For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr Erik Briers, MS PhD about current screening and testing modalities, as well as mental health and quality of life in connection with prostate cancer.
Erik is both an Expert Patient Advocate, member of the European Association of Urology (EAU) prostate cancer guidelines committee and the Vice-Chair of the European Prostate Cancer Coalition, i.e. Europa Uomo – The Voice of Men with Prostate Cancer in Europe. He has a PhD in Chemistry from the University of Leuven, Belgium, and was CEO of a biotech company. His strong social involvement within patient organisations began after his own prostate cancer diagnosis in 2001.
Note: The statements and opinions contained in this podcast are solely those of the speaker.
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Hello Erik, and thank you for joining us for the Waiting Room podcast. Good to have you here. Now, first of all, please tell us a bit about Europa Uomo, how it came about and your own role.
Well, Europa Uomo is the European Prostate Cancer Coalition. It was founded, let’s say, in the early 2000s. As many of those who listen will recall that there is also a Europa Donna, and Europa Donna is a cancer group for women with breast cancer. It was launched by the European School of Oncology (ESO) in Milan, and after they successfully launched Europa Donna which was very active for breast cancer. They wanted to do a similar thing for the most important cancer for men, prostate cancer.
So they stimulated a number of persons to create Europa Uomo. So, they didn’t do it themselves. They just tried to find people, motivate them, help them any way they could to create it. And among those who were called on to help them create it was myself; my urologist from Leuven, he asked me to join the group and to be one of the founders. Now, the final creation of Europa Uomo was in 2004 in Milan. So, next year we will have 20 years and I hope good years and many more to come.
Okay. What about your own role in the organization?
Well, at this moment I am the Vice-Chair of Europa Uomo, which means that I share responsibility, of course, with the rest of the Board. But I specialized myself in some subjects, and some of these are more scientific. For instance, I am, on behalf of Europa Uomo, a member of the European Association of Urology Guidelines Committee on the Treatment of Prostate Cancer.
And I follow many of the congresses on prostate cancer, on treatment options and also congresses on radiology, which is becoming more and more important in all cancers. It’s not just imaging, but also monitoring treatment efficiency, and, in case of radioisotopes, also finding out if a treatment makes sense.
And lastly, I also, we will also organize, and one of my duties, a summer school for prostate cancer patients where they can learn to become a patient expert. Patient expert meaning, know a lot about the disease, the treatments, the diagnosis, but also patient advocates, which requires knowledge of the regulatory system, of what are clinical trials, how do they work, how did they come to the conclusions and all these things. So that will be a major project for next year. First to fifth of September.
Okay, thank you for this overview. Now, I came upon the quote on your website that “prostate cancer in men is neglected and underfunded”. Why exactly?
Well, prostate cancer is one of the few exclusively male cancers. But it is, for many years it was seen as a kind of benign cancer. They said it’s a cancer for old men and old men have to die anyway. So, why give a lot of attention to this? The other reason why is men themselves. Men are not very good in marketing their own problems. So if you would ask someone: “Do you have prostate cancer?”, even if the answer should be “yes”, they very often say “no” because having prostate cancer with all the potential consequences is something that’s very difficult for a man to talk about. And I, specifically on impotence, incontinence; whereas for women, if they have breast cancer, that’s much less of an issue.
But for men, it’s very, very hard to tell to others that prostate cancer is a cancer like other cancers. It’s treatable. It is eventually not curable but controllable, and you may die from it. So what’s the big difference with other cancers? Why not be open about it even if it has very nasty side effects, which many other cancers do not have, but some cancers that we do not expect it from also have.
I see. Now, are there any care inequalities between countries and within one and the same country to be found? Did you experience anything like that?
Yes. Because I am in the European Guidelines Committee, we see differences. If you look across Europe, and these differences are sometimes important. Let’s look at diagnosis. In the guidelines we say that before any biopsy is taken, the patient should have an MRI of his prostate just to establish whether or not in the prostate there are regions, lesions that are suspicious. And there are rules to classify them; yes or no.
Well, in some countries there are either a lack of MRI machines, or time on the machines that are there. So, you can have a guideline well based in evidence, because that’s specific for our guidelines. They are exclusively evidence-based. But if the equipment is not there, the guideline will not help you, and you will have to go to second best. Ultrasound, for instance. That works, but it’s less precise. And unfortunately, we even have evidence for that, because if we have evidence for the better thing, MRI, means there’s evidence to do that instead of ultrasound.
And that’s unfortunately so far different in countries, and even in countries this can apply. If you have a federalized country structure like UK, Germany, these different sub-countries, federated states, then they have their own rules to allow some treatments, to allow some diagnostic procedures. They can decide what the reimbursement is. And in that way, even in a country like Germany, you can have differences in approach. North to south UK, some of the areas might not allow some medicines for reimbursement and might altogether not even allow patients to use these medicines. So, it is across Europe, but it’s also sometimes in smaller units like within a country.
I understand, and what goes hand in hand with this or to have a different perspective, so to say: What does matter most to the patients living with prostate cancer?
Well, the most important item is quality of life. And if you say quality of life, it is the full spectrum of quality of life. It’s not just good food and drinks. And to have the best quality of life with cancer is to be cured from your cancer. That’s the best quality. Even if this cure comes with side effects. If your cancer has been detected too late, and I think we will come back to screening later on, if that is the case, then you’re just controlling the disease. You do know there is no cure anymore with the current state of play, the current knowledge. So, in fact you know that you might die from the disease because it will stay with you. And even then you would want to have the best quality of life possible, which means that for every step in the treatment, in the controlling treatment, you do want a good balance between the benefit of the treatment and the risk involved, the side effects coming with this treatment. And sometimes, and that’s the choice of the patient, patients might say: “I do not want this treatment because I cannot accept the side effects.” Some patients will never accept chemotherapy. So that’s a no go for the clinician. They can come with something else. They may say, “Well, but the benefit of chemo is so high.” “Sorry”, the patient says, “for my quality of life”, which is very individual, “I do not want any chemotherapy brought on to me.”
Okay. And since we’re talking about the important aspect of quality of life: You conducted two Patient-Reported Outcomes Studies on this particular subject, the EU-PROMS. Would you like to tell us a bit more about that?
Yes, so EU-PROMS, there is 1 and 2, and there is another one going now which is in analysis. It’s a study that Europa Uomo from the patients’ side undertook, because what we always felt is that the clinician-reported outcomes in clinical trials and others, they were for us, to a certain level, not trustworthy as to the results. Meaning for instance, they could say “only one in three has such and such side effect”, where we from our colleagues hear that it must be much more. But we didn’t have any data to support this. So, if you don’t have data to support something, you have nothing. You have just words in the wind.
So we conducted this survey where we asked patients to report on their quality of life, but also on which kind of cancer did they have, which kind of treatment did they have so that we could try to link treatment to side effects, the severity of side effects. We did EU-PROMS 1 and 2, and in total we had more than 5,000 respondents, which is, for a study from the patients’ side, excellent. Of course, if you have so many patients, as we have for prostate cancer, that is just normal to have so many patients respond. It’s still an accomplishment, but with so many patients each year just for Belgium, a small country, we have more than 10,000 new diagnoses each year. So, having so many patients respond is no more than to be expected.
I’d like to stay with the subject of quality of life before we get to the screening bit you mentioned. You already mentioned sexual function or impotence and incontinence. I think another important aspect is mental health. So, what can be done to help and support these patients after treatment? I think especially sexual function or incontinence are rather delicate or probably even embarrassing topics.
Absolutely, and that’s why men don’t like to talk about prostate cancer. If you have to say “I have prostate cancer”, the other party will immediately think “Oh, maybe you’re impotent. Hmm.” This needs the patients start to talk about it. Because it’s not so strange to talk about your potency, and especially in relation to a cancer. You haven’t caused this disease! So, if you are due to treatment, become impotent, that’s a consequence. That’s a side effect. And it is something that clinicians are not aware enough that they have to discuss this. It’s the same with incontinence. You have to discuss with the patient that this can happen, but you also have to discuss with the patient what you can do if it happens.
Because if you say to a patient, “Well, I can give you a surgery, and you will be more than one in two impotent and one in ten, at least, partially incontinent for a certain period, but if this happens, I can do this and this and this.” That gives a completely different picture to patients. And then they might accept also to talk a little bit more freely on it. If you try to push it under the carpet, the patient is not willing to go and look there. He’s not going to look for the dust under the carpet [laughs]. And it’s important to explain patients the options they have, and it’s also results from the EU-PROMS that on the question “Did you do something to remedy your impotence or your incontinence?”, the percentages that did are disappointingly low, and this is not in relation to their age.
So there should be more men who would like to do something about it, but perhaps they don’t know that they can, that it’s allowed and that there could be help for them. Not in all countries; even if we look from north to south in Europe, then we see that in the northern part there is much more openness about prostate cancer. And if you go deeper into the south, like Italy and Spain, less and less, and the, let’s say, the break line between north and south runs through Belgium [laughs], through our language barrier. And it’s a fact. We have a patient organization in the north and no patient organization in the south.
Oh, that’s interesting!
That’s also telling us that it’s more difficult to bring patients together to talk about it if there’s no organization. But if we organize an activity in the south, they come, but they don’t want to organize [laughs].
Okay, but at least they turn up, which is nice. We mentioned, well, you mentioned screening beforehand, and I’d like to get to that topic. Which role does early detection play in connection with prostate cancer, especially related to screening and medical checkups?
Well, one thing that is important to know before you go to screen is the question of: “Can this cancer be prevented?” And then the question is: “Do we know what causes prostate cancer?” And the answer is no. But other cancers, there are many cancers for which we know some of the causes, some of them. So they could say for some like colon cancer, try to avoid red meat, processed meat, because we know from statistics that the chance to get colon cancer with consumption of huge amounts of this is higher. It’s population statistics. For [prostate] cancer we have nothing of this kind. Nothing. So, if you know that you cannot do anything to avoid the cancer, then there’s only one solution; that’s go after it and try to find it early, which means organized screening.
Organized screening has to be because with all this, like breast cancer, there’s always a chance that you will find cancers that do not need your attention. We call that overdiagnosis. And if we treat these cancers, we call that overtreatment. But if we do nothing to find those that we can cure and need our attention, we are undertreating the population. And that’s what happens now. In early diagnosis, we find too many men with cancers that have already spread. So, if you take Belgium with more than 10,000 new cancers each year, more than 10% of these, these are not precise figures, more than 10% of these has already advanced stage and metastasized. So they are lost! You cannot cure them; you can hope to give them good soft control, not too many side effects, but for some there’s only hard control, which means lots of side effects, being sick, nausea, etc. for many years.
Well, the survival of a metastasized prostate cancer is a few years. So that’s why we need to find them in an early stage. But we have, and this is also with the European Association of Urology, with the clinicians, that is a model that we want to follow to do screening. And this has come into an acceleration point due to the European Council’s advice to promote screening for prostate cancer. It was a very soft advice due to some countries, but it’s there. There was also attribution of EUR 10 million, approximately, to the lung, gastric and prostate cancer. So we have a project for which we have about three to four years to prove that screening works.
So, how are you actively encouraging men to do screening and testing? How do you reach them?
Well, at this moment we have no screening, So, we cannot say that we can’t reach them. But the idea behind this all is that given that a lot of men, perhaps 50%, don’t know where their prostate is is very strange, don’t know what it’s for. Who cares? It works, I hope [laughs].
We first need to inform men of the prostate. What is this organ? What does it do? What is it for? What can it have as diseases? Because there’s more than just prostate cancer. And if they know good enough what it is, then they can be invited to screen for cancer, which means that this invitation will come from a central office like for breast cancer, a similar organization. And they will, as of a certain age, which depends if they are in a risk group.
For instance, the sons of a man who was diagnosed with prostate cancer before the age of 65, these boys are at risk, so they should come earlier. If they are from African-Caribbean descent, their risk is also higher, so come earlier. Come as of the age of 40, whereas the other men at age 50, that’s fine. And even then it’s not “come every year” like we do in mammography. No, no, no, no, no. We will test for the PSA, which is prostate-specific, not cancer-specific.
And we will have an algorithm that decides, based on this result, whether or not you will go to the next stage, risk assessment, eventually MRI, biopsy. Always send you back to the screening pool where you can come back, not necessarily next year, it can be in three years, can be next year. Depends on your level of PSA. So that is what we call the risk-adapted screening for prostate cancer. And even then, and this is for us very important, if the cancer is detected, it is classified. And in our guidelines, we clearly see several stages in this classification. And one is low risk. When you find a low-risk prostate cancer, there is only one treatment, one option available: active surveillance. And if they are at a good age, 75 or something, then they would say watchful waiting. The modalities are similar. If it is intermediary, doubt for active surveillance is still there, but from then it is active treatments. Intermediary risk, high risk, certainly 40% of them would otherwise die, are locally advanced.
So, there’s a clear strategy of “If we find something, okay, we sit down, we discuss and we send the patient to the most adequate treatment”. If we look at this PSA test, if we look at the situation in Belgium, where we have if the patient wants PSA he can go to his doctor. This is not screening. They call it opportunistic, but the man is not opportunist. He just takes care of his health. Only less than 2% of PSA tests go on; 1.5% about goes for a biopsy. And of the biopsies, it’s about 40%, it’s low risk if positive. So, most of the men, they get it right but at least we find those who should not get away, who should be treated.
Yes, that’s the important part. Exactly. Well, that was quite enlightening. I think in Germany, where I live, it’s you have to go back every year, but you have to pay extra for the PSA in your blood sample because it’s not included by the insurance companies, but you need to pay a little bit extra, which is fine, I think. But you’re on the safe side then and get notified if anything seems to be unusual. But I think that’s probably different in every country, even in Europe.
Yeah, well, it’s the same in most countries that the PSA is not reimbursed, except for those who are in the risk group and for those who had a diagnosis of prostate cancer. If they had a diagnosis of prostate cancer, then they are in monitoring. And in Belgium, for instance, for monitoring, they can have two tests each year reimbursed if they are above 50 and are in risk; only the risk at this moment, they also get one test the year reimbursed, not the second one. It came from something else, but that is as a consequence of budgetary situations.
Yeah, I understand. Now, you mentioned at the beginning clinical trials. Which role do clinical trials play with regard to prostate cancer and how can they help?
The clinical trials are extremely important. And I don’t only say that because I’m in the guidelines committee, but you can never have a treatment for which someone says: “I use this in a patient.” And he said: “Look at him, he’s still alive after ten years!” That has absolutely no value. The only value these case studies have is that they can be hypothesis building. Meaning: So you have done some case studies. You have found some patients who you think fare well. You get the data. Fantastic. And then you say, well, this may be a treatment for patients with prostate cancer. Let’s do a trial, a clinical trial. If it’s a new molecule, then it’s a different kind of thing. Then you even have to prove that its toxicity is acceptable because you could say: “Okay, let’s give this molecule. I know it’s very poisonous, but it may help.” Whoa, we say no [laughs]. And even if it might help, if it kills more than half of the patients, it will never, even with more than 5% it would never go.
So, then you go to a clinical trial, and if you have an existing molecule that you want to test or a completely new molecule, once you’ve passed stage one toxicity, stage two, you prove that it has some effect on prostate cancer, then you go to a phase three, And in phase three you will do a big clinical trial and you will compare groups, you’ll compare a group that you will give this new experimental medicine to another group that besides, that has standard of care, and eventually they get on top of it a placebo. So it’s not that you compare patients, you only get a placebo to patients who get standard of care, plus they get both the standard of care, which was a misconception at some time.
So it’s: You do not abandon any patients, and at the end you will compare the two groups and you will say: “Okay, those who got the experimental medicine, they on average live three months longer. Overall survival, performance, because we are still working on steps of three to four months.” So it’s not fantastic. But we work here on patients with metastatic prostate cancer. They failed several lines of treatment, and then you say, okay, let’s try if we can do something else, which recently happened with lutetium therapy.
It is this evidence that will be used by the European Medicines Agency to formulate an advice to the Commission. And then the Commission can say: Okay, we believe this advice and we will allow it the market authorization in Europe. And then comes the next step, discussing reimbursement, access to the market, and so forth. And in the Guidelines Committee, we need the same evidence to be able to bring this new treatment into the guidelines. So if there’s no evidence, only case reports, that’s the lowest of the lowest level of evidence. It can never qualify for changing guidelines. It’s impossible. And the expert of this case studies, the expert will be ignored. His evidence is worth almost nothing.
It has to come from very well controlled trials. We have to eliminate the element of chance. We are not throwing a dice to decide who lives or not, because the difficult thing is that if you have four months overall survival benefit, you also know the side effects, but you don’t, then know nothing about an individual patient. But that’s population statistics. And for an individual patient who starts in a clinical trial or later takes a medicine, he will only know if it worked for him, unfortunately, when he dies. Because if he had 15 months on average and he dies at 20, then he can say, worked well for me – perhaps. The longer he survives, the higher his chance that it really made a difference. But for the group, you can really prove that it makes a difference.
I see. I’ve got a general question about the role of patients nowadays and how you view that. Previously, patients were often regarded as being sort of passive recipients while the doctor was sort of the or the GP was sort of the [demigod] dressed in white. Whereas nowadays it’s more about engaged and empowered and informed patients which are actively involved in decision making. How do you perceive this and how do you think that the patient situation has changed?
Well, the patient situation has changed dramatically. I am a patient for 20 years. I was diagnosed in 2001, treated in 2002, 2nd of January, after the first glass of the year. The patient was in fact the horizontal patient, and he had to be patient. “I’ll hear you, doctor, you say this, in three months. Okay, I’ll wait for it. I’m patient.” The patient is no longer patient. We want for things to advance. That’s the side of the patient advocacy. We are there!
I am in a guidelines committee where they decide on treatments based on evidence, and I participate there in an active fashion. That’s my role to be active. We are at conferences, we listen to the experts and they appreciate us because they are not saying, “Will you now please leave? Because now we have to discuss doctor business.” Never had that. And I am there for many, many years. So that’s the side of the group of patients because in the group of patients or the patient advocacy, expert patients, we have really made steps. We are involved in clinical trials, we are involved in evaluating clinical trials to say whether or not for us they are relevant or not.
Some find that shocking that patients can say if a clinical trial is relevant for a given population. And then you have the individual patient. It’s like the statistics. So, it’s significant for the group, a new medication, but what does it give other patients? Well, the individual patient, they are very different, which means that you cannot say that the patient is now co-deciding. That doesn’t work as well for everyone because not everyone has the same level of literacy and will be able to converse with his clinician to the same level, have taken in some information before the consultation, has knowledge of side effects, has talked to his patient organization to know: What am I to expect from this treatment? Has anyone else of you all guys got this treatment? How did it work for you?
So this means that we have the patient level, like in statistics, you will have this distribution of patients who are well-informed and they know exactly what they are up to, and they can really co-decide. And at the other end of the spectrum, you will have patients who – they don’t understand. And they will still need either a patient to help them or a nurse specialist to help them, the clinician to help them to understand what they need to understand then to help to make that decision. That is, that could mean life and death for them, not tomorrow, but in the short or long run so that they know what they’re up to and they know what will happen to them.
And that’s a difficult thing because not all clinicians, and I’m speaking now Europe-wide, are good at explaining things to patients or at referring patients to a nurse specialist or to a patient organization so that the patient can get the most and the best out of the information available and understandable for them. And the small group, 16% of patients that are themselves highly educated, you can forget them. They’ll find their way, and they will discuss, and if needed, they go to Google or someone else and they will find the information. They will understand, analyze. They are not where we will gain public health. The public health will be gained in the 30–40%, which is a very high percentage, of the population that have difficulties to understand medical advice and aspects of treatment of side effects that they should need to understand before they make a decision.
So, shared decision making is fantastic, but unfortunately it does not work for everyone.
So health literacy is really important.
It’s extremely important, which also means that the information you prepare, you can never prepare information for everyone because for some, they will say, “I read this in kindergarten”, and for others they will say, “Oh my God, it’s so complicated”. So you will have to bring levels of complexity so that also a patient with less literacy can find his way through images, through giving examples from other worlds so that they can understand.
I see. And this leads me to my last question of this interview. Since September is Prostate Cancer Awareness Month, what are your plans for the awareness month? That is, your own plans as well as Europa Uomo’s plans.
Well, so for this year, we have a focus completely on this early detection and screening. This means, but we have to delay a little bit activities that we wanted to do. We have already organized several times a European Prostate Cancer Awareness Day, the EPAD, in the parliament. This year we plan to do that, but later in the year because we are not ready to do it in September. And we have never linked all our activities on this month because we could only start the awareness on screening in June. And that is just not enough time. But we join the EAU because we work closely together, Europa Uomo and the EAU.
We are not the source of the science. The source of the science is the science, and that’s EAU. That’s us, if we talk about EU-PROMS. We create, we generate data, too. And this way we work together for one goal. We do want to limit the number of men diagnosed with prostate cancer in an uncurable stage. That’s where we want to go. But we can never eradicate prostate cancer. There is no vaccine, so we will have to live with it and we have to work so that we can prevent the unwanted to happen.
If we can find someone in the stage where he has a localized cancer, we can treat him curatively. The costs and the consequences are far less than if he has metastasized cancer. Because there is, if we talk about side effects, usually the big ones come up. Incontinence, impotence – the two I’s. But there is also the androgen deprivation therapy, cutting down your testosterone, if you have metastatic cancer. I can assure you that the consequences of being on androgen deprivation therapy are terrible. And that is something that comes clearly out of EU-PROMS 1 and 2. And you cannot, it’s a treatment. But unfortunately, not everyone discusses this clearly with the patient.
And that’s a constant thing that we want to discuss and bring to the patients. So, also now we want this to cross to the patients, and one of the two I’s, the big I’s, is incontinence, and that will be one of the major points of attention of Europa Uomo, together with our colleagues from other disease areas like kidney, like bladder, who also have incontinence as a consequence. So incontinence is on the radar and is this year’s main focus of the EAU, of Europa Uomo and of the other colleagues from bladder, etc.
Okay, thank you for this explanation. So basically prostate cancer awareness is each and every day anyway, but it’s quite helpful to tie this to awareness months, of course. Thank you very much for the interview, Erik. That has been really enlightening. I’ve learned a lot about prostate cancer. Thank you.
Okay. Glad to help.