For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. Stephen also helps to organize cancer rehabilitation services and founded the national Bowel Cancer Support Group UK. Furthermore, apart from having played a role in the development of the internet and internet security, he is an interdisciplinary scientist, active musician, visual artist and keen sailor.
In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer.
This is the second part of our two-part special on colorectal cancer. You can find the first part here.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.
During the answer to my first question you mentioned your treatment regimen. Do you know of any new treatment modalities or approaches that are currently being implemented or which are on the horizon?
Yes, there’s always a lot going on. Colorectal cancer doesn’t get the attention that breast cancer gets. I mean, when you look at the difference in research expenditure on breast cancer, it’s many times any other cancer or all the other cancers put together. But, you know, colon cancer is the second biggest cancer killer in the UK. And it’s an area of research and of interest to pharmaceutical companies and research organizations. So, there is a lot of research going on all the time. And some of these are coming through as treatments.
Just recently there’s been the results of a trial which showed that for many colon cancers, it would be better to treat with the chemotherapy before the surgery. Traditionally, you have surgery, recover from that and then you have the chemotherapy. They saw better outcomes by having the chemotherapy first, because from point of diagnosis to your surgery, which might be a month, six weeks later, and then the recovery period, you might be talking about three months before you start chemotherapy, which if a small amount has escaped, not visible on the CT scan or anything like that, but it’s escaped, is already working in your liver or somewhere like that, then it’s had that time to grow three months.
Whereas if you go straight in with chemotherapy and reduce the risk of any escaped material before the surgery, you have better outcomes. But that said, the downside of that is that there will be many people who didn’t need chemotherapy who were then overtreated, and overtreatment is a big issue. You know, I had 12 cycles of FOLFOX. Who knows if the first 6 trial cycles did the job and the rest of the 6 just gave me the debilitating side effects.
But there are areas where we know that the treatments aren’t so effective. So, particularly with some biomarkers like KRAS and BRAF, these biomarkers are to do with genetic mutations in the genome of the patient. They reduce their ability to deal with cancer within their own cells, so they reduce the cell’s own cancer immunity systems, and they’ve been stubbornly hard to address in terms of treatments. But now the immunotherapy treatments, together with combined therapies, immune- and chemotherapy, are proving very effective, and significant changes have happened in rectal cancer. One particular mode, one particular type of rectal cancer, they’re getting 100% complete response by delivering this particular combination, and it completely destroys the cancer. No need for surgery; highly effective treatment.
And so that gives us hope that there’s many other immunotherapies coming down the line. Drug companies are busy at all that, and that’s changing the picture rapidly. There are still other, significant portions of the population who have biomarkers mutations which are not really showing any response. Fine if you are a low stage 3; the chemotherapy will probably deal with it. But if you are stage 4, with those biomarkers, there’s very little evidence that the chemotherapies will be effective.
I see. And which role can cancer rehabilitation play also based on your own experience after the treatment?
Well, there is a story [laughs]. So, after my treatment, I wasn’t offered any rehabilitation or anything and “Just get on and recover”. And it was slow, and one of the things I’ve loved in my life is sailing. And late in the summer, my brother took me for a sailing trip on a yacht, and we sailed along one of our favorite bits of the coast, the south coast of England. A sunny day, and I really enjoyed, there, leaning, looking out, at the rail with my hand on the tiller and I was just happy. Perfect weather. And I was on the tiller for about an hour, sitting in the same position. And at the end of the day, my shoulder hurt, and a week later it still hurt. And two months later, no sign of any improvement. So, I went to the physiotherapist and the physiotherapist: “Why aren’t you on the cancer rehabilitation course?” And I said: “Nobody told me about it”, and basically nobody told me about it because nobody at the hospital knew about it. So I got myself referred on to it and went along, and I was the only person in. I had a rehabilitation instructor and me one-on-one for about two months before anybody else turned up.
So, I helped organize to get them organized to make this rehabilitation program visible on the Internet so that the health professionals could find it, and then we could promote it to health professionals, and patients would find it and self-refer. There’s no reason why they need to go through a referral process. And then that helped to expand the program. And that class I go to now regularly has about 30 people going to it weekly. It’s a weekly circuit. If you go to the gym you might be familiar with circuits. Well, these are circuits designed for rehabilitation, and the instructors are trained through a program called CanRehab. So that saved me, really, because what I hadn’t realized is that a significant impact of chemotherapy is cachexia.
Now, cachexia is muscle loss, and you lose muscle fibers basically because certain chemotherapies affect the, it’s called peripheral neuropathy, and it kills the nerve endings. Most people recognize this through tingling in the fingers and reduced sensitivity to touch, and that’s your sensory fibers, but it also affects the motor fibers as well. Your muscles are basically, if they don’t get a signal, that fiber fades away and you lose muscle. And that’s what happened to my shoulder, that I was doing an ordinary job that I would have done the year before without any problem, that I was doing it with only half the muscle and strained those muscles.
So, what’s been shown is that in terms of rehabilitation, the most important thing is resistance exercises to improve your remaining muscle fibers so that you can get them healthier, stronger and help take up the load to replace the ones that have been lost. You can’t grow new fibers. You can just optimize the ones you’ve got. So, and then COVID came and that wiped out the program, really. A few ones locally continued on Zoom, but a lot of them disappeared. And now we’re in the stage of rebuilding that. And, of course, all the funding went away as well. So, now we’re looking for ways of making it self-funding and the like.
I believe everybody who’s been diagnosed with cancer should have access to rehabilitation because it’s not just about cachexia. You might not have cachexia, but chemotherapy or even just the surgery has an effect on your whole system, and you need to rebuild confidence as much as anything. Getting out there and physically being more confident, quite apart from the other significant effect, is that a cancer rehabilitation class is a social event and you’re with other people who get it, who understand. And that can be an amazing thing for anybody anyway in that situation. So, this helps your mental health as well as your physical health.
I suspect there’s quite a bit of loneliness attached to such a diagnosis apart from being supported by your family. But getting together and meeting, well, equal-minded or equally affected people definitely helps, I guess.
Yeah, and cancer disproportionately affects older people. Quite often they’re single because they’re of an age where their life partner has died. And so, they’re often single. They’re coping with it on their own. And this gives them a community, a community of friends. A lot of our sessions, we’ll go for coffee afterwards, and we might be at coffee for longer than we are in the rehabilitation session [laughs]. But it really helps, and people get help, lifts going to treatment or things like that because getting involved in rehab, I very quickly discovered about prehab. And back in those days, prehab really wasn’t much talked about, but there was increasing evidence that, as soon as you were diagnosed, if you go on an exercise regime, an improved eating diet regime, it makes you fitter. As one consultant put it to me, it’s a no-brainer. The outcome of a program of treatment is often dependent upon the fitness of the person going into it; that if your health is poor, then you might not survive the treatment.
So, there’s real benefit from a medical perspective in being fitter in that you’re more likely to find treatment. But also people who undergo prehab recover more quickly and recover to a higher level than those who don’t. That’s a significant effect longer-term because chemotherapy and immunotherapy are very damaging. But I think the biggest area of benefit is in the psychological area. The moment you’re diagnosed with cancer, for most people, you are handing yourself over, you lose control completely. You hand yourself over to the medical professionals who say: “You’ve got cancer. You know, go home, get on with your life until we send you the information for your operation or your treatments begin.” And a lot of people, anxiety levels go through the roof, and they’re very fearful. There is nothing positive, and there’s nothing they can do. You know, they are entirely dependent on the process of the of the medical system, health care system.
But imagine a different situation where: “You’ve got cancer. We’re going to put together a treatment plan for you. This is what you can be doing that’s going to help you respond to the treatment better, improve your chances of recovery, lower your risk of recurrence.” You know, that’s something you can do. And so prehab programs typically involve exercise, getting you as fit as possible; diet, particularly reducing weight for people who are overweight, but a healthy diet as well; and sleep. Understanding how best to get a good night’s sleep because if you’re not sleeping well, then that affects your physical health significantly, but also the issues around anxiety and things which grow in the night.
And then your mental health generally. So, if you’re managing your thoughts; because a cancer diagnosis, for a lot of people, they think cancer is a death sentence, but actually isn’t. Most people survive these days. You’ve got to be a lot more realistic and be able to handle that and also know when and where to get help, if it’s affecting you. So, prehab is really, really a game changer, I think for people, it would have a significant effect. But again, it’s having difficulty getting rolled out and the consultants to know that it’s there. We’ve got a problem in a lot of the countries that people don’t get referred onto it because the consultants don’t realize the benefit it might have.
I see. And do people get the type of information from the support group you set up? The online support group, for example?
Yeah, absolutely. We really encourage people to seek prehab and rehab. Yes. And I believe that they should actually be the same thing. When somebody is diagnosed with cancer, they usually fit in well. There’s no reason why they can’t just go along to the existing rehab classes for the fitness side of things. So, but yes, they do need more advice. They need all that mental health and diet advice. It’s a very important thing for them to get that information. And typically they’re not getting it. So, there are online resources for prehab, and so we direct people to those. And there is one prehab group which will deliver those things online, one-to-one service. Those things are available. And I believe everybody should be offered prehab. Cancer diagnosis; right, you can help yourself. Start prehab now. Yeah. Start prehab the moment you leave this room.
Okay. Definitely makes sense. This actually leads to leads me to my last question of the interview, which is what are your plans for this year’s Colorectal Cancer Awareness Month or maybe what are Digestive Cancer Europe’s plans, since you’re involved with them, too.
Right. So, Digestive Cancers Europe, I guess they do have plans [laughs], but I should really get you the information on those because there’s basically a steps campaign that you do your steps for colon cancer and step up for colon cancer/colorectal cancer. But it’s different in the UK because Colorectal Cancer Awareness Month falls in March, and in the UK that is the month that Macmillan have their cancer support campaign. And nobody wants to be trying to pitch a fundraiser against Macmillan, you know [laughs]. And so, in the UK, we have Bowel Cancer Awareness Month in April, and so the Bowel Cancer UK run quite a big campaign during that period, which means that I usually get to do awareness speaking for Bowel Cancer UK, for different groups, and during that month I’m doing a lot of that.
But also, what we’re doing in my, so I set up a group for the Bowel Cancer Support Group UK and that is entirely people who’ve been affected by bowel cancer/colorectal cancer, and what we really like to do is just raise awareness through whatever means we do. And because we’re a social media-based thing, this is more about finding things that we can all share. We’ve got three and a half thousand members; they can share stuff and so we can develop messages that will get out there on cancer awareness. And definitely a big theme for us this year will be increasing uptake of screening. As screening age gets lower and lower, you just need to bring that on for people who’ve never really considered it. If you’re in your early fifties, you’ve never heard of it.
So, raising that awareness, but also there are quite a number of charities which we will be pointing to do for fundraising and the like. I’m involved in several cancer charities working on bowel cancer/colorectal cancer. Our main thing will be to increase awareness and fundraising through social media. And I know there’s this one coming up just at the end of this week; a woman wants to do something and she’s organized a concert, and there’ll be lot more of that kind of things. Fundraisers like that. I usually grow tomatoes, so I’m setting up my tomato seedlings over the next couple of weeks, and in April I will be selling tomato seedlings and in previous years I’ve usually raised about £2,000. So it’s an important thing.
During COVID, the cancer charities, a lot of charities, but cancer charities in particular, their income plummeted and they were absolutely decimated. They had to lose staff. I think, Bowel Cancer UK, their income dropped 75%, so that vastly changes what they can do. But gradually things are coming back up again now. We can do what we can to support them.
Which is good to hear. Excellent. Many thanks, Steve, for your time and for the interview. It’s been really enjoyable. I’ve learned quite a lot, and yeah, thank you.
Well, thank you. It’s good to have the opportunity to raise awareness.