Rising PSA years after radical prostatectomy

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.

Thanks for sharing. I don’t have any suggestions; however, my situation is very similar and I’m very interested in what you decide to do. My PSA before surgery was 4.3. I had a radical prostatectomy on 7 January 2022. Eight lymph nodes were tested. One had a Gleason score of 7. The Mayo Clinic suggested radiation and hormone therapy. However, 39 radiation treatments plus Lupron for two years was more than I wanted to sign up for in order to address this issue. I’m continent now but have absolutely no erectile function. I’m not on any medications. I had a PSA test six weeks after surgery. The result was encouraging: my PSA level was undetectable: <0.01. I’m getting tested every three months. Since I’m 73 and want to avoid all the treatment side effects, I decided to do active surveillance and monitor my levels, just like you have. Hopefully, my PSA remains low.
Thanks for sharing your history.

I’m a 2019 graduate of Mayo proton treatment 😁. I would get another doc, ask about a PET scan to look for metastasizes. Best wishes!

I met with my urologist in about 2011 0r 2012. With out other than a procto exam he said my prostate was full of cancer had to be removed. I explained Several friends, and relatives had the surgery resulting in a lifetime of having to use catheters. My question is there any assurance that, that end result could be avoided and was told no. was given Finasteride pills to Shrink the prostate and went several years with some increases in need to urinate more often. I then discussed the / o,f having a biopsy to check what the cancer was doing which, wads done. the pictures showed 3 small dots the size of a pinhead which was told was cancer. During the intervening time psa tests showed levels from .04 up .12 , with some increased frequency of need to urinate. the last psa done approx 2 mos ago brings no response from my Doctor.
What should I do confront the Doctor or go get another opinion?
Conrad Evans

I need to make a correction. I was scanned at UCLA when my PSA had risen to 1.0 not 0.10. Sorry for the error.

Yup I am like you Although I did focal laser ablation 2 times and follow up with 3T MRI annually. They told me the same thing about having a PET scan and quite frankly I don’t understand false positives possible intermingled with positives does not seem like the radiologists can tell the difference. Same as you but I can’t offer any clarity .

I’m with kujhawk. Get the best imaging you can as soon as you can. I was fortunate enough to get the PSMA Gallium68 scan at PSA 0.10 and 4 cancerous lymph nodes were found. I got radiation and went on Nubeqa. Latest PSA <0.008. Good scans lead the treatment. Don’t treat blindly. If you can, get an opinion from Dr. Kwon at Mayo. He’s aggressive. I love his attitude.

Eight years is a good run, but...

Just my thoughts as a layman who has traveled this path too.

It may be time to add a medical oncologist to your team.

It may also be time to throw the BS penalty flag on your urologist and find a new one. With your PSA, it seems inexcusable that he has not suggested imaging to locate where the recurrence is.
https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-second-psma-targeted-pet-imaging-drug-men-prostate-cancer
These scans, or the Aximun and C11 Choline scan can provide critical clinical data to inform any treatment decision such as where is the recurrence, prostate bed only, lymph nodes, how many, where, is there any bone or organ involved...any clinical data from imaging would be critical in a treatment decision.

Another piece of the clinical data may be your doubling and velocity times - https://www.mskcc.org/nomograms/prostate/psa_doubling_time

A general guideline is:

>12 months - monitor
6-12 months- consider treatment
< 6 months - treat.

There are other clinical factors involved, your age, life expectancy, health snd and morbidity factors along with your personal regarding quality versus quantity of life.

So, your Urologist handing you off as you described would constitute grounds for my firing him for failing to actively diagnose you using current NCCN guidelines - https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf

Bring a medical oncologist on board.

Image - https://www.urologytimes.com/view/psma-pet-imaging-modalities-added-to-nccn-guidelines-for-prostate-cancer

Kevin

U should consider MRI with contrast .
A visit to Radiation Oncologist is fine.
Any positive surgical margins?
What is doubling time?
All questions to ask. Hormone and salvage radiation a possibility.

I just joined, not sure I'm writing this in the appropriate place. I had a Robotic Prostatectomy 8 yrs ago. PSA started going up slowly last three years, .19, .20, 1.6. My surgeon told me because I'm stable, he is transferring my care to his APRN, that I won't be seeing him anymore. He will review my PSA and any issues with the APRN prior to my visit. I feel uncomfortable with this arrangement and I think I'm at a point where I need to find a Medical Oncologist to continue with. Fortunately, for me, the hospital in my town is one affiliated with the Mayo Clinic. Does this seem like a good plan? Thank you!