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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