It’s not that I’m regretting my decision to be tested for the BRCA1 breast and ovarian cancer gene mutation. Not at all. The BRCA1 mutant appears to lurk somewhere in the family and I see it as a duty to my children and their unborn generations. It’s always better, in my book, to have the information rather than behave like an ostrich and hope it won’t happen.
That’s the rational point of view and I’m sticking to it. It’s science after all, and newish science at that. A few years ago I would simply not have had the option to participate in the research study at ACTREC in Kharghar, India. Taking part seems to be the least I can do to help other families deal with the blight of inherited breast or ovarian cancer. I’m helping my own family too.
Since also having genetic counselling before giving a blood sample at the Royal Marsden this week, though, I’ve had the jitters. You see I really hadn’t appreciated the extent of the increase in risk of developing breast or ovarian cancer if I am carrying the BRCA1 gene mutation. I thought it might be doubled or something.
It turns out that BRCA1 carriers have a 60-90% chance of developing breast cancer in their lifetimes and a 50% chance of ovarian cancer. This is way, waay, above the risk for the general population. That these figures have shocked me is an understatement. I know there’s no point worrying until I have the results. I might not even be carrying the faulty gene. If I am, however, what then?
Not having appreciated the degree of increased risk before, I’d thought that I’d manage my risk by being vigilant and taking up the offer of annual mammograms. Apparently, screening for ovarian cancer has been found not to be particularly effective. But, as the genetic counsellor said, this relies upon the screening to pick up a cancer that is already there. It might have started to develop just after the previous screening.
I appreciate that predisposition is not prognosis but the only effective prevention is surgery. A double mastectomy like Angelina Jolie’s, would eliminate the risk of developing breast cancer. In the past I viewed her decision as extreme, though understandable, but it really doesn’t seem that way now. Ironic isn’t it, that I really wouldn’t want to lose the source of such annoyance and embarrassment to me for most of my adult life.
Prevention of ovarian cancer is keyhole surgery – isn’t it marvellous what they can do now? – to remove ovaries and fallopian tubes. I know my child-bearing years are over, and I’m not bothered about that in the least, but I’d quite like to keep hold of my oestrogen thank you. Archers people will understand that I’d rather be a Lillian (without the fagash) than a Clarriluv. No offence but I’m just not cut out to wear a floral polyester skirt and an anorak. OK. That was pretty offensive.
Given that level of risk, it’s not something one can manage simply by diet, weight management or exercise. I am always so thankful for my lifelong loathing of cigarette smoke. The radical prevention options are frightening but I know what my cousin went through, the anguish of her family.
If you’re an insurance company reading this, know that the whole point of doing this test is to try and predict my risk of getting these cancers with a view to prevention. Just thought I’d put that out there before you refuse me a mortgage or deny a life assurance policy. I already have inherited asthma and my mum has Alzheimer’s and that is heritable, so I believe, so I’m obviously a walking disaster waiting to happen.
Anyway, I’m probably fretting over nothing and we shall just have to wait and see. There are some who feel I should not share this sort of deeply personal feeling in a public blog, and I’m not fishing for sympathy or good wishes or whatever. It’s just that writing about it helps me, and it might help someone else who’s faced with a similar situation.
So, that’s that out of the way and now I can get on with my day.
The test result confirmed that I am carrying neither the BRCA1 nor the BRCA2 mutant genes. I am relieved. No need for further testing. No need for surgery. But a salutary reminder to stay vigilant and live healthily.