Post RT 6 years after RP with Rising PSA now at .28.

Posted by cemezzina47 @cemezzina47, Sep 29 8:55am

In 2018 I was diagnosed with PC with Gleason of 7 with no spread outside of prostate gland. Post RP PSA < .01. In 2024 levels rose from .08 to .67 and immediately had 39 sessions of RT which sent PSA down to .07. Now rising again 18 months after RT at .28. My oncologist at MSK suggesting waiting until levels get to to .8 or 1 before further intervention. I feel something needs to be done now or am I jumping the gun?

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Profile picture for jeff Marchi @jeffmarc

@cemezzina47
Did they use SBRT radiation to zap that tumor they found? I suspect they did. The thing is, your cancer has escaped the prostate and is almost definitely in your bloodstream. That doesn’t mean it will come back right away, but it can come back in bone or other organs. Doctors almost always prescribe ADT to prevent that from happening. There are other doctors in New York and it might be time to get a second opinion from one of them. Good options are Mount Sinai Health System and the Langone medical center

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@jeffmarc thanks for your input. Much appreciated.

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Profile picture for jeff Marchi @jeffmarc

@cemezzina47

I was on Lupron for seven years. After that I went on Orgovyx just another ADT. Most of us can get adjusted to ADT, Some gets severe Fatigue But that is not the norm. Exercise can offset the fatigue brought on by low testosterone caused by Lupron and similar drugs.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a bone doctor that spoke to a webinar, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times.

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@jeffmarc
Hi Jeff. After your recurrence after SRT and starting long term ADT have you taken any ADT "holidays"? Also, how often is your PSA checked now? Thanks.

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Profile picture for perrychristopher @perrychristopher

@jeffmarc
Hi Jeff. After your recurrence after SRT and starting long term ADT have you taken any ADT "holidays"? Also, how often is your PSA checked now? Thanks.

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@perrychristopher
My PSA has been checked monthly for the last eight years.

I did take a holiday from ADT last year. I was off for eight months. I spoke to my oncologist about this choice and she agreed that after I’ve been on ADT for almost 8 years my testosterone was very unlikely to come back, Much less come back quickly.

My testosterone was coming back at a relatively rapid rate. The first couple of months it went up 80% each month the last few months it was going up around 25% every month. Because I have BRCA2 my oncologist, wanted me back on ADT. While I am castrate resistant, some of the cancer is not, So ADT does have its benefits.

I’m actually going to speak to my oncologist next week. I’m going to Request that I stop ADT for six months and started it again stop and start. My testosterone won’t rise too much And Nubeqa will keep my PSA undetectable. This is an attempt to prevent my prostate cancer from becoming neuroendocrine.

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be careful with fosamax. You must really take care of your teeth and gums. Be sure all dental issues are taken care of prior to fosamax regimen. It interrupts bone healing.

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Profile picture for jeff Marchi @jeffmarc

@perrychristopher
My PSA has been checked monthly for the last eight years.

I did take a holiday from ADT last year. I was off for eight months. I spoke to my oncologist about this choice and she agreed that after I’ve been on ADT for almost 8 years my testosterone was very unlikely to come back, Much less come back quickly.

My testosterone was coming back at a relatively rapid rate. The first couple of months it went up 80% each month the last few months it was going up around 25% every month. Because I have BRCA2 my oncologist, wanted me back on ADT. While I am castrate resistant, some of the cancer is not, So ADT does have its benefits.

I’m actually going to speak to my oncologist next week. I’m going to Request that I stop ADT for six months and started it again stop and start. My testosterone won’t rise too much And Nubeqa will keep my PSA undetectable. This is an attempt to prevent my prostate cancer from becoming neuroendocrine.

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Thanks. Good luck with your appointment next week.

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Profile picture for knoctor @knoctor

be careful with fosamax. You must really take care of your teeth and gums. Be sure all dental issues are taken care of prior to fosamax regimen. It interrupts bone healing.

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@knoctor
In the six years, I took Fosamax I had two tooth implants done.

When they do an implant, they first put in some bone and have your Bone grow around it For about three months, then you come back and they put the screw in that will hold the tooth.

Never had any problem with the bone growing due to Fosamax. The two teeth are in solid.

Sure didn’t interrupt my bone healing.

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You ask...". I feel something needs to be done now or am I jumping the gun?"

There is not necessarily a "right" answer the forum can give you.

In part, clinical data can guide discussions with your medical team, PSADT, PSAV, GS, GG, pathology report. I think the further you get in this journey the less the latter "matter."

You don't say if you have had imaging to locate the site (s) of "activity." Results can certainly inform discussions with your medical team. At the PSA you describe PSMA imaging has statistically a roughly 2/3 chance of locating activity.

So, if not, discuss with your medical team.

I have criteria in conjunction with my medical team about clinical data that constitutes a decision to image.

MY criteria;

Three or more PSA tests spaced three months apart showing increases.

AND

PSA between .5-1.0

At that point we image and then discuss treatment choices.

You will have choices:

Do nothing until PSA reaches a level you and your medical team agree upon.

There are clinical trials that indicate with Oligometastatic disease MDT can push back the need for systemic therapy. There are others which point to combining short term systemic therapy with MDT to manage recurrence - https://www.urotoday.com/conference-highlights/astro-2025/astro-2025-prostate-cancer/163508-astro-2025-intermittent-adt-comprehensive-stereotactic-body-radiotherapy-for-hormone-sensitive-oligometastatic-prostate-cancer-crop-mature-results-of-a-prospective-trial.html?utm_source=newsletter_14672&utm_medium=email&utm_campaign=astro-2025-advancing-prostate-cancer-care-from-reducing-toxicities-to-milestones-in-metastatic-disease

You could skip imaging and just gp on systemic therapy. Your clinical data says there is activity. This is the "throw away" course of action for me, I want to know where it is and see what my radiologist can do. I do keep in mind that imaging won't show all activity, aka micro metastatic disease so short term systemic therapy is always in play for me.

At what level do you and your medical team decide to "act!?"

Again, follow the clinical data and discuss with your medical team. Were this BCR for the first time after surgery likely you "missed" the window to act...it's not...

Again, discuss with your medical team, what do they say? I have seen some say anywhere from 2-10!

Me, I am high risk, so somewhere between .5-1.0 is time to do something

Kevin

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From the information you have provided, it doesn’t strike me that your impulse to “do something now” is jumping the gun. But, as has been stated, that is something to work out with your care team.

My experience for context: Radical prostatectomy in 2015. Pathology showed Gleason 3+4 with positive margin. Prolaris score put me at the nigh end of intermediate risk. Ten years of undetectable PSA (< 0.1). Then this summer, my PSA was 0.11, and I had a palpable nodule in the prostatic fossa. A PSMA PET scan was ordered immediately (and insurance approved) which confirmed that the nodule was intensely active (SUV =13) and favored to be a local recurrence. No evidence of metastasis. Follow up pelvic MRI further supported the local recurrence. Three months later, my PSA is still 0.11 (actually, 0.094 on an ultra-sensitive test) and I just started salvage radiation (38 IMRT sessions) last week.

So despite my low PSA, I had physical evidence of a nodule that seemed to set everything in motion. If not for that, I suspect surveillance would have been recommended.

Best wishes going forward.

M

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Profile picture for jeff Marchi @jeffmarc

@cemezzina47

I was on Lupron for seven years. After that I went on Orgovyx just another ADT. Most of us can get adjusted to ADT, Some gets severe Fatigue But that is not the norm. Exercise can offset the fatigue brought on by low testosterone caused by Lupron and similar drugs.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a bone doctor that spoke to a webinar, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times.

Jump to this post

@jeffmarc
Hi Jeff,
After undergoing 28 sessions of proton radiation therapy, I had my first blood test two months later. My PSA level dropped from 5.6 before the treatment to 0.03 now, but my testosterone level decreased from 406 to 13. I received two injections of Eligard before and after the treatment. The drop in testosterone to 13 is clearly due to Eligard suppression. In a few months, when testosterone levels rise again, will PSA levels also increase? Can the effectiveness of the radiation therapy only be confirmed if PSA remains below 0.1 even after testosterone levels return to normal?
Let me know if you'd like help refining this for a medical consultation

REPLY
Profile picture for lifutang @lifutang

@jeffmarc
Hi Jeff,
After undergoing 28 sessions of proton radiation therapy, I had my first blood test two months later. My PSA level dropped from 5.6 before the treatment to 0.03 now, but my testosterone level decreased from 406 to 13. I received two injections of Eligard before and after the treatment. The drop in testosterone to 13 is clearly due to Eligard suppression. In a few months, when testosterone levels rise again, will PSA levels also increase? Can the effectiveness of the radiation therapy only be confirmed if PSA remains below 0.1 even after testosterone levels return to normal?
Let me know if you'd like help refining this for a medical consultation

Jump to this post

@lifutang
As you probably heard everybody is different. Your results sound great, but you don’t give us any idea what your initial biopsy showed. Your PSA wasn’t too high so it sounds like your cancer wasn’t too aggressive.

What was your Gleason score?

Did you have anything found in your biopsy like cribriform, Seminal vesicle invasion (SVI). ECE, EPE or intraductal? All of those can make your cancer more aggressive and can increase the chance of it reoccurring.

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