TAKING STOCK - Taking Stock
EAPM Director Dialogues - Ken Mastris
Londoner Ken Mastris is chairman of Europa Uomo, the European advocacy movement for the fight against prostate cancer.
The organisation is based in Antwerp, Belgium, and is a European coalition of patients’ supporting groups for prostate diseases in general and prostate cancer in particular.
Talking about advances in personalised medicine, Ken says: “I believe there’s a lot of work being done on the early stages of prostate cancer, and the message is getting across. But still, men are suffering in silence – not talking to their GPs because they think it might be a weakness.
“This is the time for men to speak up. And what I think is the problem is that we have to get away from the past generation who were told ‘boys don’t cry’ and ‘you have to suffer in silence’. But I would say that now, with the next generation and the modern tools, such as apps and things like that, and with all people in the arena, I think we can get that message across quicker.
Ken has the view that “the symptoms have to be addressed by the professional bodies, the local GPs and nurses, and the patients should be aware of the symptoms themselves. It’s time for men to speak and tell the physician about their suffering - their pain - because if they speak up early, it might stop the advancement of the cancer”.
He points out that, when it comes to men in general: “anything below the belt, we don’t want to know. About sexual problems, erectile dysfunction and a side effect of prostate cancer – incontinence”. Also, he takes the view that there needs to be a more “joined-up approach” because, currently, “when the patient has gone through the first phase with his oncologist, urologist…the experts feel they have done their job and say, ‘OK, that’s me done, it’s over’.”
He says that, according to a recent survey, plenty of “men diagnosed with early-stage prostate cancer will see it result in advanced prostate cancer within ten years,” and holds the view that “the symptoms have to be addressed by the professional bodies, the local GPs and nurses, and the patients should be aware of the symptoms themselves. It’s time for men to speak and tell the physician about their suffering - their pain - because if they speak up early, it might stop the advancement of the cancer.”
On top of this: “We need to educate all the professionals to look at the patient as an individual, rather than treat the cancer. Treat the patient first – look at the background of the person and see what sort of treatment he wants”. Meanwhile, he adds: “the inequality throughout Europe is a disgrace, and the outcomes of men with advanced cancer are not being addressed”.
Ken says that he’s heard that in his home country of the UK, medical professionals are discharging patients within two years of their operation, “whereas it used be ten years” of monitoring. “So, if you’re going to be back in the community, have we got the support there? Have we got the doctors to realise that when a person goes in with back pain, rather than say ‘I’ll give you pain killers, it could be arthritis’, they think ‘could this be their cancer getting into advancement?’”
But what about cold, hard cash? He says: “The governments should look at their budgets for healthcare. Only 3% is (spent) on prevention and I think we should be spending more and talking to even younger people. When I was diagnosed with prostate cancer I didn’t know what a prostate did, and what it was used for, and afterwards you feel like ‘Oh! How many men don’t know about this?
“Unfortunately, with prostate cancer, there isn’t a recognised tool for screening. We’ve got the PSA test, which is only an indication, and we’ve also got the arguments between the GPs where some are for it and some are against it. Some will refuse the PSA test, and I think that’s scandalous. Providing that the patient is aware of the pros and cons of the test I don’t think that anybody should be refused one.
“One thing worrying me to a certain extent is that you can buy drugs online now. I always say that the internet is the most dangerous diagnosis tool for patients. Even a biopsy is a check were they might not even pick up the cancer, so I think we need to put more into things like MRI and the new techniques. But the biggest problem is cost, and I can understand how governments react. We had this thing in the UK with some of the drugs coming out of the cancer drugs fund, and I think that’s another part of inequality.
“(When it comes to ‘value’) if you’re going to produce a drug that’s going to give one extra month of life to someone, the government’s not going to be interested in that. I keep saying ‘treat the patient, not the cancer’. So you look at that person and say ‘if the person’s going to live an extra couple of months because his daughter’s getting married, well, let’s try and do that’.”
Over treatment has been an issue, too, which hardly helps when it comes to cost-efficiency and lifestyle. Ken reveals: “As soon as I was diagnosed, as soon as I knew I had cancer, I wanted it out of my body. Maybe I was one of those at the time that could have been on watchful waiting. But to me, the word ‘cancer’ – it’s ‘death’, if you like. Unless you can get over that early stage…you’ve got a cancer, you can live for years without (an operation) but I think we need to educate people.
“The common thing is you want the cancer out of your body and then you worry about your family and you want your will sorted out. The experts will mention erectile dysfunction and incontinence…at the time you can live with that. But once you’ve had the treatment your goal gets higher. Then you talk about erectile dysfunction and you want to have a quality of life. You’ve got over the first shock.
He’s says he thinks that a lot of that is not understood at the time of diagnosis, because the patient isn’t actually listening to the message. He believes that partners can very important: “because the partner will actually give more information than the patient himself will give to the GP. What normally happens is that the doctor will say to the patient: “How are you today?” And he will say ‘Fine.’ And his wife will say: ‘No, you’re not fine. You were up all night with pain.’
“Men don’t want to tell,” he reiterates.
If that were not enough, he adds: “Patients in the poorer countries haven’t got the power to speak up. I still believe that in certain areas, oncologists act as their gods, and the patients themselves don’t know how to speak up because they are scared they might offend their consultant. But I think the next generation will be more savvy. Well, we’re noticing men are getting vainer in certain things – they use moisturiser now.”
“A lot has been said about multidisciplinary centres and centres of excellence, especially in the UK, which will give a better outcome…but I still believe there should be an optimal treatment for each prostate cancer in each European state and a basic treatment available. We’ve got the postcode lottery in the UK, so we can see this inequality even across the UK. It’s just a bigger postcode. For example, I’ve heard that London is the worst place to have cancer. For a country like the UK to be classed as one of the worst in Western Europe is a shocking thing.
“If I could say anything to the EU health commissioner, I would say you should look at the system in your own community and look not just at the monetary values, because especially with the increase in the pension age, and people living longer, I think we have to address the issues of early diagnosis and better treatment of cancer patients. And it has an impact on their families – it’s not just the patient that suffers.
He adds: “I think the biggest problem in Europe is the different standards of health benefits, like insurance-based companies in Germany, the NHS in the UK, plus the US and their Obama Care. So the message for the commissioner is a very difficult one, but it has to be looked at from a different angle, not just cash.”