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I need some support (I am scared)

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User
Posted 25 Mar 2025 at 19:47

My story : 

Gleason 8 (4 + 4), pT3aN0

Age now : 60

Age when diagnosed : 58

 

History :

November 2022 : first PSA after 2 years (last was done in November 2020 at 2ng/ml) at 6,7 ng/ml

 

March 2023 : Biopsy confirming Gleason 8 (and 6 in other parts of the prostate)

 

June 2023 (6th) : radical prostatectomy

 

Between June 2023 and July 2024 : PSA undetectable (around 0,01)

 

July 2024 : PSA of 0,03 ng/ml

 

Octobre 2024 : PSA of 0,05 ng/ml

 

January 2025 : PSA of 0,14

 

February 2025 : PSA of 0,24

 

March 2025 : PSMA pet scan. 

 

Doctor called me today to inform me that they found a cancerous lymph node in the right iliac area. Apparently, there is only one lymph node affected and he does not seem to see any in the prostate bed.

 

Before the PSMA, the doctor had told me about 33 radiotherapy sessions. He confirmed to me today that the number of sessions would not change but he prescribed me hormone therapy (pills for 30 days and an injection next week for 6 months)

 

I must admit that I'm afraid. If some of you have had similar results and want to share your experience I would really appreciate it.

User
Posted 26 Mar 2025 at 00:49

Petyot , not sure about treatment options in Canada. I had salvage RT without the benefit of a PSMA scan. I later had another recurrence that was found in a pelvic lymph node and had SABR treatment to that lymph node. Might be worth asking if they are going to treat the lymph node along with the prostate bed. 

Thanks Chris 

User
Posted 26 Mar 2025 at 09:05

I’m a bit further down the line than you with a worse diagnosis, so follow my profile and see what happens to me.

User
Posted 26 Mar 2025 at 10:12

Hello Pierre.

Welcome to the forum.

I'm sorry to hear that they've found a cancerous pelvic lymph node. I think, you may have slightly misinterpreted  Francji1. He wasn't being unsupportive or dismissive, but was merely pointing out that unfortunately, there have been many cases on this forum of biochemical recurrence following prostatectomises. Some have had good outcomes, and some have had poor outcomes. In the grand scheme of things your case of recurrence is average or 'standard', as is the proposed treatment of it. One thing is for sure, there are plenty of folk on here who've gone through what you are facing, and they will do their best to help and support you.

I had RARP two years ago. I had a similar diagnosis to yours, T3a, extraprostatic extension and Gleason 9 (4+5). To date, I've been very fortunate and my PSA has remained undetectable. However, nonograms suggest I still have a high risk of BCR. As an ex boyscout, I like to be prepared 🙂 and keep myself updated on possible treatment options for BCR.

Although informative,  I've found trawling through various research papers on salvage treatment can get a bit depressing, especially when you've got a capsular breach staging and a high Gleason score.🙂

However, this link may help you. 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9104304/

Best of luck with your further treatment, mate. 👍

Edited by member 26 Mar 2025 at 11:12  | Reason: Additional text

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User
Posted 25 Mar 2025 at 23:53
Lots of failed RP / Salvage radio therapy topics on this forum. Lots of success stories too. What you are having is pretty standard.
User
Posted 26 Mar 2025 at 00:49

Petyot , not sure about treatment options in Canada. I had salvage RT without the benefit of a PSMA scan. I later had another recurrence that was found in a pelvic lymph node and had SABR treatment to that lymph node. Might be worth asking if they are going to treat the lymph node along with the prostate bed. 

Thanks Chris 

User
Posted 26 Mar 2025 at 03:17

Originally Posted by: Online Community Member
Lots of failed RP / Salvage radio therapy topics on this forum. Lots of success stories too. What you are having is pretty standard.

So you cannot ask for support when it’s « standard » on this forum? 

User
Posted 26 Mar 2025 at 03:21

Originally Posted by: Online Community Member

Petyot , not sure about treatment options in Canada. I had salvage RT without the benefit of a PSMA scan. I later had another recurrence that was found in a pelvic lymph node and had SABR treatment to that lymph node. Might be worth asking if they are going to treat the lymph node along with the prostate bed. 

Thanks Chris 

I was a little shocked when the doctor called and I didn't think of all the questions I could have asked... I don't know what they will radiate beyond the ganglion

User
Posted 26 Mar 2025 at 09:05

I’m a bit further down the line than you with a worse diagnosis, so follow my profile and see what happens to me.

User
Posted 26 Mar 2025 at 10:12

Hello Pierre.

Welcome to the forum.

I'm sorry to hear that they've found a cancerous pelvic lymph node. I think, you may have slightly misinterpreted  Francji1. He wasn't being unsupportive or dismissive, but was merely pointing out that unfortunately, there have been many cases on this forum of biochemical recurrence following prostatectomises. Some have had good outcomes, and some have had poor outcomes. In the grand scheme of things your case of recurrence is average or 'standard', as is the proposed treatment of it. One thing is for sure, there are plenty of folk on here who've gone through what you are facing, and they will do their best to help and support you.

I had RARP two years ago. I had a similar diagnosis to yours, T3a, extraprostatic extension and Gleason 9 (4+5). To date, I've been very fortunate and my PSA has remained undetectable. However, nonograms suggest I still have a high risk of BCR. As an ex boyscout, I like to be prepared 🙂 and keep myself updated on possible treatment options for BCR.

Although informative,  I've found trawling through various research papers on salvage treatment can get a bit depressing, especially when you've got a capsular breach staging and a high Gleason score.🙂

However, this link may help you. 

https://pmc.ncbi.nlm.nih.gov/articles/PMC9104304/

Best of luck with your further treatment, mate. 👍

Edited by member 26 Mar 2025 at 11:12  | Reason: Additional text

User
Posted 26 Mar 2025 at 10:33
User
Posted 26 Mar 2025 at 11:12

blob:https://community.prostatecanceruk.org/82bf8555-5c47-483b-8e6d-75450808ceeb

Edited by member 26 Mar 2025 at 11:15  | Reason: Not specified

User
Posted 26 Mar 2025 at 18:26

Thanks to everybody who took the time to answer. Sorry if I misinterpreted some of your message but my brain is still in the fog because of the initial shock (and English is not my first language)…

I am supposed to start the tablets of hormone this week and will have an injection next week. How long did it take for you to feel the effects of hormone therapy? Did you gain weight or lose muscle mass from the beginning or did it come far after the start of the treatment?

User
Posted 26 Mar 2025 at 18:51
Hello buddy. I’m 58 and have been on injectable hormone treatment for 4 years. Some symptoms like hot flushes come quickly. I think I’ve been lucky tbh. Very little weight gain in all this time nor man boobs. The joint pain and muscle loss definitely accumulate over time. So does memory fog in honesty. In some ways the treatment has brought a better side out of me. I’m still very sexual and interested in my partner. Like I say I’ve been lucky. Stay busy , make sure you exercise , find a new hobby. Good luck
User
Posted 26 Mar 2025 at 20:09

Originally Posted by: Online Community Member
Hello buddy. I’m 58 and have been on injectable hormone treatment for 4 years. Some symptoms like hot flushes come quickly. I think I’ve been lucky tbh. Very little weight gain in all this time nor man boobs. The joint pain and muscle loss definitely accumulate over time. So does memory fog in honesty. In some ways the treatment has brought a better side out of me. I’m still very sexual and interested in my partner. Like I say I’ve been lucky. Stay busy , make sure you exercise , find a new hobby. Good luck

Thanks for your message! I read you bio and felt almost ashamed for asking support. Man, what a journey you have been through! You are stronger than I am. 

🙏

User
Posted 26 Mar 2025 at 22:14

 Chris is certainly one of the lucky ones, if you can say such a thing with this horrible disease. many of us are not so lucky and have quite debilitating side effects. Nobody seems to know why🤷🏼‍♂️ all I can say is that I hope you ARE one of the lucky ones..

the support you will receive on this forum is incredible and I DO think you misinterpreted what  was said, understandable under the circumstances.

i wish you well on your journey.

Derek

User
Posted 26 Mar 2025 at 22:31

Originally Posted by: Online Community Member

 Chris is certainly one of the lucky ones, if you can say such a thing with this horrible disease. many of us are not so lucky and have quite debilitating side effects. Nobody seems to know why🤷🏼‍♂️ all I can say is that I hope you ARE one of the lucky ones..

the support you will receive on this forum is incredible and I DO think you misinterpreted what  was said, understandable under the circumstances.

i wish you well on your journey.

Derek

Derek, I have also read lots of your messages on the forum. You gave a lot of time to inform people like us and I greatly appreciate it! 

Once again, I do apologize for misinterpreting the message from one of the responder. The barrier language and the burden of the news is still my excuse for this misinterpretation. 

 

 
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