The Anvil: Living in fear of ovarian cancer
09 November 2017
After losing her mum to ovarian cancer and later being diagnosed with a BRCA1 gene mutation, Abbie McAdam lived her life plagued with anxiety that her own children would also be left without a mother. Now a year post-surgery, she reflects on the decision she made and the impact it has had on her life...
"Two sleeps until BRCA op number three. My ovaries and fallopian tubes are being removed in a bilateral salpingo-oophorectomy (also known as 'BSO'), spelling the end of baby-making for me. My fertility has never caused me problems, (I have healthy children), but I am distressed somehow at losing this aspect of myself. It feels like the elimination of my ability to make a choice about my family and my body as a fertile woman.
Despite my wonderful family being complete, it hurts me to have to do this, but I simply cannot risk dying from ovarian cancer. The terror I have about developing it isn’t something I can live with anymore. Even though I know I’ve made the right decision, it's sad and utterly final. I hope from the bottom of my soul that if my children have inherited my mutation, they will make decisions about their cancer risk at a time where removing the female organs of BRCA+ women is a thing of the past... Quote from my Facebook account from 03/10/16
My mum passed away I was 16. She faced having two primary cancers, and the original disease site, (fallopian tubes and ovaries), was the one which ultimately took her life. From the day my beautiful mum died, I felt as though I was a cartoon character, walking through my life with a giant anvil hanging over my head, waiting for it to fall and kill me. In this instance, the anvil was my fear of dying from cancer, and I carried it with me for 20 years until the day I got the pathology results from my BSO.
I was diagnosed with a mutation on my BRCA1 gene in January 2016. The scientists who carried out my genetic testing matched a mutation in samples from my mum and me on our BRCA1 gene. I was given very high statistical likelihood that I’d develop breast and/or ovarian cancer over my lifetime. My genetic counsellor explained my options for screening, but I told her I’d known from the age of 16 that I wanted risk-reducing surgery, and she referred me immediately to breast and gynaecology consultants to begin the process. Suddenly in addition to the anvil, I had overwhelming feelings of guilt that I may have passed on a life-threatening genetic pre-disposition to my children.
"I felt a sense of liberation and empowerment about the choice I had made"
Abbie McAdam
Having my double mastectomy in July 2016 was frightening, but somehow felt robotic or mechanical. The real fear for me was that I had already developed cancer in my fallopian tubes, especially when my genetic counsellor relayed the most worrying fact of all for BRCA mutated women – there is no reliable screening method to detect ovarian cancer. Prior to my BSO, I convinced myself that I already had cancer and began researching treatment for patients with ovarian cancer. People constantly called me brave, and I would smile politely while feeling quite the opposite inside – distressed and confused.
I knew that having my ovaries removed would result in my body being plunged into early menopause, and I would have to live with the associated risks and symptoms as a result. I chose to have my BSO ten weeks after my double mastectomy, literally at the earliest possible time my surgeon would perform the procedure. I wanted to do my operations in that order so that I would be able to take Hormone Replacement Therapy (HRT). This way I wouldn’t have any breast tissue, since taking HRT can increase the risk of developing breast cancer.
I had my BSO operation in October 2016. My wounds were small – three incisions in my tummy button and on either side of my hips. When I came through from recovery after the procedure, I sat on my hospital bed, pulled the curtains round and cried harder than I had since my mum died. I cried so hard that the blanket on my bed was damp with tears.
The period of time between having my BSO operation and getting my test results from the removed tissue was one of the most difficult of my life. I made private plans about potential cancer treatment, and struggled to corroborate my HRT dose with my menopausal symptoms. The anxiety was unbearable and the anvil felt ready to drop.
After two weeks, a nurse from the hospital phoned me to tell me that the tissue removed during my BSO tested negative for any cancer. During the phone call the anvil left me, and I felt a sense of liberation and empowerment about the choice I had made. It’s challenging to find words strong enough to describe the relief I felt on that day. My children would not be faced with a future without their mum, and I no longer had to imagine how horrific it would be for my partner to lose me. The news took a couple of days to properly sink in, and once it did my life changed forever.
The anvil was gone…."
