BCR almost 4 years after RP

hi Clive,  Your path will depend on the CT scan result.  If it sees nothing they could send you for a clearer psma PET scan, unless that was what you had.  They might start hormones and give you RT with a broad beam without knowing where it is.

It's likely you'll get hormones and RT.  With a Gleason of 8 you might get chemo with hormones for longer and RT.  The chemo I've heard isn't as traumatic as other cancers.  Although we're all different.  If you have a small amount of spread on the scan they can adjust the RT to capture it.

I'd try to push a bit as you don't want the psa to get much higher although many hospitals don't scan until 0.5, although that seems high to me.

You might search and read Ulsterman who had salvage treatment at a much earlier stage but he's written a lot and it worked.  His scan changed the treatment.

Edited by member 16 Mar 2023 at 18:37  | Reason: Not specified

"Now coming to my questions: I saw Lyn write in a reply somewhere that this scenario smacks of classic local reccurence. Can someone direct me to more reading on this subject please? Also what should I be expecting of the oncologist when we first meet? Will they likely have a pathway already planned or will there be more tests or imaging? If the latter what bearing could these delays have on my condition?"

Classic local recurrence pattern is an undetectable PSA for a couple of years and then a fairly slow and steady rise, following a pathology report of negative margins and N0M0 - sadly, I don't think you fall in to this group. Your PSA rise could be as a result of bits of cancer left behind in the prostate bed, but it could just as easily be the cancer is on the move around the lymphatic system or there are now mets somewhere. I think if you were my brother or husband, we would not agree to pelvic RT until scans had been done. Not sure I would get too hung up yet on which tracer; I would go for whichever they propose first (choline PET and a bone scan?) and see if anything shows. If not, then I would ask for PSMA or axumin scan. The important thing is not to start HT before those scans are done!

What happens next really depends on what (if anything) the scans show.

Edited by member 16 Mar 2023 at 22:50  | Reason: typo

Clive, I had SRT without the scans in 2017. The PSA dropped for a while,so presumably something was in the bed. Following a further PSA in 2022 I had SABR treatment to a pelvic lymph node, picked up by a PSMA scan. Numerous CT scans as part of a trial did not show anything. 

Thanks Chris 

Hi Clive,  Yes, a conundrum about the best time to have RT, I've heard it said as soon as possible.   I'd seriously consider RT without scan evidence, although I'd rather not.  If something is found elsewhere there is a chance of treating it separately and I wouldn't consider it a waste of time if it reduced the cancer burden, although the NHS might do.

An oncologist said they're a lot better at focussing on small areas now.  He quoted that there was a time when giving RT to a lymph node could burn the instestine, which can have long term effects, but a good operator can now focus on the lymph node with no damage to the intestine.

On psa, yes <0.1 is undetectable but 0.2 and 0.3 as quoted by yourself are just single decimal places.  Your 0.3 might be 0.26 or 0.35 which is getting nearer the 0.5, which might be 0.45. 

I can well imagine your head is full.

Your quote of £2500 sounds reasonable and the timescale better than I expected.  Assuming you know exactly what you're getting and what your NHS doctor will do with it,  I'd be wanting to go for it with a psa at 0.3.  Although I'd want to speak to my NHS contact to see what they offer.  I once rang a private clinic and they sorted out the referral with my GP who I'd seen but not told I'd go private.   Peter

I live in mid Wales, I had my PSMA scan here: https://www.thelondonclinic.co.uk/specialities/cancer-care

It was quick and easy caught the train there and back in a day.
Didn't find anything but I'm glad I had it done, has given me the confidence to wait for further treatment.

As well as scanning you need to consider if you want whole pelvis or just prostate bed. I have seen 2 oncologists and they recommended different treatments!!

Having read lots of experiences on here over 5 years I get the feeling thoughts are changing from go to Salvage RT early with 3 years HT to wait and scan and maybe no HT. In my case slow rise over 7 years I am minded to wait and scan. If you have a fast doubling time you may not have that option.

Edited by member 18 Mar 2023 at 01:12  | Reason: Not specified

Dave , interesting comment about RT being pointless. I had salvage RT three years after surgery. In 2017 SRT to the prostate bed was done as a"very educated guess" and some extent still is. I was refused a PSMA scan and was told if I had one and it found anything SRT would not be on the table and I would be on HT for life. 

The SRT to the prostate bed did reduce the PSA, so something was presumably in the bed. The PSA dropped to 0.08 after SRT then fluctuated for a while. In 2022 at a PSA of 1.4 a PSMA scan found a pelvic lymph node tumor that was treated,  the PSA stalled for a short while before rising again and a second pelvic lymph node tumor has been found and treated.

So the question , is SRT to the prostate bed still useful, even knowing there is something elsewhere. Was my SRT pointless or has it slow down my progression, it certainly kept me off HT for five years, I have now been on bicalutamide for four months and wish I wasn't. There is another post talking about trials on removing the "mothership", is this a variation of the same idea.

Interestingly my first lymph node tumor treated last year still showed a residue of activity nine months after SABR treatment but they still went ahead with SABR treatment to a second lymph node tumor.

Are we just guinea pigs?

Thanks Chris