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Possible diagnosis chance advice please?

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User
Posted 05 Feb 2023 at 10:28

We finally had an NHS diagnosis as follows:

PSA 27, T3b N1 M0. Gleason 4+4 all confined to prostate region no other areas/organs affected. Locally advanced. 
We have our first hormone injection this week. 

We waited so long for our biopsy we decided to go privately for our treatment and the consultant suggested a PSMA pet scan which has confirmed the above but also ‘Suspicious for possible early bone mets’ possible M1b. It also says very early with good prognosis. 

Has anyone experienced this and what are the treatment differences. What does it mean for the outcomes? thank you in advance to anyone who replies. 

 

User
Posted 05 Feb 2023 at 15:20

Hi 

Sorry you are here but there are still robust treatment options.  I also have positive lymph nodes following prostatectomy so not exactly the same but similar.   

You are probably looking at 2-3 years ADT plus abiraterone or enzalutimide.   In addition I'm assuming some sort of radiotherapy treatment to prostate plus the full pelvic region.  I don't have a prostate so it is just the pelvic area for me.

Sometimes triplet therapy which includes early chemo is also used particularly where there are bone mets. I'm in the middle of this at the moment and getting through it.  

Ref outcomes my understanding is that I won't know if it's all worked out not for a few years down the road if/when I come off the ADT.

Obviously your medical team are best placed to advise and put a treatment plan in place.

Best wishes.

Edited by member 05 Feb 2023 at 18:52  | Reason: Not specified

User
Posted 05 Feb 2023 at 16:01

Hi, thank you so much for your reply. It's good to hear from others in a similar situation. We have our appointment with the oncologist on Wednesday so will discuss options with them. Good luck with all your treatment and thank you again for replying. Best wishes. 

User
Posted 05 Feb 2023 at 19:04

Good luck with it.  Interested to hear how you get on.

User
Posted 05 Feb 2023 at 23:56

I would guess they'll offer you 37 sessions of radiotherapy and hormone therapy for 3 years. May want to do chemo too because of the N1 and possible M1b, although swapping that for Abiraterone or Enzalutamide might be a possibility.

I would also ask if they can include the possible bone met in the RT treatment. That will depend where it is, and they might want to get some better imagery of it first.

User
Posted 06 Feb 2023 at 06:59

Depending on the number of bone metastases you might want to ask them if they could consider SABR to these?

User
Posted 07 Feb 2023 at 16:03

I think that you will only torture yourself with what ifs - best to wait for tomorrow to hear whether the onco agrees with radiology / radiography that these are bone mets.

Chemo is given by infusion, every 3 weeks for 6 to 10 cycles.

Edited by member 07 Feb 2023 at 16:04  | Reason: Not specified

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

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User
Posted 05 Feb 2023 at 15:20

Hi 

Sorry you are here but there are still robust treatment options.  I also have positive lymph nodes following prostatectomy so not exactly the same but similar.   

You are probably looking at 2-3 years ADT plus abiraterone or enzalutimide.   In addition I'm assuming some sort of radiotherapy treatment to prostate plus the full pelvic region.  I don't have a prostate so it is just the pelvic area for me.

Sometimes triplet therapy which includes early chemo is also used particularly where there are bone mets. I'm in the middle of this at the moment and getting through it.  

Ref outcomes my understanding is that I won't know if it's all worked out not for a few years down the road if/when I come off the ADT.

Obviously your medical team are best placed to advise and put a treatment plan in place.

Best wishes.

Edited by member 05 Feb 2023 at 18:52  | Reason: Not specified

User
Posted 05 Feb 2023 at 16:01

Hi, thank you so much for your reply. It's good to hear from others in a similar situation. We have our appointment with the oncologist on Wednesday so will discuss options with them. Good luck with all your treatment and thank you again for replying. Best wishes. 

User
Posted 05 Feb 2023 at 19:04

Good luck with it.  Interested to hear how you get on.

User
Posted 05 Feb 2023 at 23:56

I would guess they'll offer you 37 sessions of radiotherapy and hormone therapy for 3 years. May want to do chemo too because of the N1 and possible M1b, although swapping that for Abiraterone or Enzalutamide might be a possibility.

I would also ask if they can include the possible bone met in the RT treatment. That will depend where it is, and they might want to get some better imagery of it first.

User
Posted 06 Feb 2023 at 06:59

Depending on the number of bone metastases you might want to ask them if they could consider SABR to these?

User
Posted 07 Feb 2023 at 15:02

Thanks Andy62. The report says very early bone mets and they didn't show on the original bone scan - one pelvic area and one rib. Is it usual to have chemotherapy for the N1 diagnosis? Do you know if the chemo is given by tablet or by injection? We are seeing the oncologist tomorrow but it's hard to stop thinking about it! Thank you again for your replies. 

User
Posted 07 Feb 2023 at 16:03

I think that you will only torture yourself with what ifs - best to wait for tomorrow to hear whether the onco agrees with radiology / radiography that these are bone mets.

Chemo is given by infusion, every 3 weeks for 6 to 10 cycles.

Edited by member 07 Feb 2023 at 16:04  | Reason: Not specified

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

User
Posted 07 Feb 2023 at 16:13

Thank you LynEyre. I appreciate your reply. 

 
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