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 first part of our two-part special on colorectal cancer. The second part can be found here.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
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Hello Steve, and welcome to the Waiting Room podcast. First of all, please tell us a bit about yourself and your patient journey in terms of colorectal cancer.
Well, yes, I was diagnosed when I was 60. In fact, I was diagnosed the week before I was 60, with colon cancer, and that was in 2015. It came out of the blue, didn’t know anybody with cancer, let alone colon cancer. And I didn’t know there was any problem in the family or anything like that. And I was diagnosed stage, well, after surgery they staged it, stage 3c. So that was quite extensive local spread in the lymph nodes and also in the blood vessels. And then I had chemotherapy, 12 cycles of FOLFOX, and then you’re left to get on with trying to work out how to live with that. So, I felt perfectly fit and well when I actually had the cancer. But after the treatment, you know, you’re pretty wrecked. And so, yes, so that was me.
But my brother Damon, I had at the time three brothers, and each of them then, they were in their fifties. And I said to each of them: “You know, get checked!”, and my brother Damon had symptoms, but it took two years to convince the doctor to refer him. And when they did, he was stage 4 and died within six months. So, there was a big issue there. The doctor wouldn’t refer him because he was too young. He was under 60, and 60 was the start of the screening age. So, it couldn’t be cancer, could it? That got me very interested in it. And since then I’ve discovered that we have a family propensity. There’s a genetic element to it, but we’re not Lynch syndrome, so there isn’t a test for it. But the wider family knows about it.
I had no idea my grandmother died of it, or her sister or my aunt, because that generation, those generations, they just didn’t talk about it, you know. They wouldn’t have talked about anything like that. We only found out by actually getting the death certificates, and there you get the detail. So, that’s how I ended up getting very involved in understanding it. Once I understood it, then I got more involved in the actual, various methods to help improve the situation.
Speaking of which, colorectal cancer is a topic that runs in my family too, or rather my wife’s family. So, it’s close to my heart. And you mentioned getting more involved. Could you please us tell us a bit more about your task as the patient advisor for Digestive Cancers Europe, for example?
Okay. So, I’m a member of the Patient Advisory Council, the PAC. We advise the Board of Digestive Cancers Europe, which is very patient-focused and campaigns really at all levels, but particularly at government levels, to improve the lot for people with colon cancer or to help prevent or to improve screening. DiCE, or Digestive Cancers Europe, does a lot of advocating on cancer at all levels and particularly government level to improve the lot for people affected by colon cancer. So, that’s encouraging countries to implement screening programs and to make sure people have the best kind of access to the treatments.
It’s a very broad scope that Digestive Cancers works on. And also, the organization is an interface between companies and patients. So, often we get requests coming in to, you know, looking for people who will be able to participate in drug trials and the like, design of trials, which I’ve been doing, and surveys. Yeah, all kinds of stuff. It’s a very broad remit. We get involved not just in advising the board, you know, we get involved in it in a lot of different ways. And there’s masterclasses that DiCE runs and also summits; an annual summit on screening, for instance.
I’ve come across a statement by the International Agency for Research on Cancer that they estimate that the global burden of colorectal cancer will increase by 56% between 2020 and 2040. What are your thoughts on this?
I think it’s an underestimate. Colorectal cancer is primarily an aging disease. So, it happens because our DNA gets older. And as you get older, your DNA gets older, your cancer protection systems in your cells get older as well. And you just get more and more risk of cancer as the age goes up. When you look at the curve, it’s a classic exponential growth. It starts off quite slow and it curves up and then it ramps up and it, currently in the UK, peaks around 75 and then it drops off. That’s because there’s less people, they die of other things. But if we lived to 140, we’d all get it.
It happens because the lining of the gut is the part of the body which is replacing itself most frequently and most quickly. It replaces itself every six days. And that means there’s more cell replication going on there than anywhere else in the body. That’s why there’s more risk of errors in copying. And if you’ve got any problems with, you know, short telomeres in your genes, you’ve got more risk of mutations that will cause cancer.
So, worldwide, particularly in developing countries, as their health systems improve and they get older, you know, their age profile, demographic in the country increases and people live longer, then more people will get colorectal cancer. You know, it’s a simple thing. Sub-Saharan Africa, and they don’t know what’s hit them yet. A lot of the countries don’t have much in the way of cancer programs and no screening. But that is because the people generally die younger, and that’s going to change.
Please tell us more about the importance of screening and especially cancer screening programs.
Well, in the UK, if you go back 20, 25 years, most people who were diagnosed with colon cancer died of colon cancer because they would be diagnosed at the stage 4. It’s already advanced because they would go to the doctor with symptoms. And if you’re getting the symptoms, probably it’s already quite late-stage. It certainly was with me. I had symptoms, and I was in stage 3. Stage 3c. The most common colon cancers are very slow-growing. The doctor said, I’ve probably had my, my cancer probably started at least ten years before and maybe up to 15 years before. And it takes a long time. It grows as a polyp inside the gut and it doesn’t spread until it gets to a particular size and stage and whilst it’s growing, it’s giving no symptoms whatsoever.
And so screening is vital to be able to pick up colon cancers at that early stage, and then something can be done about them and you stand a good chance of recovery. So, the survival rate was less than, I think, less than 10%. And then in the noughties, screening was introduced using the fecal occult blood test. And then more recently, the FIT test, which is the fecal immunochemical test, which is much more specific and sensitive. But, it’s turned it around completely. Now your survival rate is getting on for 70%, and that’s entirely down to screening. Screening picks it up earlier than you would pick up any symptoms. It’s very important. If you look at other cancers like pancreatic cancer, the symptoms are very difficult to pick up there. And so, pancreatic cancer has a notoriously low survival rate.
In your role as a patient adviser, did you speak to a lot of people that didn’t get their cancer screening done due to COVID and being afraid to go to a GP or to a clinic?
COVID had a massive impact, and I started a cancer support group for colorectal cancer. Just before COVID, the membership of this group was very low, maybe 30 members, 40 members, something like this, until October, oh no, September. And suddenly it rocketed up when the colonoscopies started happening again. And we had a massive peak, which went very high and has now settled to a steady climb of 50 new members a week.
So, there was a big backlog there. And undoubtedly people, because of the issue during COVID, they will have had late diagnoses. Yeah, and that’s the issue. There were very sad cases of people who, because of COVID, couldn’t get the treatments they needed. And they progressed from stage 3 to stage 4 and died as a result. And so, COVID did have an impact on that, yes.
Among the risk factors for colorectal cancers are, for example, obesity, tobacco smoking and alcohol consumption. Which role does stigmatization play in this regard? Or did you encounter any kind of stigmatization?
I think generally, well, it is quite interesting. So, obviously we see different cultures. There are some cultures which will quite openly talk about bowels and other cultures which just will not. And for instance, certain parts of the Asian community in the UK, I will rarely hear from the ladies in that community with the disease, but I will hear from their sons talking on their behalf. And they tell me that their mothers would not go to the doctor. They wouldn’t go to the doctor about anything below the waist.
Because they feel ashamed.
Ashamed. And it’s to do with that culture, their age. Younger women in that same community – no problem. And there has been some work done on this. The projects I’m working on are really to do with: “How do we increase screening uptake in those communities?” And there’s quite a lot of issues in some African communities around this. So, it’s a real problem and something they’ve got to address as the age demographic profile changes in those countries. They’ve got to get more aware, you know, so they’ve got to address that on quite a scale.
What else can or rather needs to be done? This is, what are the unmet needs of those living with colorectal cancer? For example, what about healthy lifestyle habits and physical activity?
Right. I’m just working on some material to do with screening policy in the UK. And I was reviewing one of the documents and I thought, this document is looking at how we implement a screening program. But you can’t separate it from prevention. And that’s something that’s become clear to me now. I’m part of an international group of patient advocates and scholar activists. In that group we’re always talking about the big picture, that prevention is so important. And you can’t talk about a screening and a cancer awareness program without actually including prevention as well.
So, we do know lifestyle factors are important. You look at some of the things. Obviously, smoking. There’s been enormous work done on that because smoking affects so many cancers, increases the risk in so may cancers. We know alcohol increases it. Processed meat increases risk of colon cancer. But being overweight and obesity, not just obesity, just being overweight is also a significant factor in not just colon cancer but in lots of cancers and also type 2 diabetes. And they are really down to lifestyle factors about diet and exercise.
These are significant things which a lot of people just don’t realize. They think they’ve got a weight problem, and their biggest concern is how it makes them look, you know, the esthetic aspects. We’re really trying to get across the message that being overweight is a significant risk to your life, to your health. And, if we could change those… There are also pieces of research that show that if you do get cancer, you know, colon cancer. We’re only talking about a risk; it’s a risk factor. Smoking, alcohol, obesity, processed meat – they don’t cause the cancer, they increase your risk.
Having a higher risk, if you can reduce your risk, that is a significant factor. But also, if you do get cancer because there is a random element to this, that’s what we call sporadic cancer. You can have the healthiest lifestyle going, but you can still get it just because of the nature of the aging of DNA. That by having good lifestyle factors, healthy diet, good exercise regime within the right optimal weight for your height and like, that it improves your chances of recovery and reduces the risk of recurrence. So, right from beginning right through to post cancer, healthy lifestyles are a significant factor.
Thank you for your insights, Steve. Please stay tuned for the second part of this special, which will be published shortly.