Joining me today is Chris Lewis, founder and CEO of Chris’s Cancer Community, an influential and impactful online community of cancer patients, recoverers, and those affected by cancer. The community has a significant online following (over 35k followers on twitter) and Chris has shared his unique and substantial knowledge on the daily experience of living with cancer with charities, government organisations and businesses both in the UK and internationally. HE is one of the most knowledgeable, insightful and honest campaigners I’ve met, and I’m delighted to chat with him today about the current state of cancer services in the UK and what members of his community are telling him about it. https://www.chris-cancercommunity.com @christheeagle1
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Clare Delmar
Hello and welcome to On Focus, brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided or even ignored. Prostate cancer is the most commonly diagnosed cancer amongst men in the UK and with this sombre fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Chris Lewis, founder and CEO of Chris’s Cancer Community, an influential and impactful online community of cancer patients, recoverers and those affected by cancer. The community has a significant online following, including over 35,000 followers on Twitter. And Chris has shared his unique and substantial knowledge on the daily experience of living with cancer, with charities, government organisations and businesses both in the UK and internationally. He is one of the most knowledgeable, insightful and honest campaigners I’ve met, and I’m delighted to chat with him today about the current state of cancer services in the UK and what members of his community are telling him about it. Chris, it’s so lovely to have you here. Thanks so much for joining me today.
Chris Lewis
Thanks for the invitation, Clare. These are important times for people with cancer, and so this is a very timely thing. Thank you.
Clare Delmar
Good, well, then, let’s just dive right in. We spoke well, it’s hard to believe it was a couple of years ago, didn’t we, at the kind of summer of the pandemic, and lots has changed. So I guess I would just kick off by asking you what you see is the key trends that you’ve observed through your engagement with patients since the pandemic.
Chris Lewis
So, in general, Clare, over that period, there are two trends that I see. So there are patients that I speak to daily that have been diagnosed pre-pandemic, and there are the ones that are being diagnosed since the pandemic. And those are two very different groups, actually. And I was obviously one diagnosed very much before the pandemic in 2007, and myself and others, most of us in that group actually feel grateful, if I can put it like that, for being diagnosed pre-pandemic. Because what I’m seeing now is that – not worse care, I can’t say that – much more pressured care is now coming to the people that are new to the cancer diagnosis after the pandemic. The services are stretched. By the way, I’m talking not just in the UK, I’m talking about globally as well, but specifically in the UK we all know the stories, and they’re not fairy stories, they are reality. People are struggling to get their appointments with GPs and that, for most people, is where their cancer journey actually starts. But more and more so now, that’s becoming A and E, which of course in itself is a very pressured environment. So it’s very difficult nowadays for people starting their cancer journey. That is the reality of it, Clare.
Clare Delmar
And do those with prostate cancer specifically show any particular trends. Any light you can share on that?
Chris Lewis
Yeah, what I’ve noticed, as you know, I speak from experience, actually, because I run a prostate support group and I’ve done that for eleven or twelve years. And so there is definitely a difference to what has happened since Covid came. For the group, we started doing Zoom meeting so that the group had somebody that they could refer to over that terrible period. But that was very challenging in more ways than one because we found the numbers dropped off quite considerably. Those that joined us on Zoom, most of them didn’t find it particularly appropriate for their needs. What they actually required is what we really know, of course, is face to face work. And of course that is something that’s been eroded since Covid everywhere you go. I just mentioned about the GP situation, which is getting very tough, but also the time spent in hospital with health professionals. I think a lot of them are getting less than they actually need. They’re getting the basics, of course they are. But there’s a lot more to a cancer diagnosis, and particularly a prostate cancer diagnosis, than just letters and odd emails. There’s a lot more involved there.
Clare Delmar
Are there any examples or stories of people you’ve engaged with around this that you might be able to share?
Chris Lewis
Look, we all need time. People who are sick need time. They want to feel that they can share their issues. And prostate cancer is one of those where the impact of various different treatments can be very different. There are surgery, there’s chemo, radiotherapy and so many different options that are available to some – some only have one option – but there are various different options with various different side effects and various different impacts which can last for life after prostate cancer. The big thing that I’m finding really, is that people are not having these things explained to them well enough. I think the days of being a passive patient are well and truly behind us now. You have to really stand up and fight for what you want to know and for your own health. Unfortunately, the people that are quiet and this is why I do the work that I do, because not everyone is like me and they’re not forward and they’re not speaking up. Most people, they have great respect for their doctors and surgeons. That’s fantastic. But time and money drive us all. And I can’t necessarily say that people always might get the treatment that they actually might require.
Clare Delmar
Yeah. And the discussions you have with members of your community often are aimed at just this point, aren’t they? So that you can actually help them kind of almost be their advocate.
Chris Lewis
Yes, particularly the group. That’s why the group that I do is once a month, and actually that’s the one thing that I’ve kept up since I started all my work. The rest of it is all my own work if you like. But this is one area where I volunteer, because actually, online it’s great, don’t get me wrong, and I could communicate globally, but actually, when I see what’s happening in my area, how the local GPs are dealing with things, how the local hospital are dealing with things, how the local health professionals are dealing with things, it makes it much more real.
Clare Delmar
Yeah.
Chris Lewis
When you’re talking to patients eyeball to eyeball and they’re telling us that they don’t want to push for a blood test, a PSA test, their doctor’s trying to put them off from it and that sort of thing you now.
Clare Delmar
Do you come across that a lot? I mean, do you feel that even at that primary care level, and you mentioned PSA and specific to prostate cancer screening, do you think that there’s more of that resistance to support men in that early …?
Chris Lewis
It’s a good question. In the ten years I’ve been doing it, it has improved. I have to say that. It has improved, but if I’m honest, it’s still not as good as it should be. We know PSA is not the test, there isn’t the test that exists for prostate cancer, but it certainly can be a good guide. And so many people have got genetic relationships where they’ve got their fathers and brothers and relatives that have had prostate cancer or breast cancer.
Clare Delmar
Yes.
Chris Lewis
And it’s so common, right?
Clare Delmar
Yeah, absolutely. You’re very interesting point, because I think, again, in the case of prostate cancer specifically, the UK has been such a centre of advancement, both in diagnostics, obviously, around imaging, and in more precision led treatments like focal therapy, which we’re involved with. Do you think patients appreciate this, that they’re actually in this sort of centre of innovation for their disease? And do you think that’s in any way something that would help them in sort of seeking more information or do you think it’s kind of less relevant?
Chris Lewis
Listen, progress in any cancer is absolutely relevant and we read a lot, particularly about prostate cancer, as you say. But if I’m honest with you, it doesn’t seem, when I read it, I like to read what’s going on and I like to see any possible progress. I don’t actually see that filtering down to the patients themselves, really. Nobody really talks about it. The patients themselves that I talk to, nobody really talks about that progress. I mean, everybody is concerned with what’s going on in their particular case, what is available to them. I don’t mean this in a horrible way, if you like, but what may or may not be coming down the track in five or ten years time, actually, is if no concern to the people that are struggling currently.
Clare Delmar
We often get patients coming to us who have obviously had a diagnosis and a treatment offering or treatment recommendation, and on the latter bit, the treatment recommendation, they’re worried, as you would expect, and then that’s, of course, motivated them to go online or to talk to their friends or to just to seek further information. And so some of them who come to us are pretty well versed in some of these advancements and they want to understand (a) why they haven’t been briefed on them, like back to a point you mentioned earlier. And then (b), how can they access them?
Chris Lewis
Yeah, I mean, the internet is a wonderful thing. It can not be sometimes in health. But you’re absolutely right, Clare. A lot of people do take to the internet and they read all sorts of things that actually, in many cases might not be appropriate for them anyway. There are so many different options now for prostate cancer, which is a great thing, but actually, we both know that not every treatment is available for everyone, and it’s not always suitable for everyone. For many, there are only literally one or two options, which are the basics, aren’t they? Either surgery or radiotherapy, chemotherapy or a combination of.
Clare Delmar
Yeah. And of course, again, without opening this conversation up deeper, but at that point, if they were screened earlier, then you could look at more options, couldn’t you? That, I think, is something we’re all trying to achieve, is early detection. And in which case, the earlier you identify a man’s prostate cancer, then the more options they tend to have in terms of treatments.
Chris Lewis
That applies across almost all tumour types, of course.
Clare Delmar
Yes
Chris Lewis
And you’re right, that’s another rabbit hole.
Clare Delmar
It is indeed. And I’m sure that’s something that comes up a lot in the conversations you have with your members. Again, what would you say, then, is the good news here? What do you see as the real good news in terms of cancer care, cancer diagnosis, cancer treatment?
Chris Lewis
General or prostate?
Clare Delmar
Well, obviously I think our listeners are interested in prostate cancer, but, yeah, please do inform it by your other experiences.
Chris Lewis
I wish I could say it was a lot of good news, actually, Clare, but my experience isn’t good news, and I’ve said this previously, that actually my experience of talking throughout to patients, to researchers, to clinicians, to CEOs, to most people involved in cancer, even politicians, right? Large charities, all of them. I can only say that the cancer world in general has regressed by approximately ten years, in my opinion.
Clare Delmar
Do you think that the pandemic was primarily responsible for that, or have there been other factors?
Chris Lewis
The pandemic was primarily responsible for that. But to be fair, cancer was, in my opinion, falling off the edge a little before the pandemic came along. No country was really as good as it should have been for the amount of money and time invested into cancer care or cancer research in general. Our success rates, inverted commas, whatever you want to define success as, is nothing in relative terms to the time and money invested into it. And basically now, of course, everything’s moved over to Covid. And of course now all the hospitals are blocked, there’s less money coming in, and cancer is no longer the priority it was. That is the reality that I see.
Clare Delmar
I mean, it certainly is the headlines, and that’s why I’m very interested in hearing your views, because you can obviously dig a lot deeper than what the average person reading the newspapers can see. And it’s interesting and quite sobering to hear you say this, that actually those headlines are not that far off the mark, I guess, is what you’re saying.
Chris Lewis
No, they’re not. They’re actually reality and they’re not. To be honest, I’m glad to see them, because unless we know what the problem really is, we can’t solve it. Right? So all this waffle that we’ve seen on health care, all these wondrous things, actually, I class that as like a thunderstorm, what you do, you get a lot of noise and a bit of lightning, but actually, sometimes it’s rare that the rain actually reaches the ground. And some of these sort of things that have been talked about in the media for some period of time, the actual reality is that before it reaches the man in the street, that’s you and I, there’s a lot of water to go under the bridge.
Clare Delmar
So Chris, what advice do you have for men who have recently been diagnosed with prostate cancer? Whatever… let’s not discuss what stage, but a guy comes to you, he’s heard about your community, and he says, Chris, what do you advise me to do?
Chris Lewis
Pre diagnosis or?
Clare Delmar
Well, I’m assuming somebody who maybe just recently had a diagnosis.
Chris Lewis
Okay. So my advice to anyone who’s had a diagnosis of any cancer is keep shaking the tree. Chase your GP. Don’t sit and wait for letters from the hospital. Chase the secretaries. Don’t wait for scans. Chase, chase, chase.
Clare Delmar
That requires lots and lots of energy, as I’m sure you well know.
Chris Lewis
Yes, it does. But to be honest, if we can’t be responsible for our own health, we can’t really expect others to be that way. That is the reality, Clare. Unfortunately. And that really is another reason why I do this work, because the days of the letters come in, the appointments come in, just naturally happening. Forget it. Most hospitals can’t even answer the phone properly. Just try and ring a hospital and see what you get. So I don’t think we’ve got much chance of curing cancer while we can’t even answer the phone.
Clare Delmar
But, I mean, you do find amongst your members that between you talking with them and them talking amongst themselves, that this can actually help to build a voice, build an advocacy role. Well, that is the good news, then, I guess, is people are taking a bit more control over their own care.
Chris Lewis
I’m glad you’ve pointed that out, actually, Clare. Because that is probably the key, actually. Thanks for pointing it out. What’s happened? Government. So I’m not just talking about our government. Right? I’m not party political. I’m not politics at all. I believe politics is a hindrance to actually achieving anything in the world. And this, unfortunately, very sadly applies to most other countries with massive cancer issues, which is most other countries. Ten years ago, everyone talked about how America was wonderful. You could get anything in America, of course you could if you had the money right, but actually, nowadays, the likes of you and I, basic people cannot get cancer care, even if you’re paying for it. Australia, America, Europe, Germany, France, Spain, all of them, they have all different systems to us. Whether you pay directly or you pay indirectly, cancer care is not on the priority list. That will not change for quite some time. And I personally believe it is the power of the patient that will have to change that. People affected by cancer. Let’s be honest, the numbers are now 50% of us in our lifetime will be directly. So if you use just the figures in the UK, just the figures in the UK, we have 60 million people here and 30 million of us will be affected by cancer. That’s frightening.
Clare Delmar
Indeed.
Chris Lewis
And so the fact that government are not bothered about it, the leadership of the NHS, they’re just so flaky that they are controlled by the government anyway, so they can’t do anything about it. GPs are under the same umbrella, they can’t do anything about it. So the only people that can change anything is the customer, the consumer, ie. The patient.
Clare Delmar
And that’s what your community really exists to support…
Chris Lewis
100% Clare.
Clare Delmar
…and to advocate for. I could talk with you about this for much longer, but I’m afraid our time is up and I think that’s a good note to end on. And our listeners can be directed through our programme notes to your community. And I hope that you do see more people coming through to seek the support that you give so generously. And I really want to thank you, Chris, for speaking with me today. It’s been very enlightening and quite sobering, but also quite informative. So thanks very much.
Chris Lewis
Thank you again. Thanks for inviting us, Clare. We’re all on the same side, aren’t we?
Clare Delmar
Absolutely.
Chris Lewis
We’re all links in that big cancer chain and we all just want to help people. So thank you very much for sharing my message too.
Clare Delmar
Absolutely. A transcript of this interview and links to Chris’s Cancer Community are available in the programme notes on our website, along with further information on diagnostics and treatment for prostate cancer and additional interviews and stories about living with prostate cancer, please visit www.thefocaltherapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening and from me, Clare Delmar, see you next time.