IMHO, one of the problems with prostate cancer (PCa) is having doctors whose knowledge and skills are "silo'd" - meaning they know what they do well (and hopefully do it skillfully) and know little about other treatments.
So most urologists are surgeons and don't know much about alternative primary treatments (i.e. traditional radiation, proton beam radiation, brachytherapy, etc) Also the 'technology' is moving quickly, so a study of people who had brand x treatment 10 years ago; their survival, reoccurrence, etc. doesn't give definitive answers. And that doesn't even address all the variables of what/how patients present. IMHO: surgeon's are NOT the people to ask about post operative recurrence and treatment. Simply said, its not their specialty.
My own story: In August 2019 my PSA had risen to 8.0 (about a .9 increase/yr). I didn't know that the fact that I was on finasteride meant that my PSA score should probably have been doubled. Due to some office procedure bumbling my urologist didn't seem to know that I was on Finasteride. Also, a previous year genetic test suggested a low probability of PCa. I was fortunate that our local hospital was trialing the equipment to get a multi-parametric MRI which showed a prostate tumor, anteriorly located (i.e. not detectable with a DRE). The local urologist suggested an in office biopsy - ultrasound guided with the intention to take about 9 samples (cores). I chose to be seen at the Mayo Clinic in MN where I had a fusion guided biopsy (combines MRI and ultrasound info) where they took ~23 cores.
Analysis of the cores showed the tumor (fairly distinct) and gave me a Gleason score of 4+3.
I opted for Proton Beam Treatments at the Mayo MN facility early Feb 2020. My treatment consisted of five PBT sessions spread over two weeks. I also opted for SpaceOar insertion. My understanding is that the five PBT sessions give a total radiation equal to what is given in total to some facilities (?Mayo AZ) where treatment is 5 weeks of 5 day a week treatment. I also took a four month shot of Lupron (Androgen Deprivation Therapy).
***I am a aware of some PBT facilities that use the 25 treatment regimen (including, I think, Mayo AZ) One presumes that the longer & lower does treatments are presumed to do less ancillary damage or injury. But, 5 treatments vs 25 treatments may also take it out of the possible for some patients (even if the therapy charge is identical. I thin that Mayo has a commitment to charge PBT at the same rate as standard xray treatment - that is not true of all PBT facilities.
So, two years later my PSA scores seem to be staying just above detectable.
I think of myself as "in remission," not cured, and I hope that my remission lasts the rest of my life.
I have minor moments of urinary urgency that I find manageable; I take .4 mg of Tamulosin 2X/dy which helps with flow and urgency. A colonoscopy last fall suggested that I have some irritation in my lower bowel. I think that causes some minor problems - mostly mitigated by diet. I have ED about the same as before treatment.
Alternative Story: A good friend who chose a top urologist in his large urban area (and he had the means to determine who was tops). He had a Davinci robot assisted radical prostatectomy. He now has reasonable urinary continence; finding some foods make him have many moments of urgency. He reports that he has no erectile function (and that is important to him) He has tried various medications to mitigate the ED and they have not helped.. So far his PSA numbers appear to be good.
More thoughts:
a) I think that new nuclear medicine scans create a much improved environment for detecting PCa metastases and you should work with a doctor/clinic where they are open to that (even if not offered where you/they are).
b) Can't say definitively, not being a doctor, but being on finasteride may suppress your PSA numbers. You might ask about switching to Tamulosin for a period of time to see what being off finasteride does to your PSA (might take six months) and if Tamulosin will work for you.
c) I would look for a medical oncologist who might have a specialty in PCa. Hopefully someone at a large enough facility that they could direct you on to other specialists for diagnosis and possible treatment.
** having "to use catheters for the rest of my life" - using a catheter might be for two reasons:
1. Some men (and women) develop a neurogenic bladder - meaning they can't empty their bladder. Sometimes related to other disease (Parkinsons and ...) and some men develop this after a TURP (transurethral resection of the prostate) collapse of the urethra. Incontinence is not the issue, emptying is the issue.
2. With some men, who have 'severe' unitary incontinence there is no control. So the catheter would be "in- dwelling" (always inserted) emptying to a bag - strapped to ones' leg. I read recently of a prothesis where a 'ring' encircles the urethra, closing it off, and there is a "pump" inserted into the scrotum. Pumping expands the ring and allows the user to empty the bladder and then the ring is deflated. Question would be the success rate, complications, leakage etc. Maybe "better" than having to live with an in-dwelling catheter.
@jimcinak Hi Jim, your experience is nearly exactly like mine, I could have written it. I'm still <.1 after my SBRT in 9/2020 of 5 treatments over the course of 10 days. I too have some urinary urgency with a zero sex drive, but being 74 I'll take it. My Testosterone level is very low and my Urinary Oncologist at Mayo Rochester says that my current level is now my new baseline. He is against supplementing my T-level since he believes that it feeds any cancer that could be hiding somewhere. Best of luck.
Dave