BRCA2 Gene, Your Stories

I remember whose brown curly hair I inherited..

I have my dad’s dark curly hair­­ and I found out that’s not all.

Many years ago my dad’s sister, Shirley had breast cancer. She is close to 80 years old now­­ healthy, vibrant, and happy. However, more than a decade ago, her daughter, my cousin Donna, with that same dark curly hair was diagnosed with an aggressive form of breast cancer. She was a young mother, who left behind a husband and a beautiful daughter when she lost her battle with breast cancer prior to her 40th birthday.

Some time later, Shirley reported to my two sisters and me that there was a genetic test that we could take that would tell us if we had the gene mutation­­ that breast cancer marker. At that time in the U.S. it seemed risky to be labeled with a preexisting condition by the insurance company so I brushed it off for that reason. It just didn’t seem like a good idea.

Then two summers ago I met my dear friend Bonnie. As I got to know her she talked about her precious daughter, Holly who had passed away. When I asked what had happened to her daughter, the story she told me reminded me of Shirley and Donna. It sent off bells and whistles in my brain. It was a wake up call, for you see, I too have a precious daughter, Molly.

Our conversation stirred feelings in me that I knew I had to address. It was time to DO something. It was like a switch had been flipped. I was tested and when the test results came back I was stunned when my GYN doctor told me that I tested positive for the BRCA2 mutation. I learned that this genetic condition is related to my dad’s Ashkenazi Jewish Heritage. According to the research I would have an 84% risk of breast cancer and a 27% risk of ovarian cancer by the time I reached the age of 70. In addition, my children would have a 50/50 chance of having the BRCA gene as well. I went to the waiting room to make phone calls, and I cried knowing that I would have some tough decisions in my future.

After the news that fall, I decided it best not to delay the surgery to remove my ovaries and uterus. If not removed, these cancer prone organs could have become diseased and that type of cancer is difficult to monitor. I didn’t need this equipment anymore since I didn’t plan on having more children. I was a “no brainer” my doctor said. So in January she performed a laparoscopic bilateral salpingo oophorectomy. I was back to work five weeks later. Her next question…”When are you going to have your mastectomy?”

Meanwhile, my friend/neighbor, Susan was battling breast cancer and had the mastectomy. She set her sights on reconstruction, which proved to be a very long, drawn out, painful process. It was about six months later that she contracted a terrible infection, had to have more cancer cells removed, as well as one of the implants. It was not only a dangerous situation, but very discouraging for Susan who is an extremely level headed and positive person.

Of course Susan would never tell me what I should do, but we still just look at each other and shake our heads. She is not BRCA positive and she had cancer. I am BRCA positive and I do not have cancer. She has endured many surgeries that have reeked havoc on her body. For her
it has been a roller coaster ride with steep climbs and large drops, with too many doctor visits to count. Can you imagine me saying, “Where do I sign up for that?”

So here I am, fifty years old and healthy, but cautious. I go for my yearly mammograms with an MRI in between. The MRI serves as a fine screen which can detect cancer early. I have established a relationship with a breast surgeon, who monitors my scans and examines my breasts after each one. My GYN doctor has suggested I take Tamoxifen, a drug to reduce my risk of breast cancer by 30­40 percent. It sounds like a good idea and maybe it is, but I am taking a drug that can cause cancer in other organs, such as the ovaries and uterus. I am a good candidate for the drug because I had those organs removed, but I wake up some nights wondering if I am somehow trying to “trick” my body. I wonder if maybe I should leave well enough alone.

As other members of my family learned of my BRCA discovery they too were tested­­ and yes, sadly, my daughter, Molly has it too. She is a young woman and will make many family and health related decisions based on this information. My big sister, Kristan, also tested positive and she has a daughter too. Kris is six years my senior and thankfully she is also healthy. The middle sister, Kelly, tested negative­­ excellent news for her and her five children. My son is yet to be tested.

Most recently, my GYN doctor reminded me at my yearly appointment that it was time for me to have a colonoscopy. I was going to put it off indefinitely, until I remembered whose brown curly hair I inherited. I realized that this would also be an important step for me to take because relatives on my dad’s side of the family had this kind of cancer too. A co­worker, Lorraine, who had cancer and removed her breasts asked me if I was pretty attached to my breasts. I wished I could say no. I try to stay fit, I like to buy clothes, and I try to keep a shapely figure. Is it worth my life? Of course not.

Right now this feels like the right path for me. I am being as proactive as I can be without taking the drastic measure of removing my breasts. On top of my routine scans and drug therapy I eat fruits and vegetables, exercise regularly and keep a positive focus. Moreover I thank God for the good health my family and I enjoy. It is everything.

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1 Comment

  • Reply Josie Kvas December 4, 2015 at 9:56 am

    Cancer invades too many lives and weaves through many generations past and those yet to come. Karen, I am so grateful you have shared your story of how cancer can veil and overshadow our lives, and how you move bravely through your life despite its ominous spectre. Blessings to you and your family.

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