Cambridge resident raises awareness of inherited genetic mutation that raises risk of cancer
Jenny Broadway hosted a gin tasting evening to highlight significance of Lynch Syndrome
Cambridge resident Jenny Broadway raised the awareness of a deadly gene mutation that has devastated families by hosting a successful gin tasting evening at a Cambridge pub.
The event at the Architect pub, raised more than £100 towards highlighting the dangers of Lynch Syndrome (LS).
Approximately 175,000 people in the UK suffer with the syndrome and 95 per cent of these don’t know they have it. It is hoped that by checking all patients who have bowel cancer for LS, many new families will be identified for screening and early treatment that will prevent them developing cancer. People with LS also have a 50 per cent chance of passing on the gene mutation to their children.
Jenny, 53, who works in the social anthropology department at Cambridge University, is one of the lucky ones. Her parents raised four children and two of them, including Jenny, discovered they had the gene mismatch and two didn’t. But if it hadn’t been for the intervention of her cousins, Alison and Jackie, Jenny is unlikely to have survived.
It has been a difficult journey but one she is openly prepared to speak about in the hope that it prompts other families to get screened and, more importantly, help to save them from the kind of suffering her family endured.
Jenny explained: “My grandfather died of stomach cancer and my father had bowel cancer. One of my cousins also had stomach cancer, and the other had endometrial cancer. All this while they were in their 40s.
“That set them on a path to get the family genetically tested and it turned out that we had this mismatch repair gene.
“There are a number of mismatch repair genes but they all come under the umbrella of LS. Out of four children, we discovered two of us had it and two of us didn’t. I was one of the two with it, which I found out in 2012. Through the subsequent screening, I was diagnosed with an early stage of endometrial cancer and had a full hysterectomy. I just feel so fortunate that my cousins got their genes tested.
“Without knowing about it, my sister would have died. She found out on her first screening that she had a tumour, a cancerous polyp and two other polyps which were not yet cancerous.
“So, her large intestine was taken out and she underwent a hysterectomy at the same time. She had no symptoms whatsoever to suggest she had bowel cancer. It would have killed her because she didn’t have any symptoms.
“I consider myself really fortunate. Although I have got the gene and have a high likelihood of getting cancer, the screening is really good. The gene is the mismatch repair one, so it is checking for spelling errors when your DNA replicates, but it is faulty when doing the checking.”
Jenny now finds herself in another worrying situation as her daughter and son are about to be tested.
She added: “In some ways for my daughter Phoebe it is more critical. She will have to make life decisions about having children because you reduce your cancer risk by having a full hysterectomy. There is a 60 per cent risk of getting endometrial cancer with LS. It is not entirely in her control when she has children, so there are all sorts of complex decisions that she will have to make.”
Despite all that life has thrown at her, Jenny is determined to enjoy every moment, hence the gin evening, and wants Cambridge people to learn about the gene mutation before it is too late.
She added: “For me, death is part of life, I don’t want to die yet, I’ve got children, Ben, 21, Phoebe 19 and Samuel, 14, and I have a faith, I believe in God and when my time is up, my time is up.
“I am also going to enjoy life and live it well. None of us know how long we have got. I don’t want to go and swim with dolphins but what I do want to do in life is enjoy what there is to enjoy; the simple things like the spring, the sunshine, the flowers and a beautiful city.”
But she doesn’t shun the memory of the dark moments that have been encountered during the journey.
She added: “Most mothers find, when you have children, you get such a wonderful support network around you. My friends have been fantastic because I have had times when I have struggled with depression.
“My friends have stuck by me and been there. It is always my family and friends who lift me out of depression. My friends are very dear to me. When my younger sister had the awful cancer, my dad died and I was diagnosed with endometrial cancer.
“My sister had the surgery but then had six months of chemo. As an older sister I felt as if I couldn’t do anything to protect her or make it better. It was that kind of helplessness. It was just too much in the space of six months, it all got on top of me.”
However, today she is looking forward to channelling her efforts into raising awareness of LS and she urges anyone with a family history of cancers to ask for genetic testing.
LS was named after Henry T Lynch, the American physician who discovered familial susceptibility to certain kinds of cancer. He is affectionately known as ‘the father of hereditary cancer detection and prevention’ and at the age of 90 is still working on it. Lynch Syndrome UK is the only charity working tirelessly in the UK to educate not only those with LS but also raising awareness among medical professionals and the public.
Funds raised through events such as the gin tasting evening are spent on education and learning for people with LS.
To find out more about LS, visit the charity’s website at lynch-syndrome-uk.org.