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Gleason score of 10

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User
Posted 09 Mar 2023 at 18:13

Hi, my partner has just been told that his Gleason score is 5+5 - T3B N1. 25 out of 31 samples were positive 
He’s been prescribed hormone treatment and waiting for a bone and CT scan.

we are both worried sick - can anyone offer any advice/reassurance 

User
Posted 09 Mar 2023 at 19:03

Well I was T3 Gleason 4+5 and 11 out 11 of my cores were positive. I was N0 M0. PSA 25. So not quite as bad as your other half. Five years later my PSA is 0.1 and no sign of cancer (I am too cautious to say I'm cured).

You will find plenty of others on here who are doing as well as I am. You will also find a few who's primary treatment failed but then they had successful salvage treatment, and also people where treatment has failed, but they are still here a decade or so later.

So obviously a cancer diagnosis is not good news but it is probably nowhere near as bad as your imagination is taking you at the moment. Once you have the full diagnosis and a treatment plan things will be a lot better for you.

Dave

User
Posted 09 Mar 2023 at 22:37
Hi ,my OH Gary was diagnosed over 7 yrs ago aged 55 PSA 4+5 N1 M1 PSA 23 spread to lymph nodes ,he had early chemo (6 sessions) and is on life time hormones . He still works full time ,at a lot less pace because of fatigue but life does still go on .He’s PSA has been undetectable since about the 3rd session of chemo . It’s not easy at times because of the fatigue but we still enjoy holidays even though the insurance can be stupid prices . Life will be different but once treatment starts and the PSA starts to fall it does get easier .

Good luck with your journey,lots of info on this site so keep asking and I’m sure the many knowledgeable people will be along to help you .

Debby

User
Posted 10 Mar 2023 at 13:18

Originally Posted by: Online Community Member

Thankyou for your response, strange thing is my partners PSA is relatively low (given his Gleason score) It was 9 now 11. When I queried this I was told it wasn’t that reliable as a test for prostrate !!

That's true - PSA only indicates that there might be a problem that needs exploring; unless it is up in the hundreds or thousands, it doesn't indicate how serious the problem is. The Gleason score doesn't affect PSA.

My husband was diagnosed with a PSA of 3.1 and we had a member here who had a PSA of 3 but it had spread all over his skeleton. We have also had men with PSA of 80 who turned out not to have cancer, just a really big prostate!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 09 Mar 2023 at 19:03

Well I was T3 Gleason 4+5 and 11 out 11 of my cores were positive. I was N0 M0. PSA 25. So not quite as bad as your other half. Five years later my PSA is 0.1 and no sign of cancer (I am too cautious to say I'm cured).

You will find plenty of others on here who are doing as well as I am. You will also find a few who's primary treatment failed but then they had successful salvage treatment, and also people where treatment has failed, but they are still here a decade or so later.

So obviously a cancer diagnosis is not good news but it is probably nowhere near as bad as your imagination is taking you at the moment. Once you have the full diagnosis and a treatment plan things will be a lot better for you.

Dave

User
Posted 09 Mar 2023 at 22:37
Hi ,my OH Gary was diagnosed over 7 yrs ago aged 55 PSA 4+5 N1 M1 PSA 23 spread to lymph nodes ,he had early chemo (6 sessions) and is on life time hormones . He still works full time ,at a lot less pace because of fatigue but life does still go on .He’s PSA has been undetectable since about the 3rd session of chemo . It’s not easy at times because of the fatigue but we still enjoy holidays even though the insurance can be stupid prices . Life will be different but once treatment starts and the PSA starts to fall it does get easier .

Good luck with your journey,lots of info on this site so keep asking and I’m sure the many knowledgeable people will be along to help you .

Debby

User
Posted 10 Mar 2023 at 08:33

Thankyou for your response, it gives us hope, onwards and upwards 

User
Posted 10 Mar 2023 at 11:06

Hi, I was diagnosed last April with Gleason 5+4 T3bN1M1 and PSA of 77.  Since then I've been on hormone treatment and had radiotherapy in November. PSA was 0.07 last time it was tested in January.  

The first few weeks weren't easy but since then, although I'm more tired than before, life hasn't changed too much. Still managing to get out running, walking the dog etc.

Stay positive

User
Posted 10 Mar 2023 at 11:32

Thankyou for your response, strange thing is my partners PSA is relatively low (given his Gleason score) It was 9 now 11. When I queried this I was told it wasn’t that reliable as a test for prostrate !!

User
Posted 10 Mar 2023 at 13:18

Originally Posted by: Online Community Member

Thankyou for your response, strange thing is my partners PSA is relatively low (given his Gleason score) It was 9 now 11. When I queried this I was told it wasn’t that reliable as a test for prostrate !!

That's true - PSA only indicates that there might be a problem that needs exploring; unless it is up in the hundreds or thousands, it doesn't indicate how serious the problem is. The Gleason score doesn't affect PSA.

My husband was diagnosed with a PSA of 3.1 and we had a member here who had a PSA of 3 but it had spread all over his skeleton. We have also had men with PSA of 80 who turned out not to have cancer, just a really big prostate!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Mar 2023 at 20:47

Update

bone scan clear

CT scan shows spread to lymph nodes in pelvis

mark on pancreas that they are not sure about

waiting for appt to see oncologist 

partner is a bit down at the moment 

 

 

 
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