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Post RP & rising PSA. Next steps?

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User

Posted 28 Jan 2025 at 22:59

Back in June 2023 I had a RP and had 6 months where PSA was <0.01 then in the subsequent quarters it rose to 0.02, 0.04, 0.06 and the last one was 0.12, a doubling. Post RP when they had a look at the prostate they changed my grading from 3-4 to 4-3 with a positive margin so I was prepared for this happening. I was really hoping this inevitable climb would be a lot slower though. So once again we are back on this merry-go-round.

I'm seeing the Oncologist this week to discuss possible next steps and am not sure how to approach this or what I will be offered. I'm aware some trusts wait till the PSA has either reached 0.2 or 0.5 before I believe a PET PSMA is even offered. When I last spoke to the Uro-Oncology nurses they said 0.5 was the trigger in Worthing, Sussex.

I would appreciate any insights. I know without having the above scan we won't know where the cancer has gone to so I'm assuming this will dicatate what I will be offered. There is more info in my profile. But again any words of wisdom would be appreciated, many thanks.

User

Posted 29 Jan 2025 at 22:37

I'm going to guess a scenario for me based on your experience might be SRT very shortly and then see what happens. I looked at your profile Chris and it's been some journey you've been on but it does give me hope. This PC is a journey. Can't think straight at the moment but will update. Thanks for responding.

User

Posted 30 Jan 2025 at 19:05

Well having seen the Oncologist today I'm feeling more at ease, not sure why I was so anxious about this since I had a good idea what was going to happen. He's suggested wating for a further rise and then taking action and has said if I hit 0.2 he will send me for a PET scan to determine the spread and follow-up with a course of 20 sessions of radiation and HT for up to 2 years. I'm happy because some people on here were told a PET scan would not be done until a 0.5 reading had been reached.

The only thing is I'm not too keen on waiting a full quarter until my next blood test so plan to approach my doctor after 2 months to check my PSA again. I can't see that being a problem.

The only thing I darn well forgot to ask is when the decision to put me down for a PET is taken how long will I have to wait before I actually get the scan?

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User

Posted 29 Jan 2025 at 06:04

Hi Gerry.

There are several blokes on here who have been in a similar position to you. I'm sure they'll soon pop along and help. In the meantime here's a thread that may assist you:

https://community.prostatecanceruk.org/posts/t30068-PSA-detectable-9-months-post-RARP#post303958

Best of luck mate.👍

User

Posted 29 Jan 2025 at 07:02

Thank you Adrian and I will be reading thru the link you sent, many thanks.

User

Posted 29 Jan 2025 at 17:39

Hi, from what I can gather all the health boards have different trigger points for taking action on a rising PSA after a RP. My health boards trigger is 0.3, as they say anything would be to small to see on the scan before that. Also they only test to one decimal place so a 0.1 test result could be anywhere between 0.10 or 0.19 therefore no increase will be recorded until 0.2 .

User

Posted 29 Jan 2025 at 17:58

What I'm reading from other posts is some people are offered SRT and or HT before waiting for another rise above 0.2 or for a 0.5 to be reached (which would or should be detectable by a PET scan). I'm seeing the Oncologist tomorrow and I'm fully expecting for them to stall until another rise is confirmed.

But should I not push for SRT & HT considering I was put in a high risk category following the post op biopsy and the fact I had a positive margin. Why wait for a detectable level for the purposes of a scan?

My PSA on diagnosis was 60, 3 months later after all the scans and biopsy had been completed it had reached 68 and at which point I started on the Bicalutamide which I was on for 7 months before the RARP was carried out and at which point my pre-op PSA was 33.

I remember the surgeon saying after the RARP how my prostate had shrunk, not sure why he remarked on this.

User

Posted 29 Jan 2025 at 18:39

Yes it's all a bit confusing I think as nobody's path is the same and there doesn't seem to be a standard solution. My thought was that if they can see it, would a more targeted RT be done rather than blitz a larger area? Does it even work like that? Would that reduce side effects, I don't fancy the inconvenience again etc.

User

Posted 29 Jan 2025 at 19:05

It's so hard to know what to do and since we are not medical personnel and don't have all the facts of someones case we assume we are the same hence should follow the same path. Most of us have to put our fate in the hands of our oncologist/urologist and hope they make the right choice. I'll be rather anxious if the Oncologist says let's way till we get to 0.5 as I'm thinking this damn thing could be spreading. I'm too anxious to think straight right now.

User

Posted 29 Jan 2025 at 19:44

I had surgery in 2014. I had SRT 3 years later in 2017. The PSA was 0.27 and a PSMA scan was refused, the SRT went ahead on the "very educated guess" scenario. I didn't have HT due to a stricture that was being treated.

Something was obviously in the bed because the PSA fell but it only went down to 0.08 and soon started to rise, so we can assume it was already outside the bed. I had positive margins and extra prostatic extension.

I have had 4 PSMA scans, 3 picked up either a hot spot or hot spots at 1.8,4.6 and 6.7. The third of the scans at 1.4 saw nothing.

Unfortunately there is and element of guess work and assumptions in how we are treated.

Thanks Chris

Edited by member 29 Jan 2025 at 19:45 | Reason: Not specified

User

Posted 29 Jan 2025 at 22:37

User

Posted 29 Jan 2025 at 23:13

As you know you had a positive margin there is probably no point waiting for 0.2.

The questions to ask the oncologist are whether a PSMA scan should be done up front and if you need whole pelvis or just prostate bed.

User

Posted 30 Jan 2025 at 19:05

The only thing is I'm not too keen on waiting a full quarter until my next blood test so plan to approach my doctor after 2 months to check my PSA again. I can't see that being a problem.

The only thing I darn well forgot to ask is when the decision to put me down for a PET is taken how long will I have to wait before I actually get the scan?

User

Posted 21 Sep 2025 at 22:31

Well in the end it took 3.5 months to get the PET scan and from which I found out at a face to face a week ago came back negative. My PSA had risen from 0.19 to 0.22 in the intervening 4 months. The fact the scan came back negative was a relief as was the less than expected rise in PSA. Of course I know the fact the scan picked up nothing is no guarantee at all but I'll take it for now. I've been put on Bicalutamide 150mg daily for 2 years and will have radiation in 3-6 months so I'm told to the prostate bed and lymph nodes. I was offered a choice of LHRH agonists e.g. Zoladex, Decapeptyl, Gonapeptyl or the Anti-Androgen options e.g. Bicalutamide, Flutamide etc. I was veering towards the LHRH agonists as it's one injection roughly every month but an Oncologist at that last face to face suggested if I was an active person to go for the Bicaluatmide option instead. Stupidly I didn't ask why. I will also be taking another drug as the Bicalutamide enlarges the breasts.

So is the Bicalutamide a wise choice @150mg daily as regards side effects?

Anyone know why it's a better choice than the other drugs if you're active, I will clarify via my nurse?

The radiation treatment when it comes around will be for 1 month every weekday to the prostate bed and lymph nodes. Any idea what I could expect as regards side effects and how it will effect going to work. It will involve about 2-3 hours of travel each day.

Any advice much appreciated, thanks folks :)

User

Posted 21 Sep 2025 at 23:07

Hi Gerry.

A mate of mine who is an NHS worker, had RARP three years ago, and now has BCR. He's been prescribed Relugolix.

https://prostatecanceruk.org/prostate-information-and-support/treatments/relugolix#:~:text=Relugolix%20(Orgovyx%C2%AE)%20is%20a,alongside%20radiotherapy%2C%20if%20you%20have:

He is due to have the same radiotherapy treatment as you, starting in two months time. He is being allowed time off during that treatment.

Another mate of mine, who was a copper who had an office type job, remained at work whilst having salvage radiotherapy treatment.

Best of luck, mate.👍

Edited by member 21 Sep 2025 at 23:09 | Reason: Add link

User

Posted 04 Oct 2025 at 22:42

Thanks Adrian for replying. I guess it all comes down to side effects and how much time you have to spend travelling to the RT appointments as to how much it effects one's work routine. I still haven't asked why Bicalutamide is a better choice than the LHRH agonists drugs if you're active but I'm guessing it's because it doesn't stop the production of testosterone.

User

Posted 05 Oct 2025 at 05:14

My husband has been on an LHRH agonist and he still worked every day during RT. RT was every weekday morning for more than a month. He still spent 5 hours or so at an office job. He also walked an hour every day but was knackered by late afternoon. The side effects only set in after a couple of weeks. GI difficulties but we could still go away on the weekend. By the end he was going to the toilet every hour during the night. But it settled down a few weeks after RT ended. Hope this helps.

User

Posted 07 Oct 2025 at 18:10

My gut health isn't great at the moment though this was something going on before the bicalutamide and am planning on investigating what might be causing this by going on an elimination diet at some point. So 2 weeks on 150mg Bicalutamide and fatigue has increased so anything less than a perfect night's sleep leaves me struggling the next day. So God help me when the RT starts.

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