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.