Radio Therapy or Surgery??

User

Posted 15 Sep 2023 at 12:53

Hi Elaine,

I have sent you a PM but your inbox is full.

maybe you could delete an old message to allow mine to be delivered.

thank you

mark

User

Posted 16 Sep 2023 at 12:56

Hello .In answer to your question no I havnt been given a specific time table .Initially they said 2 to three years but on going research into Enzalutimide indicates that whilst its working there is no reason to come off it as the research has indicated very good results in overall survival and inhibition of progress the longer a man with my prognosis remains on it .Some men are still taking it after 5 years and upwards of five years .Enzalutimide is being trialed for many types of cancer now including brain cancer and bladder cancer . This disease is nasty and I am under no illusions as to the fact that it may return but I am considered in remission and happily living my life !

User

Posted 24 Sep 2023 at 13:03

Hi Everyone,

So had the RP which was a nervous experience.

Glad I’ve had it done now. Surgeon managed to save nerves on one side and most on other.

Continence is good so far.

Just need to wait on histology now. Hoping there is no node involvement and I have negative margins!

This waiting is very difficult..

best wishes to everyone

Mark

User

Posted 24 Sep 2023 at 13:42

Great to hear from you again Mark and I’m pleased it went well and you’re making progress.

Yes, the waiting is always the worst part, I was like a bear with a sore head waiting on my first PS a test after RT. You do get use to it though and need to keep yourself busy to keep your mind off it.

All the best with your recovery!

Derek

User

Posted 24 Sep 2023 at 13:45

Glad it's done and remarkably fast for the NHS. Give yourself plenty of time for recovery. Waiting on test results will be your future from now on, worrying about them won't change them, so chill out.

Dave

User

Posted 24 Sep 2023 at 14:49

Thanks both

User

Posted 24 Sep 2023 at 15:36

Hope recovery continues to go positively Mark. That’s great if you already think continence is going well. No avoiding the horrible wait for results but whatever they are you will know and can then plan accordingly - it’s the not knowing that is horrible we found.

User

Posted 24 Sep 2023 at 17:58

Thank KD123,

All sorts of things are going through my head. I think I google too much too and I get ahead of myself.

My staging was T3b N0 M0 and after a PSMA pet scan it stayed that way.

Just hoping it isn’t worse.

Prepare for the worst but hope for the best!!

🙏🤞

User

Posted 24 Sep 2023 at 20:53

So glad it’s done and you’re feeling ok Mark. Wishing you a full and speedy recovery.

I’m so sorry aswell that I’ve just seen your message from the 15th about my inbox. I’m just on holiday and left on the 15th so I missed it! I have deleted some messages now so please feel free to message anytime x

User

Posted 24 Sep 2023 at 21:05

Mark,take it easy but keep mobile, hope your recovery goes well.

Thanks Chris

User

Posted 24 Sep 2023 at 21:10

Very best wishes for a rapid recovery, Mark!

Chris

User

Posted 24 Sep 2023 at 21:59

Thank you to the two Chris’s

User

Posted 24 Sep 2023 at 22:01

Thank you too Elaine..

hope you enjoyed your holiday

best wishes

Mark

User

Posted 27 Sep 2023 at 17:20

Hi Everyone,

So had my RP which went well.

Continence is v good and feeling better everyday.

Just had histology results.

Downgrade from 5/4 to 4/5 Gleason.

Clear margins

1 out of 22 mode invaded.

Urologist has recommended PSA in 3 months.

Could I have everyone’s opinion on this please.

Mainly if you think I should be having RT and hormones straight away.

Thanks

Hope everyone is keeping positive.

Mark

User

Posted 27 Sep 2023 at 17:29

Good news on the downgrade but unfortunate about the node involvement. You should have a PSA 8 weeks after the RP to see where it at. Ideally it should be <0.001 (mine was) and then it's a case of monitoring.

I don't think they will start or even consider HT/SRT at this stage - you need to get that first PSA result and that will guide them on any next stages that might be needed.

Good luck

User

Posted 27 Sep 2023 at 18:55

Agree with Steve, wait and see and try not to worry…I know it’s difficult.

if it does need treatment could they not use SABR, I’m not sure whether that would require HT as well though.

Stay strong no positive for the sake of you’re recovery💪

Derek

User

Posted 27 Sep 2023 at 18:56

As above concentrate on recovery and ask why the PSMA PET didn't spot the lymph node.

User

Posted 27 Sep 2023 at 20:03

I’m not sure my have PSMA didn’t spot it.

Maybe it was too small.

It’s been taken out now but not sure what it’s left behind or damage it’s done or there are more..

Was hoping this was it for a while but not so sure now!

Best to everyone

Mark

User

Posted 27 Sep 2023 at 22:03

Unfortunately when your T3b, node involvement is always a strong possibility. I had one out of 34 nodes which came back positive. You have also had quite a few nodes removed so chances are any undetectable micromets have been removed with them. It's now a case of sitting tight until the PSA test (easier said than done). The good news is you have no positive margins on the prostate. My surgery was 19 months ago. Since then I've had SRT to my prostate bed (I had a positive margin on the prostate). My PSA has remained undetectable since, which seems to suggest there was no further cancerous lymph nodes left behind. Hopefully you should be the same. Chris

User

Posted 27 Sep 2023 at 23:12

Thank Chris.

Thats reassuring. Hopefully they got it all out for both of us and that’s the end of it!

🤞🤞🤞

All the best

Mark

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