What lies ahead for me..

User

Posted 12 Feb 2026 at 15:02

I have just been diagnosed like so many others, and I have had a torrid time over the last 4 months waiting for diagnosis and results from all the scans, the biopsy and the uncertainty of not knowing what's coming next. I lost a very good friend to the disease in 2024 and my brother has also had a recent diagnosis (a few months before me) so I am nervous..

I'm due a second bone scan next week and then I look forward to starting my treatment..

User

Posted 12 Feb 2026 at 16:11

I’m sorry you are here, but it’s a good place to get help and information. If you add your biopsy details to your profile it will be easier to get more personal information from others.

User

Posted 12 Feb 2026 at 16:50

Thank you. I have a PSA of 46, and the consultant wouldn't commit to the stage its at until the second bone scan is done next week. First one said it hadn't spread, and the paperwork they sent home with me circled CPG 5.

User

Posted 12 Feb 2026 at 18:08

Rob my advice is to politely but strongly advocate for yourself. Ask questions and push for what you need to know. Most of this information should be available from the MRI and biopsy. You really want to be starting treatment quickly in GPG5.

Prognostic Group 5

At least two of these

Grade Group 4 (Gleason 8 ie 4+4, 3+5, 5+3)

PSA level higher than 20 ng/ml

T stage of 3

Grade Group 5 (Gleason 9 or 10)

T stage of 4

On the staging TNM the N could be know only the M would need a bone scan.

User

Posted 13 Feb 2026 at 13:42

Thank you that's really helpful, and I guess the more you know its better to a point. The Nurse said the same thing and I have the PSA CT Scan on Tuesday and they are arranging my appointment before I go away on 7th March.

I spoke to my MacMillan nurse today and my Gleeson Score is 7 (I believe it was 3 +4) and I'm waiting for a call back to confirm.

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