"You can't trust doctors blindly," Jan recalls of his treatment for prostate cancer. "In the end, it was as easy as treating a cold," he adds.
Jane, prior to the actual diagnosis, did you have any difficulties that you felt?
Not at all, actually. There's a lot of things said about prostate cancer, how men start going to the toilet more and stuff like that. It's just that it's not until the tumor's big enough that it's pressing on the urethra. And by then, the disease may be more advanced and spread throughout the body. So I haven't had any problems.
So how did the doctors find out about the prostate problem?
Even though, like most women, I don't like going to the gynecologist, and I don't like going to the urologist (laughs), I let my partner talk me into not neglecting prevention. We have a young child together and we're both more like senior-type parents in age (laughs), so we try to at least take care of our health to stay fit for our son as long as possible. So that's why I see a urologist regularly and quite possibly if I didn't, everything would be different today.
Anyway, my urologist did a PSA test, which is a very basic preventative measure and actually the first possible indicator of a problem. This test is done from a blood draw. I had readings approaching nine, which is definitely a warning, because given my age, I think between 50 and 60, readings around 3.5 at most are the norm. So, in view of the result, I underwent further specialist tests which showed the presence of a tumour, although fortunately not a large one.
So the prognosis was, I suppose, good. What was the treatment plan?
As is the case with other cancers, the severity of prostate cancer is determined by the stage of the disease. In my case, everything was caught really early, so it seemed that in a sense I had won. But then came the treatment planning. The doctor told me that I would have to have surgery and radiation, with the consequences likely to affect my future life. You wonder - how? Well, in the case of this "conventional" treatment, men can "look forward" to problems with sexual function, but also incontinence and basically a whole host of possible obstacles to a continued active life. This is not universally true, but the risks are high. As I said, my partner and I have a young son, so all these visions scared us a lot.
There was no other solution?
When a doctor gives you a diagnosis and outlines a treatment plan, you're in a state of certain paralysis for a while. The doctor is an authority figure, after all, so you feel that if he's planning something, it's the best option for you. That's exactly how I felt about it. But my partner was puzzled and started looking online to find proton therapy. We didn't know much about it - and I was pretty doubtful that the doctor wouldn't have informed me if this treatment was a possibility in my case. Nevertheless, my partner made an appointment for a consultation. I only mentioned the possibility to my doctor in general terms and he just waved his hand telling me not to even consider it. But at the consultation it turned out that things were very different.
What did you learn?
First of all, I was told that I was actually an ideal candidate for proton therapy. I was still relatively young - in terms of having an active life - and the tumour was in a good place and encapsulated. In practical terms, this meant that it could be targeted effectively for treatment. What was going through my mind, of course, was why I hadn't been told anything like that at the hospital... and I would have had one obvious theory (laughs), but my partner and I decided to put it behind us, not bother with unnecessary explanations, and try to go the proton route.
What was your doctor's reaction when you told him that you would not undergo the treatment he had planned?
It was even more complicated than that. Even though I was ideal for proton therapy as such, the situation with my insurance company was not ideal, as they did not cover this type of treatment. Fortunately, it was possible to switch to another one, but this is again complicated because you have to wait for the switching date, or you can switch once every six months, always towards July and January. In my case, this meant a wait of almost five months.
Weren't you worried that the tumour would spread in that time?
Of course I did. But fortunately, hormone treatment can be arranged in these cases. I mean, to be precise, it is not for those who want to change insurance companies for treatment (laughs), but it is generally one of the options for maintenance or slowing down treatment. So, I was forced by the situation to lie to my doctor - I told him I needed to postpone the surgery and in the meantime I was allowed to take just the hormonal treatment.
But you didn't have the surgery after all...
Exactly. As soon as I was registered as an insured with the new insurance company, I asked the proton center to start treatment. Everything went very well and quickly, I changed my insurance company in January and by February I was admitted.
How difficult was the treatment?
I almost dare not say it. My partner and I were shocked, in a positive way. They scheduled my treatment for one week and it consisted of me heading "on protons" from Monday to Friday. After a week I went home de facto cured. I didn't understand it at all, it was like treating a cold. The idea of surgery and radiation, which was the original plan, and especially the aftermath, made the whole thing a mystery to me. I go for regular PSA checks and I go to the proton centre once a year, but my last PSA readings were below one. Thanks to catching everything early, the treatment ended up being minimally invasive and I dare say it was the prevention that kept the disease from progressing further. So, I would encourage everyone else to head to a urologist for a check-up... but also to not blindly trust him on everything. (laughs)
