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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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

California Fertility Partners

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

Kay's Gourmet Catering

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

and

Our Host: Switch Studios

Our hosts: Matt and Nadja

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Event registration for Celebrate the Women In Your Life powered by Eventbrite

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Predicting response to chemotherapy

Predicting response to chemotherapy and likelihood of cancer recurrence is the name of the game these days.  New tools are currently available for women diagnosed with breast cancer and include the OncotypeDX and Mammaprint tests.  Both test help predict which early breast cancers are most likely to recur and can help guide treatment options.  There are key differences between the tests so be sure to talk with your doctor about which test may be right for you.

But with ovarian cancer the story has long been different.  As we noted in Positive Results, a BRCA mutation has been an indicator of improved response to chemotherapy and improved survival of ovarian cancer but little else has been on the horizon until now.  A new study published this week in the Journal of the National Cancer Institute is narrowing in on a genomic analysis that may better predict ovarian cancer response to platinum-based chemotherapy.  One note of caution, this is a very early study and any new clinically available test must await further clinical trials to determine if the test is indeed a good predictor of long-term survival of ovarian cancer and a potential guide for treatment.  But we welcome any and all new research aimed at improving survival of ovarian cancer.

In the meantime, the United State Preventive Services Task Force (USPSTF) last week once again recommended against routine ovarian cancer screening for women at average risk for the disease reconfirming that such screening could do more harm that good.  Please note, however, that this recommendation does not apply to high-risk women, including women with BRCA mutations.  Required screenings for high-risk women are fully discussed in chapter 13 of Positive Results.



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A fantastic new BRCA decision tool

Stanford University Medical School, specifically Dr. Allison W. Kurian and Dr. Sylvia K. Plevritis, have developed and published new online tool to help BRCA-positive women who have never been diagnosed with cancer make decisions about the impact of certain screening and surgical prevention options on the future risk of breast and ovarian cancer and of dying from these cancers.  I didn't comment on this tool when it first came to my attention as I wanted to have the time to use the tool and see how it worked.  I have now spent a substantial amount of time working with the tool and am very impressed.  I truly wish this type of thing had been available when I was making my preventive surgery decisions!

In order to recreate what the tool would have done for me had it been available when I was making my decisions, I used my age at the time I learned about my BRCA2 mutation (42) and then plugged in all the options in the order I considered them: first I planned surveillance with mammography and MRI; next I considered prophylactic oophorectomy while keeping my breasts and continuing surveillance; after my first MRI had a finding that required biopsy and further investigation I switched gears for immediate mastectomies and oophorectomy sometime in the future, which I ultimately did when I was 46.  This is how the decision tool worked for these choices:

The key part of this tool is that it provides visual feedback on the impact of specific interventions.  The far left column is what would happen to the average BRCA2 carrier with no interventions (when you use the tool be sure to use the drop down box at the top to select your age and your mutation status i.e. BRCA1 vs. BRCA2).  On the far right column for comparison is the average woman's risk absent a BRCA mutation.  Obviously, the more "green" in any particular column the more likely you are to be alive at age 70 (the endpoint for this tool and the endpoint for many of the studies as we discuss in Chapter 5 of Positive Results).  One thing that is clear to me is that as my understanding of my situation and my risk increased, the better my decisions became.  My ultimate decision, which was mastectomies close to age 40 (42 actually) and oophorectomies close to age 45 (age 46) resulted in my risk profile (which is highlighted above) being as close to population risk ask I can get considering when I learned about my genetic status.  The tool is not perfect, one can only select from five-year increments for age at certain interventions but in light of the fact that the studies at best use five-year increments for analysis it is certainly the best option available currently.

This tool is useful for BRCA-positive women of all ages who have not been diagnosed with cancer and who are contemplating preventive surgery.  We have added it to our Resources page and I will be recommending it often.  Many thanks to Stanford and to Drs. Kurian & Plevritis for this tool!

Find the BRCA Decision Tool here.

Joi


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An open letter response to a Cornell Sun blog post

This morning Google alerts picked up a blog post in the Cornell Sun that I felt I could not let pass without response.  The student blogger was reporting on a class where testing for BRCA mutations and preventive surgery to avoid breast and ovarian cancer was much criticized by the lecturer.  You can find the original blog post here.

I could not leave this without response so I sent the following email to the author:

Samantha,

Your blog hit my desk this morning having been picked up by Google alerts. While I am glad that your class is discussing the implications of genetics and the future of medicine I would like to add some real life perspective to the hypothetical presented in your class. I would also like to offer a correction. There are not multiple options for testing for the BRCA genes currently as Myriad Genetics holds patents that make it the exclusive source for BRCA testing in the United States. That may not continue to be true as those patents have been challenged in the courts and the United States Supreme Court issued a decision in another gene patent case last month that could result in all or some of the Myriad patents being invalidated. Another inaccuracy in the blog was that the a BRCA test does not show that you have breast or ovarian cancer. It just shows that you have a genetic predisposition that increases your likelihood of developing cancer in the future.

The issue that I have with the hypothetical presented to your class is that it is not very realistic. BRCA mutations result in earlier onset of breast and ovarian cancer very often striking women in their 30s and 40s who are raising children. Most of the 55-year-old women that I meet who have BRCA mutations have already battled breast or ovarian cancer, sometimes both. If a woman with a BRCA mutation reaches age 55 without a breast or ovarian cancer diagnosis she is truly lucky indeed. I am also dismayed that you portray a decision to have preventive surgery as simply "a chance to live longer" when we are all going to die of something someday any way. While that is true, those of us with BRCA mutations have all watched loved ones fight and often die from breast or ovarian cancer and we know that the battle is long, difficult and ugly. Allow me to give you a few more real life scenarios that are far more common than the one presented to you in class:

• 31-year-old BRCA-positive woman who grew up without a mother because her mom died of ovarian cancer when she was 6. How does she tell her fiancee that she wants to have preventive surgery as soon as she has kids so she does not leave them motherless?
  
• 38-year-old woman with less than 6 months to live because her "early" stage 0 breast cancer -- diagnosed when she was 33 -- has metastasized to her vital organs and her brain. She was diagnosed when her oldest child was 6 and her youngest was a toddler. Her daughter has never known a mother who was not "sick" and she will not see her daughter matriculate out of primary school much less see her children graduate from high school or dance at their weddings.
  
• A 50 something woman who has battled breast and ovarian cancer who is currently in hospice care and may not make it to summer because her recurrent ovarian cancer has invaded her intestines. Her beautiful 22-year-old daughter is her primary caretaker and will not only be dealing with the grief of losing her mother but also facing decisions about her own body parts because she inherited her mother's BRCA mutation. 

These are more realistic faces of BRCA carriers. Those of us with BRCA mutations who opt for preventive surgery to hopefully avoid the cancer that had taken many of our loved ones do so reluctantly. Do we do it to live longer? In one sense yes. But in truth, what we really want is a normal life span, not one that cuts our life short after multiple surgeries and multiple rounds of chemotherapy. Knowing that we have or do not have a family genetic mutation allows us an option that you take for granted, an option to live a normal life, see our kids grow up, play with grandkids and die having lived a full life. I will tell you that the women on my father's side of my family (the one without any BRCA mutation) all lived into their nineties while the women on my mother's side of the family died decades earlier. I inherited my mother's BRCA mutation but I have to tell you that I sincerely hope to live a life more like that of my paternal grandmother.

Regards,
Joi Morris

 
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Ovarian Cancer Research Needs You!

A guest post from FORCE founder Sue Friedman about an important research need:

If you were one of the high-risk women who participated in the large GOG-199 research study, thank you for helping advance critical research that will lead to better health outcomes for our community. Your continued participation in a related study, which is easy and involves only a simple annual questionnaire, will help researchers continue this important work.

Studies specifically for high-risk women are rare and necessary to address the serious issues we face. This uniquely focused research depends on our participation, which also shows researchers and funding agencies that our community is important and supports continued research. If we are to discover better methods of detection, prevention, and effective treatments, we must do our part by participating in these studies.

This is why I am so distressed to learn that funding for an important research program for women at high genetic risk of ovarian cancer is threatened, not because the funding isn’t available, but due to lack of subject participation. GOG-8199 is a continuation of GOG-199, and is only open to women who enrolled in the original GOG-199 study. GOG-199 is advancing what we know about hereditary ovarian cancer. The study:

• enrolled 2600 high-risk women;
• collected valuable DNA, sequential serum and plasma samples, and samples of normal and cancerous tissue obtained during risk-reducing salpingo-oophorectomy;
• could yield clues that will help us :
• understand the causes and development of ovarian cancer;
• improve early detection and prevention options;
• develop better ways to pinpoint and personalize ovarian cancer risk estimates;
• understand how non-BRCA genes influence ovarian cancer risk in mutation carriers and other high-risk women;
• address quality-of-life issues for those undergoing surgery or surveillance; and
• test a method of using individual CA-125 trends to detect early-stage ovarian cancer.

Please read the following important message from Dr. Mark H. Greene of the National Cancer Institute and Study Chair of GOG-199 and GOG-8199.

Attention All Participants in GOG-199, the National Ovarian Cancer Prevention and Early Detection Study for Women at Increased Genetic Risk of Ovarian Cancer
GOG and the National Cancer Institute have launched a new but closely-related follow-up study for which only women who participated in GOG-199 are eligible. It extends the follow-up of GOG-199 participants for an additional 5 years, in an effort to improve the precision of cancer risk estimates and increase the usefulness of GOG-199-related biospecimens. The new study—designated GOG-8199—requires only the signing of a new consent form for the additional follow-up, and completion of a brief annual follow-up questionnaire by snail-mail, telephone or email. In-person visits to GOG study centers are NOT required. The new study does not include additional biospecimen collection, additional screening tests or the potential for surgery. It simply collects information on how participants are doing, and whether they have developed new cancers or undergone additional risk-reducing surgical procedures. This new information will be linked to the data that each GOG-199 participant has already contributed, substantially increasing the overall value and usefulness of the GOG-199 data base. 

Unfortunately, accrual to GOG-8199 has been distressingly slow, and GOG is at risk of losing its funding for this study if a substantial number of additional participants are not recruited by May 2012. We are asking GOG-199 study participants who might now be willing to consider joining this extension (GOG-8199) to contact the GOG site at which you were originally enrolled and discuss joining 8199 with your GOG research nurse. Please act at your earliest possible convenience, if we are to avoid the closure of this important addition to GOG-199. We offer a special shout-out to those of you who have already enrolled in GOG-8199. You are already in the system and do not need to respond to this request. Many thanks! 

Thank you all for having made GOG-199 such a success. Analyses of the major study end-points are now underway, and it is anticipated that important new findings will be published during the coming year. 

Mark H. Greene, M.D.
National Study Chair, GOG-199 and GOG-8199

For more information about GOG-8199 and to learn how to enroll (open only to those who were in GOG 199) please visit the study website.



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JAMA publishes new study on BRCA mutations and improved ovarian cancer survival

Today's issue of the Journal of the American Medical Association includes an important new article on improved ovarian cancer survival for BRCA mutation carriers co-authored by Dr. Ora Gordon, co-author of Positive Results. A link to the JAMA article can be found here.

A summary of the study's conclusion is that for patient's diagnosed with epithelial ovarian cancer, both BRCA1 mutations and BRCA2 mutations confer improved 5-year survival, independent of cancer stage at diagnosis.  Confirming the conclusion of prior studies, the new analysis found that BRCA2 carriers have the best disease prognosis.


 
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Mastectomies: The five year update

Five years ago today my husband drove me home from the hospital after my prophylactic mastectomies.  I was nauseous in the car but anxious to be home in my own bed.  My youngest son, who was eight at the time, was finding it difficult to sleep without me home.  Once I was home, all was right in his world, regardless of the fact that I could do virtually noting for him. For the next week, after my husband washed my hair in the sink, my sons would perform the role of hair stylist and blow dry my hair.  Fortunately for me I have naturally straight hair that looks pretty much the same regardless of the abuse to which it is treated.

Fast forward five years:  My youngest son is 13 and now in the firm grip of early puberty with its hormonal surges, early growth of facial hair, rapid increase in stature, moodiness and total rejection of mom.  These days he only takes the iPod headphones out of his ears long enough to demand that I do something for him.  Of course I am now firmly in the throws of surgical menopause from my prophylactic removal of my ovaries so let's just say menopause and puberty don't mix so well and leave it at that.

Prior to my mastectomies, one of my worries was how I would feel about my reconstructed breasts over time.  This week, on the five year anniversary of my mastectomies, I have mostly been too busy with the rest of my life to even ponder this question.  Life goes on.  Except in the small circle of women friends who are also BRCA-positive, my surgeries and my post-surgical feelings about my breasts are never discussed.  My experience with my surgeries, while life changing, do not continue to define my life.

For a period of more than three years BRCA did consume my life.  I had to face the cancer risk imparted on me by genetics and have the guts to do what my intellect told me was right but my emotions told me was crazy.  Then I made the equally irrational decision to write a book to help others, which I could not have done without the help and support of one of the most brilliant and dedicated doctors around -- Dr. Ora Gordon.  Once the book was published I continued to be immersed in this world through my volunteer work with FORCE, Susan G. Komen for the Cure and this blog.  Those of you who regularly follow this blog have no doubt noticed that the frequency of my posts have diminished.  The reality of the situation is that writing good blog posts takes time and right now the priorities in my life are such that the extra time for blogging is in short supply.    My time now is primarily consumed by my family.  I have two teenagers, both of whom are very bright and talented and one of whom is nearing the age of applying to colleges, which is now a full time job for the entire family, and I have older family members who need help dealing with the diseases of aging.

The reality of my current life stage is that I don't have time to dwell on how I feel about my reconstructed breasts, but this week I have allowed myself a few moments to reflect on this topic.  For the most part I don't think about my breasts, they have become part of who I am and the fact that they are different from the ones nature gave me is irrelevant.  At other times I catch a glimpse of myself in the mirror and what I see is not what I expect.  My reconstructed breasts, although very well done, are not the same; not in size, not in shape and not in location on my chest.  But what matters most is that these new breasts have given me the ability to return the focus of my life to what it should be, my friends and family, without constant fear of cancer.  This, I realize now, is a luxury that I once again take for granted.

I will continue to update this blog from time to time, although perhaps not frequently.  We do however update the Positive Results Facebook page with new studies, research, and other relevant links more frequently so if you have not yet become a fan of our Facebook page please do so here or through the link at the right.

Wishing you all a happy and healthy 2012,
Joi


 
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