Thursday, April 28, 2011

How to hear the news

Where were you when you learned about your BRCA mutation?  Were you nestled safely inside the office of a genetic counselor who could answer your every question with your husband by your side or did you receive a telephone call with the results while you were driving a car? Perhaps you were at work when the call came with the news:  "you tested positive."

Does does it matter where and how we are told about genetic test results? And does the answer to that question differ depending on whether the results are negative rather than positive?

Earlier this week I read a blog that started me thinking about these issues because the woman had been told her negative test results by email when she was at work:
I received an email from Dr. Stoutenburg Wednesday which read, “I just received your BRCA 1 and 2 results. I am sure that you are eager for the result. No mutation was detected. Thus, this cancer was not caused by an inherited abnormality in either of these genes. This is a good thing! We don’t need to consider preventative mastectomies and don’t need to consider testing other family members.”
She was clearly relieved by this news and the fact that it came by in the middle of her work day thrilled her.  She was happy to get that electronic missive.  But what if the news had been different? In the book Pretty Is What Changes, author Jessica Queller describes  how she responded when the bad news of a negative test result that was sprung on her via a phone call at work. She describes shock, anxiety, distraction, bewilderment and denial.  Following the phone call that advised her of the positive test results she received the written report, which she shoved into a drawer and ignored for several months.  At the time, she had no idea about the level of risks associated with testing positive, despite the fact that her mother had both breast and ovarian cancer.  The doctor who tested her did no genetic counseling prior to her test and likewise did nothing to explain the results when he communicated them on the phone.  She was on her own.  Fortunately she is a smart woman who figured much out through her own research and she was smart enough to go in search of doctors who could provide better guidance than the one who performed her test.

I received my results on the phone also but my experience was vastly different as I was tested by a doctor with whom I a had a long relationship and I had hours of counseling prior to even deciding to be tested.  I know now that the best way to communicate genetic test results is by a genetic counselor and in person but at the time, if I had known that my doctor had the results and that he would not tell them to me over the phone I would have been dismayed.

Saturday, April 23, 2011

Great book review from a doctor in Lituania

Positive Results is available in many countries and we have blog readers from around the world. The following is a review of our book by a medical geneticist in Lituania on his blog, from earlier this month:

Positive book for all with positive results 
An amazing book written by BRCA2 positive cancer survivor and clinical geneticist: “Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer”,which is now in my hands and hungry eyes. 
This is very informative and up-to-date single reference for all (women and men) who are at increased genetic risk due to BRCA1/2 mutations, as well as clinicians dealing with these patients. 
This source I’ll definitely now include in my recommendations for high risk women, along with FORCE and a free gift of Liv Breast Self-Exam Kit kindly provided by Association for Hereditary Cancer (PVAS).

Thanks so much Dr. Janavičius for all you do for the hereditary cancer community and for finding and recommending our book!

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Friday, April 22, 2011

Are we ready for a nuclear accident?

The news out of Japan this week is that the government is getting serious about enforcing its 12 mile evacuation zone around the crippled Fukushima nuclear power plant.  Reporters who have ventured into the zone report that the landscape to be surreal and like time standing still.  80,000 people have been displaced and have no idea when they will be able to return to their homes.  At a minimum it will be another nine months.  But it may be years, if ever.  25 years after Chernobyl, the evacuation zone is still home to nothing more than ghost towns.


But what would happen if a US nuclear power plant experienced a disaster similar to that still unfolding in Japan?  This CNN video shows that a disaster near New York would impact millions of people:

View CNN video here.

What are your thoughts about nuclear power now?

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Sunday, April 17, 2011

Kickin' Cancer 2011

Last year I celebrated my recovery from preventive surgery to remove my ovaries with a 5K run in the 9th Annual KICKIN’ CANCER! 5K Walk/Run & Women's Healthcare Expo to raise funds and awareness for the early detection and prevention of both ovarian and breast cancer. Last year, our team, Team FORCE raised more than $9,000 for genetic testing and ovarian cancer research.  This year we are getting an earlier start on the 10th Annual Kickin' Cancer Walk/Run.  Our team is now officially launched and we want YOU to join us, regardless of whether you live in Southern California.

One of my first blogs was about the desperate need for increased funding for ovarian cancer research, especially research dollars for early detection of the disease so that it will not continue to claim so many lives. Millions of dollars have been raised for breast cancer research over the past three decades because women, multitudes of women, have joined arms and walked to support this important cause. Progress is being made in breast cancer battle, less so with ovarian cancer.

I have been involved with FORCE, Facing Our Risk of Cancer Empowered, for the past several years. FORCE is a national organization that supports and advocates for women like me, women at high risk for both 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, to raise money for this important cause and I am the captain of “Team FORCE.”

In addition to funding important research into ovarian cancer early detection and cures, the Lynne Cohen Foundation recognizes that saving lives now means providing genetic testing services and breast and ovarian cancer screening services to women now. Unfortunately, not all women have health insurance that will pay for these services. In response to this need, the Lynne Cohen Foundation has established a network of preventive care clinics at major cancer centers around the country. These preventive care clinics are for women at high risk for breast and ovarian cancer, including women with BRCA mutations, women previously diagnosed with breast or ovarian cancer, relatives of women diagnosed with breast or ovarian cancer, women diagnosed with precancerous conditions that raise future risk of disease, and Ashkenazi Jewish women. One of these preventive care clinics is the Lynne Cohen Foundation Preventive Care Clinic for Women’s Cancer’s at USC/Norris Cancer Center here in Los Angeles. Women who participate in this clinic receive breast and gynecologic exams and screening; genetic counseling; lifestyle counseling; education about breast and ovarian cancer; and access to the latest early detection and prevention trials for women’s cancers. Genetic testing for BRCA mutations may be appropriate for many of these women but because of the high cost of genetic testing, funds are not always available for this service.

One of the goals of Team FORCE is to make sure that no woman who needs genetic testing for breast and ovarian cancer risk is denied access to this lifesaving information because of cost. For this reason, half of the funds raised by Team FORCE will go to the Lynne Cohen Foundation Preventive Care Clinic for Women’s Cancer’s at USC/Norris Cancer Center to endow a genetic testing fund. The other half of the money raised by Team FORCE will go to FORCE to support ovarian cancer research and awareness.

Did you know:

• Ovarian cancer is the deadliest gynecologic cancer, striking more than 22,000 women in the United States and killing more than 15,000 each year.

• Invasive breast cancer strikes more than 200,000 women in the United States, killing approximately 40,000 each year.

• 20,000 women each year are diagnosed with hereditary breast or ovarian cancer.

Identifying high-risk women makes it possible to screen for the disease and to take preventive action. Currently, the Lynne Cohen Foundation has more than 3,000 diverse women registered in its high-risk preventive care programs nationwide. These unique programs provide women with a comprehensive approach to preventive care, individual risk assessment, and access to the latest clinical/research trials. Data from these programs is collected in the Lynne Cohen Data Registry for collaborative, multi-institutional research.

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 Foundation has raised more than $6 million to support research and preventive care for the early detection and prevention of ovarian and breast cancer since 1998.

Here is how you can help:

1. Join Team FORCE and come out on September 18th and walk (or run) with me! To join visit, 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.


2. Sponsor me or another participant on TEAM FORCE! To donate online, visit the Team FORCE page, pick a team member and you can donate to them from their individual page. Checks made payable to KICKIN’ CANCER! can be mailed to P.O. Box 7128, Santa Monica, CA 90406-7128. Please include the name of the Team FORCE member in the memo line of your check. Donations are tax deductible as provided by law.


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, call 877.OVARY.11, or email For information about FORCE please visit

Thank you for supporting women's cancer research!


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Friday, April 1, 2011

Why go to the FORCE Conference?

Check out this moving video from last year's Joining FORCEs Conference on why you should consider going this year. Take is from us (we have been!) there is nothing anywhere else that matches this conference for the breadth of information for high-risk women and men, the access to the top experts from around the world AND the ability to connect with other women in your shoes. If you can do it, you should go!  To register, click here.

June 23-25, 2011
Orlando, Florida