I wanted a double masectomy, and here's why...
In early 2016, out of the blue, my sister was diagnosed with stage 3 breast cancer. When my mother told me, I will always remember feeling like I was outside looking in. For the following 24 hours, I didn’t react at all, I just didn’t understand, my sister was 39 and healthy.
Leaving my new-born son at home for the first time, I accompanied my sister to her first oncologist appointment. I remember the Professor asking about anyone in our family who had previously had cancer and although I had a vague awareness of the BRCA mutation due to Angelina Jolie having the BRCA gene as well as it running in my husband’s family, my sister, myself and the oncologist all agreed it wasn’t particularly applicable to us as we didn’t have a strong family history that we were aware of.
After that oncologist appointment, my sister and I decided she would concentrate on treatment and I would focus on investigating our family history further. Like a lot of families, there were big generation gaps and general confusion regarding historical family health, additionally, although it was something that we had never really noticed, our paternal side was mostly male. In fact, although there were only a few females in the family, almost all had been affected my either breast or ovarian cancer. Both the cancers that are prominent in BRCA families. We went back to the oncologist and asked for the test. My sister had to be tested first before I was able to be tested. She came back positive.
I went to my GP and requested the test, my gp referred me to a genetics councillor who talked me through the process and the following steps after the test. It’s just a simple blood test. I remember my son being cooed over by all the nurses whilst I was having blood taken and being very confident I would come back a negative. My results came back as positive. I had an 87% overall lifetime risk of getting breast or ovarian cancer. I was 36. I cried every day for the next 2 weeks, I felt like a ticking time bomb.
The care I was given by the NHS was outstanding, my genetics councillor talked me through all my risks and all my options, her door was always open to my (many) questions. I also attended sessions at a cancer charity. Although breast screening can detect cancer in its very early stages and thereby vastly increasing chances of survival, it does not prevent cancer. Currently, although there is screening available for ovarian cancer, it is not fully reliable. The NHS ‘gold’ standard for those who are at high risk of ovarian cancer is to have your ovaries and fallopian tubes removed and for breast cancer, a mastectomy. The recommended average age to have these operations is by 40 although this can vary depending on family history. My husband and I had been married for exactly a year and hadn’t yet completed our family. Based on the options provided and our personal circumstances, we decided I would get every screen test available and all being well, go forward with our plans for a second baby and then onto my operations thereafter.
My first pregnancy was just amazing, not in the sense that I felt fine and everything went to plan, but in the sense of what was happening to my body. The second time round however, was very different. When I was five months pregnant, I found a lump in my breast and had to go for a scan, I was hysterical with worry and the only person I told was my sister as I knew she’d understand. Thankfully, it was nothing more than a ‘pregnancy lump and bump’.
Just 12 weeks after my second child was born and when my eldest was only 21 months old, I had my ovaries and fallopian tubes removed. It was a month before my 38th birthday. 2 months later I had a double mastectomy and had reconstruction within the same operation. After my last operation, I physically felt lighter. I no longer had the worry every morning if today was the day I was going to get cancer. My husband said he could finally breathe again. I was in the clear!
I’ll forever be grateful to my sister as, because of her, I have been able to take preventative measures. Effectively, she has saved my life and potentially my children’s lives. People always tell me I’m brave but I don’t feel brave, I feel lucky. Lucky that I was able to have the knowledge and do something about it.
Guest Blog written by Amy Kay