Tuesday, 3 January 2017

The BRCA1 prize in the genetics lottery

My mother had the BRCA1 gene, and as I'd had a breast cancer diagnosis at the tender age of 28 (and a second at 35), I assumed that I'd inherited the gene.

In order to have regular MRI's or risk reduction surgery on the NHS it seems you have to get tested, so earlier this year I attended the genetics clinic and gave a blood sample. The results came through a little while ago confirming that yes I did indeed win the BRCA1 prize in the genetics lottery. Woo hoo. Go me.

As a result, when I went to hospital in early December to get a polyp removed from my womb, the lovely consultant who did the pre-op rounds offered me a bogof (buy one, get one free) deal I couldn't refuse. She could, she explained, (as they'd had a cancellation) remove my ovaries and fallopian tubes while I was under general anaesthetic in addition to the pre-arranged the polyp removal. This was an operation I'd been putting off for some years, but I knew it ought to be done, so I gracefully accepted the consultant's kind offer.

On the plus side I only had 2 hours to worry about having the op. Unfortunately this was just enough time to google "laparoscopic bilateral salpingo-oophorectomy" and read about the various recovery experiences of ladies who'd been through the procedure. I say "unfortunately" because what I read wasn't particularly upbeat stuff - there were ladies who'd had a rough time recovering from the op.

I'm glad to say that my own experience was pretty good. The operation went as planned, and once I returned to the ward from the recovery room I was up and pottering about within an hour. Looking back, I think being mobile made my recovery much easier. For keyhole surgery they pump gas into your abdomen to give themselves some room to manoeuvre. From what I've read it is the remaining gas that causes most of the misery associated with this op, and from my own experience I think movement was key to getting the gas to go. 
  
The other major problem with this op, if you are pre-menopausal when you have it, is that you crash immediately into the menopause. To bridge the hormone gap I started taking Tibolone, which is a kind of HRT. The jury is still undecided about HRT and BRCA1, so I wasn't planning on taking it for long - just for a couple of months to get me over the hump. 

Once again, I did plenty of reading, and discovered that HRT isn't as effective for pre-menopausal ladies who have their ovaries removed as it is for ladies who are going through the menopause naturally. The natural menopause is a drawn out process, which starts long before menstruation stops, with a gradual decline in hormone levels during what is known as the peri-menopause. HRT is calibrated to match the lower hormone levels of peri-menopausal women, so it doesn't even come close to the levels usually found in pre-menopausal ladies. From the research I looked at, it seems as though I could only expect a 30% reduction in hot flushes by taking HRT.

This didn't seem like much of a payoff given the question mark over the safety of HRT for BRCA1 carriers. So after about 18 days I stopped taking the Tibolone.

Yet here is the strange thing - four weeks on from the surgery, and a week since my last HRT tablet - I've not yet had a hot flush. In fact I haven't had a single symptom from the menopause menu. 

I suppose the key word is "yet". Who knows what joys tomorrow will bring?

Stay tuned.

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