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Rising PSA years after radical prostatectomy
I am 60 years and I had radical prostatectomy on 23rd Nov 2018. I was told out of the 15 lymph nodes taken only one was affected less than a millimetre. It was Gleason score 7B with PSA around 13 at time of surgery but 11 at time of diagnosis in June 2018.
The PSA been fluctuating between 0.09 and 0.18 since surgery on 23rd November 2018
I have no incontinence as well as Erectile dysfunction. I take hypertension medication – Norvask Amlodipine 5mg daily and Cetirizine 5mg for allergy. Below are some of the test results. I have many of these test results – a few below
Jan 2019: 0.11
April 2019: 0.11
June 2019: 0.09
August 2019: 0.12
December 2019: 0.12
April 2020: 0.12
August 2020: 0.11
October 2020: 0.17
December 2020: 0.15
February 2021: 0.18
I am worried the cancer may be returning or might have spread. I met my doctor today and expressed my concerns. He has agreed to refer me to the hospital where I had the surgery. Any suggestions based on this brief history?
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@budisnothome, wow, it sounds like things are rough. Am I understanding correctly that so far the internal bleeding has not been stopped? Do you live with an ostomy?
Hi. The bleeding has been stopped. Living a life with pads, and leaking a lot. I need to wait at least 6 months from when the device was removed to decide if I want to try the device again. Doc said maybe a 60% chance it will work. The original one did not, my 60% is probably more like 30%. Life goes on, hoping my PSA stays undetectable.
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*
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1 ReactionI’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.
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3 ReactionsThank you for sharing. Hope is critical.
I think the biggest worry-flag for me is that my post surgery psa was never @ < 0.01 and it began rising right away. Hopefully ADT plus early (soon) radiation hitting the pelvic bed and the pelvic lymph nodes will hammer the PCa and get my psa to that < 0.01.
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2 ReactionsMy 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.
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2 ReactionsThat .1 PSA should have been 1.0. Sorry
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2 ReactionsGood plan. Best wishes.
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2 ReactionsTo you as well.
Yes. Apparently, the 0.5 is around when there are (unfortunately) enough PCa cells that are in sufficient clusters to be more readily detectable.
My RO feels that despite this, it's possible that at lower levels there has been clustering - particularly when the PCa is persistent (where PSA never dropped to a post radical prostatectomy level of < 0.01, which unfortunately reflects my own circumstance), as opposed to PCa recurrence.
This makes me simultaneously hopeful and fearful, which is really a weird place to be - kind of like feeling both overheated and cold at the same time. With any luck, the persistence is not related to metastasis but rather locally left-behind cells from the non-focal EPE and seminal vesical invasion. The RO tells me that he feels it "extremely unlikely" that the PCa has metastisized. The RO team here is very experienced, so I find some hope in that too.
This is quite the journey, isn't it.
In shared experience and support ... I am deeply grateful for communities like this and I hope I can be around long enough to pay all the support forward to the unfortunate many more who will find themselves with a ticket on the same boat.
- michael