just diagnosed with prostate cancer, what to do?

pookie63 said:

some advice
I recently completed forty IMRT radiation treatments, and most of the side effects have essentially subsided. Before learning more about radiation therapy I was headed toward surgery, with great misgivings. I learned that doctors don't necessarily know everything about the alternative treatments that they should. My urologist was also a surgeon who specializes in open radical prostatectomy and seed implantation; his partner specialized in da Vinci robotic surgery for radical prostatectomy. They both knew almost nothing about the radiation alternative. I read a few things about it and it didn't look like a good alternative -- nasty side effects like rectal burning, bladder burning, radiation induced cancer, etc. Then I learned about proton therapy and drove up to University of Pennsylvania medical center to meet with the chairman of the RT department. I wanted to take the proton therapy but my health insurance wouldn't cover it. Also the long distance from my home was a big problem. So I went to the local hospital to learn more about IMRT. I discovered that it has a cure rate comparable to surgery and Proton therapy, with much less side effects than surgery and modestly worse side effects than proton. So I went with IMRT, and I'm very glad I did. No cutting. No risk of infection, scar tissue growing inside the place where they would have sewn what was left of my urethra back onto the neck of my bladder, etc etc.

I discovered a few things along the way. DON'T JUST GO WITH YOUR DOCTOR'S ADVICE. Doctors know surprisingly little about alternatives; they advise you on what they know about. Even recently published books written by doctors have old, incomplete, and inaccurate information. I found that the performance of the IMRT technology has advanced greatly in the last few years, and the doctors who provided information about it were dead wrong in a number of cases. You must acquire and assimilate as much information as you possibly can about the alternatives and reach your own judgment, weighing the risks, the benefits, the cost, etc. For me, the watchful waiting alternative wasn't right, not just because I didn't want to live with fear of progression of the cancer, but because a medical research study I found revealed a substantial number of men who had gone that way had their cancers progress. It was something like twenty percent or more. I judged that this probability was too high. There are two types of prostate cancer -- the type that remains indolent for your whole life and never progresses past a certain stage, and the type that progresses. The doctors don't know how to distinguish between them yet. The biggest thing I learned was that it's all about RISK. You have to manage the risks. There are risks of surgery, risks of radiation, risks of watchful waiting. Understand the risks as well as you can and make your own decision.

I had suffered from chronic prostatitis for thirty five years before getting prostate cancer. Amazingly, the IMRT treatment seems to have cured it! It's about ninety-five percent better. I wondered whether it's really the inflammation that's gone or the radiation just deadened the nerves and I just don't feel it any more. However, another side effect, not anticipated by the oncologist, is enormously intensified orgasms! This argues against the deadened nerves possibility. So there you have it -- two side effects of radiation therapy that are BENEFICIAL.

Feel free to contact me for more discussion.

Kongo said:

Welcome
Bill, welcome to the forum and I appreciate your perspective although it is different than mine. Each man must make his own decisions based on individual priorities and its impossible for another to properly judge another's decisons.

I believe your logic is faulty when you infer that since other treatments are sometimes compared to surgery that therefore surgery is the standard that other modalities seek to achieve. Today almost all options to treat prostate cancer are compared against each other. If you and your surgeon want to interpret that as surgery is THE standard, that's certainly your perogative but those who choose modern radiation, active surveillance, or some other form of treatment (all of whom have their own expert backing) would take exception to your conclusion.

I appreciate your urge to have the cancer removed from your body. I am sorry that your choice of treatment didn't achieve that goal completely. In my own case, I learned that the very long histology of prostate cancer meant that it had likely been growing in my body for many, many years and I wasn't obsessed with the notion that I had to have it taken out without regard to potential side effects. To me, quality of life trumped an attempt to remove the cancer completely and I chose SBRT radiation. I feel very fortunate to have apparently eliminated the cancer from my body without any side effects, but I had a less threatening diagnosis than you so, again, choices and priorities were different.

I tend to agree with your perspective about percentages but I do believe they are useful in assessing potential outcomes as long as we keep in mind that when the "10 percent chance" happens to you it's 100 percent.

Best wishes for continued progress in your battle with this disease.

K