Go with local prostectomy surgeon or pursue big center 2.5 hours away

@fritzo
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https://www.cancer.northwestern.edu/cancer-care/getting-started/index.html

Yes indeed. My urologist who has done 4,100 DaVinci Robotic-assisted Radical Prostatectomies, wrote in his surgical report that "both neuromuscular bundles were preserved." But how do I know for sure? No one could ever dispute it or prove him wrong...except me. I have not had an erection in 10 months. The neuromuscular bundles are specifically for urinary function and penile erections. Something tells me that my urologist may have lied to me. There is no way to prove it though.

Definitely see if you can get into a center of excellence. I had my RARP done locally by a urologist who was also head of the robot-assisted surgery program. There was localized spread of the cancer in the seminal vesicles and lymph nodes. Post-surgery, my PSA was still higher than it should have been. PSMA, which was new at the time and not being used pre-surgery, showed an affected lymph node in the pelvis further from the ones they removed, and a second surgery was required to remove it. Still testing positive for PSA afterwards, I went to MSK (four hours away all told) for a second opinion. In my first meeting with the medical oncologist, he mentioned that their surgeons would have removed more lymph nodes in the original surgery. I would have still needed follow up, but I could have been spared a second surgery had I gone to a center of excellence from the start.

I agree with what I have read in the comments... How old are you? I was 55 at diagnosis and the local urologist looked me and my wife straight in the face and said he WOULD NOT do my surgery because he was not skilled enough with nerve sparing. A friend was also going through the same diagnosis and did go with another urology group locally and has had nothing but issues since. Would you let the local 1 stall mechanic work on your Ferrari??? For what it's worth, this site has been great with advice since I found it!

Does he have good references/reviews? Does he have years of experience? 'Is the practice he works for considered good? Does the hospital he will do it in have a good reputation? Not all of us want to travel 3-8 hours for a procedure that is very common today. This isn't a heart or liver transplant.

@bueller68 A few years out from RP I question the whole nerve sparing thing. Am I willing to risk leaving something behind for some better wood? As a patient that never achieved undetectable status after removal, I wish my doctor had said we will get wide margins. After Salvage radiation and its side effects I wish they had carpet bombed the whole area during surgery. Currently sitting at home after being scoped and cauterized for radiation proctitis earlier this morning. Chose wisely between wood or cancer gone. Surgeons are salesmen. Have you considered Proton radiation?

Fritzo,
I was in the same dilemma and chose my local surgeon in Southeast Wisconsin. He's done over 300 RALP's, does about one per week, and I couldn't fine anything negative about him on the internet. So far at three weeks out, things are going well. Every day I improve on all fronts. The two centers of excellence closest to me are at UW-Madison and Northwestern in Chicago; both teaching hospitals. At a teaching hospital, they have to teach students. There's a chance that you'll have a student doing the hands on surgery supervised by an instructor. Something to consider and ask about if you do go to Northwestern.
I know it's not an easy decision. So much to weigh!Best of luck!

To the point, see a PT who focuses on men's pelvic floor before and after surgery.

Do at least get a 2nd opinion from a Center of Excellence.

I did that and it likely saved me. You want the best and absent that, ask Mayo to do a second opinion.

I have a cT3b diagnosis, so not that relevant to your less serious case. I started out by seeing a community urologist. I then transferred my care to a urologist at the NCI designated cancer center in the nearest big city to where I live. I then transferred back to the community urologist. Both urologists were proposing to do the same type of perineal biopsy and I chose the one who would do it 2 months earlier than the other. Once I had the biopsy result, I went back to the NCI designated center.

Since my biopsy interpretation was cT3b, suddenly the NCI urologist found he could accelerate my care. Once he saw the biopsy report he gave me an appointment one week later. This is the guy who thought 2 months delay in getting the biopsy in the first place was nothing to be concerned about.

My experience with this urologist was somewhat difficult. I saw him and he scheduled surgery. But when I read his clinical note after that appointment, it became clear that he did not believe surgery was the best option for me. Although during the appointment, he had insisted I see a radiation oncologist prior to undergoing surgery and I had agreed to this, in discussion he had stated that as the outcome of having surgery or radiation in my case were very similar it was up to me to choose.

Yet in bold type in his clinical note, he wrote "Despite my recommendation for radiation treatment given his age and high risk disease... the patient would really like to proceed with surgery"

I wrote him to say please refer me to anyone other than you at your facility, as I can't have a doctor who is not levelling with me.

I do appreciate that I was able to find out what his recommendation was though. It appears he thought that by making sure I agreed to book an appointment with a radiation oncologist prior to surgery, this was sufficient to convey to me that he was actually recommending radiation instead of surgery.

I then looked up and studied the clinical note left by my community urologist after he saw my biopsy report. This guy, during the appointment, had also said radiation or surgery, the outcomes are similar, its up to you to choose, and he had scheduled surgery. His note was clear: "if we do proceed with surgery there is a high chance of biochemical recurrence and needing radiation postoperatively", and that during discussion, he had "wanted to be clear that this may be a multimodal approach".

I concluded that both urologists were not that enthusiastic that the surgery they had scheduled would turn out well. I saw the radiation oncologist at the NCI designated center, and the one in the community that the community urologist referred me to. I eventually agreed to a plan proposed by the RO at the NCI designated center. He is still investigating details about my case which can modify his treatment plan. I am still investigating alternate choices and alternate treatment centers that can offer these choices.

Anyway, I thought I'd report my experience. I found that the community surgeon and the surgeon at the center of excellence both had about the same level of surgical experience. The community guy established some level trust beyond what I felt with the center of excellence guy. I chose to agree to radiation at the center of excellence as I found the RO to be someone I could respect and trust, who had more experience and more resources at this disposal than the community RO I saw, although I liked and respected her as well.

I could sum up what I wanted to convey by saying try to understand what the doctors you are seeing actually believe is best for you. It seems to be difficult for some of these people, however brilliant and accomplished they are when doing or choosing the treatments they offer, to communicate what they actually think to their patients.