When Harjit Singh Nijjer discovered he carried a genetic condition that dramatically increased his cancer risk, his immediate concern was not his own health but the wellbeing of his children. At 48, he had just been diagnosed with bowel cancer in 2015, and after surgery and chemotherapy, genetic testing revealed he had inherited Lynch syndrome—a hereditary condition that substantially elevates the likelihood of developing bowel, ovarian, pancreatic and other cancers.
"It's not what you want to do as a parent. It's the last thing you want to do."Harjit, now 59 and living in Market Harborough in Leicestershire, explained the emotional weight of potentially passing the condition to the next generation.
"It's the guilt you carry. Things you'd want to pass on to your children - good looks, intelligence - but not something like this."
His eldest son, William, subsequently tested positive for Lynch syndrome, which affects approximately one in 400 people in England. The pair have now become advocates for the 'It Starts With You' campaign, a hereditary cancer awareness initiative led by radio presenter Becky Measures, who underwent a preventative double mastectomy at age 24 in 2006 after discovering she carried the BRCA1 gene mutation—a development she shared with her mother Wendy Watson, who carried the same mutation.
What is Lynch syndrome and how common is it?
Lynch syndrome is an autosomal dominant genetic condition caused by inherited variants in mismatch repair genes including MLH1, MSH2, MSH6 and PMS2, according to NHS England guidance. Each child and sibling of an affected individual has a 50 per cent chance of inheriting the condition. The syndrome does not directly cause cancer but leads to genetic mutations that run in families and can make disease more likely at a younger age.
Approximately 175,000 people in England are estimated to have Lynch syndrome, yet only about 5 per cent are aware they carry it. Around 1,100 bowel cancers are caused by Lynch syndrome annually in England. The condition is often identified through tumour screening, after which a simple blood test can confirm the diagnosis.
How can people with Lynch syndrome reduce their cancer risk?
For those diagnosed with the condition, preventative measures can substantially lower cancer risk. William, now 26, explained how receiving his diagnosis empowered him to take action.
"Unfortunately, I tested positive for Lynch, but that's become a powerful tool for me. I'm now able to plan preventative measures, like taking aspirin. I'm on the colonoscopy programme, so bi-annually I have a colonoscopy to make sure there's no polyps in my bowel. It's been really useful for me."
People with Lynch syndrome enrolled in NHS screening programmes are typically invited for colonoscopy surveillance every two years, with invitations usually beginning just after age 25 or 35 depending on which gene variant they carry. According to NHS England, screening prevents between 40 and 60 out of every 100 people with Lynch syndrome from developing bowel cancer. More than 12,000 people have already received additional bowel screening after being identified through the Lynch syndrome register, with the new National Inherited Cancer Predisposition Register being built on that pathway.
Why is family conversation about hereditary cancer so important?
Harjit's own family history illustrates why open discussion matters. His father died at age 62 in 1972, when far less was known about Lynch syndrome and genetic testing was unavailable.
"It might explain why my father died much younger. Family never talked about it. I'm sure culture played a part in it - but no, nothing. Had they, things could have changed."
When Harjit received his own diagnosis, his mother was present but deeply affected.
"As much as my mum has pioneered everything, she broke down. She didn't want to have given this to me. However, you've got to understand from our perspective, it can't be helped. The knowledge now is what's so important."
Harjit, a nurse, emphasised the critical importance of families understanding their health history and discussing hereditary cancer risks openly. William added that
"if people can have those open and honest conversations you can actually make a difference to your future by doing so."
What future developments are being explored?
Professor Julian Barwell, consultant in clinical genetics at the University Hospitals of Leicester NHS Trust and Honorary Professor in genomic medicine at the University of Leicester, highlighted emerging treatments.
"It's important for people to be able to have conversations about cancer running in their families. There are so many things that we can do now to help support and protect families and keep them together for longer. But it starts with you having that conversation and taking that first step."
Barwell revealed that vaccine development is underway to protect people with Lynch syndrome from tumour development.
"There are groups looking to develop vaccines against Lynch syndrome tumours. We are hopeful within the next generation, we will be able to offer vaccines to people with Lynch syndrome, to reduce the risk of them actually developing a tumour in the first place."
What happens next for people with inherited cancer risk?
The NHS bowel cancer screening programme continues to expand identification and support for people with Lynch syndrome. Those identified through tumour testing are offered routine preventative screening, with invitations for colonoscopy surveillance typically beginning in the mid-20s to mid-30s depending on the specific gene variant involved. The new National Inherited Cancer Predisposition Register is intended to expand routine preventative checks to more people with inherited cancer risk beyond Lynch syndrome.
Harjit concluded by emphasising the value of sharing experiences:
"It's really, really important that we should talk. We are here because we have Lynch syndrome and we want to make a difference. If it changes the lives of one person - saves a family - then I think that's key at the end of the day, so [we are] happy to share our story."
Key Facts
- Lynch syndrome affects approximately 175,000 people in England, but only 5 per cent know they have it
- Each child of an affected parent has a 50 per cent chance of inheriting the condition
- Regular colonoscopy screening prevents bowel cancer in 40-60 out of every 100 people with Lynch syndrome
- Vaccines to protect against Lynch syndrome tumours are in development and may be available within the next generation
- Genetic testing through the NHS can identify Lynch syndrome after tumour screening flags a possible inherited cancer syndrome
