Urologist not wanting to see you if you seek different provider

I am learning I am not alone in my feelings on this regarding attitudes towards patients wanting to get best, latest treaments or seeking second opinions. When you are trying to deal with a life event it would be nice to have those say like I heard some did, "what can we do to help."

University of Florida Proton Institute. Located in Jacksonville Florida. They have been doing proton radiation treatments since 2006. 5 gantries. They get a lot of referrals for pediatric treaments (to lesson radiation damage and secondary cancer later in their life) and cancers that are very dangerous to due photon radiation on like eye, throat, type.

Probably half of the treatments are prostrate cancer. There is another private proton provider in Jacksonville but I am not sure of the name but is also well known.

"explain that to me!" ????
LOL, He'd have gotten an interesting explanation from me....

I am just beginning my prostate cancer treatment journey and this happened to me. My urologist sent me to a surgeon and radiation oncologist. The radiation oncologist only discussed photon treatments and when I asked about proton, he mentioned a couple of doctors but asked me to go through my urologist for the consult. When I contacted the urologist office to arrange the consult they basically wouldn't set it up stating that they normally don't send people to seek proton therapy. My urologist later said that there is no data to support one treatment over the other. I was shocked and we parted ways. The proton oncologist was much more knowledgeable about prostate cancer specifically and advised me to have my biopsy screened above and beyond the usual to rule out genetics factors and to protect my son. Needless to say, I am very glad I sought a second opinion.

Best wishes to all that are going through this. I am very glad I found this forum! 🙏🏽

@wkndwarrior, Welcome to MCC. By the way, we use a lot a abbreviation so MCC is, Mayo Clinic Connect. I did not know about MCC until I was into my treatments and boy I sure wish I had known about it at the beginning of this journey.

You are not alone in what you are experiencing with your urologist. It really stinks to have to deal with this after dealing with stress of diagnosis of prostrate cancer.

My PCP (primary care doctor) mentioned proton radiation to me along with photon. He went through the treatments and explained the differences. The urologist who did my MRI, then my biopsies, which were diagnosed as Gleason Score (worst) 3+4=7 referred me to oncologist/radiologist but provider only has photon radiation treatments not proton.

My oncologist/radiologist said same thing to me as you were told by your urologist. No additional benefit between them. I knew this was not right as latest treatments providers like Mayo Clinics at Phoenix/Rochester, John Hopkins, UFHPTI, etc. not only offered proton treatments but promoted it's use and benefits.

It is true that the cure rate is identical to both but the incidences of side affects and possible damage to surrounding organs and tissues is NOT. Photo radiation goes into body and exits body. Proton has limited radiation going in, releases it radiation at prostrate, AND DOES NOT EXIT body so tissues and organs beyond the prostrate are not radiated.

I chose proton at UFHPTI and asked my original urologist to see AFTER my treatments were over. What I was told shocked me, "Due to volume of patients we cannot see you if you have radiation treatments elsewhere" and for me to seek another urologist. So the urologist who knew me, did my DME, ordered the MRI, did the MRI/Fusion biospies, and gave me my diagnoses, tells me to get another urologist if treated elsewhere.

I think I read that you had additional tests. If you did not consider the following to help you make decisions; PSMA (Pet Scan) which will determine if cancer has spread beyond prostrate, Bone Scan (which will determine if has metasized to the bones), DECIPHER test (done by using the biopsies you already had done) which will give you a genitic diagnosis of your cancer being low risk, intermediate, and high risk.

With the above information and your Gleason Score you can research, get second opinions, and get feedback from MCC to help in your decision making.
Good luck wkndwarrior and again welcomed to MCC

Sounds like a lot of urologists don't like losing patients to a better method and the money that goes along with them. Consider yourself lucky and would you really want to go back to him or her?

mikewo, You hit the nail right on the head. I told my PCP after the issue with urologist that in fact based on what was said to me I would not want to see him again anyway. My heart failure doctor after I told him about this said, "You can always see someone else."

He (heart failure) was the one that countered this urologist not wanting to do transperineal based on my heart failure without consulting with him. I asked my HF cardiologist to intervene and he advised urologist my heart was fine to have it done transperineal with anesthesia. But it took me not the urologist to consult with experts treating this condition.

I did my 30 core transperineal with a local, 120 gm prostate, but then again, I do my colonoscopies with no anesthesia because I want to see every nook and crannies for myself and not rely on secondhand information from the doctor. Same doctor who did my biopsy made me get anesthesia for my markers and SpaceOar even though he knew I didn't flinch once during the biopsy under his local.

When diagnosed, I started reading everything I could on the disease, including white papers. I asked my Urologist so many questions he couldn't answer that he sent me to an oncologist for answers. The oncologist he sent me to also couldn't answer my questions satisfactorily, and he sent me to an oncologist who was a leading local prostate cancer researcher. I attribute my excellent support to my unending list of complicated questions and positing questions they could not answer. (If they would have answered me, I would have been happy.) After discovering they couldn't answer my questions, I asked them if they knew someone who I could talk to for answers. Being good doctors, they felt obligated to send me to someone who could help. It was my intention, and I expected them to refer me to someone. I don't know if this was needed, but it was how it turned out for me. I wasn't going to settle for not getting the answers I needed.

I don't know if this is the formula for getting your advice, but it worked for me. I felt that asking them to recommend someone was the key to getting what I needed.

jc76:

Sorry to hear of your disconcerting and anxiety producing experience with your original urologist at the photon facility.

And I appreciate the excellent posts in response to your original story.

Some (or many) of our negative experiences with healthcare in the US is as a result of the lack of a truly national healthcare system. Providers, perhaps including that urologist, are under constant pressure from administrators to bring in the money. It’s also more money in the doctor’s pocket in lots of cases. That’s one reason that brachytherapy is more and more used in Canada and around the world than it is here, because it is very cost-effective.

On the other hand, use of brachytherapy has sharply declined in the US because of that very cost effectiveness! The financial incentives can be very perverse.

The profit motive reigns supreme in so many U.S. medical institutions and doctors— and as a result, medical schools are teaching it less, creating a downward spiral.

If I’m not mistaken, brachytherapy produces a profit to the doctor and/or facility of about $400, compared to something like $2,400 for external radiation.

I feel fortunate to live in SE Minnesota, only an hour’s drive from Mayo in Rochester, where they have several skilled radiation oncologists experienced with brachytherapy. They also have the equipment to offer proton therapy as well. The doctors at Mayo are salaried, so they have no financial incentive to pile up the charges for a patient. That’s one of the best things that Mayo, and it should be that way everywhere in the U.S., in my opinion.

Thanks again, jc76, for your story. I’m glad you were assertive in your determination to find the best therapy for yourself. Each of us,
along with our spouse or another close friend or relative, need to be our own best advocates!

—Jim (jamesharrison)