Title: A Consumer's Perspective
Consumer: John (Jack) Shaff, US Too International, OHSU Prostate Cancer Support and Advocacy Organization
1996, I received a call from my second cousin that he was about to go into the Cleveland Clinic and at that point in time was scheduled for a radical prostatectomy. So he said there was a family history as far as he was concerned at that point including himself and that I should be tested.
I had a negative biopsy, a high PSA, and I spent the next 9 years keeping track of my elevated PSA. I did not have another biopsy until 2005 when my PSA almost doubled and that was an indication that it was time to try for a biopsy and the biopsy came back with a Gleason 6 and at that point in time I had a radical prostatectomy. So that was 6 years ago and very fortunately my PSA is still negligible.
There was very little information out there and available in 1996. So the period of time between my surgery and my first diagnosis I spent more time interested in lifestyle changes.
I was really in denial about the diagnosis and the potential forever developing prostate cancer for a period of up to 9 years which I think is very important to convey as a prostate cancer survivor. There’s a great fear on the part of most men that they will get prostate cancer and that they will—if they do that they’ll have to have some type of radical procedure.
A couple of years ago, the Prostate Cancer Program at the University suggested that an advocacy group might be an important adjunct to the support group. So I joined the advocacy group and within a year they put out information about the PCRP Program in which I had no understanding of or interest in at that point; in fact I was amazed that the Department of Defense was funding the prostate cancer and even more amazed when I found out there were 17 other types of disease entities that were also included in their purview. So I decided to apply for the program through the sponsorship of OHSU and it took about a year to process my application. And so last summer, I reviewed my first grant in Reston, Virginia in July.
Although it was clear in the instructions that we were to put our—our experience into our review. That was very hard to do until I was actually in the room. And then it was even more intimidating because I hadn’t been in any type of peer review for a good 15 years. But I soon found out that it was a give and take during the review between the consumers and the scientific reviewers and I found that it was very important that the consumers speak to the quality-of-life issues relative to the reviews that they did and convey some of those impressions and feelings in the course of the review to the scientific reviewers.
When I go back to my advocacy group, I want to make sure that they understand that the Department of Defense does have a Prostate Cancer Review Program and that it’s been funded very generously and that they are very intent upon working towards the elimination of death and suffering for prostate cancer patients.
And they are real about it to the extent that they bring in consumer reviewers who are involved in the process of surviving, and bring some of that experience to the actual review table. This program is really interested in impact in terms of its program, results and the research that it sponsors.
I have a great deal of hope and enthusiasm about the research that’s being accomplished by PCRP. I particularly appreciate the opportunity to have been part of IMPaCT, to be part of an active consumer group working in concert as an equal team member with the scientific community to be able to come to some resolution to the problem of prostate cancer.