Quandry on my chosen pathway

Posted by dribbles @dribbles, Feb 25 12:57pm

I was diagnosed with PC late Dec .2025 at Mayo, MN. 1 smaller lesion, PSMA shows no spread. I decided I would do radiation SBRT /5 treatments with 6 months of Orgovyx. I've been on Orgovyx for 18 days , my Gleason score is 8, my previous PSA about 4 weeks ago was 6.0, my PSA yesterday was 9.4 , very alarming. My prostate is enlarged(77ml). I've had some concerning irregularities with urination sometimes normal sometimes intermittent, urinalysis yesterday shows no inflammation. My radiation team PA suggested non-infectious prostatitis may have caused the PSA spike. I'm wondering if it's possible I'm castration resistant now at the very start of ADT? I'm meeting with an Interventional Radiologist tomorrow to see if I qualify for a PAE procedure with the thought of shrinking the prostate and correcting urine flow before the radiation. They say I may be obstructed in the median lobe.
If it is non-infectious prostatitis (there is no diagnosis for that that I know of) then I'm worried my treatment pathway I've chosen of ADT and SBRT radiation may have future complications with the prostatitis. I'm wondering if I should go the RP route to avoid all this sideshow or if I would have similar urinary issues doing that.
I welcome anyone who has anything to add or things I should be asking or looking for. Neither the Radiologist or surgeon has suggested their pathway is correct.

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

Profile picture for dribbles @dribbles

Thanks Brian,
Unfortunately, they didn’t do testosterone baseline before they started Orgovyx. I ordered one myself from a private lab, which I’ll have in a couple days, but no baseline compare to.
My SUV Max was 8.9 and my mipsMA expression score was 3.
Gleason was 4+4 .
There were no other risk factors in the PSMA, MRI, or biopsy
I’ve not had any Genomic and genetic testing. I asked about doing those and they said they had no interest.
I met with the interventional radiologist today and discussed doing the PAE procedure prior to radiation. He said I’m a very good candidate for that. I would get good shrinkage and probable urinary stability. He didn’t think my urinary issues were much of an issue. If the shrinkage was significant it could possibly open up the Brachy door for me but I wouldn’t count on that.
I would have to wait 3 to 4 months for the PAE to heal before they would start SBRT.

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@dribbles The more information you have, the better you’ll be able to make a treatment decision.

With your SUVmax of 8.9, how does that compare with the SUVmax of your blood, liver, and parotid glands? (That’s how they’ll tell how aggressive it is.)

The genomic (biomarker) testing is especially important because it looks for genes, proteins, and tumor markers that tell more about the prostate cancer that might change treatment management. (I can understand about having no interest in genetic testing right now, but it may be of great value later.)

Genomic (biomarker) testing is always valuable - Decipher, Prolaris, OncotypeDx, or one of a dozen others. (Many guys today get Decipher; I had both Prolaris and OncotypeDx.)

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Profile picture for dribbles @dribbles

@jesse65
Thanks for your input Jesse,
Both my surgeon and radiation Dr at Mayo , Rochester say that my decisions or their treatment recommendation wouldn’t change based on genetic factors. They’re both highly regarded Drs and the reasons they gave were solid to me. The surgeon said they would get genetics in the removed prostate biopsy.
I have asked the radiation Dr to order it but haven’t heard back yet.

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@dribbles In a sense they are correct. You are getting treatment of some kind no matter what. Genetic issues would need to be managed later on with ADT, combos with -lutamides, PARPs, etc. if you even have mutations…that’s not something that’s going to help you now.
A Decipher test, however, IS very important since a high score could make you think twice about radiation as primary therapy; if your cancer were to recur after surgery, you would then have radiation as a back up.
Gleason 8 is aggressive; you need a Plan B and surgery (distasteful as it may be) might be your best first option all around. Best,
Phil

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Profile picture for heavyphil @heavyphil

@dribbles In a sense they are correct. You are getting treatment of some kind no matter what. Genetic issues would need to be managed later on with ADT, combos with -lutamides, PARPs, etc. if you even have mutations…that’s not something that’s going to help you now.
A Decipher test, however, IS very important since a high score could make you think twice about radiation as primary therapy; if your cancer were to recur after surgery, you would then have radiation as a back up.
Gleason 8 is aggressive; you need a Plan B and surgery (distasteful as it may be) might be your best first option all around. Best,
Phil

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@heavyphil
thanks again for all the input , Phil you said "a high score could make you think twice about radiation as primary therapy; if your cancer were to recur after surgery, you would then have radiation as a back up." If the cancer were to recur after radiation I would also have radiation as a backup. Could you elaborate more on the distinction. Thanks

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Profile picture for dribbles @dribbles

@heavyphil
thanks again for all the input , Phil you said "a high score could make you think twice about radiation as primary therapy; if your cancer were to recur after surgery, you would then have radiation as a back up." If the cancer were to recur after radiation I would also have radiation as a backup. Could you elaborate more on the distinction. Thanks

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@dribbles
If you have radiation to the prostate and prostate bed as your initial treatment, then that area cannot be radiated again.

If you get a Metastasis somewhere else in your body, that can usually be radiated with SBRT radiation. There are some areas where it can damage nearby tissue and they won’t do it.

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Profile picture for jeff Marchi @jeffmarc

@dribbles
If you have radiation to the prostate and prostate bed as your initial treatment, then that area cannot be radiated again.

If you get a Metastasis somewhere else in your body, that can usually be radiated with SBRT radiation. There are some areas where it can damage nearby tissue and they won’t do it.

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So are you and Phil are saying that if I have a high decipher score the chances of recurrence with Radiation or Surgery is higher. Are the odds worse that I get a total kill of the PC in and around the bed with SBRT and ADT? If so, it may require cryo or HIFU + ADT for salvage or a difficult Prostatectomy + radiation. That salvage would not be as effective as the salvage Radiation and ADT in the prostate bed after Prostatectomy? For distant recurrence it would all be treated the same likely with SBRT.
Sorry to pose all the questions back at you, it is very helpful to get my head around this.

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Profile picture for dribbles @dribbles

@heavyphil
thanks again for all the input , Phil you said "a high score could make you think twice about radiation as primary therapy; if your cancer were to recur after surgery, you would then have radiation as a back up." If the cancer were to recur after radiation I would also have radiation as a backup. Could you elaborate more on the distinction. Thanks

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@dribbles You probably could NOT have standard SRT available to you with BCR if you have either IMRT or SBRT (Cyberknife) as primary therapy; it is because after those tx, you have received the maximum lifetime dose in that area.
You can, however, have ‘spot’ SBRT to a node or a body part outside the original radiated field.
That is why surgery may be preferred as primary therapy in a case where recurrence has a high possibility.
Phil

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Profile picture for dribbles @dribbles

So are you and Phil are saying that if I have a high decipher score the chances of recurrence with Radiation or Surgery is higher. Are the odds worse that I get a total kill of the PC in and around the bed with SBRT and ADT? If so, it may require cryo or HIFU + ADT for salvage or a difficult Prostatectomy + radiation. That salvage would not be as effective as the salvage Radiation and ADT in the prostate bed after Prostatectomy? For distant recurrence it would all be treated the same likely with SBRT.
Sorry to pose all the questions back at you, it is very helpful to get my head around this.

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@dribbles
Cryo and HIFU are used for initial treatment, not for salvage.

If you have radiation as your primary treatment it is possible to have salvage surgery, Not many doctors do it some specialize in it. The can result in permanent and continents and ED issues.

SBRT and ADT can give you long-term remission, A cure is very unlikely with prostate cancer unless you have a very mild case.

Issues are, if you have radiation there’s really no way to know what your prostate really had in it. There could be some very aggressive things found if you have surgery, but not if you have radiation. In my case, I went from a Gleason 3+4 to 4+3, I know many other people ended up with 4+5 even though they Had much lower scores from a biopsy. Those aggressive issues can make your cancer impossible to cure, even though you have a low Gleason to start with.

Just bringing these up for things to think about.

Yes, if you have a higher decipher score, it gives you a much higher chance of you having a reoccurrence sooner.

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Other guys have commented to the contrary to my comments that follow: they say that there are newer/better means of receiving a long course of low dose radiation, and that they have not had any consequences…”yet.” But that is a big “yet.”
My urologist doesn’t believe in Active Surveillance, and he has repeatedly told me that if you do radiation “first”, you have just turned your prostate into a walnut-sized chunk of scarred concrete that is nearly impossible to remove “after” that radiation, if your cancer comes back. Then you’ve got a big problem.
You just have to make the decision for yourself and what you feel is best. Doctors have a lot of “art” and mechanical “skill” to how they handle their patients. They may prefer radiation first for whatever reason when weighing all post-radiation outcomes. Other urologists like mine only do the RP and radiation thereafter, if and only if the cancer returns. Some urologists roll the dice with your life and put you on Active Surveillance with absolutely no way to know what the anatomic and microscopic disease features there are to your cancer which can never be known unless the prostate is removed. The Gleason Score does not have that capability…it is a 12-core cytological “punch biopsy” procedure that only tells you if you do or don’t have cancer and how far along it might be.
Talk with your doctor, ASK QUESTIONS, talk with your spouse, talk with any male blood relatives who have already gone through this, and make your most comfortable decision.
Good luck to you. Keep us posted.

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Profile picture for dribbles @dribbles

So are you and Phil are saying that if I have a high decipher score the chances of recurrence with Radiation or Surgery is higher. Are the odds worse that I get a total kill of the PC in and around the bed with SBRT and ADT? If so, it may require cryo or HIFU + ADT for salvage or a difficult Prostatectomy + radiation. That salvage would not be as effective as the salvage Radiation and ADT in the prostate bed after Prostatectomy? For distant recurrence it would all be treated the same likely with SBRT.
Sorry to pose all the questions back at you, it is very helpful to get my head around this.

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@dribbles YES. If your Decipher score is in the higher range, your chance of recurrence is HIGHER.
And the possibility of RETREATMENT is also higher.
The usual, most favorable course of retreatment is surgery FIRST followed by Salvage radiation later on (months, years, or never) if necessary.
Hope this helps!
Phil

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Profile picture for heavyphil @heavyphil

@dribbles YES. If your Decipher score is in the higher range, your chance of recurrence is HIGHER.
And the possibility of RETREATMENT is also higher.
The usual, most favorable course of retreatment is surgery FIRST followed by Salvage radiation later on (months, years, or never) if necessary.
Hope this helps!
Phil

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Just a quick update to keep this going.
My testosterone reading came back at 30 after being on Orgovyx for 15 days. So that is working.
The radiation team ordered the decipher for me so that may be a turning point when that comes.
Interestingly when I posed the ? of plan B after a recurrence they said they would do either Cryo or Brachy or last resort surgery.
I would lean toward doing the PAE prior to the SBRT + the ADT I’m on now. I would get good shrinkage from the ADT and the PAE . Those 2 treatments separately will shrink the prostate 20-30%. I’m not sure what the cumulative effect would come out to.
I’ll wait for decipher score to decide.

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