Fifteen years ago I was diagnosed with breast cancer at 42, and underwent a lumpectomy, chemotherapy, and radiation. In 1998, the BRCA gene mutation was not a regularly discussed topic. Doctors assured me I wasn't a carrier even though my paternal grandmother and aunt both died from breast cancer. Being the eighth born in a family of nine, they felt there would have been more breast or ovarian cancer down the line.
My doctors occasionally mentioned the test to me, but with each year of survival I felt more confident I didn't carry the mutation. A few years ago my daughter's doctor started to push her to do the same, since I had breast cancer at a young age. I would have to be tested first though, but my insurance didn't cover genetic testing so I put it aside.
Fast forward to December 31, 2012. I had an annual exam with my internist and she felt a lump. I just had a diagnostic mammogram six months earlier but a strange feeling came over me. My biggest fears came true - in January 2013 I was diagnosed with breast cancer a second time.
Part of my oncologist's suggestions included testing for the BRCA mutation. I met with a genetic counselor and was tested. My insurance still wouldn't pay for it, so I paid out of pocket. About two weeks later I received my test results - positive. I truly don't remember much of what he said after that. My fear was knowing my children had a 50% chance of carrying it, as well as knowing there may be other family members who carried it but were unaware just as I had been. My daughter's blog chronicles her testing at brcatoempower.blogspot.com. It's my version of winning the lottery.
When chemo ended in May I had a double mastectomy, which was to be followed by having my ovaries removed in July. About a week before my surgery, after pre-ops were done - my insurance denied coverage. Their reasoning was that the BRCA mutation was not a medical reason for having the surgery. This surgery is absolutely necessary - ovarian cancer is seldom caught early. Screening tests like the CA125 and ovarian ultrasounds are not completely reliable. Being BRCA positive is being given the gift of knowing - and taking preventative measures before cancer hits. But now, I feel like a ticking time bomb waiting for ovarian cancer to strike.
While I wait patiently (well, not really patiently) for my appeal to be heard, I try to get the word out about the BRCA mutation and others in my position. We are few in number - only 5-10% of those diagnosed with breast cancer are BRCA positive. Our numbers may be low but our risks are so high. Being BRCA positive means you may have up to an 85% chance of developing breast cancer in your lifetime and up to 50% for ovarian cancer. It is frustrating knowing I carry this mutation but am unable to take all the steps to ensure a long and healthy life.
Our insurance companies need to become educated on the statistics and let doctors determine our treatment plans. I am extremely thankful to my gynecological oncologist, Dr. Barbara Buttin from Central DuPage Hospital who is working effortlessly to get me my surgery. I am also thankful for organizations such as FORCE, BRCA Awareness, and LivingWell Cancer Resource Center, for guiding me as I face these obstacles. And to movie star Angelina Jolie and the movie "Decoding Annie Parker," for both bringing a voice to BRCA.
As my chemo brain recovers, my husband Mike says as I walk back in the house "Oh what did you forget now? Keys, glasses?" I reply, "No, my breasts!" Find a way to laugh every day and never, ever lose hope.
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