Intro Info – I’m 66 relatively good health, obviously gay. During a routine physical I had a slightly elevated PSA score of 4.3 so my primary care doctor recommended me to a Urologist. After some discussion we decided to do a biopsy. The result from the 12 cores was not what I wanted to hear. I was hoping for PHB (Benign prostatic hyperplasia) diagnosis but he told me that they found two cancer tumors one a 3+3 and the second a 3+4 Gleason 7 and a Tumor stage T1c. All still contained within the prostate. But All I heard was CANCER.
The doctor walked me through all the numbers and told me about all the different options I might consider. He was suggesting surgery but told me to come back in a couple of weeks after I had done my own research and we’d discuss treatment options.
In my research I found this group. It proved to be a great help and comfort and gave me some ideas on what to ask my doctor next time I saw him. Hours and hours on online research, reading the post from this site and other support sites, buying a couple of books on the subject, talking to other men who had similar experiences, I soon discovered there are two types of treatment – Standard (covered by insurance and/or Medicare) and “rich man” options.
I decided pretty quickly that surgery was not for me, there were simply too many negatives and long term quality of life issues for me. But the other options did not sound too much better. Impotence and incontinence seemed to be the price you have to pay. The doctor was trying to be reassuring that there are all kinds of ways and work arounds to the impotence issue. Still it was a major factor in my decision making process.
I looked at the robotic Prostatectomy and read that it was the “gold standard” treatment but after only a little more research found there were many other less evasive, less destructive and less long term negative consequences with similar positive long term results.
Radiation therapy seemed interesting but also had issues. I looked into EBRT (external Beam radiation therapy), 3D-CRT, IMRT (intensity modulated Radiation), SBRT CyberKnife, (which a few of you guys here had positive things to say about this), seeding with Brachytherapy, both LDR and HDR, Ultrasound HIFU, MRI Laser Ablation, Cryotherapy, and finally Proton Therapy
I went back last week to talk to my doctor and had 4 pages of questions about all of the above therapies. I told him I was gay and he agreed that gay men have different concerns and he would take those into serious consideration in any treatment path I chose.
My question for this group is – Does anyone here have any experience with PROTON THERAPY?
From my research it seems to be quite a bit less evasive, and the use of proton vs photon seems to reduce the amount of collateral radiation damage. My doctor was not negative about it but said it also has some issues and that being a “newer” technology the long term results were not conclusive.
There is a proton treatment center near me and my doctor was fine with me making an appointment to talk to them. I’m also going to a local oncology center to discuss Brachytherapy and Cyber knife SBRT treatments before I decide.
My Urologist is a surgeon and of course he would recommend surgery because that is what he does but he said I am an ideal candidate for surgery, radiation therapies in any form I chose, and also for proton therapy, but ultimately it was my decision. He even said if I chose to just do Active Surveillance for 6 months he’d be OK with that too. That made me feel more comfortable with him not trying to "up sell" me on one particular treatment or another because of the bottom line profit motive. He made me feel more like a patient than a customer/client.
Right now, I’m considering:
I’d be curious to hear any of your experiences with any of these three treatment options pro and con.
I’m thankful for stumbling upon this group. You seem to be a great group. I look forward to sharing