Lynch Syndrome Awareness Day 2025: Jane’s journey
Saturday 22 March 2025
To mark Lynch Syndrome Awareness Day, we sat down to chat with Jane Ashford, one of our supporters. We reflected on her Lynch syndrome journey, the power of community, and the past and present of Lynch syndrome care.
This is a genetic condition that increases a person’s risk of developing bowel and other cancers. Testing and care for this condition has improved a lot in recent years. Now almost all bowel cancer patients are tested for Lynch syndrome. This is because of the work of dedicated clinicians, policymakers and patients to make this happen.
But things were very different when Jane’s journey began ten years ago.
The importance of testing for Lynch syndrome
As an NHS Lead Nurse, Jane understood that cancer can occur due to variations in a person’s genes. She also knew that her family history of ovarian cancer meant she may carry one such variant.
Initially, Jane was tested for BRCA, a genetic variant that increases a person’s risk of developing breast, ovarian, and other cancers. It came back negative, meaning she didn’t have this variant. Jane persisted, spending a year pushing for a referral to genetics until she finally got an appointment in 2015.
After reviewing her family history, Jane’s consultant suggested that she may have Lynch syndrome.
“At the time, I’d never even heard about Lynch syndrome, and I had been a nurse for 25 years”.
More tests were required to confirm a diagnosis of Lynch syndrome, so Jane was referred for bowel cancer screening. In late 2015 Jane had her first colonoscopy. Despite showing no symptoms, a precancerous polyp was detected. Given her family history, Jane’s surgeon advised removing a part of her bowel as a precaution.
The surgery was a success. Afterwards, they learnt that the polyp had become cancerous, but it was caught early so no further treatment was needed. It also led to genetic testing which confirmed that she had Lynch syndrome.
“It all came at once. I dealt with a cancer diagnosis and a Lynch syndrome diagnosis within a matter of a week…it was a lot to process”.
For Jane, like everyone affected by Lynch syndrome, her diagnosis meant that her family should also get tested. Jane knew this was important because Lynch syndrome is inherited, so close relatives may also have the condition.
“Knowledge is very powerful”, she says, “if you know about having Lynch then you can understand the risks and get screened regularly. It was hard for my brother because he had children, so not only did he have to be tested, but you’ve got to get them tested as well”.
After some difficult conversations, they agreed to it. Frustratingly, it would take another year of asking before Jane’s brother and family were finally tested.
The power of community
Jane continued to experience symptoms throughout 2016. In October, a follow-up colonoscopy found two more polyps, one of which was cancerous. In December she underwent another surgery to remove the rest of her colon.
Sadly, in 2017, Jane was diagnosed with bowel cancer again. This time, it was stage four. “I was given a really poor prognosis. Everything just spread so quickly”.
Jane underwent several treatments over the coming years, including chemotherapy, immunotherapy, and maintenance treatment, some which caused serious side-effects.
She turned to the internet for help. One day, she found a post on the Bowel Cancer UK forums from another person experiencing the same side effects. They started talking, and Jane felt an instant connection. “She gave me the most amazing support. The online forums are unique. The support I got, the knowledge, the empowerment from other people with cancer, it was phenomenal.”
By 2018 Jane had become a regular contributor to the charity, setting up the immunotherapy support group, moderating the forums and volunteering at events. She got involved with our policy work too, providing her voice wherever she could. All whilst navigating stage four bowel cancer.
Things are improving, but there’s more work to be done
Fast forward to 2025 and despite all the challenges she’s faced, one thing has stayed the same: Jane’s unwavering commitment to supporting us. A lot has changed in Lynch syndrome care, however.
As our report ‘Finding the missing 95%’ showed, over 90% of newly diagnosed bowel cancer patients across the UK were tested for Lynch syndrome in 2023, a significant increase from our 2018 report.
“The treatment has really evolved. It’s become more personalised, which is fantastic”.
As well as this, NHS England’s decision to offer Lynch syndrome patients regular, high-quality surveillance colonoscopies through the Bowel Cancer Screening Programme was a huge step forward for managing people affected by the condition and increasing early diagnosis.
These changes are the result of the amazing work of people like Jane, clinicians and everyone else who has invested so much of their own time and energy to improving Lynch syndrome care.
However, there is still work to do:
- Waiting times for genetic appointments continue to vary across the UK
- Only half of UK health authorities currently send referral letters to at-risk family members for genetic testing. This means Lynch syndrome remains underdiagnosed
- There are no national Lynch syndrome registries in Wales, Scotland or Northern Ireland, so getting timely surveillance colonoscopies remains a postcode lottery
We will continue to campaign on these issues over the coming years, working together with our community, clinicians and other partners to ensure that everyone affected by Lynch syndrome feels supported in their journey, and has access to the best testing, treatment, and care available.
