Prostate Removed--Rising PSA: What are my options?

Posted by rnpalarino1 @rnpalarino1, Apr 6 8:26am

I am a healthy (I think) 77 year old male.

My prostate was removed over 3 years ago. Two months after the operation it was < .01.

My PSA is now .93. I realize this reading is still low but indications are it continues to rise. For example 4 months ago it was .53.

Unfortunately I cannot undergo radiation therapy because I have a J-Pouch. For those of you who don't know, a J-Pouch is formed after your colon is removed because of inflammatory bowel disease. Consequently any radiation to that area could possibly damage the J-Pouch.

I am asking if anyone else on this forum has the same problem and what are my options?

Thank you in advance for your advice.

Nick

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At that PSA you statistically have around a 67% chance of the scan locating any recurrence. That increases if your PSADT is rapid.

You could treat now based solely on your increase in PSA, not a preferable choice. That treatment could include doublet or triplet therapy, radiation to the prostate bed and pelvic lymph nodes could be added.

That may be too aggressive and you may want to actively monitor, have labs and consults every three months. Based on the clinical data, image again, if there is actionable data, decide on treatment, if, when, what, how long...

You likely have time to gather more actionable clinical data as some studies suggest it can be up to 8 years before troubling metastases "show up."

Still, it's back, you'll want to know your clinical data, PSADT, PSAV, location of recurrence so you can make the best decision.

Kevin

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You have a perplexing situation. On one hand an (apparently) rapidly rising PSA in the absence of a prostate glad. OTOH, PSMA PET is negative for any tracer uptake in the usual areas. Everything I've seen has said that with a PSA of nearly 1 the PSMA/PET scan should light up if you have any disease. Mine was 0.2 and the Pylarify agent showed moderate uptake in a couple of pelvic nodes.

I would retake the PSA as soon as possible. If it goes back to a level that's less than 0.2 then there was likely an anomaly that caused the 0.9 reading. If it continues to rise, especially if at the same rate, I would push to repeat the PSMA scan as it does help to know where small tumor(s) may be. If outside of your pelvis and far enough away from the intestinal surgery then it may be amenable to spot radiation. Regardless, if the PSA does continue to rise, I'd think about getting on ADT as soon as possible after doing a second PSMA scan. Good luck!

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I have a similar situation psa was 0 for 4 years and over the past 3 years has went from 0 to 2.6. Had many scans with 0 result until recently had a PSA pet? it showed potential trace in bladder bed but since this was this area was radiated they are reluctant to do more.
It is rising at a slow but steady result and I am not looking for Alagar shots as I had these before they could do radiation since I had kidney cancer at the same time(not related) 77 years old and still very active Any one else in similar situation and any suggestions

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correction I am 74 years old

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@activesenior15

correction I am 74 years old

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I wish to add that my PSA was at a fairly level 7 and my doctor was not too concerned about it but since my dads family had a history of it, grandfather died of it, 2 of my uncles died of it, one cousin died of it, and my father had prostate cancer (he died at 95 but not of cancer) I forced the doctor to get a biopsy which I had to argue like hell for.(my family doctor retired so I had a fairly new doctor) I had the biopsies( and man was that painful) but as it turned out of the 12 samples taken the average gleason was 9.5. This even though my psa was level at 7. I had a robotic radical surgery at at that time I developed instant ED This is over 6 years ago now and the nerves has only slowly grown but not to the stage of being able to have a normal errection

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Hello Everyone:

First thank you for your replies and support. This is a great group.
Second I want to provide an update on my current status and get your opinions on next steps.
My prostate was successfully removed in 2021. For two years my PSA numbers were insignificant. And I had no problem with urination, and sexual activity decreased but nothing a 77 year old man could not live with.

In 2023 the numbers began to rise about every 4 months; .15, .29, .53 and now .92. MD Anderson, Jacksonville, did a PET CT Prostate GA-68 Initial Staging Scan and did not find any cancer.

Since they cannot find any cancer there is no plan for radiation, however my oncologist, Dr. Zaiden, recommends I begin hormone treatments (Relugolix) to bring my testosterone down to starve the cancer.

As many of you know Relugolix is a relatively new treatment, a pill, which can be given for a period of time and stopped if necessary with good results. There are some after effects of the medication which concern me.

I have given some thought to not taking the Relugolix and take my chances but wanted to get your opinion.

Thanks again

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@rnpalarino1

Hello Everyone:

First thank you for your replies and support. This is a great group.
Second I want to provide an update on my current status and get your opinions on next steps.
My prostate was successfully removed in 2021. For two years my PSA numbers were insignificant. And I had no problem with urination, and sexual activity decreased but nothing a 77 year old man could not live with.

In 2023 the numbers began to rise about every 4 months; .15, .29, .53 and now .92. MD Anderson, Jacksonville, did a PET CT Prostate GA-68 Initial Staging Scan and did not find any cancer.

Since they cannot find any cancer there is no plan for radiation, however my oncologist, Dr. Zaiden, recommends I begin hormone treatments (Relugolix) to bring my testosterone down to starve the cancer.

As many of you know Relugolix is a relatively new treatment, a pill, which can be given for a period of time and stopped if necessary with good results. There are some after effects of the medication which concern me.

I have given some thought to not taking the Relugolix and take my chances but wanted to get your opinion.

Thanks again

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Hey @rnpalarino1
I've had a similar journey so far except when my PSA started to rise, we did salvage radiation therapy along with Relugolix. I'm a little younger though at 62.

My PSMA PET scan was negative as well but the feeling was that there had to be some cells still growing in / near the site of the prostate bed. My PSA had started to rise within 6 mos of the operation.

I'm in 2 years with the meds and this point and my sense is from reading and my experience that Relugolix is very effective at starving cancer cells. My PSA is back down to < 0.006 (knocks wood) The side effects are well documented and seem to vary in intensity person to person. My saving has been to keep moving, walk, run, work out, motorcycle and I'm still working. I do get fatigued in the afternoons. If I'm not doing anything a nap helps.

Having said that, I'm about to start a treatment holiday after 2 years. My feeling and the feeling of the med team is that the Relugolix is so effective, we really don't know how much cancer, if any, is left in my system. Since the meds started with the radiation, did the radiation do it's job or is the Relugolix keeping the PSA down? We won't know till I go off and see what happens. I can always go back on if needed.

Having been through the drug treatment once, if I had to do it again? (..and I may) If it kept me around to play with my grandkids a few more years, yup. I'd do it again. It's a very personal decision though.

Best of Luck to you!

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@rnpalarino1

Hello Everyone:

First thank you for your replies and support. This is a great group.
Second I want to provide an update on my current status and get your opinions on next steps.
My prostate was successfully removed in 2021. For two years my PSA numbers were insignificant. And I had no problem with urination, and sexual activity decreased but nothing a 77 year old man could not live with.

In 2023 the numbers began to rise about every 4 months; .15, .29, .53 and now .92. MD Anderson, Jacksonville, did a PET CT Prostate GA-68 Initial Staging Scan and did not find any cancer.

Since they cannot find any cancer there is no plan for radiation, however my oncologist, Dr. Zaiden, recommends I begin hormone treatments (Relugolix) to bring my testosterone down to starve the cancer.

As many of you know Relugolix is a relatively new treatment, a pill, which can be given for a period of time and stopped if necessary with good results. There are some after effects of the medication which concern me.

I have given some thought to not taking the Relugolix and take my chances but wanted to get your opinion.

Thanks again

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Can the hormone come from another organ, ie the kidneys?
Or just inflammation?

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Hi All:

It is April 26, 2024. Today I began taking Relugolix three pills the first day and one each day after that. Just to remind, I am 77 years old, had my prostate removed in 2021. PSA remained insignificant for two years and then began to slowly climb. It is now .93. I cannot receive radiation because of intestinal operations (J-Pouch) So oncologist has me taking Relugolix to see if the PSA numbers will go down. I don't know what the side effects will be but right now I am going to go exercise. Keep the faith.

Nick

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@rnpalarino1

Hi All:

It is April 26, 2024. Today I began taking Relugolix three pills the first day and one each day after that. Just to remind, I am 77 years old, had my prostate removed in 2021. PSA remained insignificant for two years and then began to slowly climb. It is now .93. I cannot receive radiation because of intestinal operations (J-Pouch) So oncologist has me taking Relugolix to see if the PSA numbers will go down. I don't know what the side effects will be but right now I am going to go exercise. Keep the faith.

Nick

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Best wishes for success on your journey!

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