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.

I wouldn’t let 18 days of Orgovyx Decide what your long-term results are going to be, though orgovyx It is supposed to drop your Testosterone pretty quickly.

You need to also have your testosterone checked. In some cases Orgovyx And other ADT drugs do not reduce the testosterone and as a result, the PSA doesn’t drop.

Have you had hereditary, genetic testing? I would recommend you Ask your doctor about having that right away. There are some types of Genetic issues that can cause your testosterone not to drop and instead of Orgovyx You might try Lupron. I know people that have had ATM genetic issues and it really caused problems with not dropping their testosterone.

I must admit the PAE procedure is new to me. I’ve heard of people having a Turp Which is a Roto router of the prostate and clears out tissue that can get away of urination. The PAE procedure seems to be less destructive, It should be interesting to hear if it works.

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Thank you Jeff,
I should have my testosterone back by tomorrow. I'll follow on the Genetic issues too. Mayo is doing PAE's now . I believe their specialist trained at Moffit and they do a lot of them. This link is an interview with their specialist.
PAE's shrink the prostate by putting seeds in the prostate arteries to cut off the blood flow and killing or compromising the tissue. Good for relieving pressure points to free up the flow.

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I had read that 100cc was the cut off for SBRT. Jeff's suggestion of considering switching to Lupon has to do with its different biochemical mechanism for reducing testosterone. There is also the dirt cheap estradiol patches that accomplish that too. The latter may cause a side effect of breast enlargement which can be modified. If there is a restriction causing a coincidental non bacterial prostatitis might an alpha-blocker, e.g., FLOMAX (tamsulosin) trial be considered. The art of medicine!

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I had an obstruction in the medial lobe and it was done with Green Light laser - quick procedure with catheter for a day. Don’t know if PAE uses one.
But if you already have urinary issues before SBRT, get them addressed because high dose radiation can cause swelling and urinary retention in some men. There’s also a Protox test which determines if you have a high risk for urinary issues from radiation. Good Luck,
Phil

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With your previous PSA about 4 weeks ago at 6.0, and your PSA yesterday at 9.4, what was your testosterone level at the time of both those PSA tests? (That will help answer your question about being castration resistant; has your testosterone level even dropped yet?)

You mentioned that the PSMA PET scan showed no spread?
> What was the SUVmax score of the lesion in your prostate?

Regarding your Gleason 8, is that a 3+5, 4+4, or a 5+3?

Any other risk factors from either the MRI or the biopsy?: cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma.

What were the results from your biomarker (genomic) test and your genetic (germline) test?

More information can help guide your next steps.

(Going the RP route simply provides other undesirable (sideshow) side/after-effects.)

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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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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
Do not ask about genetic testing. You tell your doctors you want genetic testing. Do not accept no for an answer. It is covered by insurance. You have to be proactive in your treatment. You can’t let the doctors push you around..

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Profile picture for jeff Marchi @jeffmarc

@dribbles
Do not ask about genetic testing. You tell your doctors you want genetic testing. Do not accept no for an answer. It is covered by insurance. You have to be proactive in your treatment. You can’t let the doctors push you around..

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@jeffmarc Jeff marching is absolutely correct. You should interviewing Dr's to hire and evaluating treatment modes...you want to hire the best and remember they work for you.

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Profile picture for jesse65 @jesse65

@jeffmarc Jeff marching is absolutely correct. You should interviewing Dr's to hire and evaluating treatment modes...you want to hire the best and remember they work for you.

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@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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One important point I forgot to mention is that I had a cystoscopy on 2/12 for a suspected lesion in my bladder but it was just a thickening of the wall. The Drs both seemed quite sure the PSA spike was caused by probable irritation in the urethra and the prostate and not from the Orgovyx being ineffective. Sorry that was an important omission.

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