Support needed

Tulippy, sorry you find yourself in this situation.I had surgery at 62 and post surgery I was upgraded from T2* to T3a , but my Gleason was only 4+3. I did have positive margins and extra prostatic extension. My post op PSA was 0.03 but about 33 months after surgery my PSA breached 0.2 and at 0.27 three years after surgery,I started salvage RT without HT. 

SRT didn't completely work for me and five years after SRT,I had my first course of SABR treatment to a single lymph node. A few months ago ( nine years after surgery) I started six months of bicalutamide and had a second course of SABR treatment to another pelvic lymph node, I now await the outcome.

Detection methods have improved in the last few years and my SRT was done on the basis of "an educated guess based on years of experience and data". 

I was supposedly non nerve sparring, but I do still get the odd surprise.

Lots of tools still in the box, so stay positive.

Thanks Chris 

Bit harsh Lyn! Whilst tulippy knew that rt was highly likely, seeing the histology in black and white and trying to process all the facts whilst remaining positive is a different story! 

Chris you have lifted me a lot tonight 👍🏻

OH and myself still feel RARP was best decision at the time, and still now, as it’s got rid of most of the nasty stuff.

I understand now positive margins might not be as bad as I’m thinking and starting radiotherapy asap is the best option.

Does anyone know what a bad PSA result on Thursday would be? And does higher number mean more cancer is there, more than a lower number?

I read somewhere that someone said chemotherapy with the radiotherapy has better outcomes…is this an option we should bring up on Thursday?

Thank you again…just pouring myself more wine 😫

Tulippy, my RARP, didn't eradicate my cancer but based on my post Op PSA it removed 99.7 of it. Removing the mother ship is often described as flawed thinking, I don't know. The senior onco at my hospital was a guest speaker at a support meeting and he believes in removal of the mother ship. Added,My prostate was removed with curative intent.

My salvage RT was given without a PSMA scan and although there was something in the prostate bed there was obviously something outside the bed.

Lots of debates on when to apply treatment.

Hope all goes well.

Thanks Chris 

Edited by member 19 Jul 2023 at 19:05  | Reason: Clarity

Thank you Chris. Are you saying that because something was outside the prostate bed you would have benefited from a PSMA before adjuvant radiotherapy?

This is what I’m trying to understand, if we should push for a PSMA?

Kind words from you all, I’m having a bad night, cried because I couldn’t do a bin bag up!, and you all are helping me so much x

Tulippy, my salvage RT was three years after surgery so there is probably a difference in our situations, but you won't know until tomorrow. So six years ago I was being advised by the members on here to get a PSMA scan. Back then they were not used as much as now. My oncologist said no and at the time my surgeon said if they found something outside the prostate bed then then salvage RT would no longer be offered and it would be straight onto HT, thankfully things have changed. 

My oncologist said RT to the prostate bed was "an educated guess based on years of experience and data" . My PSA went from 0.27 down to 0.04 then slowly crept up again so it is possible the cause of the 0.4 was outside the prostate bed. We were going to wait until the PSA hit 8 or 10 before having further treatment or a PSMA scan but advances in scanning and perhaps a push from me meant I had a PSMA scan last year at 1.4.

Nothing was seen in the prostate bed but a lymph node lit up. So either the SRT killed all the cells in the prostate bed or they are too small to see. The lymph node was treated with 5 SABR treatments in August last year but PSA continued to rise and another PSMA scan in April this year lit up another tumor and showed a residue in the tumor detected last year. I had another 5 SABR treatments to the new tumor in June and started on six months of bicalutamide.

I am quite happy to have treatment after treatment rather than go to a life time of HT. The second lot of SABR was paid by my wife's work health insurance and it is not cheap, but the oncologist has more options in the private sector.

I was upgraded to T3a after surgery, had positive margins a extra prostatic extension.It took nearly three years for my PSA to reach 0.2 and was 0.27 when I started SRT.

I just keep on going, I have a philosophy when faced with a problem, can I do anything about it ? if no ,there is no point worrying,if yes get on and do it. Stay positive.

I really hope you get a good result tomorrow.

Thanks Chris