Can I Butt In? Bowel Research UK and Cystic Fibrosis Trust team up for new podcast episode

In the podcast, Tonia, who has cystic fibrosis, speaks with Professor Daniel Peckham, professor of Respiratory Medicine at the University of Leeds and podcast host Sam Alexandra Rose, Patient and Public Involvement Manager at Bowel Research UK.

Though the risk of someone with CF developing bowel cancer is low, data from the UK CF Registry 2022 shows that people with CF are also five times more likely to develop bowel cancer than the general population, and this risk increases to 30 times more likely following a transplant.

Urgent research is needed to understand the cause of this increased risk, and is why the Trust  launched a fundraising appeal this year, aiming to raise £750,000 to help fund a new Strategic Research Centre. This new SRC will investigate the link between CF and bowel cancer and look to use existing drugs to reduce cancer risks. Preliminary research has found that this increased risk may be due to a faulty CF gene, increased inflammation in the body and bowels, and the use of high and low-fat diets to manage CF.

You can listen to the podcast here, or find the podcast anywhere you normally listen to podcasts.

On the podcast, Patient and Public Involvement Manager Sam asked: “Is it a factor as well that people with CF now are living longer and living healthier than they used to many years ago, and therefore cancer has become an even bigger issue, because, you know people are living longer and therefore seeing like more of these issues?”

Professor Daniel Peckham, an adult respiratory physician who conducts research into the gut microbiome and cancer replied: “What's really important is if you look at the actual number of cancers, they're very, very small. So you know, it's very important that people don’t get very worried about it. I think it is important to identify risks because if you identify risk, you can actually put tools into place to actually protect people.”

Professor Peckham was interviewed about CF and cancer here, and his study was explained by Dr Keith Brownlee here.

Tonia also speaks about having part of her small bowel and some lymph nodes removed due to fibromatosis. 

Tonia said: “It was in my late teens that they started to notice that some of my stool used to stick on the inside of my bowel. So I had a couple of colonoscopies… And then I had to have some prep, which for people who don't know with CF patients, you have to take certain preparations to enable you to empty your bowel, which is not very nice, but does the job to a certain extent. …Fast forward to when I'm much older, so 2020 just prior to that, I had a lot of bloatedness, couldn't eat foods without feeling quite full, feeling quite sick. And unfortunately, COVID interfered with all the plans that were meant to be happening to sort of investigate what was going on and eventually I had a scan which showed that I had a fibromatosis, but then we didn't know this at the time. We just sort of saw a mass and it was. It was then that I got quite nervous because I thought ohh, this could potentially be cancer.”

She then explains that fibromatosis is “a benign growth of soft tissue” and had “part of my small bowel removed, the actual mass itself, some lymph nodes and they discharged me from hospital. I had to wait for two weeks before the actual result came through so obviously in those two weeks I was panicking, thinking ohh what is the result going to be? And then when they actually told me that there was nothing to worry about, it was benign, that was it.”

Tonia shared her story about turning 50, motherhood, and Kaftrio with the blog. You can read more here. 

Find out more about bowel cancer and cystic fibrosis here