Lynch Syndrome Awareness Day: 22 March 2024

Lynch Syndrome is one of the most common genetic conditions, but 95% of people don’t know they have it.

Tracy was diagnosed with bowel cancer and although not much was known about Lynch Syndrome then, her oncologist suspected something wasn’t right and suggested she was screened for Lynch Syndrome.

The test revealed Tracy had Lynch Syndrome which then triggered tests for her whole family. Subsequently all three of her siblings, and all her Aunts & Uncles on her Dad’s side have also been diagnosed. Unfortunately, the knowledge came too late for her youngest sister and cousin who died aged 23 and 20.

“That decision to get tested opened a giant can of worms, but it helped to prevent further losses in our family. Knowledge has given us power.”

Since Tracy’s diagnosis, NICE guidelines now recommend that everyone with endometrial or colorectal cancer should automatically be screened for Lynch Syndrome. Tracy, along with six of her fellow patients, set up Lynch Syndrome UK to raise awareness of the condition. Together they have worked with the NHS to establish a screening programme for Lynch across the country.

Today marks Lynch Syndrome Awareness Day and the NHS is celebrating. 95% of all endometrial and bowel cancer patients now get screened for Lynch which wasn’t the case four years ago.

“All of my family are now super aware and listen to their bodies. My auntie (we call her Auntie Nine Lives) has had cancer in her bowel, kidney, skin & bladder. All of them are related to Lynch, but all were picked up early thanks to her Lynch diagnosis and the regular scans offered to her.”

Tracey tells everyone she knows about Lynch Syndrome and has no plans to stop now.

“When I was diagnosed, my GP had never come across another Lynch patient before. I explained to him what it meant and since then he has learnt more. His new knowledge has now helped other patients. That’s why I do it.”

Up to 300,000 people are thought to have Lynch Syndrome in the UK right now, but 95% of them don’t know they have it.

Everyone who is diagnosed with bowel or endometrial cancer should be offered genetic testing for Lynch Syndrome as part of a national NHS programme.

A genetic diagnosis of Lynch means that doctors can treat your cancer more effectively, but it also means your family can access genetic testing for Lynch Syndrome to help prevent cancer in them.

Lynch Syndrome can increase your risk of developing cancer to 80% over your lifetime. The genetic change seen in Lynch can lead to more abnormal cells developing which then multiply and become cancerous.

Andrea was 37 when she discovered that she too had Lynch Syndrome. Around the same time her Mum was diagnosed with kidney cancer and had to have a kidney removed.

“I was terrified and I knew I didn’t want to go through what Mum was dealing with. I thought is Mum’s story, now my story?”

Andrea’s diagnosis means that she now gets regular screening for bowel cancer, which should pick up any changes early on, but not all cancers can be picked up with screening. She’s also been taking aspirin every day to further reduce her risk of cancer.

Now in her forties, Andrea has decided to have a preventative hysterectomy to further reduce her risk. Her surgery was completed robotically and she should be back at work as a hairdresser and singing with her band within a month.

“I’m chuffed to bits that I can avoid many of the issues that Mum has had to deal with. I can’t get ovarian or womb cancer now and I’ll carry on with my regular bowel screening. I’m doing what I can to protect myself. Mum didn’t have the same chance.”

Up to 300,000 people are thought to have Lynch Syndrome in the UK right now, but only 95% of them know they have it.

Everyone who is diagnosed with bowel or endometrial cancer should be offered genetic testing for Lynch Syndrome as part of a national NHS programme.

A genetic diagnosis of Lynch means that doctors can treat your cancer more effectively, but it also means your family can access genetic testing for Lynch Syndrome to help prevent cancer in them.

Lynch Syndrome can increase your risk of developing cancer to 80% over your lifetime. The genetic change seen in Lynch can lead to more abnormal cells developing which then multiply and become cancerous.

Lynch is one of the most common genetic conditions with one in 350 people having the genetic change that causes it. “That’s about 25 for every GP practice, but 95% of people don’t know they have it.”

“We thought the breakthrough came in 2017, when new NICE guidelines recommended all bowel cancer patients should be screened for Lynch Syndrome.”

But in 2019 this was still only happening for 40% of patients. Adam is now part of a national team who are working to turn the Lynch dream into reality. Together they are supporting individual NHS Trusts to establish their own Lynch screening.

Adam is very clear about the benefits of a national Lynch screening.

1. Screening gives us the one chance to prevent future cancers. Don’t miss this chance to put prevention in place.
2. Look at the whole patient – not just the tumour in front of you. Whilst it is of course important to treat people for the cancer they have right now, it is equally important for the patient, and their families, to prevent future cancers.
3. Don’t be scared of genetics. Everyone can do genetics. We can help you to learn and set up your own testing. It’s much quicker for you and your patients.

The team have successfully supported many NHS Trusts to establish their own screening for Lynch Syndrome. These new pathways are offering clear benefits for both patients as well as the medical teams. Clinical Geneticists, such as Adam, remain on hand to support patients once they have a Lynch diagnosis as well as organising testing for their families. There is also a dedicated Lynch nurse in every region offering training, education and support.

“A Lynch diagnosis can open up new treatment options for your patients such as immunotherapy. By delivering Lynch screening in your own Trust you will reduce the waiting time, be able to treat your patient more effectively and prevent future cancers. The dream can be a reality.”