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Anyone with aggressive prostate cancer (Gleason 9) and low PSA?
Hi Everyone,
I’ve recently completed treatment for prostate cancer (Gleason score 9). Thankfully, the tumors had not spread beyond the prostate.
My treatment included:
- 42 sessions of Halcyon radiotherapy
- 2 years of Eligard injections
One challenge I faced was a delay of 11 months between diagnosis and the start of treatment. This was mainly because my PSA level was only 1.9, so my case was initially considered non‑urgent despite the aggressive cancer.
I finished the radiotherapy 2 years ago and the Eiligard injections 2 weeks ago. However, for the past6 months or so I have been dealing with a persistent burning sensation when I need to urinate. My urologist believes this is a side effect of the radiotherapy.
I’d really appreciate hearing from others who may have had:
- Aggressive prostate cancer with a low PSA level
- Experience with how monitoring is done in such cases, especially how the nadir is assessed
Thank you in advance for sharing your experiences and insights.
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Somewhere around 10% of the prostate cancer cases don’t produce PSA. You can do PSMA pet scans to look for the cancer growing or spreading.
Pyridium (phenazopyridine) is specifically used to relieve the burning, pain, urgency, and discomfort associated with urinary tract irritation, which often includes the burning sensation while peeing. It is available over the counter as AZO.
To get more information, you should sign up with Ancan.org and attend their advanced prostate cancer weekly meetings. They have weekly two hour online meetings, next one tomorrow at 5pm pacific time. . The people there have 15 years experience handling prostate cancer treatment. There’s always at least three doctors at the meetings. You need some expert advice and they can give that to you. They are very familiar with people that don’t produce PSA. Get there 10 minutes early and you will be first to be called upon.
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6 ReactionsDid you have quarterly PSA tests on the first 9 months post-radiation treatment? I will have my post-SBRT’s 3rd PSA test in January 2026, at which time I will be four months off ADT (Orgovyx) already. My oncologist said that my nadir will be the last reading before my PSA begins to rise. I suppose if it’s higher in Jan/2026 compared to Oct/2025, then my Oct PSA 0.22 will be my nadir. I am hoping though that January will be >0.22 or even be undetectable. My oncologist said that it could be higher given that testosterone level recovers fast after stopping Orgovyx, but I shouldn’t worry if the PSA rise is explainable with a corresponding testosterone level getting higher. With radiation alone without ADT, it can take up to two years (or more) before PSA becomes undetectable.
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2 Reactions@jeffmarc
The next meeting is Monday at 5 PM Pacific time not tomorrow.
Thank you so much for taking the time to reply. That's very useful.
@vircet
Thank you so much for taking the time to reply.
I have had the quarterly PSA tests, my last one was just 2 weeks ago 0.008. I guess the next important test result will be in 6 months time. Then I will have 3 months without an injection.
John , It appears you just have to wait for that ADT to start to wear off to see if the 0.008 PSA holds or where you are at . Give it a few months . Did the Dr stop ADT for some reason or was it part of the plan all along ? Keep s in the loop of what happens. It appears things should go as planned . High Gleason and Low PSA have to be cared for , with special attention- they can be aggressive and unpredictable . Because of the Low PSA people brush it aside w/o looking at the type of cell ( usually High Gleason ! ) . You have this . I dont know too much about your therapy though ... I will prey for you and positive outcomes Sir . God Bless to you and your Sir . James on Vancouver Island .
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2 Reactions@jeffmarc Jeff , these meeting sound like a great idea for him through Ancan.org and a great idea for many , this group can help individuals negotiate their disease technically and emotionally with all sorts of help . Never knew that had Dr's to help there as well . I may use this too at some point. Thanks ! I find the emotional support to be of great help , as I have alot of aniexty around this inflection of PC , mainly due to having it deep within family DNA and helping my father daily when he could not longe help himself . I sure miss my Dad ! Thanks again Jeff .... James on Vancouver Island .
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1 Reaction@vircet So true ...Good point Sir . With my 22 session of radiation ( EBRT about 3 years after surgery with no ADT ) , my PSA started at 0.14 , then bounced around . No I am at 2.5 years post radiation my PSA hovers in the 0.066 - 0.040 range . it just goes sideways now . But it took a long time for it to sort of bottom out ! Just the way it works I gather ? Thanks Sir . James on Vancouver Island .
@vancouverislandhiker
You might want to attend one of their speaking freely meetings. They hold them twice a month on Thursdays. 5 PM Pacific time. They discuss everything but treatment. People talk about their anxieties their sexual problems their Fear of dying and many other things that come up when people have prostate cancer and a few other cancers.
The people that attend say they really like the meetings.
Excellent Idea . This sounds interesting Jeff- Thanks ! . When I get back from Caribbean I will delve into these ! Sounds like good therapy of sorts . James .