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.

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Event Sponsors

Gold Sponsor

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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.

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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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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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