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Coming to Grips with Being Positive for a BRCA2 Gene Mutation

Suzy Winter, a married teacher with three grown children, has a history of breast cancer in her family and recently learned she is positive for the BRCA2 gene mutation. This is her story in her own words.

“I really am a mutant.” I wrote after testing positive for the BRCA 2 gene mutation, while crazy things were running around in my head as I attempted to come to grips with this part of my story. Basically, a story I tried to run away from my whole life but didn’t realize what I was running from.

Situational irony is basically when the plot takes a turn you were not expecting – or that’s my definition. The past few months have been one ironic situation after another. It all began when I decided to go ahead and get the genetic blood test to help determine my breast cancer risk. I lost my mom when I was 24 after her second battle with breast cancer, which had spread to her lungs. Her diagnosis had already put me at a higher risk of getting breast cancer, too.

I thought I was going to be fine. I live a healthy life: I workout, I don’t smoke, I breastfed all my babies and I usually have a positive attitude – all the opposite of my mom. But the results of my genetic testing revealed that I have the BRCA2 gene mutation. I just sat in my car and sobbed. After a bit, I gathered myself together and went back into my classroom as if nothing happened. I was glad this particular school day was a staff workday. I wasn’t ready to tell anyone the news yet because I had a lot to process. However, the date was not lost on me – Nov. 11. That was the same date my mom learned her lung cancer was terminal.

When I got home, I told my husband. He supported my decision to go ahead and tell our adult children, as they are also at risk. Over the past few weeks, I’ve met with more genetic nurses and have discussed options including having a double mastectomy, a hysterectomy and breast MRIs. It is all surreal to me and I feel as though I am in a fog.

I am not really going down the internet rabbit hole, only reading information from reputable sites. I joined an online support group for those with the BRCA 1 or 2 gene mutation and have learned a lot. I’ve started meetings with a counselor, a nutritionist and two surgeons. I’ve also started planning my surgeries. I’m hoping to have my ovaries/fallopian tubes removed during spring break and then a double mastectomy over summer break. As a teacher, I want to schedule these during my time off.  

There is a weird silver lining in this journey. My oldest daughter learned she too has the BRCA2 gene mutation and is beginning the process of speaking to doctors about what’s next. My younger daughter and my son plan on being tested now that we know both mom and sister have the gene mutation. It made it hit home in a big way.  

Throughout this, the only regret I have is that I didn’t find out sooner, but honestly, it’s only been in the past few years that genetic testing has been offered to me. I think I was in denial that genetic testing would affect me and a little afraid thinking the testing involved more than a simple blood test.

From what I’ve learned, the BRCA2 variant opens the door to more possibilities of developing ovarian, pancreatic and melanoma cancers. Ovarian is the sneakiest one I gather because it is the hardest to detect until it’s almost too late.

The BRCA genes are supposed to keep your genes healthy to fight against cancer mutations. Mine are broken. I have gone through all the cycles of grief regarding this multiple times. At this exact moment, I am in acceptance, but I know tomorrow it could be back to anger or bursting into tears as it cycles back around.

However, this is not my first time on the grief rollercoaster. That’s what I want my friends and family to take from this. If you have a close family member who dealt with breast cancer, you could be at risk, too. I suggest you get genetic testing while you have time. This isn’t meant to bring fear upon you. I lived totally unaware for years, but I personally cannot go blindly along without being proactive. I am not afraid of dying, but I am not through with living yet, either.

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.