Spreading awareness about PSA screening for prostate cancer
Tony Collier, ambassador, awareness speaker and fundraiser for Prostate Cancer UK joins Clare to discuss his campaigns and the messages he wants every man and his loved ones to hear regarding prostate cancer.
In May 2017, while training for an ultra marathon, Tony was told that a groin strain was in fact prostate cancer that had spread to the pelvic bone and was working its way throughout his skeletal system. In his words, “a worst case prognosis of two years was a real shock but I was even more shocked when I discovered that if I’d requested a PSA blood test every year from age 50 I could have had curative treatment. If only I’d known! Now it’s my mission to make sure other men know.”
Engage further with Tony via his blog and on Twitter @ethansgrumps
Press play in the audio player below to hear the interview.
Please find below a written transcript of the interview, and call The Focal Therapy Clinic today to discuss your prostate cancer treatment options: 020-7036-8870.
Clare Delmar:
Hello and welcome to OnFocus 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 and almost never talked about. Prostate cancer is now the most commonly diagnosed cancer in the UK. And with this somber fact comes a multitude of challenges and opportunities. I’m Clare Delmar.
Joining me today is Tony Collier, ambassador, awareness speaker and fundraiser for Prostate Cancer UK. In May 2017 while training for an ultramarathon, Tony was told that a groin strain was in fact prostate cancer that had spread to the pelvic bone and was working its way throughout his skeletal system. In his words, “a worst case prognosis of two years was a real shock. But I was even more shocked when I discovered that if I had requested a PSA blood test every year from age 50, I could have had curative treatment if only I’d known. Now it’s my mission to make sure other men know.”
Tony is here to discuss his campaigns and the messages he wants all men and their loved ones to hear regarding prostate cancer. Tony, welcome and thank you so much for joining me today.
Tony Collier:
Hi, Clare. It’s great pleasure to be with you. From a rather dull, overcast, wet Manchester, UK.
Clare Delmar:
Yes, actually pouring rain here in London. So I think you’ve got the better deal. So, Tony, let’s just start off. I mean, I introduced a little bit about who you are, obviously, and some real highlights about the fact that you were (still are?) a keen runner. I mean, earlier on, you’ve actually been an ultra marathoner and then you received this diagnosis and now you’ve become a campaigner. So can we start this conversation by sharing with us what you would say were the key events in your journey with prostate cancer thus far.
Tony Collier:
Yeah, sure, Clare. I was a runner. I started running when I was 45, quite late in life. I ran my first marathon when I was 50.
Clare Delmar:
Which one was that?
Tony Collier:
I think it was Brussels in Belgium. No, actually it wasn’t. It was Amsterdam and then Brussels was the second one. And then I went on to do another 18 marathons, having said never again 18 times.
Clare Delmar:
18?
Tony Collier:
I ran 19 in total before the age of 59.
Clare Delmar:
Wow.
Tony Collier:
From 50 to 59, 19 marathons.
Clare Delmar:
What was your PB?
Tony Collier:
PB was 3hr23 so I was a pretty decent sub elite runner.
Clare Delmar:
Wow.
Tony Collier
I’ve done one marathon since my diagnosis which was London and strangely it’s the one I’m most proud of. I ran it in five hours and seven but I’d been on hormone therapy for a year which had a massive effect on my running ability. But I raised thirteen thousand pounds for Prostate Cancer UK.
Clare Delmar:
Well done.
Tony Collier:
So I’m actually most proud of that one. My running career sort of took a step up when I heard about this incredible race called Comrades Ultramarathon in South Africa. And I decided I was going to do that. And eventually I got around to entering it in 2015. This is a fifty six mile road ultra that climbs six and a half thousand feet. It’s often 28 centigrade and quite a challenging race.
Clare Delmar:
Wow.
Tony Collier:
So I turned up in 2015 but I picked up an injury six weeks before and basically had to bail out after 17 miles and then the following year, 2017, I completed it – one of the proudest moments in my life. Very, very emotional. 9hr46 for two back-to-back marathons and a 5K. The 5K at the end was the slowest 5K I have ever run. But then the relevance of Comrades is that I was training to run it again in 2017 and in April 2017 I ran two marathons a week apart. Manchester, UK and Paris. Ran them as training runs, relatively slowly. But I picked up what I thought was a groin injury. I could barely get my right leg out of the car and that became a bit of an issue because obviously Comrades was on the horizon and I still wanted to do it. And basically I saw a sports injuries doctor. This was on the 8th of May 2017. We had a prearranged MRI scan of the groin area. The MRI scan obviously showed up something untoward, and he sent me there and then for a chest x ray and blood tests. And you can imagine my shock, you don’t need those for a groin strain. And then he said to me, just because I want to rule out anything untoward, tomorrow, I need you to go and have a full body CT scan. Of course you can imagine that evening my wife and I were just struck with fear and terror…
Clare Delmar:
Of course.
Tony Collier:
…absolute terror, sleepless night, horrendous. And I went for the CT scan on the 9th of May 2017. I went to my running club that evening and the doctor phoned me as I was leaving at about eight o’clock and said, I’m really sorry, but I’m ninety five percent certain you’ve got prostate cancer and you’ll need some more tests. So we had more tests, bone scans, biopsies, all the usual stuff and I was told about 10 days later, that I’d got stage four prostate cancer. I found out it spread virtually throughout the skeleton. It was in the pelvic bone, the hips, the ribs, the spine, the neck and the skull. And then the most scary thing is my wife asked the urologist at the first meeting with him. How long do you think Tony has had this prostate cancer? And he said, probably 10 years, judging by the extent of the spread. And of course, that meant I had it from age 50 through to… I was 60 when I was diagnosed. It also meant I’d run 19 marathons and one ultramarathon with cancer inside me.
Clare Delmar:
So no symptoms?
Tony Collier:
Absolutely symptomless, completely symptomless. If I think back to the months before my diagnosis, the only thing I can think of is that my ejaculations were weaker. But I put that down to aging as you get older. So that’s the only thing I can think of. The groin strain started around the February. I started feeling the pain in February 2017. And it turned out it was actually stress fractures of the pelvic bone where the cancer had eaten into the pelvic bone. And so that was what was causing the pain.
Clare Delmar:
So your first PSA test ever was during this time?
Tony Collier:
First PSA test ever was on the 8th of May 2017 when the sports injury doctor sent me to have one. And I remember seeing the bloods form for the blood test and he’d written a PSA because we don’t do PSA test as standard in the UK. He’d actually handwritten PSA. I had no idea what PSA meant. It meant absolutely nothing to me whatsoever. I then went on to obviously further treatment. Started Bicalutamide for 28 days, first injection of Prostap part way through that 14 days and then three monthly Prostap injections after that. And I was due to have docetaxel chemotherapy on the 23rd August, about three months after diagnosis. But in June, because I was so open about my diagnosis, people knew about it. Lots of people contacted me and told me about this new wonder drug that had been announced at the cancer conference in Chicago in June of 2017 called Abiraterone.
Clare Delmar:
Yes.
Tony Collier:
And I basically talked to my oncologist about it and he decided that my private medical insurers might fund it for me and they did. And so I went on Abiraterone ever since. My PSA at diagnosis was 129.
Clare Delmar:
Wow.
Tony Collier:
And it has stayed at zero for the best part of three years now. And my Gleason score was a five plus four. So Gleason nine.
Clare Delmar:
Yeah.
Tony Collier:
So quite an aggressive cancer. But I think the biggest shock for me was that I’d had it for ten years.
Clare Delmar:
Yes, of course.
Tony Collier:
And then moving on from that, that basically leads to why I became an advocate.
Clare Delmar:
Yes, exactly. So tell us about that. How has this led to this role as an advocate and campaigner?
Tony Collier:
Well, to be honest, I started off I was absolutely furious that if I’d known that I could ask for the PSA test from age 50. In fact I had a right to a PSA test from age 50. If I’d known about it and actually done something about it because, of course I may not have done something about it. If I had a PSA test every year from age 50 I could have had curative treatment and I wanted to make sure that other men knew they would end up like me if they didn’t go and have a PSA test. And I think this is a really, really important message. Until we have a screening programme for prostate cancer, we are not going to catch men until they’re too late like I was. And I want to make sure as many men as possible are diagnosed early because early diagnosis equals curative treatment – most of the time. And so I became an advocate for Prostate Cancer UK. I’m an awareness speaker; been a fundraiser. My family were the faces of the 2018 Christmas appeal, which raised probably near a million pound. And I’ve done some television interviews, radio interviews, I’ve written articles, and basically I make as much noise as possible.
Clare Delmar:
Yeah, you’re quite a social media star.
Tony Collier:
Well, I try my best to be out there as much as possible. And I think this is something that we are seeing much more of. I think men now are much more vocal. And I think that’s a really important point. Instead of sort of. You’ve got prostate cancer, it’s a horrible disease. Or, what’s that all about? People shying away from being open and honest about it. I think we’ve seen a change in attitude. People are becoming much more open about it. And I think my openness was something that my wife and I agreed from the start. This is actually a really important point. I was very happy about being open about my diagnosis and treatment and prognosis. But my wife had to be as well for me to be. I couldn’t have actually been as open unless she wanted me to. She was comfortable with that. I didn’t want her to be in a difficult position.
Clare Delmar:
Indeed.
Tony Collier:
So we both agreed that it was the right thing for us to do.
Clare Delmar:
It’s interesting because that’s one of several themes that I’ve been particularly interested in and we’ve seen with the patients who come to us. You know, the wife or the partner is often the advocate and is affected clearly in multiple ways as well. Clearly needs access to support and information. So I just want to pick up on something you said a minute ago about some of the changes you’ve seen in this sort of three year period. And you mentioned about men talking about this more and that you were very open. You’ve been very demonstrative around that. So in addition to that, and maybe the PSA is a place to start, but what changes have you seen in that short time that might even give hope or give caution to other people, whether they’re medical changes or you mentioned attitudinal changes or behavioural changes? I’d be really interested to hear what you think about that.
Tony Collier:
I think Prostate Cancer UK has been very effective in raising the profile of prostate cancer and using celebrities to do so. So when Bill Turnbull, the newscaster, and Stephen Fry, the actor, were open about their illnesses, we ended up with something called the Turnbull-Fry effect. But basically more and more men simply went to the doctors and asked for a PSA blood test. The other impact that Turnbull and Fry had is our job as awareness speakers became much easier. We were pushing an open door and I think that’s been a massive sea change. Originally getting to do an awareness talk was really difficult. We met obstructions, we met, I think, situations where people were not very comfortable about it, but because it was now much more in the public domain, we were pushing against open doors. And I think that’s been really, really important.
Clare Delmar:
And what have you seen as some of the most open doors in terms of channels? I mean, is it football clubs, golf clubs? Where have you found these doors to be particularly open for you?
Tony Collier:
I think in my own case, because I was a runner, I wanted to tell my story to running clubs and that was a bit of an issue because obviously running clubs are all fit young men. And even when you get to veteran stage, they’re incredibly fit men and women. And I think it was for me, it was something I really wanted to do. I decided I was going to tell my running story. The story about my running life, about running all six of the world marathon majors, running Comrades, some funny anecdotes about running life, but then link it into my diagnosis, which was basically brought about by running. If I weren’t a runner, I’d still probably wouldn’t know to this day that I had this thing inside me. So I chose to entitle my talk “Running into cancer”. And I approached loads and loads of running clubs in my area of England and we basically managed to get in front of as many people as possible. The running talks were really well received. So for me, that was great. But I think the other issue is when I spoke to people about telling them to go and get a PSA test, initially I was meeting obstructions to that. People saying, well, my GP says I shouldn’t have one because they do more harm than good. But the Turnbull-Fry effect had a massive impact because people actually knew that they should, in fact, be having these tests. So it made my story easier.
Clare Delmar:
Just to shift a little bit about some of the changes you’ve seen in behaviours, and there’s some good news there about getting out there. And as you say, this this Turnbull-Fry effect. I think you’re probably aware that one of the outcomes of that effect was, I think, the first ever interview in The Lancet or the BMJ, where Stephen Fry actually was interviewed by his urologist.
Tony Collier:
Yeah, I saw that.
Clare Delmar:
So I think it really penetrated lots of spaces. But just want to shift a little bit to… and the fact that you’ve seen so many different groups of men and I hear what you’re saying about running community, but obviously you’ve even gone broader than that. And what I’m wondering is how many health inequalities you’ve noticed within these groups, because one of the things that we’re certainly seeing are some very significant health inequalities, particularly for men over 70. And I mentioned earlier about women and partners and black men. And I’m interested in what your experiences with these groups and what thoughts you have on empowering them.
Tony Collier:
Well, I think the first thing is that my perfect audience to speak to doing an awareness talk is a group of women, and that’s mainly because they are very influential and they go home and make sure their men go and have a PSA test. So a group of women is definitely worthwhile speaking to.
Clare Delmar:
And do you do that very often?
Tony Collier:
I try my best. I always make sure when I do workplace talks that they invite the ladies along. I think this issue about inequalities is probably more of an age thing. I’m particularly interested in seeing new drugs come on stream because I think new drugs are something that will hopefully prolong my life. And for me, Abiraterone has been incredibly, incredibly successful. And the big issue at the moment in England is that it’s not available as a first line treatment for men newly diagnosed with castration sensitive metastatic prostate cancer. And that means basically men in the UK diagnosed stage four with metastases go on to docetaxel chemotherapy. And the big problem is that the older the man, the greater the chance of having comorbidities and the less likely they are to tolerate docetaxel chemotherapy and its toxicity. But they still can’t access these drugs like Abiraterone, Enzalutamide on the NHS. And I think that’s a clear inequality. And it’s interesting to see that Prostate Cancer UK, when they appealed to NICE about the prescribing of Abiraterone for first line treatment, basically looked at the elder population particularly, with a view to saying, you know, these men can’t tolerate docetaxel to the same extent and we are therefore denying them the treatment that will prolong their life. So I think there’s a massive inequality as people get older. And I think support for partners is incredibly limited. I mean, whether that’s the partner of a gay man or a trans woman or whether it’s a heterosexual partnership, the support for partners is really, really limited. There are not enough clinical nurse specialists and very little psychosexual support. And one of the big issues with a terminal diagnosis of prostate cancer and being on lifelong hormone therapy, is loss of libido and erectile dysfunction.
Clare Delmar:
Yes
Tony Collier:
…and it’s very horrible because it affects both partners in the relationship.
Clare Delmar:
Of course it does, yes.
Tony Collier:
I mean, it’s just something that’s troubled me ever since my diagnosis and it’s something that you’ve got to be able to talk very openly with your partner about. And we were very fortunate that we actually did have access to a psychosexual therapist, a clinical nurse specialist, and she was fantastic. And one thing that stuck in our mind from our conversations with her – the hormone therapy removed your drive, but it didn’t remove your desire. And I think that’s a really, really important message. It’s something that we’ve both clung to. And we try our best to maintain as much intimate contact as possible. But I think the support for women is dreadful. And I know I can turn to people if I’m having a bad day. I can seek help if I have a really bad day and I know where to go to. But I despair about who supports my wife. If she’s having a bad day, how does she cope, who helps her? And I don’t think that level of care is available for the partners of any patient with cancer in the UK to the same extent it should be. So I think there’s a massive inequality there.
Clare Delmar:
I agree with you and I see lots of evidence of that. I think the other thing I wanted to just pick up on was about the drug access that you talked about a bit earlier. And you know how some is available, some isn’t, and what can be tolerated, particularly with older men. And so to the extent that there is this disconnect between what’s out there but what’s actually accessible or available, how do you see this changing? And do you think campaigns and advocacy like yours is a key part of this?
Tony Collier:
I think access is still appalling and it’s still very much a postcode lottery. The fact that you can get Abiraterone as first-line treatment in Scotland but can’t in England is disgraceful. And it all boils down to pounds, it’s nothing other than that. It’s all about the money. It never takes account of the patient. That take the patients views into account. Chemotherapy for many is life changing and Abiraterone and Enzalutamide much less so, in my opinion. And I think for me, Abiraterone has been incredibly beneficial as a first line treatment. I can’t see much changing, to be honest. It takes way too long for the drugs with proven efficacy to be approved for patients. People are dying earlier as a result and it is so difficult to get the patient voice heard. The Abiraterone appeal to NICE, patient advocacy was vital, but it was incredibly limited. They wanted examples of older people who would have done better on Abiraterone than docetaxel. But there is a limited audience for that.
Clare Delmar:
Yes.
Tony Collier:
…And I think this has got to change. And I think patient advocacy is one way of making that happen. We need to be very vocal. We need to stay as loud as possible. But I’m not holding my breath that we’re going to see change very quickly.
Clare Delmar:
Finally, Tony, you have been in very recent times in the so-called covid era, a very strong advocate for the rights of cancer patients and also some of the issues we’ve talked about for different reasons, like inequalities, like mental health challenges that have just been exacerbated through covid. Do you have any messages that you’d like to share here around that?
Tony Collier:
I think the big message really is that people are obviously suffering mental health issues because of covid. Whilst living with cancer as well, you can imagine that I don’t want to spend my life locked down, not seeing friends or not seeing family when I know that I’ve got a shorter life expectancy.
Clare Delmar:
Absolutely.
Tony Collier:
And it does prey on my mind, inevitably and it must prey on other people’s minds, hugely. And I think the most important message is it’s OK not to be OK from time to time. And if you’re feeling really down, then there is help out there. And I remember back in October 2018, I had a really terrible spell. My sister was in the process of being admitted to a hospice to die of breast cancer. We were away in Majorca where I ran the 10K and had a terrible run. I was having business problems primarily because I was trying to get out of business, to spend life enjoying myself a bit more. And basically everything got on top of me and I had an absolute total meltdown, and I came back and I was constantly in tears, shaking, anxiety, depression, and I went to seek help. It is not weakness to seek help.
Clare Delmar:
No.
Tony Collier:
So I would urge anybody having a really, really tough time with covid and a comorbidity or just with covid and the general mental health issues. Seek help. Please go and seek help, it’s so important.
Clare Delmar:
So, Tony, how do our listeners find you or do you have lots of things you’ve referred to? You mentioned some videos, I think, and I mentioned social media. Is there a couple of things you can say just quickly about how people could find you, maybe engage with you or certainly access your campaigns?
Tony Collier:
Sure. I have a website called Running into Cancer, which is a blog site. So I’ve told my story in there. And I do write occasional blogs probably done nine or 10. But most of them are about my running life and running into cancer. Some of them are about the horrors of living with prostate cancer. And actually there’s one on there that I think is called living with prostate cancer, the good bits, because it’s not all been bad. You know, I’ve done things since I was diagnosed I would never have dreamt of doing. Back in 2018, I was a model in a fashion show and starred on the catwalk underneath Concorde at the Manchester aviation viewing park.
Clare Delmar:
Oh, wow. Well, that alone is a reason to go to your website.
Tony Collier:
Yeah. And basically everybody on it was a person who used Maggies, a centre in Manchester. And we basically we had about ten different catwalks, fashion show in the afternoon. Six hundred and fifty people, a gala ball in the evening, 450 people. And I was asked if I would do a speech in front of 650 people. And I’m not very used to public speaking, but I remember quite vividly that Rick Astley, the singer, he was actually performing free of charge and like doing the disco at the evening gala ball for free of charge, just to support the charity. Rick was in the front row and I got up and did my speech about living life with cancer. And I remember looking down, looking at him and he was in tears and I think it’s that profound effect that you can have by telling your story, that’s really, really important, and I think that I’ve been able to do things that I would never have dreamt of doing. So the television interviews, for example, radio interviews, I do those because it’s really important to spread the word. I don’t want any personal glory from it, but spreading the message about going to get tested is so vital. And I would never have had the soapbox to do that from without my diagnosis.
Clare Delmar:
Yep, no, indeed. So Running Into Cancer, I’ll make sure that that’s on the transcript and on the link. Tony, I just want to thank you hugely for speaking with me today. It’s been it’s been a real honor and a real pleasure.
Tony Collier:
Thank you. It’s been wonderful to talk to you as well. And I hope we can get the message out to more men – go and get that PSA test done.
Clare Delmar:
Absolutely. A transcript of this interview is available on our website, where you can also access information and insight on living with prostate cancer. Thanks for listening and from me, Clare Delmar, see you next time.