Aimi Munro

Aimi shares her Stolen Moments story and describes the life-changing decisions she has had to face since discovering she is a BRCA1 carrier.

"Ovarian cancer stole my grandmother’s life at 36 and breast cancer stole my Mum's life at 35. A BRCA gene mutation took away my chance to have any more children and stole part of my femininity at the age of 34, when I had preventive surgeries.  

At the moment there is no screening programme for ovarian cancer. We desperately need a screening process that would give proper reassurance to those of us with a higher risk of the disease. Not only would it save lives but it would prevent many women, of all ages, enduring massive life-changing operations and the repercussions.

I hope one day my daughter won’t need to take the steps I have taken just to be able to be see her own family grow up.

When you’re told you carry the gene mutation that pretty much hangs over your family like a dark storm, I don’t think you can fully ever prepare yourself for how that will affect you – physically, emotionally or psychologically. In 2013 I thought I had faced the most difficult decision of my life – to have a preventative double mastectomy due to being a BRCA1 carrier. With breast cancer terrorising my family through the generations, it was the easiest decision to make but one of the hardest to go through. In 2016, I found myself facing another challenging decision.

I was aware that ovarian cancer lurked around my family but I didn’t know to what extent. According to my genetic counsellor, due to my distinctive family tree I was actually at a slightly higher risk than the BRCA ‘norm’ of 40-60% chance. My own mother passed away from breast cancer, however my grandmother, great grandmother, both her aunts and two nieces were all diagnosed with ovarian cancer in their early 30s and passed away before they were 40.

Ovarian cancer and its effects have haunted another level of my family tree that carries the BRCA1 mutation for several generations. For months and months I would obsess about the symptoms of ovarian cancer (assuming the worst at any bit of bloating, irregular bleeding or stomach pains). It’s all I would think about from morning to night.

It dawned on me that having children was so important to me and that this might never happen. I’d watched many close friends grow into wonderful mothers and always felt a pang of envy. Would I ever have that? Would I ever be able to have that? I already knew I’d be offered a bilateral salpingo oophorectomy (BSO) – the removal of both fallopian tubes and ovaries – and that I wouldn’t be able to conceive children naturally.

For some woman there is the option of pre genetic diagnosis (PGD) to test if the embryos are affected by the gene. Unfortunately for me, this wasn’t an option as my local NHS does not fund or offer this. I was advised in 2015 to give the BSO major consideration by the time I was 33. I turned 33 in April 2016. My partner and I decided to try for a baby first before going down that scary road of hormonal injections, nasal sprays, and egg removal on advice from my gynaecologist. In Feb 2016, I found out I was pregnant – I never thought I would be telling people!

I have struggled with the guilt. Was it fair for me to have a child? Am I being selfish? There’s an enormous chance that I've passed the BRCA1 gene mutation onto my child; a gene mutation that has terrorised my family for generations. What would my mum have done if she knew about the genetic link back then?

When you live with a risk of anything, there is always a fear that coincides with that. BRCA is no different. I always put on a façade that everything is fine, but deep down I’m drowning in this sea of grief. The grief isn’t only for the parts of my body I was and will be forced to remove to save my life. It’s grief for my relatives that didn’t have the same choice back then that I do today.”

If you would like to share your story or become an ovarian cancer voice, please contact Tori@ovarian.org.uk