Friday, August 6, 2010

Please Join Kickin' Cancer 2010

On August 5th I had surgery to remove my ovaries plunging me into instant surgical menopause. I wish I didn’t have to do it but as you know I carry a mutation on the BRCA2 gene that raises my risk of developing ovarian cancer far above the average woman’s risk. My risk could be as high as one in four. Preventive surgery is the best way to protect my life from this disease because unfortunately, ovarian cancer is rarely detected at an early stage when the disease can be cured.

On 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.

So this year, on Sunday, September 19, 2010, to celebrate my recovery from surgery to remove my ovaries I will join more than 3,000 women, men and children 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. I suspect I will be a walker and not a runner this year; but I will nonetheless be there to celebrate life, being healthy, and this great cause.

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 19th 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.” 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 or another participant on TEAM FORCE! To donate online, visit www.kickincancer.com. From the home page, select “Sponsor A Participant” and enter my name to ensure I receive credit for your donation. Checks made payable to KICKIN’ CANCER! can be mailed to 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.


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.


Thank you for supporting women's cancer research!

Sincerely,
Joi

3 comments:

  1. Most importantly for the moment, how are you feeling? Are you home today? How long is this walk? Will you be cleared to walk that far by then? I know, I sound like your mother. ;) That's my home care PT kicking in.

    My maternal aunt & godmother amazingly survived ovarian cancer 17 years ago. It was very scary. But one of my maternal female cousins died of colon cancer about 4 years ago. I'm the only woman in the family who has had breast cancer, as far as I know. So, I am one of those women who is on the thin line for needing to be tested for BRCA genes, but not so much that I could get it paid for. I wouldn't wish any of this on anyone.

    I'm working on Part II of "Bare Bones & Hormones." Thinking of you, Joi, and so many of my previvor and survivor friends as I work on it. Gentle hugs.

    Kathi

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  2. Thanks Kathi!

    Yes, I am home! Yeah! The Kickin' Cancer walk is only a 5K and yes, I will be cleared to walk that far by then, although I doubt that I will be running by that point. My husband just took me for my first spin around the block this morning and I didn't set any land speed records but it does help to be up moving around.

    As far as BRCA testing goes I think you should consider it. I suspect with your personal history of breast cancer and an aunt with ovarian cancer you could probably get testing approved. I have found that genetic counselors generally have a good track record of convincing insurance companies to pay for testing. And in your case the additional colon cancer history would probably tip the scales. If you still have your ovaries (even if you are postmenopausal) insurance companies would rather pay for genetic testing than ovarian cancer treatment. Although my mother had a mastectomy at the time of her breast cancer medicare did not hesitate to pay for her genetic testing because she had one remaining breast and her ovaries, which were at risk.

    Send me an email if you want to talk more about this by phone.

    Thanks so much for your well wishes and I look forward to the bare bones and hormones post.

    Joi

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  3. Kickin's Cancer 2011 is September 18, 2011 and yes, I am again forming a team! Stay tuned for more info ...

    Joi

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