BCR almost 4 years after RP

User

Posted 17 Mar 2023 at 18:10

Like I mentioned above Chris, I've only stuck my head in this rabbit hole. You lovely people have a world of experience that will help guide us newcomers. Good luck next week.

User

Posted 18 Mar 2023 at 02:11

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 02:12 | Reason: Not specified

User

Posted 19 Sep 2023 at 17:30

Hi all, it's been a while. I now have some tales to tell and some updates. This may not be exactly chronological but it should explain how I've got to where I am now.

I emailed my Urology consultant asking about PET scans. He said I wouldn't get one until I'd had a CT scan.

I got a C T scan that didn't show anything. I was referred to Oncology and waited......

Eventually I complained and hey presto got an appointment within a few days. The ONC said I should just start the standard pelvic salvageRT. I asked if I could get the PET scan. (The Trust actually does them in-house) He said he would refer me but warned me that I may be rejected because I didn't met all the criteria. Not sure what that is but possibly PSA 0.5 or less.

After the PET I returned to see him and hey guess what, two met nodes "higher up" that the RT wouldn't have touched. They are small but in inaccessible locations. He tells me this is a problem but he'll refer me for RT and the team will discuss options. Meanwhile I'm put on Bic and Decapeptyl 3 monthly. After three months my PSA is less than 0.1. Phew.

Last week I got called up for my RT planning. I assumed that the MDT had come up with some options and all would be revealed at this appointment. When I mentioned it to the RT nurse she knew nothing about it and offered to track my ONC down in clinic so I could speak to him. I went into his office where he announced that the team thought I should be having Chemo. Duh! When was he going to tell me? I had no appointments pending with him. This was just a chance meeting.

Anyway this brings me to now. He has given me some reading material to consider. Either Docetaxel or Enzalutamide. I'm a reasonably fit 67 year old so I'm thinking chemo. One of the factors is that I've heard that Enza can follow chemo but not the other way around. Also I got the impression that the ONCs preference would be chemo.

Your thoughts, feelings, advice would be most welcome.

User

Posted 20 Sep 2023 at 00:03

Sorry Clive I can't work out from your post if the lymph nodes are being treated or not? Are they doing the prostate bed too?

User

Posted 20 Sep 2023 at 00:38

Hi Jonathan, no they're not. When the ONC announced that they had decided on chemo he cancelled the RT at the same time. It was all a bit after-thought ish. I'm not thrilled with the care so far I have to say

User

Posted 20 Sep 2023 at 01:12

So they were lining you up for an RT planning scan, not knowing about the higher up lymph nodes, and you would have had pointless RT if you had not mentioned this to the nurse. I wonder how many other mistakes the ONC has made.

I have a friend who is receiving appalling care whilst on active surveillance. It seems in the modern NHS you have to manage your own treatment.

Dave

User

Posted 20 Sep 2023 at 08:56

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

User

Posted 20 Sep 2023 at 09:10

That's the long and short of it Dave. Plus, the ONC wouldn't have known about the higher nodes if I hadn't pushed for the PET scan.

User

Posted 20 Sep 2023 at 10:46

So are you getting the nodes treated now?

Remember the treatment you get isn't "decided" by the Oncologist. It a process of informed consent and the Onco has a duty of care to inform you of all your options.

I think you have the basis of a negligence case against the Onco, clearly he doesn't know what he is doing.

User

Posted 20 Sep 2023 at 10:53

Regarding treatment choices, that Dr Kwon video from 2016 on the other thread is worth watching again. Supports the use of all the tools while PC is still "oligo".

My daughter's wedding is next week I have postponed my PSA until October, the anxiety and what ifs are just starting! I hope it's gone down again or stayed the same, having had residual PSA for 8 years now I feel that may be denying the inevitable!

So shame this forum doesn't allow "voting" I would love to put it to you lot what my choices should be to take the decision out of my hands if it has started up again!

User

Posted 20 Sep 2023 at 11:22

I know how hard it is to get it out of your head but hopefully a daughter's wedding associated speeches 😱 will be enough to distract you for a little while. Congratulations to her and enjoy the day.

I had already asked about SABR but he says the nodes are too close to my aorta and nobody would take the risk.

The largest tumor is on the prostatic bed but I assume chemo will treat it all wherever it's found. The enzalutamide option was only presented when I asked about alternatives to the chemo. The trouble is he's the only ONC I know and I have little faith. Hence my post on here.

User

Posted 20 Sep 2023 at 14:11

If they won't irradiate them ask if they could be surgically removed, don't give up on a cure to easily! Definitely worth a second opinion IMHO. Yes speeches!

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