Prostate Cancer Wishes From a Patient's Perspective Presentation - Robin Millman

September 23, 2019

Robin Millman, a patient advocate, and 20+ year prostate cancer survivor shares a patient's perspective on the treatment landscape journey and hopes for the future of advanced prostate cancer treatment at the Advanced Prostate Cancer Consensus Conference (APCCC) 2019. He highlights areas of interest and opportunity including general population screening and improved utilization of active surveillance in appropriate low-risk individuals, the importance that patients feel like they are undergoing specific treatment for their own disease, an increased knowledge of the side effects of treatment and the disease, and an increased encouragement by the physician for patients' participation in their care. Given these topics, Mr. Millman shares that in his opinion, quality of life is more important to many survivors than overall survival time.


Robin Millman, Prostate Cancer Survivor, and Patient Advocate United Kingdom.


Read the Full Video Transcript

Robert Millman: Thank you, Howard. One Christian and so many lions. My brief is to spend eight minutes giving you some thoughts on patient wishes. A difficult task given that patients have very differing wishes depending on where they are on the prostate journey. So I had the choice of consulting millions of patients and trying to put their wishes into some sort of order or give you some thoughts of my own. I chose the easy way out. These are generic thoughts because there are some ideas coming in the next few talks (Briganti, Beltran, Oh, Fanti, Rubin, Fizazi) about future treatments. I should give you a warning. The next eight minutes are going to be graph free and algorithm free. I hope you're going to be able to follow it.

My first wish is to try to reduce the number of men diagnosed with advanced prostate cancer. I've been a prostate cancer patient for 20 years and I'm still a patient today. During that time, I visited countless factories, offices, shops, pubs, clubs, wherever, trying to raise awareness of the prostate and prostate cancer. Perhaps some of you see patients when they've already been diagnosed or they've been referred from a primary care setting, and they've already got some idea and knowledge of this magical mystery called the prostate. But if you deal with the general public, you will know that the lack of knowledge is quite staggering. And raising awareness by engaging with 10, 20, or even 100 people at a time is a painstaking process. So I would like to see the introduction of screening programs, which I think would give a massive boost to awareness and hopefully lead to men being diagnosed earlier.

Also for countries like the UK where there are screening programs for other common cancers, it challenges the view, well, if prostate cancer was important, there'd be a screening program. We have a better understanding and acceptance of active surveillance and we have major advances in technologies like MRI. I know University College Hospital in London is leading on the setup of the ReIMAGINE study to assess BP MRI screening, and that Prostate Cancer UK is formulating plans for a very large study on the same screening subject.

I also know that in the debate over the years on prostate cancer screening, there's been a concern of overdiagnosis. I must confess, I've never understood that concern. Surely, any harm from diagnosis is what you do with it, which brings me of course to the shouts of overtreatment. I can only take that to mean unnecessary treatment and I can see that might be a risk and a potential harm, but who is it carrying out this unnecessary treatment. It's not the patient's librarian, banker or his lawyer, or what may be, but it's his doctor.

And so to my next wish, which I will call targeted treatment and which of course we all now start to call personalized medicine. No clinician wants to prescribe or administer treatment that is not effective. And it is obvious, no patient wants treatment that is ineffective. It seems to me that huge advances are being made in prostate cancer research, into genetics, into tumor molecular characteristics, et cetera, et cetera. And we've heard about some of those during the last two days. New discoveries seem to be published weekly. As a layperson, I confess, I don't understand them all. But I am impatient to get this knowledge into standard clinical practice where many men are treated. Not just elite cutting edge establishments. I want the average prostate cancer doctor to know and understand these advances and use them to treat the average prostate cancer patient.

No wishlist of the prostate cancer patient is going to omit the subject of treatment morbidities. We all know the more common problems that arise from the various forms of treatment, but even if treatment has or is going well, these morbidities can make life miserable. From my experience of meeting many patients in support groups or other patient forums, the way in which these morbidities are handled varies enormously. I would like to see as much focus on the consequences of treatment as on the treatment itself. And of course, I was very pleased and encouraged to hear the contributions on this topic this afternoon. Personally and on behalf of countless millions of patients, I could identify with everything that was said.

My wish would be to have easy access to sympathetic and knowledgeable staff. The ED clinic or the incontinence clinic should not be the poor relations in the prostate cancer world. We know that cognitive impairment can be a problem for men having some forms of treatment, but proper attention should also be paid to the psychological and emotional consequences of other morbidities. Some men and their loved ones find some of these problems enormously depressing and stressful. Treat the prostate cancer of course, but also treat what is here.

My next wish is to see a better doctor-patient interface. Of course, there are many excellent doctor-patient relationships, and I'm sure your own clinics are fine role models, but believe me, there are some horror stories as well. What happens in your clinics does not always happen in the routine or standard clinics. We all know and talk about joint responsibility and decision making, but some patients find decision making about things they don't fully understand a burden. Others of course, welcome it. I would like to see clinicians being smarter at assessing where the patient stands and what level of participation he wants.

There's a massive amount of information, misinformation, and disinformation on that thing called the internet. And I'm sure you come across it frequently. When the patient says, "I've seen on the internet that... " And you groan inwardly, and no doubt frequently, outwardly as well. But out of all that good or bad information, the patient may decide he wants to try something for himself in addition to his medical treatment. So unless you think it's going to be harmful or conflict with his regular treatment, then let him eat green tomatoes or whatever or take Dr. Snake Oil's magic potion.

It's not just what the weird and wonderful does or doesn't do to the disease, but again, it's what it does here. If he wants, let the patient get an opportunity to play a part or believe he's playing a part in managing his prostate cancer.

My final wish in the time available is to see research and trial results implemented more quickly. I believe most patients with advanced prostate cancer value life quality over simple survival quantity. With an increasing range of treatment options, overall survival can be a distant target and this could delay the implementation of potential beneficial changes to clinical practice. Acceptable and the acceptance by all of surrogate endpoints would be valuable and could enable more men to benefit earlier.

I'd like to thank Silke, Aurelius, and all the APCCC Organization for making time in a busy program for a patient voice, even an onco-geriatric voice. Thank you very much.