One more step taken

A big weight has been taken off my shoulders: bone scan and CT scan were both negative. Yay!

As I expected, however, my urologist recommended robotic surgery. When asked about radiation therapy, he brusquely said IMRT is the only legit alternative, proactively dismissing proton therapy as "unnecessary". When I asked why, he said "It's unnecessary", nothing more.

When I mentioned SBRT and the issue of margins vs. surgery, he immediately asked "Where are you getting this information?" in a rather dissmissive way. He also claimed that the risk of incontinence was 5% or less for surgery.

It seems to me that my urologist doesn't have my best interests at heart. Assuming I'm relating his meaning accurately, am I overreacting?

Maybe surgery has improved? Maybe the particular surgeon is able to achieve that?

Relieved but concerned,

Mark

Mark-

You should not expect your urologist to know anything outside of his own specialty. He doesn't seem to know a whole lot about that either, based on what you say.

Mark - I'm with the others. I would not be comfortable with that doc at all. One of the RO's I met with had such a dismissive attitude, and that's what I did with him. I dismissed him from my mind and went with the other RO, whom I liked very much.

With your G6 and 3+4=7, I would think that radiation would be a viable alternative, especially with the large number of positive cores. Frankly, I would seek not only another uro, but a couple of RO's as well - ones who specialize in the therapies you are interested in.

You might be pleasantly surprised.

At my initial consult with an MD Anderson urologist (Assistant Professor of Urology) I asked a bunch of questions (I had been reading up on PCa on this forum) and he spent about an hour with my wife and I, was glad to answer and took his time.

When I asked the big question of surgery vs. radiation he said either one was a viable option. Then I asked about Proton radiation - he basically said that radiation was radiation - photon or proton made no difference. I'm sure there are many technical differences between the two but from the 5,000 foot level it made no difference to him. If I wanted to go the radiation route, he was recommending brachytherapy.

I respected his opinion because he's up to date with research, at a teaching university, has no financial interest in recommending one therapy over another (they are salaried) and he's been a specialist for quite a few years. He was on-board with the da Vinci robot from the early days and as of a couple of years ago has done over 2,000 RALPs.

Regardless what course of treatment you end up going with, I would be looking for another doctor. Doctors (or for that matter car mechanics or plumbers) who aren't willing to discuss and explain options need to be replaced with more cooperative doctors. We, the patients, may be misinformed or inclined to choose the wrong path, but it is our doctors' job to show us why we are wrong. It is also our job to listen to and consider what they say and to question it if it doesn't make sense to us or does not correspond to other things we think we understand. This is not adversarial. But it is also not a matter of us submitting to the judgment of any supposed expert.

In my own experience to-date I've been lucky. When I was diagnosed 15 years ago, my urologist referred me to a genito-urinary medical oncologist so I could have an opinion other than his. I chose surgery, but believe I did so well informed and with open eyes. Whether this was or wasn't the best decision is nobody's business but my own, but I know I wasn't railroaded by my initial doctor.

Jim

Mr. Urologist....you are fired!

Next, in my opinion you will be better served by radiation treatment than surgery. For the intermediate to high risk like you (and me-high risk) it provides better cancer control with less side effects.

What kind of radiation? Not Proton. It is no better and much more expensive than other forms. Most insurance companies won't reimburse for it because it is no better. And why suffer through 40 or so treatments?

Seek out three radiation oncologists each for SBRT, High Dose Rate brachytherapy, and Low Dose Rate brachytherapy (permanent seeds). Get their assessments and make your decision. Only get the treatment assessment from the actual specialist that will be doing the treatment. Most important.

Your dx is similar to mine, but I was higher risk due to PSA. You are borderline High Risk due to your high PSA. Combination radiation therapy with some form of brachytherapy (HDR or seeds) and External Beam (SBRT/IMRT/IGRT) will give you the best initial treatment.

For more information about HDRBT see www.cetmc.com. This is the website of Dr. Jeffrey Demanes the HDR pioneer and head of the department at the UCLA Medical Center. He has used HDR since 1981. The site is very patient friendly and has long term results.