Rising PSA years after radical prostatectomy

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,

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*

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*

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*

My husband was diagnosed with T3b post surgery in 2020. His PSA level was <0.01 and has remained undetectable. We did extensive research and got multiple opinions. The consensus was to not proceed with adjuvant radiation, however, any signs of PSA returning, to jump on immediate Radiation. We learned PSMA-PET less likely to reveal anything <.5 PSA.

Best wishes.

Good plan. Best wishes.

My husband was diagnosed with T3b post surgery in 2020. His PSA level was <0.01 and has remained undetectable. We did extensive research and got multiple opinions. The consensus was to not proceed with adjuvant radiation, however, any signs of PSA returning, to jump on immediate Radiation. We learned PSMA-PET less likely to reveal anything <.5 PSA.

Best wishes.