Treated 1999 · Posted 2000
"You are a difficult patient, I don't want to see you again -- don't make another appointment."
Diagnosed with PCa at age 74
Gleason score 8, T3, PSA 24.2
began treatment at age 75
With a PSA of 10.2 (up from 5.6 in 3/98), I had a biopsy and was diagnosed with an aggressive prostate cancer, with a Gleason score of 8 (4+4). I then had X-rays, CT Scan, Bone Scan, and Prostascint Scan to determine if the cancer had spread to other areas of my body. On 14 August 1999, I was told I had an aggressive cancer which had already spread to a lymph node in my left abdomen.
Then began the research. The libraries, in Hilo, Hawaii, did not have any current publications or information; so I went to the American Cancer Society, and made numerous telephone calls, which resulted in many pamphlets to read. In the Winter of 1999, a friend told me he knew a man who had been successfully treated at LLUMC. My friend made contacts in my behalf and sent me the literature about Proton Treatments. My research indicated I was not a candidate for proton treatments because my PCa had already spread. A friend did a lot of research on the Internet for me, so I had more information to read. Another friend had contacted LLUMC, so he gave me more literature about the Proton Beam Treatments. So, I continued to search and question.
By the way, when my Hilo urologist learned I wanted to have a second opinion, he told me, "You are a difficult patient, I don't want to see you again -- don't make another appointment."
In July of 2000, I went to the Huntsman Cancer Institute, in Salt Lake City, Utah for a second opinion (my PSA had been 16.3 on June 12); the doctor was not helpful; however, the research Learning Center, at the Huntsman center, adjacent to the University of Utah Medical Center, was a tremendous source of information; all the books were resent publications (most within six months). My wife and I spent a full day and a half, reading in the learning center, and when we went home, we carried many books back to Hawaii with us. The Learning Center provided postage paid mailers, to return the books we borrowed.
Since we were still dissatisfied with the recommendations of the urologists I'd seen, and my PSA was still climbing drastically, we decided to see what we considered, at that time, to be the very best cancer specialists available, so we went to M.D. Anderson Cancer Center, in Houston, TX. My PSA was 20.4 by that time. The doctors, at MDA, started from ground zero and had me get new X-rays, CT Scan, and Bone Scan. We were very impressed when the doctor and the prostate cancer radiologist checked the films together; their report to me was that they could find no sign of cancer outside of the prostate. The Oncologist, at MDA, wanted to begin radiation treatment immediately; however, I wanted time to check with LLUMC to see if I would now be a candidate for the Proton Treatment.
LLUMC required another Prostascint Scan (which I had done at Hilo Medical Center), at which time, the radiologist could no longer find indication the cancer had spread to the lymph node as previously thought, and I made arrangements to travel to Loma Linda, CA, for Proton Treatment. I began taking Casodex on 26 Sept, 2000 and I had a three month, Lupron shot on 16 October.
At the time my treatments began, 12 December 2000, I was 75 years of age, and at that time my PSA had dropped to 1.42, due to the hormones. My treatment protocol called for 18 Proton treatments and 28 Photon treatments. Two weeks into the Proton treatments, I came down with Pneumonia which caused me to skip two treatments. I completed my treatments on 18 February, 2001.
I had no serious side effects while undergoing the Proton or Photon treatments - only a short period of diarrhea, from eating improperly, and frequent urination, which is common with the condition.
Because of the pneumonia, I was unable to continue my exercise routine and lost muscle tone; since returning home I have struggled to get back the energy I lost as a result. I had my last three month Zolodex hormone shot on 18 May, 2001, but I'm still having hot flashes, weight gain, and fatigue.
However, my PSA remains at less than 0.1.
My LLUMC experience was a very good one; I have deep respect and regard for Dr. Carl Rossi, and his angel of mercy, Sharon Hoyle. Sharon went the extra mile on my behalf, on many occasions (way beyond, and above, the call of duty)
John C. Zimmermann
Bob, may I add my testimonial also? I am Norma Zimmermann, the wife of a prostate cancer patient. Of course we were devastated to learn of John's cancer and I was so happy when John finally made the decision to go to LLUMC for treatment. If John had not spent so much time on research, he may have been able to be treated with Proton only and not have ended up with any of the side effects he has experienced from the Photon treatments. My advice is, don't waste time unnecessarily; go to LLUMC and have treatment as soon as possible after your diagnosis -- it's the only place to consider or to go.
When John was released from the hospital (because of the pneumonia) he was still very weak and somewhat disoriented for a few days; on the second day after his hospitalization, John was in the Proton treatment room for an extremely long time, and one of the technicians came to tell me, "don't worry, Mrs. Zimmermann; your husband is all right; we are experiencing a delay in the treatments only." This is only one example of the wonderful staff at LLUMC. They are very caring and kind people When I told our angel of mercy, Sharon Hoyle, I was concerned about John's general health, she took us to the emergency treatment area, where John was then diagnosed with pneumonia.
You can't find more wonderful caring people anywhere in the world than at LLUMC.