Wednesday, May 19, 2010

I can hear the screams now ...

I can hear the screams now.

“Nobody is touching mine…”

What if testicular cancer were as prevalent as breast cancer? What if a gene were discovered that would result in a 60 percent to 85 percent likelihood that any man carrying a mutation on this gene would develop testicular cancer? Can you imagine doctors telling men: “Well, your best choice is preventive surgery. We can remove your testicles before cancer develops and we will replace them with silicone balls; the scars will be small and nobody who sees you in a locker room will ever be able to tell that you are a eunuch.”

Now can you hear the screams of the angry men?

“NOBODY is touching mine …”

Men would demand better options. Men would demand more research. Men would not submit quietly to surgery to remove their sexual organs without a diagnosis of cancer.

Yet women make the equivalent unthinkable decision every day because we do know about the BRCA genes. And what we know is that women with mutations on these genes face up to a 60 percent to 87 percent lifetime chance of developing breast cancer and up to a 27 percent to 45 percent lifetime chance of developing ovarian cancer.

What are we told by our doctors? “Remove your ovaries as soon as you are finished having children, preferably by the time you are 40.” And “prophylactic mastectomy is the most effective way to prevent breast cancer.” Never mind that what we are removing are the parts of our bodies that make us uniquely female. Never mind that even with reconstruction our “breasts” will never again nurse a baby or have sexual response. Never mind that surgical menopause may forever change sexual response and enjoyment. Never mind …

I mind. I mind very much. I would like to keep my body parts and my hormones but have been told that the clock is ticking on my ovaries and they must go. But is surgery the best solution for breast and ovarian cancer prevention? I think not. To achieve prevention under the current paradigm requires women to sacrifice fertility, endure early menopause, and often to sacrifice libido and body image. The price is too high. Better options would be finding ways of detecting breast and ovarian cancers when they would be easily curable for most if not all women.

While progress is being made with some types of breast cancer, the same is not true for ovarian cancer. For ovarian cancer, preventive surgery is the only viable preventive strategy for those of us who face a greater than one-in-four chance of developing this deadly disease. Surveillance offers no assurance that ovarian cancer will not claim our life because 80 percent of ovarian cancers are not detected until they will likely be fatal, no matter what the treatment.

Faced with a choice between Russian roulette with her life and surgical menopause, a woman will logically choose menopause. But she should not be forced into this choice. I believe that if men faced 40 percent chance of developing cancer of their sexual organs and the disease had an 80 percent likelihood of being fatal, the national discussion would be different. And funding would be found.

Our collective consciousness about breast cancer is bathed in a sea of pink each October. Why? Because women — multitudes of women — demanded that the nation pay attention to this disease. Susan G. Komen for the Cure collects millions of dollars from those pink donations and sale of pink product and pours many of those millions directly back into important research. Komen's funding for breast cancer research is second only to governmental funding for such research. Komen and other breast cancer organizations do tremendous work to find ways to prevent and cure breast cancer.

Ovarian cancer preventions needs the same type of research funding. September is ovarian cancer awareness month and is represented by a teal ribbon, did you know? 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. Our lives depend on it. And I intend to scream.

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  1. Great posting, and extremely well thought-out and written (not surprisingly). Ovarian sarcoma took my sister-in-law's life far too early, and so my family will scream along with you. Love, ML

  2. Great post! And I'm sure any men will cringe as they read it. Someone shared a link earlier today that did seem promising, about a new blood test in the works that actually detects ovarian cancer in it's early stages, while it's still curable. It's nice to know that someone, somewhere is finally TRYING to do something:
    Teri S.

  3. ALL research is good. But this study was in average risk women, not in high risk women like us. Actually the British study, which was published about a year ago called the "Million woman study," was also in average risk women although it has a companion study for high risk women. I am anxiously awaiting the results of the high risk study to see if it sheds some light for us.

  4. Joi - thank you so much for sharing a link to your blog! You are such a talented writer! Also, I could not agree with you more - if our predicament applied to men I bet we'd be swimming in funding and a cure would be just around the corner (if not better screening!). I feel like being a woman is considered a pre-existing condition to begin with. Doesn't help when you have a genetic predisposition to cancer that generally only strikes women. Thank you again for sharing, Joi! I'll be sure to keep reading :)