Connect
← Return to Urologist not wanting to see you if you seek different provider
Discussion
Urologist not wanting to see you if you seek different provider
Prostate Cancer | Last Active: Dec 22, 2023 | Replies (27)Comment receiving replies
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! 🙏🏽
Replies to "I am just beginning my prostate cancer treatment journey and this happened to me. My urologist..."
Connect
@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