A Breast Cancer Survivor’s Decision Not to Do Genetic Testing for the BRCA Mutation -- Right Now

Health Writer

Sometimes clichés work in your favor. No news can certainly be good news, and ignorance can definitely be bliss. But is knowledge always power?

That’s what I’ve been struggling with for the past decade.

Let me explain: I was diagnosed with breast cancer at the age of 50, at the tail end of what is considered “young” at time of diagnosis. I had a lumpectomy, chemotherapy, and radiation. The cancer had not spread to my lymph nodes, and eventually I was in remission. Whew! You’d think I was done. But no.

There was still one piece to complete the puzzle: the BRCA analysis to detect mutations responsible for hereditary breast and ovarian cancers. A simple blood test and an approximately two-week wait and I would know whether I was a carrier, which would mean I was at higher risk to have a recurrence or a secondary cancer someday. Plus, I could pass these defective genes to my children.

Although more than 250,000 new cases of breast cancer are diagnosed each year, only 5-10 percent are a result of inherited gene mutations. Thankfully, I don’t have a history of cancer on either side of my family. Yet both sides are Eastern European Jews, a group with a much higher than average risk of breast cancer.

Some of my doctors recommended I do genetic testing to know my family story for sure. “Why not,” they asked? If the results were positive, I could always prophylactically remove my ovaries and breasts so I wouldn’t have to worry so much about cancer in my future. The other option would be to increase my regular screenings so I would catch anything early on.

Neither of those seemed like options that I wanted to pursue. I don’t really need my ovaries any more, but my breasts, I’m attached to. Plus, I already do regular preventative screenings and I don’t think I could deal with the anxiety of knowing that the big “C” was lurking around every corner waiting to strike me once again.

This is not a light-hearted decision to make. It is something that could change my life.

Besides, I’m no Angelina Jolie. (The actress had a much-publicized preventative double mastectomy because her mother died of the disease and genetic testing showed she had an 87 percent risk of developing it herself.) I suppose, if I had a family history of cancer I might have more seriously considered doing the test. And if I had daughters, I would probably have done it years ago just so they wouldn’t worry about what was hanging on their family tree. But what if I had tested positive? Wouldn’t that have added to their worry?

Since I have two sons, I wasn’t as concerned. I know men can also get breast cancer, but it’s so rare it didn’t seem to be the reason to find out whether I was a carrier. Plus, they keep discovering new genes linked to breast cancer; does that mean even if I got a negative result now, I’d have to do further testing in the future? I feel like I’d be opening a genetic Pandora’s box.

Part of me also didn’t want to find out because I feared what having a “positive” gene mutation on my permanent health record could mean in these days of such uncertainly in our health care system.

My other doctors understood my stance. They supported me, as long as I was vigilant with my regular mammograms and screenings.

So, what caused my cancer? It was probably just random bad luck because I’ve never been a smoker, I exercised regularly, ate well, and had an overall healthy lifestyle. I’ll probably never find out.

The bottom line is: do I really want to know the future? If I had my palm read, would I want to be told that bad news was coming or that I had an incredibly short life line? For me, the answer is no. So, I get my annual mammogram and breast ultrasound. I have a yearly examination with my breast surgeon (we have a relationship that will apparently last a lifetime). I do an ultrasound to examine my ovaries and uterus every other year. For me, that is enough… for now.

Perhaps someday I will change my mind. Today, I will live my life to the fullest and hope for the best. I’m not sure what secrets are written on my palm, but that’s a line I don’t want to cross.

Writer’s note: My decision not to test is my own. Everyone should take into consideration their own family medical history, their doctor’s advice, and their gut feelings before making their own decision about this topic.

See more helpful articles:

BRCA Genetic Testing: Yes or No?

Genetic Counseling: A Tool for Decoding Inherited Cancer Risk

Genetic Testing: One Woman’s Experience