My BRCA Story

My BRCA story began with my mother’s diagnosis of stage 1 ovarian cancer as I was just finishing elementary school. She was in her 40s at the time, and also tested positive for the BRCA 1 gene. After surgery, chemotherapy, and radiation she was in remission for 3 years before she passed away at age 50. At that point, I was still just a teenager. Knowing I had a 50% chance of carrying the BRCA gene before I had finished high school was frightening, but at the same time it gave me many years to process how I wanted to navigate and try to mitigate my cancer risk.

I decided to get tested once I was in a committed relationship. So, at age 28, I found out I was BRCA 1 positive. I was told this meant I had a 70% chance of developing breast cancer by age 70, and a 44% chance of developing ovarian cancer in my lifetime. After feeling the sadness and weight of the news with my husband, family and friends, I began being proactive. I was now living in the US and I joined the local high-risk breast cancer clinic and began breast cancer screening at age 28 (with MRIs, Ultrasounds and Mammograms).

I am so grateful that I found out I had the BRCA 1 gene as young as I did because it gave me many options. I always knew that I wanted to do the preventive surgery for ovarian cancer, but that would be done before age 40 after having children.

The more immediate decision was deciding between a preventative double mastectomy, or high-risk screening for the rest of my life until they found something and treated it then. After a year of waiting for MRI and mammogram results, I decided I wanted to have the preventive double mastectomy, especially because it could reduce my breast cancer risk by 90% to 95%. But then came the question of when? Before having children, so I could recover without also having the responsibility of raising our children? Or do it after, so I could breast feed?

We got married at age 29, and soon after we started thinking about family planning. Did we want to conceive naturally when we were ready? Or did we want do IVF with genetic testing and only implant non-BRCA embryos? How would I know what the right decision would be? I decided to information gather. In January of 2019 we met with a fertility clinic to learn about our options.

Then at age 30, I decided to meet with a surgical oncologist, with a push from my sister, to discuss options for surgery and to connect with a team, even if I “wasn’t ready” yet. Well, then life happened and as I was meeting my surgeon my MRI result from that morning came back. I was shocked when he said there were two areas he wanted to biopsy. Unfortunately, they found Ductal Carcinoma in Situ 3rd grade (also known as DCIS or Pre-Cancer).

My surgeon recommended we move forward with the double mastectomy ASAP. He said it was a good thing I was getting such close surveillance, and if we had waited to do the double mastectomy until after childbearing, there was a chance they could have found invasive breast cancer while I was breastfeeding, as you can’t do the same screening while you are pregnant.

All of a sudden, the decision that seemed impossible to make was a no-brainer. Get these off.. get this pre-cancer out!! Now we just prayed that we caught it early enough on the MRI that it wouldn’t have spread to stage 1. Breastfeeding no longer seemed important to me compared to reducing my cancer risk so I could be healthy enough to have babies and watch them grow up.

I had my nipple sparing double mastectomy right before my 31st birthday. The pathology game back as the best birthday gift I could have asked for, stage 0, no cancer. No other treatment was needed beside this massive surgery I had already gone through. After 4-5 months of expansion, I had the second part of my breast reconstruction surgery. Now I am over 1 year post-op from the double mastectomy, and the worst part of this journey feels like it is behind me. Now I can continue moving forward with living life with a new found gratitude for smaller things and ready to begin our own family.

Going through my surgeries last year helped us make a decision about how we wanted to conceive. I’d like to add there is no right or wrong way to go about these decisions. I decided after going through so much medical treatment, if I could have children naturally, I would want to do so. If I end up struggling with infertility and had to go through IVF in the future, then I would likely add on the extra screen of the embryos.

My mom always said she hoped technology would advance by the time we were adults, and it has. I too have the same wish she did for my future children. We still have a long way to go with testing availability, awareness, and availability of surgical options, and post-surgery support for people living with BRCA.

I truly believe that knowing I have BRCA 1 has saved my life.

My partner and I are now expecting, and although our little one has a 50% chance of inheriting the gene, I believe if I could get through this, they will too.

-Anonymous, 31