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PROSTATE CANCER SUPPORT SITE

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Robert E and Susan live in New Mexico, USA. He was 55 when he was diagnosed in November 2009. His initial PSA was 10.0 ng/ml, his Gleason Score was 6 and he was staged T1c. His choice of treatment was watchful waiting - Active Surveillance. Here is his story.

I have been chasing the reason for higher PSAs, urinary frequency and reduced flow for several years. I had my first biopsy several years ago and it was negative. About six months ago I had to get catheterized because I could not urinate. I was placed on Flomax and finasteride and, among other tests, I had another biopsy which came back with one suspicious core. Three months later I had another biopsy with a few extra cores in the suspicious area and it came back with one core showing less than 5% of a Gleason Score 6 carcinoma, stage T1c.

The urologist (surgeon) gave me all the options and stated that if it were him he'd probably go the watchful waiting route. He stated that the only sure cure would be prostatectomy and that if I chose radiation and it fails then prostatectomy will not be an option anymore because very few surgeons are capable of removing the prostate after the tissue changes that occur after radiation. He was very upfront about the possible side effects of prostatectomy to the point where I really felt that I could expect enough problems to seriously effect my quality of life. He also stated that, given my age (55), the chances of my not having to undergo some sort of treatment before I die of "old age" are pretty slim. He qualified this by telling me that my chances of dying from another cause were greater than dying from this cancer.

We will check PSA every 3 months and do at least one biopsy a year along with the DRE (Digital Rectal Examination). My PSA does not seem to correlate with the cancer because it has been around 10 for many years so I would probably feel safer with a biopsy every 6 months.

It is a little discouraging to see how few men with my diagnosis have opted for watchful waiting. Although it is nerve wracking right now to be living with the thought that I have cancer I feel that living with the possible side effects of treatment would be worse. Also, I really had to look hard for this little bit of cancer and I feel like there's probably a lot of guys out there that have it and don't know it. I'll see how it goes for the next few years and will probably accept my urologist's recommendation for treatment if he feels it is necessary.

Later: Since my last post I have sent my biopsy slides to Dr. Epstein for confirmation of the Gleason stage (not back yet). I have also visited with an oncologist, Dr. Calvin Han at St Vincents in Santa Fe. If I were to go ahead with treatment at some point I would probably go with brachytherapy providing they can shrink my prostate (it is 57gms or cc--strangely, a cc of prostate weighs 1 gram).[ Not really so strange, given that we humans are mainly water - and a cc of water weighs a gram!] I do not look forward to the hormone therapy to shrink the prostate, but the brachytherapy would be most convenient for me. External beam radiation (photon) would be a lot of traveling and proton would require me to live away from home for 2 months. I was leaning toward proton beam for awhile because I kept hearing it has less side effects--however I can not find any reliable studies to substantiate this. Also, Dr Han worked with the proton beam in MA and does not feel it has any substantial advantages. The recovery from RP would be too long and, having had the experience of a catheter for 3 straight days, I don't think I could face it for 2-3 weeks.

Meanwhile, I am living with cancer. I am looking forward to my next PSA in Feb '10. I was never told you should abstain from sex or bike riding prior to a PSA test. I have ridden an exercise bike everyday for about 30 years and never abstained before a test. I am hoping that at least some of my prostatitis and possibly my elevated PSA may be due to this. I recently bought a special seat without the anterior horn.

Later: Hey! I had my last biopsy slides sent to Dr. Jonathon Epstein for a 2nd opinion and he found no cancer. He did find several areas that were "highly suspicious" so I can't relax too much--but it looks like better news than the first pathologist gave me. By the way--the first pathologist stated in his letter that his diagnosis was confirmed by three of his colleagues.

I guess I'm a confirmed "watchful waiter" until further notice. I'm not going to gloat--for all I know the next biopsy will show Gleason 9.

 

UPDATED

February 2010

 

 

I had my first three month PSA under the watchful waiting regimen. It is now 4.8 which, at least, confirms the studies on Finasteride effect on PSA. I started taking Finasteride about 6 months ago. Good news that after doubling this value to 9.6 it is no higher than my last score of 10.

I have been able to stop Flomax. I hated the orthostatic hypotension. I may be one of the few whose urinary symptoms are alleviated by the Finasteride.

Getting an equivocal diagnosis on my biopsy slides by Dr. Epstein has helped my frame of mind. I believe that I will have to deal with prostate cancer sometime in the future, but I no longer think about it everyday.

Robert's e-mail address is: roberte@laplaza.org