Mo's story

After being diagnosed with advanced bowel cancer, I was immediately put on a treatment plan to shrink the tumour so that I could have cancer surgery. I was speaking to a health practitioner and mentioned that my dad had passed away from bowel cancer when I was two years old. It was here that I first heard about Lynch syndrome – what I now know to be a type of inherited cancer syndrome associated with a genetic predisposition to different cancer types.

An appointment was booked with a consultant geneticist in March 2015 but had to be delayed due to me being hospitalised because of the impact of my treatment. However, in June that year, I was able to see the geneticist. Here, they asked about my family history of cancer, looked at my family tree and carried out a blood test to determine whether I had Lynch. It was then confirmed that I had Lynch, and that it was likely that it was passed down from my dad, and that my family would need to be tested too.

Absolutely nothing at all – I hadn’t heard of Lynch before my diagnosis, and I think that’s the case with a lot of people. I knew that my dad has passed away from bowel cancer but that was it. There was no testing available for my father back in the 70’s so I knew nothing about it.

Now I know so much more. I know that not only does it significantly increase the risk of developing bowel cancer, but that it can increase my risk of developing cancers of the stomach, pancreas, small bowel, ureter and renal pelvis, and that for women it can increase their risk of developing womb and ovarian cancer. I also know that knowledge is power – if you know that you have Lynch, you can be put on a screening programme so that any future cancer is detected early. 

My Lynch diagnosis of course didn’t just impact me – I knew I needed to speak to my family too as my mother and siblings needed to be tested. I wasn’t nervous about talking to my family, I just wanted to tell them as soon as possible so that they could take the necessary tests. I was open and honest with them about my cancer diagnosis, so it felt natural to be the same with my Lynch diagnosis. 

My family reacted to the news in exactly the way I thought – they just wanted to get the test done and out of the way and deal with whatever the outcome might be. They had already seen me experience eight months of cancer treatment before I found out I had Lynch, so they had seen the affect having cancer can have on a person first-hand, which made them even more eager to get tested.

Whilst researching more about the syndrome, I also came across the Lynch UK Facebook group - which had lots of advice on how to approach speaking to your family about their diagnosis, which I’m sure is helpful for people who might not know how to bring up the topic with those closest to them. 

The type of pathway you are put on after a diagnosis of Lynch depends on whether you have already had a cancer diagnosis. If a person tests positive for Lynch but hasn’t had a cancer diagnosis, then they would need to go on a high-risk pathway in case they develop cancers which are associated with the syndrome. They will be on a screening programme which includes regular tests and scoping.

If you already have cancer and are then diagnosed with Lynch, then your treatment pathway is likely to alter. This would have happened in my case, except I had to undergo immediate treatment before knowing whether I had Lynch as my cancer was so advanced, so that was prioritised. Now that my cancer is stable, I am on a screening pathway which means that every 18 months to two years I will have a sigmoidoscopy - a procedure which looks at the lower part of the large bowel to check for signs of cancer.

If I hadn’t found out that I had Lynch, I wouldn’t have been screened as regularly as I am now, so it’s so important that people are tested for Lynch.

In retrospect, I wish I had known that Lynch could have been passed down from my father, because I could have been put on a screening pathway from an early age before my cancer had developed. 

If you’re worried about a pattern of cancer in your family, then it’s important you speak to your GP. They might be able to reassure you or send you to a genetics specialist to investigate further.

If you have already been diagnosed with a cancer that is linked to Lynch, then you must ensure you get tested for Lynch. Not all GPs will know enough about Lynch, so it’s important you go to your appointment armed with all of the information possible and ask to be referred to a geneticist.

I wish I had known just how prevalent it is. 175,000 people are estimated to have Lynch in the UK, yet fewer than 5% are known. It’s crucial you are tested if you think you could have Lynch. 

I think that in recent times, the BRCA1 and BRCA2 gene mutation is something that people know a lot more about, due to high-profile celebrities such as Angelina Jolie revealing the fact that she had the mutation and talking about her experience, yet the same isn’t being done at the moment with Lynch – with few people understanding just how many people could be affected by this genetic condition.

It's so important that people understand the red flags – if members of your family have died at a young age from cancers that are associated with Lynch, or you have been diagnosed with one of these cancer types at a young age, then it is so important that you speak to your GP, who can refer you to a geneticist to understand your risk.

It might sound cliché, but knowledge really is power when it comes to Lynch syndrome. Know your risk, and ensure your family knows their risk too.