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BRCA Action

We were scared of uncertainty.

We feared for our future.

We had to take action…

This sentiment could fit any number of issues being debated in our world today: immigration, abortion, gun control etc…

And then, I realized a parallel with the BRCA experience.

We, too, take action in order to protect ourselves against possible danger: cancer. We confront our fears through frequent monitoring or prophylactic surgeries.

Time and time again, women comment on BRCA online groups about how no one understands their decision to have a prophylactic bilateral mastectomy. They feel heavily judged, misunderstood and sometimes ostracized for their choices! Only when a person has a mastectomy is it very clear that it is not a surgery/recovery that anyone would want to experience without good reason. It is super painful, and leaves long lasting, as well as permanent changes that are challenging to deal with on all levels.

The reasons are real:

the threat of cancer when we have children of our own

watching loved ones suffer through a cancer illness

losing many family members to cancer

growing cysts constantly

feeling crazed by constant monitoring

many appointments and false positives

experiencing reactions to contrast dye

The reasons, nevertheless, are our own. Do we express them to justify our decisions to others? Are we also trying to convince ourselves? Perhaps, it is easier to have people on board with our choices, especially because we desire to have them support us both emotionally and physically during recovery and beyond.

I hear people losing best friends, feeling isolated from co-workers and even becoming estranged from family members. Wow. As if feeling scared about our future is not enough stress without our relationships crumbling simultaneously.

Tonight my mother was reporting some problems from her most recent colonoscopy. After having colon cancer twice, she is nearly colon-less. I responded to my mom, “Well, the biggest problem that you have is worrying about something that hasn’t happened.” Later, when I was relaying the story to my husband, admitting that I didn’t sound supportive, I stopped short.

“Isn’t that essentially what I did with my BRCA mutation? Worried about the cancer that I did not have?!” I plead, not really wanting to hear an affirmation.

It’s hard not to judge ourselves and others. Lately, I have been reading how quite a few women are choosing to have prophylactic bilateral mastectomy surgeries without even being positive for BRCA 1 or BRCA2 or any other related hereditary genetic mutation. Those decisions surprised me, I am sure, much in the same way my choices have shaken others. Who am I to judge? Those women have their reasons, just like I had mine.

In those moments of judgement, I hear Iyanla Vanzant’s voice in my head:

Stay in your car. In your lane. On your road. In your world.

And when you do that, it’s time to feel out the options and make a decision, because taking action will help keep the worry monsters at bay. By action, I mean deciding how to make peace living with your genetic mutation; it could look like monitoring or having surgeries.

What was the tipping point that caused you to decide on your action with your BRCA?