A Patient's Perspective on the Treatment Landscape of Prostate Cancer - Robin Millman
January 20, 2020
Robin Millman, a patient advocate, and 20+ year prostate cancer survivor
Carmel Pezaro, BHB MBChB, FRACP, DMedSc, MHPE. Yorkshire Cancer Research (YCR) Senior Clinical Research Fellow. Dr. Pezaro is a medical oncologist and researcher, with an interest in prostate cancer. Following oncology training and a doctoral degree in urothelial cancer, she spent two years working in the Prostate Cancer Targeted Therapy Group at The Institute of Cancer Research / Royal Marsden. From 2013 until 2018 I worked as a medical oncologist at Eastern Health and Monash University in Melbourne, where she participated in laboratory and clinical research programs. She was the deputy chair of the Australian and New Zealand Urogenital and Prostate trials group (ANZUP) prostate cancer subcommittee and was actively involved in collaborative and industry trials. Her research output includes 70 publications since 2008 and both chief and co-investigator grant funding. As a complement to her academic research interest, she undertook a Master of Health Professional Education, which I completed in mid-2018. In October 2018 she moved to Sheffield to commence a 5-year clinical research fellowship with Yorkshire Cancer Research, alongside clinical duties.
Read: APCCC 19: Wishes From a Patient's Perspective
Carmel Pezaro: So I have an absolute highlight of my day now. I have the pleasure of talking to Robin Millman, who's going to talk about some of his wishes for prostate cancer now and moving into the future. Thank you so much for joining me, Robin.
Robin Millman: Thank you, Carmel. My pleasure.
Carmel Pezaro: So if I may start, can you explain your background and how you come to be involved in prostate cancer advocacy?
Robin Millman: I've been a prostate cancer patient for many years as I explained to you in the talk. During that time I've done various roles for Prostate Cancer UK, the national charity in the UK. I've been a volunteer with them trying to raise awareness of the prostate and prostate cancer for many years. I've been on their research committees, grants committees, and more recently I've been on the STAMPEDE Trial Management Group as a patient representative. And I've run a local support group in the Northeast of England for many years.
Carmel Pezaro: Wonderful. All incredibly important views.
Robin Millman: Yes.
Carmel Pezaro: But I know in your talk today you highlighted the point that you are representing your own wishes.
Robin Millman: Yes.
Carmel Pezaro: So can you talk us through those?
Robin Millman: Well, it was obviously quite difficult in eight minutes to come up with a limited number of wishes. When you're wishing on a star, as my opening slide was, you don't ask for a cheese sandwich. So I thought I might as well go for something that might be controversial with the audience, but we didn't have time to find that out. And prostate cancer screening, as I said in my talk, I've been plotting along many, many years talking to men and women trying to raise awareness of the prostate and prostate cancer, so that men will get diagnosed or get themselves checked and if they've got a problem, get diagnosed earlier. It's tragic to see men who say, "I wish I'd had this test 12 months ago," when they've got advanced prostate cancer. And so that was my first wish is to try and get some population screening and I know that's a controversial subject and all that sort of thing.
My second wish, I think was to try and get personalized medicine going. We've heard here quite a bit about it, but really it's from elite establishments. I want it to be in the standard clinic for the standard person and I don't think it's there yet.
Thirdly, I think I was looking at side effects, morbidities and of course you can't talk to a prostate cancer patient without getting into the subject of morbidities. And then I wanted to do something with doctor-patient relationships and getting faster results because overall survival, which many trials are, is getting further and further away. So that was it.
Carmel Pezaro: I think the audience, certainly I, agreed with every single one of those wishes.
Robin Millman: Thank you.
Carmel Pezaro: They're certainly wishes that many of us share.
Robin Millman: Right.
Carmel Pezaro: Can we talk a bit about, you made the point that often when we talk about population screening, one of the controversies... Obviously one of the controversies is the problem with using PSA and the way that that lets us all down.
Robin Millman: Right.
Carmel Pezaro: But you also made the point that overdiagnosis and over-treatment is, from your perspective, an unusual thing to list as a reason not to screen. Tell us what you mean.
Robin Millman: Well, I know that studies that were carried out into population screening quite a few years ago now, there's a European study and there's an American study, and they concluded that it really wasn't worthwhile because you'd have to treat so many men to save one death and all this sort of thing. I think firstly my purpose is not necessarily overall survival. It's to get men diagnosed earlier and to save the trauma that comes with men having advanced prostate cancer. Something localized that can still be treated.
And I know that this sort of medical world cried out overdiagnosis and over-treatment and what I was trying to say in my talk, hopefully controversially, but we'll see, was that I don't really understand overdiagnosis. A diagnosis doesn't do anyone any harm. It's what you do with it and over-treatment it, well, that's what the doctors do. So if there's any over-treatment, then clinicians, look at yourself.
Carmel Pezaro: Yep. I don't know that it's controversial, but it's a very fair point and I know the community as a whole spent a lot of time talking about uncoupling the treatment from the diagnosis, but we haven't really found a path forward.
Robin Millman: No, we haven't and as you said, but we're getting advances in technology. I mean when you look at what's happening in MRI, without going as far as PSA PET, which we've heard so much about and the University College Hospital of London are now organizing this study. It's going to be a multi-center, I understand the international study, and they are going to do by parametric MRI. They think it's going to take 10 minutes per person and they believe in that time they can tell whether a man needs to go on for further investigation, like biopsies or whether you can say, "Well, for now, you're free of prostate cancer." And if you can get that through, that'll be tremendous.
Carmel Pezaro: Absolutely. I'd like to really pick up on the point you made about improving doctor-patient relationships.
Robin Millman: Yes.
Carmel Pezaro: Tell us what you meant by that. What's so important?
Robin Millman: Well, I think it's important firstly for the patient to trust and be prepared to be open with his clinician. Being outside that and seeing people in support groups and other forums, they come away from the clinic and they're muttering and complaining and groaning, "Oh, I couldn't understand what he was saying. He actually had the wrong file. It wasn't me he was talking about." All that sort of thing. And I think perhaps men feel they're not being listened to particularly well. They're not being involved where they want to be involved and maybe they're getting too involved where they're worrying about, "Well, what have I got to do? Should I be doing this? Should I be doing that?". And again, I think it's not a matter of the elite establishments. I think it's a problem of your standard clinic in your average town with your average patient and your average oncologist.
Carmel Pezaro: And the time pressures and the same things that are faced.
Robin Millman: Yes. Yes, of course. Yes.
Carmel Pezaro: Absolutely. So with all of those wishes, and as I say, I think that you carried the audience with you, what would you say to men, perhaps men beginning, I know it's an unpopular term, but beginning a prostate cancer journey? What would you say to them at the moment?
Robin Millman: Well, the first thing I would say is take your time. Obviously no one wants a diagnosis of prostate cancer, but I've learned over the years, it's not a heart attack. You don't have to do anything in the next three minutes, the next three hours. And in most cases, you don't have to do anything in the next three months. Take your time, make an informed decision at the end of the day. Talk to other people, look at sources of information, the dreaded internet, but get what you can and then make your decisions about the way you want to go with your treatment.
So I think the first thing I would say is take your time, get informed. There is time, of course, we all know. I mean, you hear the word cancer and everybody panics and the man's family panic, "Oh dad, you must do some of this and some of this." But you don't generally have to do anything that is that quick.
Carmel Pezaro: You are part of the STAMPEDE trial team. So I'm making an assumption that you believe in trials. So do you encourage men to participate or what's your message to men about trials?
Robin Millman: Well, yes, I believe in trials because I think it's the only way forward. It's the only way you're going to change clinical practice is to have a randomized control trial that shows a benefit. And fortunately, STAMPEDE has been able to do that in a couple of instances. So yes, I do believe in trials and I would encourage men if they are suitable and they meet the criteria, and of course, not everyone does, to go on a clinical trial. But they have to understand that at the beginning that if it's a properly randomized trial, they may well still be getting the standard treatment.
Now you need men in the control arm because without men in the control arm you've got nothing to compare the research arm with. But they have to recognize that, I mean, generally it's a sort of one-on-one or 50/50 thing. But I would encourage men very much to get involved because that helps other men in the future and that amazingly is the rationale many, many people give, "Well, it may not help me, but it will help others that are following behind."
Carmel Pezaro: I hear that all the time and every time I think it's humbling.
Robin Millman: It is, absolutely.
Carmel Pezaro: I'm going to sneak in one more question if I may.
Robin Millman: That's okay.
Carmel Pezaro: And that's, we've had two packed days of talks and presentations. Can I ask what your highlight is that you're taking back with you from the talks we've had?
Robin Millman: Yes. The highlight, I would struggle I think. I think there were quite a few. I think there's a tremendous debate going on about PSMA PET and in two years' time when the next APCCC is held, then that will have moved one way or the other. I think the one thing I'm taking away really is how much the clinicians enjoy it, just talking around to people. I think they find this a tremendous forum. So there isn't particularly one item that comes out, but I think the whole thing comes across as being a great success and something that everybody who participate really enjoys and gets something from. I've enjoyed being here.
Carmel Pezaro: I think we've all enjoyed you being here too. Thank you so much for your time.
Robin Millman: Okay. Thanks, Carmel.