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User
Posted 05 Dec 2023 at 11:04

Hi 

I've just been diagnosed with locally advanced prostate cancer with a Gleason score of 4+5=9. After the MRI scan they gave me a score of T3bN0. My initial PSA was 82.5. I had TURP operation about a month ago to relieve urine retention issues and they took samples while doing this.

When the Consultant Urologist saw me a couple of weeks ago he started by saying 'I'm afraid to say' which alarmed me. What was coming next? ' I'm afraid to say it's an aggressive form!!! 

He's put me straight onto Hormone treatment and referred me to the Oncologist. What are the likely treatments going forward and is the outcome as bad as it sounds?

User
Posted 05 Dec 2023 at 11:04

Hi 

I've just been diagnosed with locally advanced prostate cancer with a Gleason score of 4+5=9. After the MRI scan they gave me a score of T3bN0. My initial PSA was 82.5. I had TURP operation about a month ago to relieve urine retention issues and they took samples while doing this.

When the Consultant Urologist saw me a couple of weeks ago he started by saying 'I'm afraid to say' which alarmed me. What was coming next? ' I'm afraid to say it's an aggressive form!!! 

He's put me straight onto Hormone treatment and referred me to the Oncologist. What are the likely treatments going forward and is the outcome as bad as it sounds?

User
Posted 05 Dec 2023 at 12:21

Sounds similar to my diagnosis. My PSA was mid 20s so that was a bit better than your 82.5.

Click on my avatar to track my treatment. As long as it has not metastasized you have every chance of being cured. 

If it has metastasized you have a reasonable chance of living another decade or so.

Dave

User
Posted 05 Dec 2023 at 14:05

Hi John,

I’m T3bN0M0, PSA 36 at diagnosis, down to 0.3, 3 months post RT.
So, like me it’s spread to the Seminal Vesicles but nowhere else? Your PSA is high but some men on here have it in the hundreds, or even thousands!

Has surgery been ruled out? If you’ve already started HT then maybe it has. I’m on HT for 3 years and had 20 sessions of RT to the Prostate and Seminal Vesicles. You’re best to wait until you see the Onco and try not to panic in the meantime. I know it’s not easy when diagnosed, just try and keep yourself busy, be kind to yourself and do as many things as you can that you enjoy doing. As everyone says the waiting is the worst!

All the best on your journey!

Derek

User
Posted 05 Dec 2023 at 15:22

I was Gleason 5+5 =10, PSA 11.6, locally advanced to lymph nodes, finished 6x docataxel chemo excellent response and now completed 24 of 37 RT sessions, still going to the gym 5x per week and have had 3 overseas holidays during treatment. 
positive attitude and keeping busy is an absolute must. One day at a time and keep smiling 🙂 

 

User
Posted 05 Dec 2023 at 16:13

Hi Dave

Thanks for replying. I've read through your progress and note the significant issues with Zoladex  (which I'm now on) you have given me hope of getting over through this ordeal.

Cheers

John

User
Posted 09 Jan 2024 at 15:28

Just had a phone call from Oncologist. When I saw him just before Xmas he said I would need radiotherapy for four weeks to the Prostate and seminal vesicles. I said wouldn't it be best to include the pelvic lymph nodes as its an aggressive form of Prostate Cancer.  He thought about it for a while and agreed. He rang me later in the day to say he'd reviewed my case again with a colleague and offered me a one off high doze of Brachytherapy at Christies before the Radiotherapy which I agree to.

In his call today he said Christies had reviewed my case and because I had a Turp operation the Brachytherapy wouldn't be best for me. So it looks like just radiotherapy  (with Hormone therapy).

Has anyone else been turned down Brachytherapy for similar reasons?

 

User
Posted 05 Dec 2023 at 16:01

My OH was PSA 23 Gleason 4+5 spread to lymph nodes ,straight on Prostap then 6 chemo sessions ,which he tolerated well .
He was lucky enough to go on a trial involving abiraterone and enzalutamine . After about his 3/4 chemo session his PSA came down to undetectable and has been there for 8 yrs .
He’s still working (he’s 63 now) slower than before but he does need 2 knee replacements as well .
Hopefully you’ll get similar results
Best wishes
Debby

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User
Posted 05 Dec 2023 at 12:21

Sounds similar to my diagnosis. My PSA was mid 20s so that was a bit better than your 82.5.

Click on my avatar to track my treatment. As long as it has not metastasized you have every chance of being cured. 

If it has metastasized you have a reasonable chance of living another decade or so.

Dave

User
Posted 05 Dec 2023 at 14:05

Hi John,

I’m T3bN0M0, PSA 36 at diagnosis, down to 0.3, 3 months post RT.
So, like me it’s spread to the Seminal Vesicles but nowhere else? Your PSA is high but some men on here have it in the hundreds, or even thousands!

Has surgery been ruled out? If you’ve already started HT then maybe it has. I’m on HT for 3 years and had 20 sessions of RT to the Prostate and Seminal Vesicles. You’re best to wait until you see the Onco and try not to panic in the meantime. I know it’s not easy when diagnosed, just try and keep yourself busy, be kind to yourself and do as many things as you can that you enjoy doing. As everyone says the waiting is the worst!

All the best on your journey!

Derek

User
Posted 05 Dec 2023 at 15:22

I was Gleason 5+5 =10, PSA 11.6, locally advanced to lymph nodes, finished 6x docataxel chemo excellent response and now completed 24 of 37 RT sessions, still going to the gym 5x per week and have had 3 overseas holidays during treatment. 
positive attitude and keeping busy is an absolute must. One day at a time and keep smiling 🙂 

 

User
Posted 05 Dec 2023 at 16:01

My OH was PSA 23 Gleason 4+5 spread to lymph nodes ,straight on Prostap then 6 chemo sessions ,which he tolerated well .
He was lucky enough to go on a trial involving abiraterone and enzalutamine . After about his 3/4 chemo session his PSA came down to undetectable and has been there for 8 yrs .
He’s still working (he’s 63 now) slower than before but he does need 2 knee replacements as well .
Hopefully you’ll get similar results
Best wishes
Debby

User
Posted 05 Dec 2023 at 16:13

Hi Dave

Thanks for replying. I've read through your progress and note the significant issues with Zoladex  (which I'm now on) you have given me hope of getting over through this ordeal.

Cheers

John

User
Posted 06 Dec 2023 at 13:11

Hi Decho

Your case seems very similar to mine. Yes the cancer has spread to the seminal vesicles which I believe closely linked to the Prostate. Fortunately it hasn't spread anywhere else but I shall ask the Oncologist if I can have another scan as the MRI was done 2 months ago on 28/9/23. Bone scan was done on 12/10/23 and CT scan on 14/10/23.

Yes they ruled out removing the Prostate early on. Reading all the posts on here has given me hope of quite a few more years yet.

Cheers John

User
Posted 09 Jan 2024 at 15:28

Just had a phone call from Oncologist. When I saw him just before Xmas he said I would need radiotherapy for four weeks to the Prostate and seminal vesicles. I said wouldn't it be best to include the pelvic lymph nodes as its an aggressive form of Prostate Cancer.  He thought about it for a while and agreed. He rang me later in the day to say he'd reviewed my case again with a colleague and offered me a one off high doze of Brachytherapy at Christies before the Radiotherapy which I agree to.

In his call today he said Christies had reviewed my case and because I had a Turp operation the Brachytherapy wouldn't be best for me. So it looks like just radiotherapy  (with Hormone therapy).

Has anyone else been turned down Brachytherapy for similar reasons?

 

 
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