Title: A Consumer's Perspective

Consumer: William Seidel, US Too International

The experience as a CDMRP consumer reviewer is a combination of terror and fascination. There’s no man with prostate cancer that doesn’t really want to understand all they can about what’s going on in the field, what’s being done to help address this disease because it is generally a slow growing disease, so items that are being researched right now could possibly help you personally.

So when you’re sitting on those panels you get to see not only what’s on the TV and the internet today, but you can see what’s coming down the pike and that—that’s fascinating. The terror comes from the fact that you suddenly realize that if you look to the left and then to the right you realize you’re sitting between two of the leading researchers in prostate cancer in the entire world and you wonder first, what am I doing here, and after you get over that you fit in pretty well but it’s a shock the first time you realize who you’re sitting with.

I think consumers are very beneficial to the review process. A lot of the scientists and researchers that are on the panels have never had direct experience with the disease. It’s sort of a neat theoretical thing that they’re working on and they get all fascinated and they really get into it. But to have two or three people sitting in the room actually dealing with it at the moment puts a face on it. And being someone who is working with the disease, you have the advantage to be able to explain how a particular research program, if successful, would benefit you as a prostate cancer patient. And I think only a prostate cancer patient can provide that—show the direct impact that the proposed research would have on the prostate cancer community.

There are a couple of areas where I’d like to see more research. And they all kind of focus on the first meeting a prostate cancer patient has when they’re told they have the disease. Because now you’re a in a state of shock and almost immediately you, the patient are called upon to select your method of treatment, a topic about which at the moment you know absolutely nothing. They usually give you very good references for information for surgery or for radiation but there are some staggering statistics out there, some 37 to one, some 48 to one; 37 to one is the lowest one I’ve ever heard of for every 37 people treated, one person actually needed the treatment and have benefitted from it. And there are tremendous side effects from all of the treatments, so 36 people apparently had unnecessary side effects.

So you have radiation specialists; you have surgical specialists; you do not have active surveillance specialists. So that aspect of it very seldom gets covered, certainly not to the aspect the other two do and the new patient, a lot of the times doesn’t realize that for him this may very well be the best course of action at that point in time.

My recommendation to any prostate cancer patient or family member that’s dealing with the disease, if they have the opportunity to get involved with the CDMRP by all means take it. It will—it’s one of the most beneficial things you can do because in prostate cancer especially as in most other diseases—but in most other diseases to a lesser degree, the patient is responsible for their own treatment. The doctors don’t say we think you should do this; they say, well, here are you choices. What do you want us to do? And they don’t always give you—in fact very—there’s some statistics out there that less than half the time they tell you all the options that are available, so you’re responsible for your own treatment, you’re responsible for your own education and CDMRP is probably the best possible resource for getting that kind of information.