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Husband’s low psa, aggressive Gleason 8

Posted by gemini27 @gemini27, Jul 11 8:35pm

I’ve been reading along here for a while. Many knowledgeable people! My husband (just turned 60) was diagnosed Jan Gleason 8, pni, large tumor volume, probable invasion into capsule (but no confirmed epe). PSMA pet no spread.
Took firmagon one month then began eligard. Radiation 28 sessions completed in April. Psa at diagnosis 2.6. Took a baseline psa in Feb before starting adt- 1.9. Took psa after one month of firmagon (prior to rad.) and it was 1.1. Decipher .94 Will get first psa in a couple weeks. Not sure what to expect as far as psa. I believe they said his threshold will be lower.
Any thoughts welcomed!

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jeff Marchi | @jeffmarc | 3 days ago
In reply to @mlabus3 "This the first i have heard of neuroendocrine prostate cancer, and the potential for morphing. I..." + (show)
@mlabus3

This the first i have heard of neuroendocrine prostate cancer, and the potential for morphing. I will do a little research, but can you provide more info on this?

Im trying to dig in to treatment options - have cribiform morphologies and 93 Decipher. had RP 6/18, hopeful, but realistic about recurrence. 4+3 (without factoring in Cribiform), EPE, but clean margins, pelvic lymph nodes and vesicles. Clean PET. So little info (that I can find) on cribiform/IDC treatment plans.....but the good news is there looks to be a lot of potential solutions.

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I know two people who ended up with neuroendocrine prostate cancer. Neither of them lived more than about a year after diagnosis.

One guy went to Austria to get Pluvicto and actinium, He went on a PARP inhibitor but nothing helped.

The other person had chemo that included carboplatin, It helped a little but not much. He tried to get into one of the DLL studies, but he was too weak By the time he was in consideration. They had closed one of them to concentrate on women with breast cancer and neuroendocrine.

A study has shown that staying on the same prostate cancer drug for more than four years gives you at least least a 5% chance of neuroendocrine. That includes everything Zytiga, the lutamides and even the ADT drugs.

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1 reply
mlabus3 | @mlabus3 | 3 days ago

how is it diagnosed? and how do you "end up" with this? is it after a lengthy period of cancer drugs?

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raulrr49 | @raulrr49 | 2 days ago
In reply to @jeffmarc "Make sure to speak to a radiation oncologist. Proton radiation does not have the long-term risk..." + (show)
@jeffmarc

Make sure to speak to a radiation oncologist. Proton radiation does not have the long-term risk of Cancer. They use it in children with brain cancer because of that.

If your pet scan shows any spread, radiation is almost essential.

A second opinion from a center of excellence could give you a lot more choices. Are you working with a medical oncologist or a Genito urinary oncologist? The GU oncologists Specialize in prostate cancer. Medical oncologist work with all different kinds of Cancers, They can’t specialize and keep up with the latest things going on.

I know people that are in their second decade after having a Gleason eight and radiation or surgery. With today’s treatments, you will probably live decades.

I’ve had PC for 15 years, Had surgery and radiation and three different types of drugs. I’ve got the genetic problem of BRCA2 Which prevents cells from correcting errors. The drugs keep me going even after 4 Reoccurrences.

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Thank you. It’s early in my diagnosis (7/14/25) and it’s all moving very fast.

I will definitely ask these questions.

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heavyphil | @heavyphil | 1 day ago
In reply to @jeffmarc "I know two people who ended up with neuroendocrine prostate cancer. Neither of them lived more..." + (show)
@jeffmarc

I know two people who ended up with neuroendocrine prostate cancer. Neither of them lived more than about a year after diagnosis.

One guy went to Austria to get Pluvicto and actinium, He went on a PARP inhibitor but nothing helped.

The other person had chemo that included carboplatin, It helped a little but not much. He tried to get into one of the DLL studies, but he was too weak By the time he was in consideration. They had closed one of them to concentrate on women with breast cancer and neuroendocrine.

A study has shown that staying on the same prostate cancer drug for more than four years gives you at least least a 5% chance of neuroendocrine. That includes everything Zytiga, the lutamides and even the ADT drugs.

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Jeff, you have been on some of the same drugs over 4 yrs as well, right? Have you made any attempt to switch to a different drug to avoid this transformation to a very aggressive form of PCa?

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1 reply
jeff Marchi | @jeffmarc | 1 day ago
In reply to @heavyphil "Jeff, you have been on some of the same drugs over 4 yrs as well, right?..." + (show)
@heavyphil

Jeff, you have been on some of the same drugs over 4 yrs as well, right? Have you made any attempt to switch to a different drug to avoid this transformation to a very aggressive form of PCa?

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After six years on Lupron, I switched to Orgovyx. After 2.5 years of Abbie I switched to Darolutamide. That was one reason for switching to Orgovyx.

So Lupron is the only thing I’ve been on long enough

The chance of neuroendocrine is only 5%

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ava11 | @ava11 | 9 hours ago
In reply to @vircet "In my case, I was 68. PSA 7.9 Nov 2024, 10+ late Jan/early Feb 2025. Gleason..." + (show)
@vircet

In my case, I was 68. PSA 7.9 Nov 2024, 10+ late Jan/early Feb 2025. Gleason 7 (3+4) unfavorable intermediate, no metastasis. On ADT Orgovyx since March 26, completed 5 sessions SBRT on April 9 - 22, July 7 PSA 0.36 -- if it becomes undetectable or less than 0.2 next To PSA, I want to go on ADT holiday. (My oncologist told me last April that we'd see if I get off Orgovyx after 8 months or a year; I prefer 8 months or sooner.

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I too had SBRT 5 sessions. I stopped Orgovyx after 12 months. I was Gleason 9. After 3 1/2 months my PSA went up from 0.02 to 0.05. My T went up from 8 to 65.
Who is your oncologist? Not all oncologists believe in Intermittent ADT. I may want to talk to your oncologist for a 3rd opinion who believes in taking a holiday from this powerful drug!

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1 reply
kujhawk1978 | @kujhawk1978 | 6 hours ago

Well...

Given the clinical data you describe, he is high risk and advanced prostate cancer.

That is the not so good news. Is there good news when it comes to advanced PCa? While it seems like an oxymoron, yes...

Today, thanx to advances in imaging and treatment, the landscape for treating and managing advanced PCa had changed for the better, enabling for many, sadly not all, longer lives, albeit living with side effects.

Today we PSMA PET for imaging, we combine therapies, new agents such as ARIs, Radio Isotopes...

Genetic testing can assist in tailoring treatments vice population based ones.

I'm high risk yet 11+ years since my diagnosis at age 57, here I am. Why, who knows. In that time I've been on treatment three years, the other eight plus off

There are others on this forum it as fortunate as I who have been on treatment continuously vice intermittent as I have.

Stay informed, read up, become familiar with the guidelines such as the NCCN and AUA, organizations such as the PCRI and PCF have invaluable resources on their websites.

I think most important, advocate for yourselves when talking with you medical team. Do not meekly accept the SOC as perfunctory care, high risk advanced PCa generally requires a more aggressive approach.

Keep in mind mitigating strategies for managing the side effects of treatment;
Diet
Exercise
Managing stress.

Have a multi-disciplinary team:
Urologist
Radiologist
Oncologist
I would add a cardiologist

Learn the language and definitions for PCa - ARI, PARP Inhibitor, GS, GG, PSADT, PSAV....it helps when talking with your medical team.

If your husband is not already active, consider a trainer to help get him going and build an exercise program he can do involving cardio, resistance training, potentially core muscles, stretching....

Do things he likes that are active.

Walk the dog
Ride bikes
Hike
Ski
Yard work
....
It is possible for your husband to live a decade plus and in that time the two of you can live a lot. My wife and I have.

Kevin
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vircet | @vircet | 6 hours ago
In reply to @ava11 "I too had SBRT 5 sessions. I stopped Orgovyx after 12 months. I was Gleason 9...." + (show)
@ava11

I too had SBRT 5 sessions. I stopped Orgovyx after 12 months. I was Gleason 9. After 3 1/2 months my PSA went up from 0.02 to 0.05. My T went up from 8 to 65.
Who is your oncologist? Not all oncologists believe in Intermittent ADT. I may want to talk to your oncologist for a 3rd opinion who believes in taking a holiday from this powerful drug!

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I sent you a direct message. I hope it helps. Best regards,

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