Treated 1994 • Posted 2004 • Updated 2009
I was diagnosed with prostate cancer in May of 1994 at 62 years of age. My PSA was 101.6, and the Gleason score was 6. The Gleason score wasn't too bad, 6 and below indicating a less aggressive cancer. I have since learned that it is a good idea to get at least a second opinion on Gleason as it is a subjective judgment and the more experienced the rater the more accurate the rating.
But that 101.6 was BAD news. It almost certainly indicated that the cancer had spread outside the prostate. More extensive diagnostic tests showed that the cancer was in the left seminal vesicle and, possibly, the right. The bone scan detected a node in the left center rib, determined to be likely due to an old injury and not cancer – so, perhaps, the cancer had not yet spread to the bone. (Stage T3b?)
The urologist who diagnosed my cancer normally treated the disease with surgery but, in my case, he judged the cancer to be too advanced for successful surgery. I asked about radiation or some other therapy and was advised that anything other than surgery was experimental and probably useless. In his opinion the only treatment for cancer as advanced as mine was hormone suppression (also known as hormone ablation). This consists of taking two drugs (the latest are not the same as in 1994 and, I understand, are more effective); one suppresses the production of testosterone and the other attaches to the testosterone receptors on the cancer cells and blocks whatever testosterone that remains. Most prostate cancer cells at this stage are dependent on testosterone and die without it. But the treatment is useful for, perhaps, 3 to 5 years. By then the hormone dependent cells have been killed and those remaining have become hormone refractive and can live and grow without it.
Explanatory note: I had been diagnosed with adenoma of the pituitary 2 years earlier  and had the pituitary gland removed along with the growth – meaning that I produced no testosterone since the pituitary is the master gland. I had, therefore, been on testosterone supplements for 2 years to keep my testosterone at the normal level. Therefore, in my case hormone ablation was simply going off the testosterone supplement. But the result is the same as taking the hormone suppression drug. I did have to use the drug that attaches to the hormone receptors on the cancer cells.
I went on hormone suppression immediately after diagnosis. The tumors in the prostate shrank to less than half their original size at the time of diagnosis within a couple of months and PSA dropped to about 50 in the same period. The main side effect I noticed at this time was temporary impotence – that would be true as long as the testosterone was suppressed. But I began to look around for another treatment since, after about 5 years; at most, the cancer would probably begin growing again.
I found a health bulletin board on the old Prodigy network with a section on prostate cancer. It was highly useful for trading experiences, learning about the disease, opinions on the various therapies and advising new members. From that and other sources I quickly learned that radiation oncologists didn't consider radiation therapy to be experimental and that radiation was producing "cure" results comparable to surgery. Since they treated a wider range of cases, some more advanced and not amenable to surgery, the statistics were not as good as surgery. If that fact were taken into account, both modalities were producing similar results – around 90% "cures". I put cures in quotes since even after 15 years no doctor will say that I am cured. The statistics are always stated as survival rates at a number of months or years.
I found 4 treatment modalities that were interesting:
- X-RAY RADIATION – advanced techniques such as stereotactic body radiotherapy (possibly needing only a 5 day course of treatment) were not yet in use in 1994 and the side effects (according to actual patients) were often severe – burns to the urethra and colon mostly.
- RADIOACTIVE SEED IMPLANTS (Brachytherapy) – pretty much experimental in 1994 but worth considering now.
- FREEZING THE CANCER WITH LIQUID NITROGEN (Cryotherapy) – still in the very initial stages – many patients had severe problems from tissue damage outside the target area.
- PROTON BEAM RADIATION – having advanced degrees in engineering, I immediately understood the theoretical advantages of proton beams vs. x-rays. This modality sounded very interesting and as I investigated further it began to sound even better.
After a period of cogitation and discussion with other members of the Prostate Cancer Bulletin Board I called Loma Linda and was directed to send diagnostic information in August of 1994. Dr. Rossi at Loma Linda evaluated the information and estimated that, in my case, there was about a 60% probability of success with the conservative treatment at Loma Linda. This consisted of some 17 treatments with the proton beam to the prostate and surrounding area and 20 x-ray treatments to the pelvic area to kill any cancer cells in the pelvic lymph nodes. THAT WAS BY FAR THE BEST OFFER I HAD RECEIVED SO FAR.
I went to Loma Linda in October of 1994, completed the treatment along with 2 other members of the Prodigy bulletin board, and was home for Thanksgiving. Side effects were minimal, some colon sensitivity due to the x-ray treatments.
I continued on the hormone ablation at the advice of my urologist and medical oncologist. As the years passed the effects of hormone ablation became extreme. There was the weight gain around the middle, the loss of muscle mass, bone deterioration (went on Fosamax). But the worst were the psychological effects – oppressive depression leading to crying jags and paranoia to the extent that it was affecting my job and personal life were particular problems. I went to a psychiatrist at Navy Medical, Bethesda, MD who tried the usual antidepressants with no effect – unfortunately he was not familiar with this particular problem and I now know that Wellbutrin XL does help with psychological problems as well as helping to control weight gain.
Nearly 6 years ago, in a desperate attempt to find a solution, I went to see Dr. Charles E. (Snuffy) Myers in Charlottesville, VA. Dr. Myers had been director of the Cancer Center at the University of Virginia Medical Center for some years. He had spent many years at NIH looking at alternative treatments for PC and was my medical oncologist before getting prostate cancer himself. He is now in private practice specializing in prostate cancer. He took me off hormone ablation after 9 years and increased my testosterone level to twice the normal level with androgen gel. As he explained, if there are androgen dependent cells remaining (unlikely after 9 years – there is no evidence that androgen ablation is useful beyond about 18 months) they will flare resulting in a PSA spike and we will have to go back on androgen ablation. If all the androgen dependent cells are dead, the PSA will peak at around 0.5 and the higher level of testosterone will kill the androgen independent cancer cells.
EUREKA! After 10 years since I was diagnosed with PC with a PSA of 101.6 I was able to use the word 'cure' carefully to describe my condition. I recovered completely from the depression and paranoia, lost 35 pounds (mostly around the middle), recovered some of the lost muscle and my PSA stabilized at 0.44 and has remained there. Sexual function returned to a large degree and began a slow decline as age increased.
Three years ago I had a heart attack, which destroyed about 50% of the heart's pumping capability, and needed a bypass operation. According to Dr. Myers this was likely brought on by the long period of hormone ablation as the circulatory system is negatively affected by low testosterone.
- GET EDUCATED ON THE DISEASE – PC is complicated but slow growing, and subject to numerous management techniques.
- Take charge of your treatment, get multiple opinions, learn what the side effects of the different modalities are and be critical of doctors who are intolerant of other treatment modalities.
- Don't give up.
Jimmie Mitchell - Nokesville, Virginia