Rising PSA years after radical prostatectomy

I’m not a doctor, but I believe you have every reason to be hopeful. I was diagnosed with T3b cancer in 2001. Two years later it recurred and I was given 35 radiation treatments with no scanning before. PSA dropped and stayed low for 10 years. Cancer recurred again. I started Lupron. PSA dropped again. 5 years later in 2021, recurrence. PSA went to .85 and then .1 in less than 5 months. I underwent a PSMA Gallium 68 scan which showed 4 cancerous pelvic lymph nodes. Underwent 5 SBRT radiation treatments. Latest PSA is undetectable, less than 0.008. It’s a long road but I have felt well most of the time. The only aggravating side effects are ED and incontinence. Not great but I’m alive and enjoying it. Best wishes.

Hello. I've been struggling to get a fuller picture of my prognosis and I'm at a loss over how concerned I should be (not saying that I'd expect to be *unconcerned*) and if I'm broadly on the right track.

* 63 years old, general health is pretty good (no other underlying conditions). 6', 210#.
* near Toronto, Ontario, (Canada)
* Diagnosed Oct 2021. PSA 13. Went up to 15 in the intervening 4 weeks between initial and retest requested by the Urologist.
* 12 core Biopsy. 11 PCa positive. Gleason mostly 6, 2 @ 7 (4+3) and 3 @ 7 (3+4)
* Perineural and Seminal Vesical invasion, non-focal EPE
* Retropubic Rad Prostatectomy JAN 21, 2022
* Pathology: Gleason Group 2, Margins, Bladder Neck, LNs (2) all clear. Perineural, SV, NF EPE confirmed. Staged T3B.

1) PSA test ~March 21: 0.053
2) PSA test 3 weeks later: 0.077
3) PSA test 3 weeks later: 0.092
4) PSA test 3 wks - 10d later: 0.13

* UTI between (3) and (4) PSA tests

So ... persistent (?) w/ rising consistently.
*** Q- While UTI can elevate psa pre RRP, can it also do that after prostate removal?

* Plant based diet. No pork / lamb. Limit 500g / week non-processed red meat. Skinless chicken, omega 3 fish. Some soy. Dairy mostly low-fat (1%). Reduced iced cream (addict). Some cheese.

* 1/2 plate veggies / fruits; 1/4 plate protein; 1/4 plate whole grains.
* zero eggs. reduced sugars. vastly reduced fast / processed foods. Increased berries. Pom juice.

* PSMA PET: should take 6-8 wks to happen. Expectation for detection is low, but RO is still recommending it.
* Starting Hormone Therapy soon (likely ADT, but not sure).
* Anticipate salvage EBRT (**any advice re particular RT tech / approach?**) quite soon after PSMA-PET.

* Looking for recommendations re: yes/no, dosage, frequency for
Saw Palmetto, White Button Mushroom powder, Nettle, Pom Juice.

* psa's scheduled for July 1, Aug 1. Consultation with Urologist mid August.

I have a Urologist, a Radio Oncologist, and a very helpful GP. No medical oncologist yet. (**I've been thinking that I should have one - at least the referral so any backlog delay in getting to see them will get burned away asap)**.

Concerned over:
- post surgical psa never being under 0.05 and that it's rising. "persistent" ?
- psa rising to 0.13 from 0.05 in 3 months, which, even though the numbers are small and I haven't hit 0.2 (expect likely by August), that the doubling in 3 months feels fast.
- rising psa in < 1 year after removal suggests higher likelihood of PCa caused mortality, *and* mortality from other causes.
- "early" interventions seem to be beneficial to high risk, recurrent / persistent PCa
- multiple treatments recommended for metastatic or castration resistent ... CAN or SHOULD one or some of these be accessed w/out having to be in Stage IV or determining castration resistance?
- time is passing, I have no MO, and at some point, it will be too late for "early" interventions.

I'm not sure if I'm overreacting or if there's real value to exploring beyond the SOC I seem to have been slotted into. What's the value of genome or dna testing? Might either lead to a sharpened or more refined treatment plan?

So, aside from "waiting" on the SOC, what should I be doing or pursuing? With whom would one consult with regarding my concerns and discussing the viability of a more aggressive plan?

While I have excellent family support, I live alone and my severe adhd causes me concern about long-term consistency and daily focus.

Given T3b, persistent PCa, (rapidly?) rising psa, and biochemical failure is almost certain to occur many months less than one year, I'm *very* concerned.

*sigh*

Hi. I had radical surgery Oct 2019. Lots of high numbers. Gene testing predicted 5.9%chance of reoccurrence in 10 years. 16 months later cancer came back in lower abdomen. 35 Radiation treatments, radiation cystitis, Peeing blood and huge clots. 40 hyperbaric oxygen chamber therapy sessions to stop bleeding. Lots of other problems. Total incontinence. Had artificial sphincter installed Aug 2021. Failed at 3 weeks. Dec surgery to switch sides of the pump. Fail. Cuff had eroded into my urethra, causing infections. Feb 22 had it all removed. One failure after another. PSA after 2 years is still undetectable. The only good thing out of all this. Good luck,

Good information. Have you had radical prostatectomy - postrate removed? I thought without a prostate the bench marck was 0.2 for salvage treatment.

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.

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.

@olanordman, you may also wish to read these related discussions:
- Post prostatectomy: What do rising PSA levels mean? https://connect.mayoclinic.org/discussion/post-prostatectomy/
- High PSA three years post op https://connect.mayoclinic.org/discussion/high-psa-three-years-post-op/
- PSA numbers: Questions about new treatments https://connect.mayoclinic.org/discussion/psa-numbers/
- Follow up after proton beam treatment: GREAT PSA NUMBER https://connect.mayoclinic.org/discussion/great-psa-number/

You ask a good question. What can rising PSA levels means years after having had a prostatectomy?
There are several reasons why one's PSA level may rise after being stable for a time. This article explains it well:
– PSA levels after prostatectomy https://www.medicalnewstoday.com/articles/323899.php

Here's an excerpt from the article:
"Seeing a rise in PSA level does not always mean that prostate cancer is returning or spreading. The test is very sensitive and can pick up small changes in PSA levels. Doctors will usually want to know how quickly levels of PSA in the blood are rising. To find this out, a person will need to have regular PSA tests. If levels of PSA remain stable or rise very slowly, treatment may not be necessary.

In some cases, high PSA levels in the blood are not due to cancer cells. Some factors that can affect PSA levels include:
– older age
– ethnicity
– medication
A doctor will take these factors and the person's medical history into account when looking at test results. This can help them decide if PSA levels are high enough to cause concern."

The PSA test alone is not enough to determine cause or next steps. Your oncology team will consult with you and likely order other tests. Did you have other treatments after surgery?