What is best next treatment after 20 years of active surveillance?

Posted by qldodge @qldodge, Oct 13 2:29pm

In 2005, I had prostate cancer surgery with Gleason = 7 (3 +4), 40%, pT2c, pNx, pMx.

In 2013 PSA blood test, my PSA was 0.12. It had been < 0.1 since surgery.

In 2016 PSA blood test, my PSA was 0.24, the first time > 0.2.

Now in 2025 after 20 years of active surveillance and a wonderful life with no problems from prostate cancer (sexual function good with sildenafil), I need to reassess my treatment options.

In the last six (6) weeks, I’ve had my semiannual PSA blood test, a PSMA PET/CT scan, and an MRI scan of the pelvic.

My PSA was 1.1. My PSADT has been > 36 months since it became detectable.

The PSMA PET/CT scan shows “asymmetric increased activity in the prostatectomy bed along the anterolateral aspect of rectum highly suspicious for locally recurrent disease with SUV = 18.7 and increased activity in right external iliac node suspicious for nodal metastases with SUV =8”.

The MRI scan shows in prostate bed the following. “Asymmetric early enhancing tissue along the right posterior vesicourethral anastomosis measures 1.1 x 0.7 cm. Adjacent irregular enhancing tissue extending along the right anterior peritoneal reflection near and focally abutting the adjacent rectal wall measures 1.5 x 0.6 cm,”

I’m 87 years old in excellent health with no health problems except for prostate issues. I’m active. I run 4 days per week. I’m seeking a treatment that provides 15 years with the least quality of life effects from prostate cancer. (???)

I’ve been impressed with the prostate cancer treatment knowledge in this forum and would appreciate any advice.
Quincy

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jeff Marchi @jeffmarc

In 2016 when our PSA hit .24 you should’ve had salvage radiation. That would’ve probably killed all the remaining cancer cells and left you without a problem today. In 2014 when my PSA hit .2, 3 1/2 years after a prostatectomy I was immediately given salvage radiation.

You could talk to a radiation oncologist and find out if it’s possible to zap the active metastasis you have.

You could just let it go, but dying of prostate cancer is extremely painful. My father died of it at 88 and the last few weeks he was unable to communicate with anybody because the amount of morphine he was on was too much to be able to talk. When I was younger, he had his teeth ground down and crowned without Novacaine!

Since your cancer has spread to multiple places, you could have chemo or Pluvicto. That’s something you have to discuss with an oncologist. Another option, which might work for you is to get on Nubeqa. It is able to keep your PSA down and keep your cancer from growing with testosterone present. They can also stop the existing cancer from growing and spreading. Another thing you could speak to your doctor about. You could do that instead of getting on ADT, which could be a problem because of the side effects especially at 87. Nubeqa Has very few side effects, I know a lot of people in their 80s using it alone. I’m 77 and it has kept me undetectable for the last 23 months, eight of which I didn’t use ADT. I’ve had PC for 15 years and started with a 4+3. I do have BRCA2, which is why it keeps coming back.

Well, there are A number of options to speak with doctors about

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What is BRCA2

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In reply to @asolidrock "What is BRCA2" + (show)
Profile picture for asolidrock @asolidrock

What is BRCA2

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@asolidrock
A genetic problem where the genes cause your body to be unable to correct errors in your DNA. They actually make a drug called a PARP inhibitor to enable your body to correct those errors if you have BRCA2.

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Profile picture for jeff Marchi @jeffmarc

@asolidrock
A genetic problem where the genes cause your body to be unable to correct errors in your DNA. They actually make a drug called a PARP inhibitor to enable your body to correct those errors if you have BRCA2.

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Wow that's awesome. They did genetic testing on me but don't know what it says

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Profile picture for asolidrock @asolidrock

Wow that's awesome. They did genetic testing on me but don't know what it says

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@asolidrock
You need to ask whoever did it what the results were. They probably found nothing so they didn’t mention it, but you want to know for sure.

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Profile picture for jeff Marchi @jeffmarc

@asolidrock
You need to ask whoever did it what the results were. They probably found nothing so they didn’t mention it, but you want to know for sure.

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I'll ask my oncologist when u see him.

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I don't have anything to add, @michaelcharles said, you have a variety of choices.

You are 87, describe a generally good health and lifestyle...

So, like the rest of us, do we treat, if so, what's the clinical data supporting that, when, with what and for how long..?

I have seen where a PSADT of greater than 12 months is a clinical data piece indicating you can consider continuing to actively monitor and decide later if the clinical data changes.

There is also the "no ADT" option, MDT only to the locations you've identified. There is some data that says it can push back the need for systemic therapy. From my foxhole, it's like the active surveillance option, you can do something later, repeat MDT, go on systemic therapy, heck as @jeffmarc says, there is mono systemic therapy using ARIs which may not have the same annoying side effects as Lupron, Orgovyx...

You could choose to be aggressive and combine systemic therapy, short term, 6 months say with MDT.

Choosing options 1 or 2 may buy you time for new treatment choices brought on by medical research to come ino play in any decision you and your medical team may (if you even do) need to make in the future.

The clinical data you describe does not put you in high risk so the third option may not be a fit.

As to @heavyphil comment about SRT and @jeffmarc response, got it, think we all understood the intent was to include radiation to the prostate bed based on the clinical data. It does speak to the importance though of terminology and their definitions so that when we are using terms, there is clarity, precision and common understanding of what we are saying.

As to radiation and concerns about "side effects." I may not be the best example. I've done SRT, WPLN and SBRT. That equates to 69 times on the table, 155 Gya total. Side effects, nada, zip, zilch, why, who knows, but I have a great radiologist, she has a great team, she has high standards, and the planning software and delivery systems are advanced. She showed me the 3D software planning tool, when I was doing WPLN she took my wife into the control room to show her the process, Star Wars...As an aside, before the anesthesiologist put me out for my cardio ablation, I looked around the operating room, same, a dazzling array of medical technology!

There are varying systems so discuss with your radiologist.

Kevin

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Profile picture for qldodge @qldodge

Thanks for all your thoughtful replies. My medical center is a center of excellence that is a member of NCCN. When my PSA started rising after prostate cancer surgery, the center’s policy was to respond with salvage therapy when the PSA >=0.5. Since my prostate cancer was growing slowly (PSADT>36 months), I decided instead to continue active surveillance.

My 20 years of active surveillance was so side-effects free that I am hesitant to start radiation of the wide pelvic area that includes the prostate bed plus the pelvic lymph node group with the high probability of QOL side effects.

I am reviewing with advice to first radiate the lymph node area with SBRT. This lymph node procedure has a history of only minor side effects. If advised, this procedure could also include short term ADT or ADT +. This would at least reduce the probability of distant metastases and increase probability of longer overall survival.

I would still have the cancerous area in the prostate bed. If my PSADT remains > 36 months, could I delay for a while? Is there a systemic option? I would be interested in the experience of anyone that had radiation of the prostate bed area after recurrence: Success? Side effects?
Thanks again.

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@qldodge Thank you for the additional information.

I’ve had radiation of the pelvic bed area after a recurrence. I do not presently have any side effects and my PSA is < 0.01. However, I had tbe radiation treatment less than 5 years ago and everyone really is different with so many variables. If you and your medical team decide that this treatment makes sense for you, I would recommend basing your side effect decision on any recent studies (< 3 years old) of patients having salvage radiation treatment with a large enough study population to provide meaningful side effect data for 5 years after treatment.

As commented by others, I would not envision salvage radiation now. Only because salvage radiation to the pelvic bed is typically only conducted when PCa is believed to be only in the prostate bed. Once PCa has spread beyond the prostate bed, the treatment is more typically systematic (ADT/ARSI) and in some cases, spot radiation for tumors which are PSMA scan identified and possible to be successfully treated with radiation.

Why? Once PCa shows up in a lymph node on a scan, you know that PCa cells are traveling in your blood stream. You see the tumor sites on a scan, but do not see the locations of all PCa cells.

Your historical PSADT is indicative of slow growing PCa. If you present PSADT remains unchanged (last 12 months), it is possible that your PCa has not mutated to a more aggressive form and you can make a decision based upon the time based probability of bones or vital organs being affected.

More typically, treatments focus at this stage of PCa progression on minimizing the probability of affecting quality of life, and more specifically on reducing the probability of spread to bones and vital organs.

Your health and specially your fitness provides you with an advantage, if you choose a systematic ADT/ARSI treatment, as all recent studies show a correlation between those patients with a higher level of cardio /strength fitness and lower side effects. Many in this forum can provide you with details of their diets and fitness programs while undergoing ADT/ARSI therapy.

You are exceptional in your health and likely your genes, so I’m not sure that any statistics or “convention” applies to you!

Best wishes for continued great health.

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If the prostate cancer goes out of the prostate to 3 pelvic & 1 para-aortic lymph nodes per CT, and leuprolide is started right away, without a recent biopsy or MRI, can a man ever go back on AS? A CT was done < 2mos later and showed "Lymph nodes: normal" and "No evidence of metastatic disease". Efforts to have more confirmation of metastasis were thwarted by about 5 different oncologists & urologists. They all just wanted to continue the same treatment indefinitely. Is it okay to go back on AS after Possible metastasis? Has anyone been able to do that? ADT w/undetectable PSA for almost 5yrs I know has taken some toll!

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Profile picture for Jonesfit65 @jonesfit65

If the prostate cancer goes out of the prostate to 3 pelvic & 1 para-aortic lymph nodes per CT, and leuprolide is started right away, without a recent biopsy or MRI, can a man ever go back on AS? A CT was done < 2mos later and showed "Lymph nodes: normal" and "No evidence of metastatic disease". Efforts to have more confirmation of metastasis were thwarted by about 5 different oncologists & urologists. They all just wanted to continue the same treatment indefinitely. Is it okay to go back on AS after Possible metastasis? Has anyone been able to do that? ADT w/undetectable PSA for almost 5yrs I know has taken some toll!

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@jonesfit65 if you don’t get a reply from @jeffmarc, I recommend reposting your question as a standalone topic. Many can comment on this topic.

If you are near Albuquerque, I recommend getting an appointment at the UNM Cancer Center with one of their Genitourinary Oncologists, who can walk you through their protocol for ADT treatment “holidays.”

I believe that the specifics will depend upon your specific pathology and treatment history.

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Profile picture for Jonesfit65 @jonesfit65

If the prostate cancer goes out of the prostate to 3 pelvic & 1 para-aortic lymph nodes per CT, and leuprolide is started right away, without a recent biopsy or MRI, can a man ever go back on AS? A CT was done < 2mos later and showed "Lymph nodes: normal" and "No evidence of metastatic disease". Efforts to have more confirmation of metastasis were thwarted by about 5 different oncologists & urologists. They all just wanted to continue the same treatment indefinitely. Is it okay to go back on AS after Possible metastasis? Has anyone been able to do that? ADT w/undetectable PSA for almost 5yrs I know has taken some toll!

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@jonesfit65
When you say “go back on active surveillance” do you mean just stay on ADT? If you are on ADT, you are not on AS. You’re just suppressing the currently active cancer.

A PSE test could prove that you either have cancer or do not. It’s at least 94% accurate. If it finds you have cancer, then you need a biopsy. If it doesn’t, then you could stay on “active surveillance”

If you’re talking about going back on AS without ADT Then you need to get PSA test pretty regularly, I’d want one monthly for at least three or four months, then quarterly.

You don’t mention what your PSA got up to before they put you on Lupron. It must’ve been pretty low.

Prostate cancer never really goes out of the prostate. It may shrink due to ADT, but it’s still there. Same thing with your Lymph nodes. ADT can shrink the cancer so it doesn’t show up, But you stop ADT and it is likely to rise up again.

Staying on ADT alone, for as long as you are, can make you castrate resistant and can make the whole thing worse in the future. Median survival once you become castrate resistant is two years.

The thing is ADT does not eliminate prostate cancer. It suppresses it, reduces it in size stops it from spreading, but it’s still there.

Have you been to a center of excellence to be checked out? It just sounds like the right people are not treating you if you are on ADT for five years and have nothing else done. A real strange situation these doctors have put you in.

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