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Gleason score of 9

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User
Posted 26 May 2024 at 14:36

Hi. Thanks for letting me join. I have been diagnosed this week with prostate cancer. Gleason score added up to 9 from the biopsy 4 +5. 

So wasn't too worried after the usual  hats etc and we are going to do this. However did the wrong thing and googled survival rates for Gleaaon 9. Now I am a bit concerned. No one has the definitive answer but what is rhe general concensus amongst people on here with similar results. 

 

Not breached prostate and not spread to lymph nodes or bones. Although I am due a bone scan on Tuesday. 

 

Thanks.

 

Terry 

User
Posted 26 May 2024 at 21:47
Hi , my hubbys stats were PSA 23 Gleason 4+5 . Unfortunately his had spread to para aorta lymph nodes . He was diagnosed 8.5 yrs ago at age of 55 , he had early chemo along with prosap injections also was put on the stampede trial which included 2 more meds ( abi and Enzo) . He’s still working ,yes at a slower pace but in a manual job . His PSA has been undetectable since for 8 yrs .

Hopefully this helps , it’s so easy to look at google but a lot of stats are out of date .

Keep the faith

Best wishes

Debby

User
Posted 10 Sep 2024 at 05:10

At the age of 46, I was Gleason 9 and pT3b.  I'm now 54 and PSA has  been undetectable for years.

User
Posted 27 May 2024 at 07:16

I was diagnosed Gleason 9 with psa at 24.9 over four years ago had 37 sessions off radiotherapy and 18 months off hormone therapy psa 0.01 at last test and more or less back to normal gaz 👍 

User
Posted 27 May 2024 at 10:36
Thanks everyone. It's eased my mind a bit. It is scarey but knowing others have been through it and out the otherside certainly helps. Thanks once again
User
Posted 24 Sep 2024 at 18:09

Hi just to say that my  husband Mike, had a Gleasong score of 10 just over two years ago. The cancer had spread to his bones as well but not to lymph nodes. Having had chemotherapy and radiotherapy he is doing really well. His Gleason score is well within the normal range. He is very active, plays tennis twice a week and badminton once a week.  When we got the resuls two years ago we were devastated, however joining this forum gave me so much comfort and whilst I havent been on the forum I do read all the comments. The Macmillan nurses have been great as well.  Have a good diet as it does help and try and keep active. 

User
Posted 13 Oct 2024 at 20:25

This gives me hope 💪

I was diagnosed at 45 by luck, at the end Gleason score 9, localy advanced to 2 node.

Just finished 39 radiotherapy treatment , and now I am on hormon therapy + Abiraterone acetat.

Soon I am going to MRI to see the result of radiation ...

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User
Posted 26 May 2024 at 19:34

Hi Terry.

I'm sorry to see that you've had to join us, but welcome to the forum.

I was PSA 6.6, Gleason 9 (4+5), T3a, capsule breached. I had a robotic prostatectomy 16 months ago, since then (touchwood) my PSA has been undetectable.

In my opinion there is nothing wrong with Googling so long as the information is from a reputable source or peer reviewed research, and that you feel that you are competent to interpret the facts.

Good luck mate.

Edited by member 26 May 2024 at 19:49  | Reason: Additional text

User
Posted 26 May 2024 at 21:01

Hi Terry 

My husband aged 58 has recently been diagnosed with Gleeson 9 PC upto now it appears not beached the capsule and no spread but won’t know for sure until his histology after he has a radical Prostectomy next month. 
we too found the high Gleeson score so worrying but when we saw the clinical nurse at a the Christie hospital she assured us that his cancer was still curable and also reassured us IF it was found to recur that there were still curable treatments! 
This along with the great support and information for this forum has helped us immensely. 
I hope you get a treatment plan soon as it helps to know the wheels are in motion. 
good luck 

M 

User
Posted 26 May 2024 at 21:19

Hi Terry,

Welcome to the club that nobody wants to join…but when they do they find there is a wealth of experiences and knowledge, far better than Dr Google, which personally I avoid like the plague.

Speak to your CNS if you have concerns, or phone one of the specialist nurses on here who are wonderful and will make time for you. Finally you might like to consider joining a local support group such as Maggies where you can talk face to face with other men in the same boat as you.

I wish you all the best on your journey….mine is now almost over (I hope🤞🤞🤞) but this forum has been so helpful in getting me through it.

Derek

User
Posted 26 May 2024 at 21:47
Hi , my hubbys stats were PSA 23 Gleason 4+5 . Unfortunately his had spread to para aorta lymph nodes . He was diagnosed 8.5 yrs ago at age of 55 , he had early chemo along with prosap injections also was put on the stampede trial which included 2 more meds ( abi and Enzo) . He’s still working ,yes at a slower pace but in a manual job . His PSA has been undetectable since for 8 yrs .

Hopefully this helps , it’s so easy to look at google but a lot of stats are out of date .

Keep the faith

Best wishes

Debby

User
Posted 27 May 2024 at 07:16

I was diagnosed Gleason 9 with psa at 24.9 over four years ago had 37 sessions off radiotherapy and 18 months off hormone therapy psa 0.01 at last test and more or less back to normal gaz 👍 

User
Posted 27 May 2024 at 10:36
Thanks everyone. It's eased my mind a bit. It is scarey but knowing others have been through it and out the otherside certainly helps. Thanks once again
User
Posted 09 Sep 2024 at 12:48

Hi just read your Gleason score was 9 my dads been diagnosed with the same how are u doing it’s so stressful waiting hope you are ok 

User
Posted 09 Sep 2024 at 12:52

Hi been reading your message my dad as been diagnosed with TB3 Gleason 9 nurse said lymph nodes slightly raised but no mass nor sure what that means though I can see your husband was diagnosed 8 years ago this gives me some positive thoughts thanks Terrie 

User
Posted 09 Sep 2024 at 13:10

Originally Posted by: Online Community Member
Hi been reading your message my dad as been diagnosed with TB3 Gleason 9 nurse

Hi Terriex,

I think you mean T3b. This is a cancer staging that indicates that there has been spread to your dad's seminal vesicles.

It's not great news, but it's curable. There are many on here who are recovering from a similar diagnosis.

 

Edited by member 09 Sep 2024 at 13:12  | Reason: Additional text

User
Posted 10 Sep 2024 at 05:10

At the age of 46, I was Gleason 9 and pT3b.  I'm now 54 and PSA has  been undetectable for years.

User
Posted 24 Sep 2024 at 18:09

Hi just to say that my  husband Mike, had a Gleasong score of 10 just over two years ago. The cancer had spread to his bones as well but not to lymph nodes. Having had chemotherapy and radiotherapy he is doing really well. His Gleason score is well within the normal range. He is very active, plays tennis twice a week and badminton once a week.  When we got the resuls two years ago we were devastated, however joining this forum gave me so much comfort and whilst I havent been on the forum I do read all the comments. The Macmillan nurses have been great as well.  Have a good diet as it does help and try and keep active. 

User
Posted 13 Oct 2024 at 20:25

This gives me hope 💪

I was diagnosed at 45 by luck, at the end Gleason score 9, localy advanced to 2 node.

Just finished 39 radiotherapy treatment , and now I am on hormon therapy + Abiraterone acetat.

Soon I am going to MRI to see the result of radiation ...

 
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