Being treated for Gleason 9

Posted by donald76 @donald76, 3 days ago

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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Based on a study of 10,415 prostate cancer patients (intermediate to high-risk) I'm guessing your chances of surviving your PCa for at least 10 years are very-good-to-excellent!

Of course, a lot depends on how YOU respond to treatment.

For starters, hopefully at some point your PSA will drop to virtually undetectable (below 0.01 ng/ml) while taking Orgovyx.

And 6 months AFTER completing treatment...

"The 10-year prostate cancer-specific mortality rates for patients with a PSA nadir of 0.1 ng/mL or higher were 14%, 15%, and 14% for the patients who received RT alone, RT plus short-term ADT, and RT plus long-term ADT, respectively. The rates for patients with a PSA nadir less than 0.1 ng/mL were 8%, 7%, and 7%, respectively."
https://www.renalandurologynews.com/news/psa-nadir-after-rtadt-for-prostate-cancer-predicts-outcomes/
https://meetings.asco.org/abstracts-presentations/218387

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@retiredboomer71

Based on a study of 10,415 prostate cancer patients (intermediate to high-risk) I'm guessing your chances of surviving your PCa for at least 10 years are very-good-to-excellent!

Of course, a lot depends on how YOU respond to treatment.

For starters, hopefully at some point your PSA will drop to virtually undetectable (below 0.01 ng/ml) while taking Orgovyx.

And 6 months AFTER completing treatment...

"The 10-year prostate cancer-specific mortality rates for patients with a PSA nadir of 0.1 ng/mL or higher were 14%, 15%, and 14% for the patients who received RT alone, RT plus short-term ADT, and RT plus long-term ADT, respectively. The rates for patients with a PSA nadir less than 0.1 ng/mL were 8%, 7%, and 7%, respectively."
https://www.renalandurologynews.com/news/psa-nadir-after-rtadt-for-prostate-cancer-predicts-outcomes/
https://meetings.asco.org/abstracts-presentations/218387

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Thanks for this. Now I know what I'm looking for.👍

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@brianjarvis

Your ADT + radiation is standard treatment for a Gleason 9 (as the attached NCCN guidelines show).

However, those NCCN guidelines also show an alternative treatment of “doublet therapy” consisting of ADT + ARPI + radiation, which has been shown to result in better outcomes. A number of clinical trials have shown better outcomes with doublet therapy as well (see attached chart).

As for what to expect —> First, I would expect success. I would also ask my doctor why doublet therapy wasn’t used in order to increase the chance of success.

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Which of those trials are with radiation?

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I'm also Gleason 9, age 67, had surgery in November. I had several indications that recurrence is in my future. Present in cribriform glands, bladder neck, Lymphatic or Vascular Invasion, perineural, multifocal and presence at the margins. My 8-month PSA was 0.02. So far my urologist is taking a wait and watch approach. Next scheduled appointment is my next PSA is Oct. 1. It's difficult to be patient because everything I see online says all of those conditions are bad. I'm probably going to have a consultation with someone else just to make sure my course of treatment makes sense.

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@anosmic1

I'm also Gleason 9, age 67, had surgery in November. I had several indications that recurrence is in my future. Present in cribriform glands, bladder neck, Lymphatic or Vascular Invasion, perineural, multifocal and presence at the margins. My 8-month PSA was 0.02. So far my urologist is taking a wait and watch approach. Next scheduled appointment is my next PSA is Oct. 1. It's difficult to be patient because everything I see online says all of those conditions are bad. I'm probably going to have a consultation with someone else just to make sure my course of treatment makes sense.

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I know that my doctor would have me getting three months PSA tests at least for a couple of years.

I Have been getting monthly tests for eight years. I’ve been undetectable for 20 months, but it could come back any day now so I get monthly tests.

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@pjsatz

Which of those trials are with radiation?

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The STAMPEDE trial did: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)32486-3/fulltext

You’ll have to research each one (and more recent ones).

There are many studies (even beyond those in that table). In fact there are randomized phase 3 studies (PEACE-1 and ARASENS) demonstrating the superiority of triplet regimen over doublet treatment.

You may have to do some research.

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@jeffmarc

I know people with Gleason nine but are still around for 30+ years.

As long as your PSA is undetectable for almost 18 months Stopping Orgovyx can work for you. Just get regular PSA tests.

There was nothing else in your biopsy besides Gleason nine right? Things like cribriform, intraductal, seminal vesicle invasion can cause problems,

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In 2015 I had a biopsy done 'cause my PSA was 13 retested It was 14. Had a biopsy and I was told 75% of 12 snips were cancerous. Of course I had options. I elected to have it removed. I'm 67 now. I was told that I would live a normal life should everything be successful. Unfortunately that was far from the truth. Although I have detested undetectable coming up on 10 years in August I am grateful. Beyond what I imagined could happen. But they never discussed anything to do with Gleason numbers so I don't even know what that means or what mine was. I do remember my urologist who did the surgery and I had The non invasive Robotic prostatectomy. And I was told that if everything goes well I should live 20 more years. I guess I have 10 left. I thought that was an odd thing to say. Either way maybe I can get some input on the Gleason numbers And should I even go back at this point and talk to them about it.
thanks for anyone's input.
Paul

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@pbrowni25

In 2015 I had a biopsy done 'cause my PSA was 13 retested It was 14. Had a biopsy and I was told 75% of 12 snips were cancerous. Of course I had options. I elected to have it removed. I'm 67 now. I was told that I would live a normal life should everything be successful. Unfortunately that was far from the truth. Although I have detested undetectable coming up on 10 years in August I am grateful. Beyond what I imagined could happen. But they never discussed anything to do with Gleason numbers so I don't even know what that means or what mine was. I do remember my urologist who did the surgery and I had The non invasive Robotic prostatectomy. And I was told that if everything goes well I should live 20 more years. I guess I have 10 left. I thought that was an odd thing to say. Either way maybe I can get some input on the Gleason numbers And should I even go back at this point and talk to them about it.
thanks for anyone's input.
Paul

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Definitely go back and ask for a copy of your original biopsy. It will have your Gleason score and more.

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Hello Donald, I had my prostate removed in April 2019, gleason 4+5. Decipher was .96. One lymph node positive. All scans showed no cells anywhere else. PSA undetectable 6 months post op; still undetectable 6 years later. I had 39 radiation sessions, in 2019, and 2 years of Xytiga with prednisone. I am now 79 years old. I consider myself very lucky, at least so far. I hope you have a cancer free future.

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