Sunday, January 13, 2013

A New Normal

My dad. My grandma. My Aunt Lynn. My cousin Curtis. My great Aunt Nan.

Cancer has been a part of my family's life for a long time. And I've always had a feeling it would be a part of my life in the future. That feeling intensified when I turned 40 last year. It was like a nagging thought that just wouldn't go away. As science evolved and genetic testing has become more reliable, several members of my family (including my sister) decided to get tested. They were all negative, but I still held off. I mean, it's one thing to THINK you are a ticking cancer time bomb....and it's another thing to KNOW you are. But then this summer I had an abnormal mammogram (which turned out okay...thank goodness!) and I knew it was time to face the truth.

In November I entered the cancer genetics program at Northwestern Hospital. Due to some insurance hiccups (or so they say) and the holidays, my test results were delayed until mid-December and I asked to hold them until after the holidays. This past Wednesday I went for that follow up appointment. There wasn't a lot of small talk at the beginning of the appointment. My genetic counselor cut right to the chase...."your test did come back showing a genetic mutation."

I am BRCA2 positive.

What does this mean? Put as simply as I can.....the BRCA genes are tumor suppressor genes. You get copies of BRCA1 and BRCA2 from each parent. The BRCA2 gene I inherited from my dad (we are assuming, he was never tested before he passed away) is defective, which means I am relying only on my mom's BRCA2 gene copy to help protect me from cancer. Once something happens to that gene, I start developing abnormal cancer cells. Who knows when that happens, but it's typically early in BRCA carriers. This is why my grandma and aunt were both diagnosed with breast cancer in their 40s, my dad with prostate cancer in his 50s. The statistics are alarming - up to 87% chance of breast cancer and 27% chance of ovarian cancer (with some increased risks of other cancers thrown in there for fun).

I just turned 41 and I need to move quickly. My next month has turned into an unending stream of tests and appointments with cancer specialists. And because I've never been one to hold onto extra body parts (I've already had my tonsills and gallbladder removed) -- especially those that are conspiring against me --the ovaries will be the first thing to go. As soon as possible.

This will not be easy, but I have knowledge and I have options. How fortunate am I to know now, when there are people receiving cancer diagnosis' every day who never saw it coming? Like my sister says, I will now be like a VIP when it comes to testing and surveillance. And as my doctor says, while my chances of developing cancer are very high, my chances of dying from it are very low since I will be so closely followed.

I have no intention of turning The Triathlife into a BRCA blog, but it will be a part of our ongoing story. When the genetic counselor mentioned the possibility of a bilateral mastectomy Jonathan said, "...not anytime soon, because she's got an Ironman to do next year!" And the beat goes on as BRCA becomes a part of my new normal.

- HER




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