Living with a Ticking Time Bomb – Inherited cancer risk, the people we’re missing, and the support that comes afterwards

12 November 2026 — lia-rogers

Today’s blog is written by Nicky Tschumi-Leake, founder of BRCare Connect CIC – an organisation supporting those living with an increased inherited risk of developing cancer. Their BRCafé gatherings offer a relaxed, friendly space where people can meet others who understand. There’s no pressure to share, no judgement and certainly no expectation to put on a brave face. BRCare Connect CIC also provides information, signposting and opportunities to talk about subjects that aren’t always easy to raise in a medical appointment.

Have you been watching Coronation Street lately?

Kit Green’s breast cancer diagnosis and the discovery of a possible inherited BRCA+ gene variant in the family have brought a subject into our living rooms that, until relatively recently, very few people were talking about.

And I’m delighted!

Not because of the storyline itself, of course, but because it might just get people questioning their own family history. It also highlights something that often gets forgotten. Men can carry BRCA1 and BRCA2 variants too, and can pass them on to their children.

But here’s what worries me. How many people watching will recognise a pattern of cancer in their family, and how many will actually know what to do about it?

A ticking time bomb?

I lost my mum to breast and ovarian cancer in 2006. She was just 56. My grandmother died at 44. When I discovered I carried a harmful BRCA1 variant in 2018, I understood why knowing your risk can feel like living with a ticking time bomb.

You know there’s a significantly increased risk, but you don’t know if, or when, cancer might develop.

The people we haven’t found

It’s estimated that between 1 in 300 and 1 in 400 people carry a harmful inherited BRCA1 or BRCA2 variant.

Research published in 2018, looking at genetic testing records in Greater London up to 2014, estimated that just 2.6% of people carrying BRCA1 or BRCA2 variants in the general population had been identified.

In other words, almost 97% were potentially unaware.

New testing initiatives have since been introduced, but we still don’t know how many people are carrying a harmful variant without knowing it.

How many could take preventative action if only they knew they were at risk?

Are we testing the right people?

Access to NHS genetic testing has traditionally relied heavily on personal and family cancer history, although criteria have expanded over time.

An inherited BRCA1 or BRCA2 variant can be passed on by either parent, and each child has a 50% chance of inheriting it.

Imagine being asked about your family history of cancer when you don’t even know who your biological relatives are, let alone what illnesses they may have had.

It’s a real issue. Adoption UK has raised concerns that some adopted people’s medical records are marked as having no family history of concern, when the truth is that their family history simply isn’t known.

Even the Government has acknowledged that people who are adopted could be disadvantaged when eligibility for genetic testing or screening relies on family history.

Now, not knowing your family history doesn’t automatically qualify you for genetic testing on the NHS, although specialist assessment may be possible. The route here would be to speak to your GP and see if a referral  to your genomic centre might be feasible.

But here’s my question. If we’re serious about identifying inherited cancer risks before cancer develops, how do we make sure these people aren’t overlooked?

Family history doesn’t always tell the whole story.

A 2026 study by researchers at The Institute of Cancer Research tested 3,515 newly diagnosed breast cancer patients and identified 166 potentially harmful inherited variants across seven genes.

Under existing NHS eligibility criteria, only around one in five of those patients would have been offered genetic testing.

Testing itself is advancing. The NHS’s inherited breast and ovarian cancer panel now includes eight genes, including BRCA1, BRCA2, PALB2, ATM and CHEK2.

But the challenge isn’t simply what we can test for. It’s making sure people who could benefit are offered that opportunity.

Not everyone has the same risk

Certain communities are also more likely to carry particular BRCA+ variants.

For example, around 1 in 40 people of Ashkenazi Jewish ancestry and 1 in 140 people of Sephardi Jewish ancestry carry a harmful BRCA variant, compared with the lower prevalence in the general population.

The NHS Jewish BRCA Testing Programme has been an important step towards identifying people who might otherwise have been missed, with work underway towards a longer-term service in 2027.

So, what can you actually do?

First of all, having a BRCA+ result does not mean you will develop cancer.

Depending on your individual risk and circumstances, options  might include additional breast screening, risk-reducing medication, preventative surgery or discussions about family planning and testing relatives.

Some people choose surgery. Others prefer surveillance. Some need time to process the information before making any decisions at all.

If you’re concerned about your family history, speak to your GP. Knowing which relatives have had cancer, what type and at what age can help establish whether a genetics referral is appropriate.

Try not to fall off the proverbial cliff

I’m grateful that genetic testing and preventative medicine gave me choices my mum and grandmother never had.

But what happens once the appointments are finished and you’ve been discharged?

For many, it can feel like falling off the edge of a cliff.

What about the emotional fallout? The changes to relationships and intimacy? The worries about your children? The confidence that seems to disappear somewhere along the way?

And the strange feeling that you shouldn’t really need support because, after all, you haven’t actually had cancer.

I don’t doubt the commitment of the clinicians who look after us. But there’s a difference between receiving excellent medical care and having everything you need to navigate life afterwards.

We cannot keep talking about cancer prevention without talking about the impact prevention can have on people’s lives.

There is progress, but we need to join the dots

The NHS National Inherited Cancer Predisposition Register is a welcome development, bringing together information about people with inherited variants across approximately 120 cancer susceptibility genes.

The aim is to improve access to monitoring, screening and preventative care.

But I’d love to see the same joined-up thinking when it comes to emotional wellbeing and community support.

And that’s precisely why I founded BRCare Connect CIC in 2025.

Through our BRCafé gatherings, peer support and community awareness work, we’re trying to bridge that gap between the clinical world and everyday life with BRCA+.

Where do we go from here?

We need to talk about inherited risk with men as well as women, reach people before cancer develops wherever possible, and recognise that not everyone has a clear family history.

And when somebody discovers they’re BRCA+, we need to make sure they don’t feel abandoned once the clinical side has been dealt with.

Because living with a ticking time bomb is frightening enough.

But imagine how much more frightening it is when you don’t even know it’s there.

If you are living with or affected by BRCA+, BRCare Connect CIC would love to hear from you.

www.brcareconnectcic.co.uk

Sources and further reading

1. NHS – Genetic testing for inherited cancer risk
   https://www.nhs.uk/tests-and-treatments/genetic-tests-for-cancer-risk/
2. Research into unidentified BRCA1 and BRCA2 carriers in Greater London (2018)
   https://pubmed.ncbi.nlm.nih.gov/29622727/
3. BRCA-DIRECT genetic testing research (2026)
   https://pubmed.ncbi.nlm.nih.gov/42426004/
4. Genomics England – NHS inherited breast and ovarian cancer gene panel
   https://nhsgms-panelapp.genomicsengland.co.uk/panels/635/v3.2/
5. NHS – National Inherited Cancer Predisposition Register
   https://digital.nhs.uk/ndrs/our-work/genomics/nicpr
6. NHS Genomics Education – BRCA testing for people with Jewish ancestry
   https://www.genomicseducation.hee.nhs.uk/blog/brca-testing-for-people-with-jewish-ancestry/