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Ian B lives in Massachusetts, USA. He was 57 when he was diagnosed in February, 2017. His initial PSA was 4.00 ng/ml, his Gleason Score was 7a, and he was staged T1c. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

I started getting my PSA taken after I turned 50, but not every year. The scores increased from 0.7 to 3.4 over 6 years. My PC sent me to the urologist, and he said my prostate felt normal and urine test was clean. A new PSA taken after a couple of weeks of not riding a bike or having an ejaculation gave the same 3.4. But he just didn't feel ok that the score had basically doubled from the previous test of 2 years earlier, and recommended a biopsy. There were 12 cores taken, the 6 on the left all had cancer, and there was none on the right. Two cores were Gleason 7 4+3 (~50% cancer), one of these was near the margin. The biopsy was none too soon.

After the diagnosis, I read the recommendations on the major medical web sites, on YANA, and clinical research on PubMed about my situation. One of them was recent and reported that men on thyroid replacement hormone should cut back if they have prostate cancer, because the hormone probably stimulates the cancer growth. I already had no room to spare on the left and was very concerned about it breaking out. My doctor readily agreed to lower my thyroid hormone dosage. I believe that action may have prevented the cancer from reaching stage T3a during the agonizingly long wait for treatment.

I consulted with two prostate cancer teams about treatment, at two local hospitals (in Boston), Mass. General, and Brigham and Women's. The surgeon on one team performs manual laparoscopy, and avoided saying clearly what he would do about nerve sparing on the left. On the other team, the radiologic oncologist, after discussing various radiation treatments and possible side effects, said if he were in my situation he would definitely remove the prostate. The surgeon performs robotic laparoscopy, and I made clear my wish to have zero positive margins, to be as certain as possible the cancer was completely removed (assuming it wasn't already in the lymph or seminal vesicles). He directly answered my question about left margin and said he would have to take the nerve. I understood what it meant to lose the nerve. I took a breath, and decided to get it done as soon as possible.

I had the surgery and after I awoke heard very good news: zero positive margins, nothing at all in the lymphs or vesicles. I was likely cured of cancer. I was also amazed by how little pain or trauma there was. The greatest pain I felt was from the damn catheter (at the head of the penis). I had a minimal amount of narcotic pain meds in the hospital and then nothing after I left the next day. Everything went smoothly after that, right on schedule. Catheter out in a week, practically complete control of my urine in two months. (How does that happen? No one knows!) I had a followup and tested with effectively zero PSA. I resumed jogging a couple of times per week, and then after three months, biking to work.

The erectile function is another story. There is no function. Cialis was useless at any dose (of course). A penis pump got me hard in a few minutes but that disappeared very quickly after the vacuum was removed, even with a tight band at the base. This hasn't improved and my penis extension and girth are now significantly reduced. It takes a good 15+ minutes to get the maximal erection now. I'm still (at 5 months) pushing myself to do it anyway only because I'm kind of disgusted by the idea of my dick shriveling up completely; but it's so discouraging and depressing I only get around to it about once in 7 to 10 days. Masturbation, too, is an absurd, depressing grind, though I do eventually climax. For what it's worth, the first times I did it was before I was fully continent, and when I came, urine came squirting out. Now, if I pee before I start, usually nothing comes out.

So that's my deal. I'll never have anything like natural, normal sex again. This is certainly very depressing. On the other hand, I can hope to live another 25 or more years reasonably healthy and active, instead of 5 to 15 fighting cancer the whole way down.

UPDATED

November 2018

It's been about 17 months since prostatectomy. I still can't get erections. My penis appears to be permanently half its prior length and girth. If I work at it, it'll get firm and I might even get a weak orgasm. Totally depressing. But I've also been having problems exercising, specifically jogging, and I've begun wondering if there's any connection to losing a part of the body that generates vital male hormone. My speed has never recovered to near what was before surgery. I had cardiopulmonary tests done and they didn't find anything wrong, medically speaking. Regardless, it seems to me another permanent loss of physical capacity and quality of life.

I am curious to know if anyone else is experiencing problems with exercise tolerance, physical strength, endurance, etc.

UPDATED

May 2020

No improvevent on the ED or level of stimulation or satisfaction.

The declining exercise tolerance has been diagnosed as a heart condition, mitral valve stenosis. No one has ever suggested it has anything to do with prostatectomy.

Ian's e-mail address is: isb0459 AT gmail.com (replace "AT" with "@")


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