BRCA Testing: I Did It For My Girls

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I have a lot of cancer in my family. Both grandmothers had the misfortune of acquiring breast cancer and my great aunt died from ovarian cancer. In more recent years, various aunts and uncles of mine have had breast and prostate cancer, and in 2011, my mother died from ovarian cancer. I was devastated and terrified all at once. I felt like it didn’t matter anymore if I stood in front of the microwave while using my cell phone and heating up my dinner covered with saran wrap. I was resigned to the fact that I was going to get cancer.

Over the next couple of years, I dealt with severe grief over the death of my mother but also suffered an overwhelming anxiety about my family’s cancer history. Will I die of cancer? Will my girls get cancer?  Who’s next in line for this disease?  When the anxiety became too much, I took a tiny bit of solace in recalling a certain crazy trip to Key West in 2006. While on a vacation with my husband, I kept seeing a sign on Duvall Street for a palm reader. One evening I found myself waiting in line to meet the old, bearded man in the long, white robe. When I sat down the old man’s brown eyes bore into my blue. He took my small hand and turned it palm-side up and placed it into his own hands. Carefully, he told me these things: I will have one, maybe two children; I trust too easily; I will come into money; and that I will live into my 80’s and only then, will I have some heart trouble. Eight years later, some of what he has said has proven true and during anxious moments of excessive worry about acquiring cancer, as silly as it may be, I still cling to the old man’s words.

All this being said, last year, during my annual OB/GYN check-up, my doctor sternly suggested that I get the BRCA testing done. He knew my mother had passed away from ovarian cancer and he knew my extended family history. Angelina Jolie was all over the news that spring and I had been following her interviews. I became obsessed with the bravery of her choices.  After a long discussion with my doctor, I was handed a pamphlet on BRCA testing.I took it home and buried it among the papers of my desk.  There was no way I could do this testing because…what if? I was still reeling from the death of my mother and I didn’t think I could emotionally handle going through something so real and scary. It felt safer to dwell in a place of ignorance and so I used the high cost of the testing as my excuse.

Months passed and the BRCA testing still haunted me. I either carried the genes or not, right?  What would I do if I had them?  Have a full hysterectomy at age 36?  Have a double mastectomy like Angelina Jolie?  And then one day, I found myself scheduling an appointment to take the BRCA test.  I just woke up one morning and knew I had to do it. I owed it to my two daughters. If had the gene, they would have that knowledge and could eventually get their own test done. If I did not have the gene, I couldn’t have passed a gene I didn’t have on to them. For some reason, once I scheduled the appointment, I felt an initial calmness.

The day arrived for my office visit and it was rather stressful from the get-go. First, the nurse didn’t get the message from reception that I was there for a BRCA test. Then, I had to wait quite awhile while the nurse tended to other patients. Finally, the nurse was ready to see me and I expected her to do a blood draw. Instead, she told me I was to complete a Buccal Wash. I was told to gather as much saliva in my mouth and then spit it into this plastic vial. Then, I was to rinse with some Listerine and spit that into the same vial. Repeat. Repeat. Repeat. Three vials of Listerine and my saliva were sent off to a lab in Utah.

Next came the insurance approval process. It took nearly 6 weeks for my insurance company to approve the processing of this test. After multiple insurance reviews, case assessment phone calls, a final determination was made that I had “substantial risk”. And then I waited.  I waited for a white envelope that was from Myriad Laboratories. I waited for my future to be determined. During these weeks I would wake up at night in cold sweats, my stomach tightening as I would try and shut my mind off.  Each day, I would look into my girls’ eyes and silently plead with them to forgive me if I had passed a demon gene onto them.  I spent obsessive hours on the Internet planning how I could attack my own body in self-defense. And at night, when the house was quiet, I would cry with anxiety and fear that my husband would not find an altered body attractive anymore. Finally, one late July afternoon the white envelope arrived.

With shaking hands, I called my husband at work. “I don’t have the genes. None of them.” I began crying with a quiet relief and my two daughters noticed.  They came into the kitchen and wrapped their little arms around my waist.  “Mommy?  Why are you sad?” I told my husband I would call him back later and I knelt to their level.  I searched their eyes and took them into my arms.  “Mommy is crying happy tears…” They looked confused and so with a deep breath and an even tighter squeeze I whispered, “It’s one less thing…”

I had done this for them.

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Comments

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  1. Karen says

    What would you have done if it came back you did have the genes? My mom died of breast cancer at age 54. My aunt on my dad’s side had stage 0 breast cancer…whew. Her mom died of ovarian. My dad’s sister died at age 4 of leukemia. Their cousin died a few years ago of breast cancer. My mom’s side has no other people. I don’t know what I would do if mine came back positive. I might have a breakdown. My mom handled her cancer soooo freakin well. Like a trooper the whole entire time. I don’t feel that strong. How would you have handled a positive test?

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    • says

      I was convinced that I had the genes. I was dealing with the profound grief I felt over my mother’s horrible lost battle with ovarian cancer. My grandmothers both had breast cancer and my great aunt, ovarian cancer. My paternal aunt is in remission from breast cancer. I not only was prepared to have a full hysterectomy, I was prepared to offer my eggs for donation. I just knew that I had to get this checked for the sake of my two daughters. I know that I am still at risk for cancer, but my percentage of risk has decreased. This is important to remember. It was scary and nerve-racking but after watching my mother go through her horrible ordeal, I felt that knowledge, although not a full guarantee, was power. xo to you all.

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  2. says

    Me too. My situation was a bit different. I had already been diagnosed with breast cancer (at age 42), so for me, the reason for the test was mostly about the ovarian cancer gene and for my daughters. I, too, had negative results, and not a day goes by when I don’t think about this. Although other genes are certainly involved, it is one less thing…

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    • says

      Also, another difference is that I met with a genetic counselor to discuss my individual situation in depth before taking the blood test. So if you are considering the test, I highly recommend a thorough meeting with a genetic counselor. Very helpful information.

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  3. says

    I was diagnosed with Stage IIB breast cancer in January at age 43. I’ve had a unilateral mastectomy and chemo and am starting radiation and hormone therapy in the next couple of weeks. I have no significant family history of breast or ovarian cancer in my family, but I couldn’t make the genetic testing appointment fast enough. My daughter is 8 and I did it for her. I don’t possess either of the BRCA genes and am more than grateful that I did not pass on the cancer genes like I passed on her temper, red hair and love of reading. As it is, she will need to start getting mammograms and ultrasounds 10 years before the age I was when I was diagnosed. That’s 25 years away. I pray that tremendous strides are made in the next 25 years and she won’t have to worry about losing her breasts.

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  4. Erin says

    I am so happy you don’t have the gene. I don’t have the gene, but I’ve had breast cancer twice. Three in our family (on my dad’s side) have had it twice. Along with that, my aunt and cousin have had ovarian. My cousin’s stage 4 bc actually took over he whole body including her brain, and she is finally managing her cancer. It’s a miracle that she is still with us. She will live with this disease for as long as she can. Right now it’s only in her blood. I hope everyone reading this realizes that a negative gene test does not guarantee that you won’t have breast cancer. I never dreamed I’d have it at 31 and 36. I never dreamed that I would no longer have breasts and that I’d be happy to have curly hair after being bald for so long. Feel your boobies, everyone. I found my cancers both times. Know your bodies, and insist on tests. By the way, mammograms don’t work so well with young and dense breast tissue. They must be used in conjunction with MRI and ultrsound. A mammogram caught my first battle. The ultrasound and MRI caught my second battle- the mammo showed nothing, and this cancer was way more serious.

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