I thought knowing I had the ‘cancer gene’ would cast a shadow over my life. Now I have it, I realise how wrong I was
The results of the genetic test didn’t really come as a surprise. My mum died of breast cancer in her mid-30s, and I’d recently had it confirmed that my great-grandma on her side had it on her death certificate too.
Yet when I was diagnosed with triple negative breast cancer last year – the most likely to be linked to a gene mutation – I hoped against hope that it wasn’t inherited. In part because of what it means for my relatives , in part because of what it means for my children and their children, and in part because I didn’t like to think that what I was going through now had been pretty much inevitable from the minute I’d been conceived, and I’d made no effort to find out about it.
Only between 5% and 10% of breast cancers are believed to be hereditary, but if you have a mutation in either the BRCA1 or BRCA2 gene, your chance of developing the illness involves some much bigger percentages. With the BRCA2 mutation that I have, the chance of developing breast cancer by the age of 80 is about 70%; in the general population of women, the chance is just 12-13%. With the mutation I carry, I have a 50% chance of passing it on to my children.
Until last year, I had no idea of this. I could have known – the information is out there. But, despite what happened to my mum, I’d not really looked into it. And no one had really suggested I should – except my grandma. She insisted I got checked out after suffering a breast abscess when I had my son in 2010. I had a mammogram and met someone who asked me about my family history. At that point I only knew for sure that my mum had died of it; my grandma and her sister were still fighting fit, and it was decided there was nothing to worry about.
Three years later came Angelina Jolie’s revelation that she had the BRCA1 gene, and had decided to have a double mastectomy. The story topped the news, and was written about for days afterwards.
Despite what happened to my mum, I’d not looked into it. And no one had really suggested I should – except my grandma
I thought about it fleetingly. Should I ask a doctor if I could, or should, have a test? But I was more concerned about what I would do with the information. Would I have to declare it to insurers? Currently you don’t need to disclose a positive test result, but I wondered if this might change.
Would I ever want to have preventive surgery (the double mastectomy that Jolie chose was, and still is, the only option)? And, I suppose, I was concerned about what the information would do to me. If I didn’t have surgery, would I panic at the first sign of a twinge? Would I live under the shadow of the worry? Would I make myself ill in some other way as a result? Would it make the decision to have more children more stressful?
So I carried on, blithely ignorant. And by the time I saw the stats, there was a 100% chance I’d got it.
Now, of course, I look back and wonder why I didn’t do things differently. Given my mum’s age when she died, I should have qualified for NHS testing, but I didn’t know that. Even having experienced cancer, I’m not sure I would have wanted a mastectomy at first. If I’d found out I had the gene in my 20s, I’d have wanted to know the chance of getting cancer in my 30s and 40s, not just by the time I was 80. Luckily, that type of information is available to people being tested now.
If I had found out in 2010, when I had the mammogram, I would not have wanted preventive surgery because I hoped to have another child, and I wanted to breastfeed again.
But I could have accessed regular screening. During Covid, there was a chance of it being cancelled, so I could have ended up in the same position I am in now. But there’s also a chance I would have had my cancer picked up earlier, and that would have meant less of the worry and pain it has caused. I was in physical discomfort by the time I went to the doctor, and when I was diagnosed, my immediate thought was that it had spread. For more than two weeks, while tests were carried out, I was convinced it had travelled to my brain, and that I was going to be told that I had just months to live. I could have avoided that heartache by knowing it had been caught early.
I’m suddenly relieved to not have a daughter, but I know that my son has a 50% chance of having inherited the gene. If he has, it raises the chance of him having breast, prostate and pancreatic cancer in later life, and will no doubt bring him his own worries. But treatment is progressing at speed, so I hope that it won’t mean difficult decisions for him.
So, too, is the support structure for people with the mutation. Before and after my test, I had phone appointments with the genetics team at Great Ormond Street hospital in London, and they talked me through what it all meant and offered referrals if I wanted to find out more. The cancer charities have lots of information for those affected, and around the country there are groups of people with the mutation who support each other. I haven’t joined one yet, but I plan to.
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Finding out about the mutation has been a blow, despite all the reasons I had to suspect it was there. But knowing has empowered me to make decisions about what happens next. After the genetic test results came back, I was offered a calculation of my chance of getting breast cancer again. The software said my risk of getting it again by the age of 80 was 81%, while the risk of it happening again in the next 10 years was put at 35%.
With those odds, it’s no surprise that the doctors have recommended a double mastectomy. And, although it has still been a daunting thing to sign up for, the statistics suggest to me that it’s the right thing to do. I don’t want to put myself or my family through this again if I can help it, and 35% is too high for me.
And it has empowered the people treating me – there are new, targeted drugs coming on track for people who carry the mutation and aim to stop the cancer coming back. Now that I know how powerful the knowledge is, and that there is support, I wish I hadn’t waited.
Hilary Osborne is the Guardian’s money and consumer editor