Things You Only Know If You Have To Decide Whether to Have Preventative Mastectomy In Your 40s

Cancer was certainly on Tania Boler’s radar when she decided to pay for blood tests to see if she carried any of the genetic mutations that would put her at higher risk of the disease. ‘My mother-in-law had just died of breast cancer, I had a close friend who’d discovered she had the BRACA gene. But it was more about my husband, he’d had so much cancer in his family... we found this Canadian company called Color, which tested for about 30 different gene mutations.’ Tania paid about £150 for her tests, and Color’s website is currently offering the tests for around $250.

And then Tania’s results came back. 'So, I went into it with my husband, not expecting to find anything out about myself. And then he got an email saying he had no genetic mutations, it was all fine, and I got one saying "all fine but you need to have a conversation with a genetic counsellor."

Tania discovered that she carried the CHEK2 mutation, which put her at a higher risk of breast cancer, and a slightly higher risk of colorectal cancer. If this is the first time you’ve heard of CHEK2, you’re not alone. Most people have heard of the BRCA genes, because they relate to a much higher risk of developing breast cancer - CHEK2 is considered a moderate-risk gene mutation by comparison. [If 10% of breast cancers are hereditary, 1-2% are linked to CHEK2 {href='https://www.today.com/health/what-chek2-experts-discuss-gene-linked-breast-prostate-cancer-t230449' target='_blank' rel='noopener noreferrer'}).

Tania’s options were to do nothing, and wait it out, or have preventative surgery and reconstruction. ‘It’s a huge shock to get that information,' she tells me. 'And it’s also an odd one, because it’s something you’ve always had anyway, so in some ways nothing’s changed, right?’

The advice Tania received on what to do next was mixed - with one genetic specialist telling her that they’d recommend surgery if she was at 30% risk of developing cancer, but that she only currently showed a 29% risk - although that would increase to a 40% chance if she was assessed based on the same information in America.

Tania then discovered that the NHS didn’t have a clear pathway for the gene mutation she carried (although this has since changed), which meant she spent nine months waiting to hear back on what her options were. ’Then I went to see an oncologist, and that made it very real, with the reality that 50% of us will get cancer at some point. And his point was, look this is not the type of cancer that you’re going to get early onset. You’d probably get it in your 50s, at which point your kids would be grown up and treatments are getting better all the time. So what he was saying was, you’ll probably get breast cancer, but you’ll probably be ok with it.’

The comment about her kids being grown up still rankles Tania today. ‘So what, am I defined as a mother? So if my children are grown up [and I get cancer], it doesn’t matter?’

In the end, Tania decided to move ahead with surgery, opting to have both breasts removed and implants inserted. A‘wait and see’ approach didn’t feel like an option - not least because prevention around illness and disease is at the forefront of what she does. Before launching Elvie in 2013, Tania completed a PHD in women’s health, going on to work in HIV and Aids prevention, including a stint at the United Nations. Her move into women’s health tech when she launched Elvie with a pelvic floor trainer in 2014 also makes sense in this context - she was shocked to discover how common pelvic floor prolapse was amongst postnatal and post-menopausal women and wanted to find a preventative solution.

‘My beliefs have always been around prevention and tackling taboos, and part of me thought, if I’m going to walk the walk, then I need to practice what I preach and not bury my head in the sand. But honestly, it took about a year to talk to enough doctors, to get enough opinions.’

The problem, as Tania sees it, is that the genetic testing available to us can garner incredible, detailed results, but interpreting it isn’t always easy, and healthcare hasn’t caught up even when you do have the information. ‘I’m a scientist by background, and I sat there pouring through the clinical trials - I didn’t want to round up to Google - but even when I spoke to an expert, it’s still very new.'

There’s something undeniably alluring about the promise of genetic testing in this context - it offers the possibility of a crystal ball into a potential future. But the information that comes back might be ambiguous, it might need decoding by an expert that won’t always be easy to come by, and you might not be able to do anything about it anyway.

‘It’s easy to say give women as much information as you can, but if there’s nothing you can do about it, then it does get more complex, especially when the information is very ambiguous, right?’

Tania’s at pains to stress that she’s in a very privileged position - not only does she have a background that made it easier to understand the information she was being given about her potential future, but she was able to pay privately to have preventative surgery that removed the risk of her developing breast cancer.

But the fact that Tania had options - and a choice - don’t make it an easy one. For one thing, she was surprised by how much the potential loss of her breasts was bothering her. ‘About three months before I was trying to tell myself that I wanted to do this, but I was increasingly getting quite scared.

‘I had persuaded myself that I didn’t care about my breasts and my breasts didn’t matter and this was an easy decision to make. But what I hadn’t realised was that emotionally, subconsciously it's incredibly upsetting: your breasts are part of what identifies you as a woman. I could tell myself the rationale behind it [the operation] but I was nervous and upset.'

In the end, Tania went on a retreat for entrepreneurs run by a yoga teacher and trauma educator called Molly Birkholm, who suggested that what she actually needed was a boob blessing. ‘I thought Oh my goodness what is that? But then I thought, "why not? I should try everything right?”'

‘And this was the bit that helped me reconcile myself with the operation in a much more positive way. Rather than saying I don’t care about my breasts, I’m going to get rid of them, we did this exercise where we thanked my breasts for the purpose they served, and [acknowledging] that they no longer need to serve the purpose of giving breast milk, but that my new breasts would still part of my sexual body. It was a much better way of thinking about it positively. It was quite a funny experience in some ways, but it did help me.’

Tania is wholly positive about her experience with the surgery itself, and the aftermath, and her personal story certainly feels like a good news one. But what we can take away from it is a bit more complicated. Tania herself points out that while the NHS is good at treating cancer once you’ve been diagnosed, as a country we fall behind Europe when it comes to screenings and cancer prevention. Figures cited by the Nuffield Trust and the BMA this year show that we’re lagging behind the rest of the world when it comes to cancer care and outcomes in the UK. Five year survival rates for breast cancer here are 85.6 per cent, versus 90 per cent in the US, 60 per cent for colon cancer, versus 70.7 per cent in Australia and 63.8 per cent for cervical cancer, versus 71.4 per cent in Japan. The BMA points that these are the most recent comparable figures, from 2010-2014, but equally the Nuffield Trust has found that breast cancer screening rates have been gradually declining from 2012/13, and were paused entirely in Scotland, Northern Ireland and Wales, and paused locally in England during the first part of the Covid-19 pandemic.

The genetic testing Tania had wasn’t even available five years ago, and you can now get it done for around £150, which feels like welcome progress, but as Tania discovered, the NHS and health insurers are still playing catch up on what to do with the wealth of new health information that many of us can new choose to access.

We talk a lot about health education and choice, especially when it comes to women’s bodies and health. Whether that’s safe and affordable access to abortion, or proper education around contraception, or pelvic floor health. So how does Tania think we can all advocate for our health better in this new age of endless information? For her, starting the conversation is crucial. 'The first step to solving a problem is identifying it, proving that more open conversation about women's health is vital. Because not only would it help call attention to symptoms and signs that shouldn't be ignored, but also raise awareness of any support and treatment options available. Ultimately, our work at Elvie isn't limited to technology; we want to empower women to talk openly about their health, breaking decades-old taboos in the process.’

And as she points out, progress might be slow, but it is happening. Genome testing is available on the NHS - although you must meet certain criteria (if your doctor thinks

you may have a health condition caused by a change in one or more of your genes, someone in your family has a health condition caused by a change in genes, if some of your close relatives have a particular type of cancer that could be inherited, or if you or your partner have a health condition that could be passed on to your children), Risk reduction surgery is available for anyone with a risk over 30%, which has changed since Tania's decision to pursue surgery. There was no specific support for those carrying the CHEK2 mutation Tania had when she started her journey, but now there is.

Ultimately the more information we have about our bodies and our health, the louder we can shout, the better we can advocate for ourselves. If we’re lucky this drips down into the health advice we’re given, and the support and treatment available for everyone. They say knowledge is power, and nowhere is that more true than when it comes to our own bodies.