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What would you do if PSA stayed at 0.15 after prostatectomy?
Hi everyone,
I am 58 years old. I had a radical prostatectomy seven months ago and my PSA never dropped to undetectable levels. It has stayed at 0.15 for the past three months.
One doctor recommends a conservative approach with low dose radiation to the prostate bed only. Another recommends a more aggressive plan with radiation to the prostate bed, glands, and lymph nodes along with hormone therapy (relugolix for 6 to 18 months).
I am torn between avoiding side effects now versus hitting it hard to lower long term risk. Has anyone here faced this decision? How did you choose, and do you feel it was the right call?
Thanks for any insight. I would really appreciate hearing your experiences.
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@jeffmarc
Thanks for the information. I should have said the PSA went from .05 to .15 over the last six months, they had put me on 6 month schedule. I am on monthly schedule now, I used the same lab for the .13. Can activity before the test change it? I had the prior readings of .03, .04, .02 then .05, .15, .13 which I just had.
The pain I have in the pelvic area has occurred over 15 years but it became chronic in the perinium which made me want surgery and the surgery got rid of the pain, (I had retrograde ejaculation and believe I was getting infections in the seminal vessels) After surgery I got sitting pain/sphincter and I still had the penile pain which I had prior to surgery. It is the pudendal nerve.
I have fear of the ADT only because I am trying hard to get back in physical shape again. The pelvic pain has stopped it at times and two other surgeries. I was wondering if it would really be needed. But you tell me it is only one shot for six months.
Thanks again for the information, wishing you the best
Tim
@pamperme
Yes, activity before the test can affect it, Though that usually occurs when you have a prostate and you don’t.
I suppose if you are getting stimulated or have an orgasm that it could affect your PSA, But I’m not sure about that. I suspect it’s more that the PSA goes up and down a little bit just due to natural causes.
You did have a significant rise in six months, I think they’re just waiting for it to rise a little bit higher. Getting the PSMA test and finding it didn’t show up anywhere else could mean the salvage radiation make more sense since it’s more likely in the prostate bed. Since you didn’t have clear margins and have EPE Again the prostate bed sounds likely.
I wish you luck, just be aware that they have great drugs and treatments available, I have a genetic problem that causes me to have it keep coming back and I’m still alive almost 16 years later. I’ve heard from people with Gleason nine that had radiation or surgery and are still alive 20 and 30 years later.
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3 Reactions@pamperme Hey bud, I agree with the comments of @jeffmarc. Treatment for recurrence does seem inevitable due to the big jump in PSA over 6 months and other factors in your pathology.
Your history of pudendal nerve issues certainly gives cause for concern; as far as radiation exacerbating bowel issues, you really need to sit down with the RO and see what can be done. Unfortunately SRT is not very precise when compared to other forms of radiation (SBRT) but beams can be shaped to avoid delicate structures.
As for ADT, I would lobby for Orgovyx - an oral medication which for me and many others does not have the marked side effects of Lupron. I took it for 6 months, had minor symptoms and recovered very quickly from it.
Trust me when I tell you that all your anxiety and fears about ‘what ifs’ are worse than the treatment. And remember, an oral med can be stopped if necessary and radiation treatments can also be paused or stopped if symptoms are intolerable.
Long range side effects are variable and mostly unknown so we all roll the dice when it comes to making this decision…Best,
Phil
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6 ReactionsIam going for a pet scan as my psa is 1.77 after prostatectomy. Worried what to do?
@josephtj I asked the same about a subsequent PET scan if my PSA increases to >0.1 ng/ml. Right now, my first two post-op PSA's were < 0.1 ng/ml ("zero"). But being a pT3b category patient, my doctor wants me to talk with a RO about getting radiation therapy. I "know" the RO will say he wants me to do it, but I have read a fair number of articles that say there is no benefits and there could be some negative outcomes (urinary and rectal incontinence) to having radiation therapy at any time. I am just now at about 98% urinary continence..."finally" at six months post-op.
When I mentioned a second, post-op PET scan to my urologist if/when my PSA rises to 0.2 ng/ml or greater, he said that there are not usually enough detectable prostate cells for the PET Scan to be sensitive enough to show radiation hot spots. The test is very "specific" using the gallium-68 tracer, but it is not sensitive enough to detect the handful of prostate tissue producing the PSA. And...(back to incontinence)...
I NEVER want to go through all the post-op kind of incontinence again, and I never want to have bowel/fecal incontinence...just bury me if that happens. I went through five years with my 95 year old dad just being in diapers all of the time because he had limited mobility and could not make it to the bathroom in time. I was frequently the person who had to clean him up. I never wish that on anyone that I know to clean me up - family or otherwise, job or not. The humiliation my dad experienced was unbearable as well. So...
Good luck with a second PET scan, but don't be surprised if your physician advises against it due to suboptimal "sensitivity" in its ability to find the handful of prostate tissue producing the PSA.
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1 Reaction@rlpostrp
Even at .2 a PET scan is unlikely to find anything. The PET scan can’t see metastasis smaller than 2.5 mm and according to the UCSF radiation oncologist, even 5 mm metastasis frequently can’t be seen. And that’s when the PSA is much higher.
You may be getting overwrought about having radiation in the future. You could get proton radiation, which would really reduce any chance of the problems you describe. I know when I had salvage radiation I had absolutely no side effects. Five years later, I started having some incontinence, but that’s after having both surgery and radiation which means either one of them could’ve caused the problem. It’s more likely to actually have the problem with surgery according to doctors I’ve spoken to and AI searches.
I can’t imagine any radiation oncologist wanting to do salvage radiation if your PSA just hits .1 but they might want to do adjunct radiation.
I really highly respected GU oncologist wrote this about doing Adjunct radiation, Which is what you really are referring to. You are pT3b, But do you fit even one of the other criteria?.
Dr. Efstathiou concluded as follows:
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur
Here is a link to the article supplied by @surftohealth88 originally
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html
You could follow what a couple of PCRI doctors have said. Wait until your PSA rises and they find something, and have it zapped rather than have your prostate bed radiated.
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3 Reactions@jeffmarc Thank you.
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2 ReactionsThanks - I didn't read "all" of the article, but I did come to the place where it said the following pertinent thing:
"Dr. Efstathiou noted that there has been an increase in the use of radical prostatectomy for patients with high-risk disease, which has concurrently led to an increase in post-operative radiotherapy indications and usage.1 He noted that adjuvant radiotherapy (i.e., when there is no evidence of residual disease – undetectable PSA) should be considered when there is a significant risk of future recurrence/microscopic residual disease in the surgical bed/pelvis based on pathology to improve local control and prevent dissemination/metastasis."
The later part of that statement: "He noted that adjuvant radiotherapy (i.e., when there is no evidence of residual disease – undetectable PSA) should be considered when there is a significant risk of future recurrence/microscopic residual disease", tells me that I am probably a candidate for radiation therapy. As a pT3b with EPE and surgical margins, and the spread into my left seminal vesicle (both of them removed) is such that even with two consecutive post-op PSA values of < 0.1 ng/ml, I am in that category of "future recurrence/microscopic residual disease." While I don't have "high risk" disease as he mentions prefacing his comments, I do haver higher intermediate risk post-op disease (and a Decipher Score of 0.5), and once your cancer is an EPE cancer that moves into the seminal vesicles, it is an ENTIRELY different situation...new game, new rules. Thanks for the link.
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2 Reactions@heavyphil Thanks Phil
I finally got myself to accept I the need to get radiation, with the comments on this site. I was hoping not to antagonize the pelvic area because of the hypersensitivity of the nerve and still have significant pain in the area. As far as the radiation and ADT, l realize it is no different than if I went with radiation originally minus the prostate this time and the cancer left behind has had nothing to eradicate or slow down growing and needs to be radiated. Thanks again to everyone, knowing and accepting which way to go lowers my stress considerably. I will get my decipher test next week and my psma test is December 4.
Thanks and best wishes to all.
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2 ReactionsNothing. Normally have a PSA 90 days after surgery, every 90 days after that for a year. If your PSA is climbing on each of those PSA tests then you need further investigation probably starting after the 3rd PSA test. PSA normally show s 0.2 or less after surgery. Mine was 0.1 then the second PSA showed .09 on second PSA. My next two are for satisfaction purposes, then I'll go every 6 months for a year, then every year thereafter. Hold off on the PET scan (too soon) as it is only 80% accurate, plus its expensive depending on insurance. Your choice.
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