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.

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