HBOC Threat Level Orange

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I may or may not have ovarian cancer. I’ve had a host of “whispering symptoms” for a while now that three different general practitioners have repeated misdiagnosed. Each time I reminded them that I was BRCA+ and asked if I should be screened for ovarian cancer. They waved it off. As is typical with ovarian cancer, these symptoms could very well turn out to be something else entirely. My doctors are rushing me into extra screening this week.

The timing is ironic. My usual twice annual screening was coming up soon anyway, so I already had appointments for a CA-125 test, ultrasound, and physical exam that have now been urgently condensed and sped up. I’m also preparing for my prophylactic mastectomy surgery later in the year. So the same day my doctor sits me down with a grim face to say it may be ovarian cancer, a bunch of supplies I ordered from Amazon appeared on my doorstep–shower chair, bed tray, wedge pillow, etc.

It’s a funny thing to be preparing for a surgery you may not be able to have because of more pressing medical issues. Part of me is mentally putting the mastectomy surgery on hold until I have answers about these symptoms. Part of me thinks the symptoms will turn out to be much ado about nothing and I should carry on with mastectomy plans. It’s hard to know what to do or how to occupy myself while I wait for answers.

I’ve been joking that this ovarian cancer scare has put my family and I on threat level orange, like the Homeland Security alerts. Hopefully, it will all turn out to be a false alarm. But one of the many frustrating things about having a BRCA mutation is that, in a way, you are always at threat level orange, not unlike Homeland Security terror levels after 9-11. If/when I’m told that I have “no detectable cancer” (which is as much as a high risk girl can possibly hope for), I’ll still be looking at decades of false alarms. Even if I have a prophylactic mastectomy with oopherectomy, salpingectomy, and hysterectomy, I will still be predisposed to other cancers. The best case scenario is a life of fear and threats with no actual diagnosis–a life of threat level orange.

This threat level system is really more my style

Scaremongering non-BRCA+ young women

Bright Pink recently posted an article on Facebook about breast cancer risk factors for college-aged women with the following quote and commentary:

“‘Unfortunately, college-age women generally do not consider themselves at risk for breast cancer,’ said Dr. Mercier. ‘However, there are several risk factors that contribute to the development of breast cancer that need to be understood early in life to prevent the development of breast cancer down the road.’

Further support for starting this conversation NOW. Join us in learning what you can do as a young woman to reduce your risk for breast and ovarian cancer. http://www.brightpink.org/awareness-to-action/risk-reduction/’

Huh?

The article ominously notes that breast cancer “can strike at any age.” That’s true, but misleading. Breast cancer can indeed strike at any age. The youngest breast cancer survivor was just 11 years old. However, there’s a difference between what’s possible and what’s probable. Your average 30-year-old woman has just a .44% risk of breast cancer. The vast majority of women in their 20s do not get breast cancer.

You might say that it can’t hurt to make women in their 20s aware of their future risks. After all, 1 in 8 women in the United States will get breast cancer, which means that an American woman has a 12% risk of developing breast cancer in her lifetime. Shouldn’t young women be warned? I’m skeptical of that argument. Most women are already “aware” of breast cancer. They know that they should eat healthy and exercise. They know that they should have annual gynecological visits that include breast exams. They know that they are supposed to perform self breast exams (despite the fact that self exams have not proven beneficial at early detection).

At the same time, American women are at high risk for many different diseases: diabetes, heart disease, lung cancer, osteoporosis, Alzheimer’s, and many others. In fact, women are greater risk for developing lung cancer and heart disease than breast cancer. Should we be warning them about these diseases too? Are young women supposed to spend their time “preventing” these diseases? That information is already out there, saturating the news, twitter, Facebook, women’s magazines, and so many other venues.

I do think that women in their 20s should be informed about breast cancer, just as they need to be informed about reproductive health in general, sexually transmitted diseases, and birth control. But there’s a difference between being informed and scaremongering.  Note the rhetoric: breast cancer “strike[s]”–it lays in wait like a biological cobra or tumorous lightning bolt; no one is safe. While there is a grain of truth here (insofar as breast cancer cuts across age, class, race, culture, and other vectors of identity), the truth is most women in their 20s do not need to be extra vigilant about breast cancer.

Moreover, it seems odd to me that Bright Pink, an organization for young BRCA+ women, would be advocating this much foreknowledge and vigilance for young women in general. BRCA+ women live in fear of cancer and with good reason. Those who test positive for a mutation at a young age spend most of their lives haunted by the threat and/or experience of cancer, but that doesn’t mean that average women of average risk should as well. There is such a thing as too much awareness, especially when it’s not backed up by good science and common sense. We need to find the line between promoting health and promoting hypochondria.