Being treated for Gleason 9

Posted by donald76 @donald76, Jul 18, 2025

I was diagnosed wth Gleason 9 prostate cancer. A petscan and MRI both showed the cancer was localized and had not spread. I know that is not always 100% accurate. Was put on orgovyx immediately and had 28 radiation treatments. Will be on orgovyx for 18 months. I am 75 years old. I am concerned and wondering what my chances are and what should I expect.

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Profile picture for mjp0512 @mjp0512

@ucla2025 Not undetectable yet but hopefully soon. Last PSA jumped a little after IMRT, but the sample was taken only 5 weeks after completing radiation. Dr thought the jump was insignificant and possibly due to aggravation by radiation or just standard lab variance. Next test is in about 3 weeks so hopefully down to the magic undetectable by then. We'll see.

PSA is a pretty strong indicator of recurrence. Doc said that they won't scan again until/unless PSA rises a significant amount. In my case, that means a meaningful jump after the next test or a full point or 2 above 0.19 if that turns out to be nadir. Next PSA is significant because it is treatment start plus 9 months. GUO is looking for a new low number (nadir). Fingers crossed.

Ah...Spring. Used to be flowers and nature's rejuvenation. Now in means blood tests. bone scans, and Dr's visits, and back on the edge for watching numbers. So it goes in the PCa world...🤣🤣🤣

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@mjp0512
After radiation, the PSA can jump around. I know people that have taken three years before their PSA hit the bottom. The rule is the wait until the PSA hits two points above the bottom it ever hit. As soon as it’s been after your radiation, you really do need to wait a while before you decide to have hit bottom and started coming up. The two point rule doesn’t illuminate having a PSMA PET scan if your PSA hits 1.

What your doctor has decided really is the standard of care most doctors would follow.

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Profile picture for brianjarvis @brianjarvis

@canadaanne It’s important to realize that of all cancers men might be diagnosed with, prostate cancer has one of the lowest mortality rates - a very low risk of dying from it. (See attached chart.) Urologist’s are terrible at delivering the news.

(Data are from the American Cancer Society, 2024: https://acsjournals.onlinelibrary.wiley.com/doi/full/10.3322/caac.21820)

(I started getting PSA tests in 2000, was diagnosed with PCa in 2012, was treated in 2021, and now just get PSA tests every 6 months.)

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Gotta say mine was pretty good with the disclosure. Very matter of fact and even suggested a treatment option before turning me over to the cancer machine. The more time that goes by the more disgusted I am with the cogs in the machine. Private practice money grubbers. Getting close to the point where I will leave them and if I have a reoccurrence with move on to a center of excellence.

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Profile picture for jeff Marchi @jeffmarc

@mjp0512
After radiation, the PSA can jump around. I know people that have taken three years before their PSA hit the bottom. The rule is the wait until the PSA hits two points above the bottom it ever hit. As soon as it’s been after your radiation, you really do need to wait a while before you decide to have hit bottom and started coming up. The two point rule doesn’t illuminate having a PSMA PET scan if your PSA hits 1.

What your doctor has decided really is the standard of care most doctors would follow.

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@jeffmarc
Hi Jeff

I understand the PSA bounce after radiation, but shouldn't the Orgovyx/Nubeqa combo bring it to undetectable at some point? I've been on them for 9 months. GUO Doc said he was looking for nadir sometime this Spring which is my next blood test.

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Profile picture for mjp0512 @mjp0512

@jeffmarc
Hi Jeff

I understand the PSA bounce after radiation, but shouldn't the Orgovyx/Nubeqa combo bring it to undetectable at some point? I've been on them for 9 months. GUO Doc said he was looking for nadir sometime this Spring which is my next blood test.

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@mjp0512
Yes, those two drugs should bring your PSA down to undetectable. You didn’t mention it in the last message. Had to go back to seven months ago to see you mentioning it.. Has your doctor mentioned that you might be Castrate resistant? When your PSA doesn’t drop to undetectable after you’ve been on drugs like that for this long castrate resistant is a possibility.

I became castrate resistant to Lupron, but I’m now on Orgovyx And it alone can’t keep my PSA down, but Nubeqa Does do it for me. I’ve been undetectable for 27 months after 16 years. Before I was on Nubeqa I was on Zytiga for 2 1/2 years and my PSA was only undetectable for one month. What I’m getting at is the drugs can work differently for some people.

I think your only option here is to wait a little bit longer and see what the next blood test shows. If your PSA keeps rising, you can get a PSMA pet test and see if you’re still light up in a lot of spots. If so, you could get Pluvicto.

I am a little puzzled, though, you mentioned lighting up quite a bit on the PET test and yet you had radiation. Radiation isn’t designed to remove multiple metastasis, The treatment for that is chemo or Pluvicto. Am I missing something here?

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Profile picture for jeff Marchi @jeffmarc

@mjp0512
Yes, those two drugs should bring your PSA down to undetectable. You didn’t mention it in the last message. Had to go back to seven months ago to see you mentioning it.. Has your doctor mentioned that you might be Castrate resistant? When your PSA doesn’t drop to undetectable after you’ve been on drugs like that for this long castrate resistant is a possibility.

I became castrate resistant to Lupron, but I’m now on Orgovyx And it alone can’t keep my PSA down, but Nubeqa Does do it for me. I’ve been undetectable for 27 months after 16 years. Before I was on Nubeqa I was on Zytiga for 2 1/2 years and my PSA was only undetectable for one month. What I’m getting at is the drugs can work differently for some people.

I think your only option here is to wait a little bit longer and see what the next blood test shows. If your PSA keeps rising, you can get a PSMA pet test and see if you’re still light up in a lot of spots. If so, you could get Pluvicto.

I am a little puzzled, though, you mentioned lighting up quite a bit on the PET test and yet you had radiation. Radiation isn’t designed to remove multiple metastasis, The treatment for that is chemo or Pluvicto. Am I missing something here?

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@jeffmarc

I don't think you're missing anything. IMRT was to prostate only. Treatment for mets is Orgovyx/Nubeqa until such a time as chemo is needed. I'm a CHF patient as well so cancer treatment is tiptoeing around heart failure treatment. I don't think Pluvicto is in the cards. I have a pesky TP53 mutation. I guess we'll see what the next numbers bring. I'm strongly hoping for < 0.1

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The interventions will kill off the known cancer and hopefully you will live cancer free for the rest of your life. But you started off at Gleason 9 and the odds of a recurrence are significant. If this happens, the docs will go after it again. Play it one day at a time.

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