi


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National HBOC Week

National HBOC week starts today.  As I mentioned in my Ms. Magazine blog post about HBOC week,  most people don't yet know about Hereditary Breast and Ovarian Cancer week even though Congress created this recognition more than two years ago.

Friends, please read and share this blog post by FORCE founder Sue Friedman and help us get the word out about Hereditary Breast and Ovarian Cancer.  The shame is not that people do not know about HBOC week, the real shame is when women are diagnosed with hereditary breast or ovarian cancer without ever knowing they were at risk for these diseases in the first place.  17 years of science has proven these diseases are preventable but that knowledge is the key to being able to take action.  Personally, I am grateful for the knowledge of my BRCA mutation that allowed me to pursue preventive surgery at the right time of my life to be able to prevent the breast cancer that attacked my mother when she was far younger than I am now.  What a blessing to be healthy and focused on my children rather than fighting for my life.

As Sue Friedman so eloquently says:

As today marks the start of the third National HBOC Awareness Week and next Wednesday is Previvor Day, our goal is to attract more attention than ever. Let’s focus on the positive, and use this opportunity to save lives through education. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the eduation, support, and resources they need to make informed decisions about their risk.

To celebrate National HBOC week this year I will be running in the Kickin' Cancer 5K to raise money for Hereditary Breast and Ovarian Cancer research.  Please support research to help find better ovarian cancer early detection and better prevention options for women at risk of hereditary breast and ovarian cancer.  

Please support my run or join my team!

Be well and be well informed!

Happy HBOC Week!

Joi

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A husband's BRCA birthday wish:

Friends, check out this heartfelt birthday video by Steve Hofstetter in tribute to his wife and FORCE:




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Ovarian Cancer Screening Ineffective

Yesterday the New York Times reported on the utter futility of screening for ovarian cancer.  The United States Preventive Services Task Force this week again confirmed that ovarian cancer screening, such as it is, fails to save lives.  Moreover, the USPSTF determined that screening may cause more harm than good in healthy average risk women because of false positives that lead to unnecessary surgery, which can have serious complications.  Accordingly, the USPSTF recommends against routine ovarian cancer screening for most women.  But the USPSTF was careful to say that its recommendation does not apply to women who are at high risk for ovarian cancer due to BRCA mutations or family history.  Unfortunately even for these women the sad truth remains, our current screening options are sadly and wholly inadequate.

As I have blogged before, September is Ovarian Cancer Awareness Month and women desperately need better options.  In fact my very first post pondered a world where men were as regularly recommended to remove their sexual organs for cancer prevention as are women at risk for breast and ovarian cancer.  No doubt the world would be a different place and the clamor for more research funding would be loud. Ovarian cancer prevention needs the same type of research funding as breast cancer. September is ovarian cancer awareness month and is represented by a teal ribbon. Yet our world is not bathed in teal in September the way it is bathed in pink each October even though ovarian cancer is one of the most deadly women’s cancers and effective early detection methods do not exist. Research money only comes to those who are loud and create a public dialogue. September needs to be bathed in teal.

Two years ago I had surgery to remove my ovaries to reduce my inherited risk of ovarian cancer. Six weeks later I celebrated my recovery from preventive surgery to remove my ovaries with a 5K run in the 9th Annual KICKIN’ CANCER! 5K Walk/Run and Women's Healthcare Expo to raise funds and awareness for the early detection and prevention of both ovarian and breast cancer. This year will be my third year as captain of Team FORCE and I am once again running to raise money for ovarian cancer research.

This year’s run is for me even more personal. A friend who this time last year was battling ovarian cancer will be walking with my team this year. I celebrate her recovery but that celebration is tempered with the reality that advanced ovarian cancer is rarely ever over. This truth was brought home to me at the beginning of the summer when another woman in our FORCE family lost her battle to ovarian cancer. Our team is dedicating our walk/run this year to Gloria Glaser and we will be joined by members of her family. I saw Gloria in March, at which time her ovarian cancer was thought to be in remission. She looked fabulous and was bubbly and full of life. Her recurrence was diagnosed two weeks after I last saw her and she was gone less than six weeks later.

I have been involved with FORCE, Facing Our Risk of Cancer Empowered, since 2006. FORCE is a national nonprofit dedicated to fighting hereditary breast and ovarian cancer. FORCE is a truly wonderful organization that is making a difference in the lives of high-risk women and men (yes, men do get breast cancer too and do carry mutations on BRCA genes). FORCE is partnering with the sponsor of KICKIN’ CANCER, the Lynne Cohen Foundation for Ovarian Cancer Research, to raise money for this important cause.

Team FORCE is raising money to fund research find cures and early detection options for ovarian cancer and breast cancer. Half of the funds raised by Team FORCE will go to the Lynne Cohen Foundation's research and preventive care clinics and the other half of the money raised by Team FORCE will go to the FORCE Hereditary Cancer Research Fund.

I believe that this collaboration between FORCE and the Lynne Cohen Foundation is important and well worth the effort. I am particularly proud of the fact that the Team FORCE has raised more than $45,000 for ovarian cancer research in the past 3 years.  This is just a drop in the bucket of what is needed but it is nonetheless an important part.  I sincerely hope that future generations will not have to face surgical menopause as I did in order to manage ovarian cancer risk.

Here is how you can help:

1. Join Team FORCE and come out on September 30th and walk (or run) with me! To join visit www.kickincancer.com, select “Register Here,” select “Join a Team” then from the drop down menu at the bottom of the box select “Team FORCE.” OR click on "Join Our Team" from the Team FORCE page. Be sure to enter the discount code “force” on the individual registration page and you will receive a $5 discount on registration for the event.

OR

2. Sponsor me! To donate online, visit my webpage. Checks made payable to KICKIN’ CANCER! can be mailed to The Lynne Cohen Foundation for Ovarian Cancer Research, P.O. Box 7128, Santa Monica, CA 90406-7128. Please include my name in the memo line of your check. Donations are tax deductible as provided by law.

OR

3. Become a virtual runner. You can join our team as a virtual runner, raise money for our team, and show your support for the cause no matter where you are in the country. You can run a 5K with your friends wherever you are and send us the photos to post on our LA FORCE page!

Thank you for considering this request for support. If you have any questions about the Lynne Cohen Foundation, please visit www.lynnecohenfoundation.org, call 877.OVARY.11, or email info@lcfocr.org. For information about FORCE please visit www.facingourrisk.org.

Sincerely,
Joi




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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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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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