Fiona's story: "It took two years to arrange the bilateral salpingo-oophorectomy."

Fiona, from Glasgow, found out she carries a high inherited risk of cancer due to a BRCA gene fault, after her mum was involved in a research study into cancer genetics. She tells us about her experiences, including the risk-reducing surgeries she’s had.

My story starts in 1995/96 when I went to the GP for a repeat pill prescription. I saw a different doctor than usual and was asked about breast cancer in the family. My grandmother had died of bilateral breast cancer in 1954 and my mum had successfully treated unilateral breast cancer in 1989. The doctor asked if I wanted referring to genetics and I said no. I was only 21 and thought there was no rush.

When I turned 36 in 2010, I had the realisation that I was now older than my Granny when she died, so I went to the doctor to be referred to genetics. I was really lucky and probably stupidly naive until that point.  When I had the appointment, I was given a Manchester score of 14. This is a rough tool that looks at how many people in your family have had cancer. They told me that I didn't score highly enough to get tested but they asked if my mum would give blood for a research study looking for new cancer risk genes. She was happy to do this and a year later we were told that she had a BRCA2 gene fault. I was tested and was also positive, and my sister was negative. I actually asked at a later appointment if the Manchester score was correct and they worked it out again and said it should have been 32. I think part of this is because the 1954 death certificate didn't state bilateral cancer.

I think I was always aware, right from 1995/96, that I would have a double mastectomy but what really solidified that was when the consultant said any surgery would be easier if I wasn't having to go through chemo at the same time.

It took two years to arrange the bilateral salpingo-oophorectomy (the surgery to lower my ovarian cancer risk by removing my fallopian tubes and ovaries). This surgery was pretty straightforward. I went on HRT the very next day so bypassed all the menopause symptoms. It was more painful than I expected, but then again I had watched my mum have the same op a year or so earlier and she didn't take any painkillers after she was discharged. She obviously has a higher pain threshold than I do but in general it was totally manageable.

I took three years to get my risk-reducing mastectomy arranged. In between these operations I was diagnosed with MS and a stroke (they don't know when the stroke was, it was just found incidentally on the MRI). That meant I was no longer allowed a DIEP flap reconstruction, where they take part of your tummy to create new breasts, and had to have the two-step procedure using expanders and then implants. The mastectomy went fine, although one of the expanders leaked and was replaced 4 months later. I had the expanders in for about 14 months. It would have been longer but neurology were wanting a new MRI and they asked nicely if the surgeon would hurry up and get on with it!

A few months later, I was told that the implants they used were now banned. I was also in a lot of pain (the kind that would wake you up at night) and one implant slid off to my armpit when I lay down. For all of those 3 reasons, the surgeon said he would replace the implants and fix the wonky pocket. The pain is better now, a lot less frequent and not as bad as it was. After 8 and a half years on the waiting list for this op, I finally have a date.

I've been investigated twice for a changing lump in the breast that causes the most pain but it's not anything to worry about. I have asked the surgeon to have a look at it while he's there in a few weeks!

I'm looking forward to finally being discharged. It's been a long 15 years! In the meantime, we lost my BRCA2 aunt to signet ring stomach cancer. It really hits home that so many cancers are possible and doing something about the ones you can do something about is a no-brainer for me.