PSA starting to rise 3 years post RP

User

Posted 12 Dec 2023 at 19:18

Hi, Steve here and my first post.

I'm now 66 and had RP in 2020. My diagnosis was T2(c)N0M0, Gleason 3+4, 5 from 31 cores affected, pre op PSA of 6.1. LHS nerve sparing but long term ED disappointingly. However recovered really well and undetectable PSA (done at my local main hospital) of always ‹0.1. Seeing as I'd gone more than 2 years since op we agreed to leave it 12 month till next blood test. Just had it done 6 weeks ago and it's 0.2. A repeat test after four more weeks is now 0.3. Now I understand due to the lack of a second decimal place these two readings could be as close as 0.24 and 0.25. However they could be as far apart as 0.16 and 0.34. We'll never known, but because two successive readings of equal or greater than 0.2 is I believe considered treatment failure I fully expected my surgeon to refer me for a PSMA PET scan and Oncologist. However he wrongfooted me by saying

'normally we might have a scan and then see what lights up and treat with RT. But, we might not find anything, and treatment at this low level is 50% unsuccessful plus adverse effects of the RT. Another approach is to treat with hormones. However that wouldn't happen till PSA around 10, which could take years. By then I'm less bothered about sex and I've not had to endure RT.'

That being the gist of what he said made me feel I was being encouraged not to rush to have scan plus RT(guarding against overtreatment) versus let the cancer take hold but knock it back with hormone therapy if and when. After voicing my concerns I opted to repeat PSA after six weeks.

I'd be grateful for any thoughts or advice on this dilemma. My current feeling is to push to consult an oncologist and ask their view, especially on getting the scan. I understand my surgeon's concern is quality of life but treatment from now on isn't his main area of expertise so I should get a better steer from the oncologist.

Sorry it's a bit of a tome but I'm grateful to anyone who may read and comment.

Thanks

User

Posted 13 Dec 2023 at 00:11

Those PSA results meet the definition of treatment failure. If he can get you past 2025 without declaring a failure, he can tick his little box for patient passing the five year survival test. He gets brownie points for each tick.

It is true that some oncologists would wait for PSA to reach 0.5 before doing a scan, others might think a scan worthwhile even at a low level, and if nothing found either wait a while or radiate the prostate bed. Whatever your next treatment is, it is no longer something a surgeon specialises in.

Dave

User

Posted 13 Dec 2023 at 12:17

Thank you Chris,

I'm very grateful for your post and advice. Good to know you wouldn't change your decision either and I will be keeping fingers crossed for six weeks time.

I should come clean and explain that I'm being treated privately, whether that turns out to be good or bad. Convoluted reasons. Chronic history of prostatitis, stubbornness of which lead to a private local urologist (I live in North Wales) who sorted me at that time. Any subsequent prostate issues I reverted to him. When, exactly 4 years ago, I asked GP for a 'cold' PSA test, ie prostatitis wasn't playing up, and was referred to NHS at a reading of 7.5, my immediate thought was, I know my PSA could fluctuate due to prostatitis, so didn't want premature invasive investigation, hence why not get a private chat with my original urologist? However the private health people sold me on 'Check for Cancer' pathway involving an mpMRI scan prior to consultation. North Wales haven't got the technology so nearest was in England, 60 miles away. Lesion found, bladder and transperineal prostate biopsy and cancer diagnosis and subsequent surgery and follow up. All during the COVID and lockdown period. I felt and still feel extremely fortunate.

The upshot of that is I'm sort of locked into this private system. The private health company suggest that I'd struggle to get referred back to Wales NHS easily and the treatment options would still be relatively poor. I should therefore be grateful that I will probably get whatever tests I need as long as someone is paying for it. I could even get a second opinion if the surgeon's oncologist (who I spoke with briefly prior to electing for RP) doesn't inspire me with confidence.

I shall definitely be following your advice Chris and also keep abreast of your progress.

All the best,

Steve

User

Posted 13 Dec 2023 at 14:05

Hi Kev,

Yes, you're right. I was just caught on the hop at the time. Oncologist asap is my belief too and scope out is a succinct way of summing up my thinking.

Thanks very much,

Steve

User

Posted 13 Dec 2023 at 14:28

Hi Chris,

I do feel a bit guilty that I'm able to access potentially more options. So far, apart from an annual excess, I've had no limits applied, plus I know that PSMA PET has been okayed should I need it.

Thanks once again,

Steve

User

Posted 13 Dec 2023 at 17:03

Hi Adrian,

Thanks for replying and your concern. Everyone on here is great and supportive, I couldn't be more grateful. So many different stories but a common adversary. You're spot on with the lulling bit. I'd been patting myself on the back for three years thinking I'd made a difficult decision to opt for surgery but at least it was the correct choice as it had 'killed the beast'. How wrong I would seem to be. But there we are and trying to be stoic it is a new challenge.

Glad to hear you're doing ok thus far and I shall keeping a look out for your progress.

With kind wishes,

Steve

User

Posted 03 Jan 2024 at 18:40

Hi everyone,

Latest PSA now 0.21(at surgeon's lab) which compares favourably with 0.2 and 0.3 previously.

Saw oncologist today as all here suggested I should(thanks) and he recommended PSMA PET. All the indicators are that the cancer has recurred, probably locally, so even if scan shows nothing he would irradiate the prostate bed. 52.5Gy in 20 fractions which he suggested was typical nationwide.

Symptoms of diarrhea and urinary incontinence but for most is short term. A small number of men get chronic issues.

He said 60% cure rate (not sure how that is defined) , the rest need HT at some point but mortality of 5% in this scenario.

Scan in about 4 weeks and PSA test around same time.

Feel happier to have a definite plan in place and an oncologist who is telling it straight.

Happy New Year to everyone(better late than never)

Steve

Show Most Thanked Posts

User

Posted 13 Dec 2023 at 00:11

Dave

User

Posted 13 Dec 2023 at 00:37

I was in a similar situation almost three years after surgery, I was refused a scan and had salvage RT as a "very educated guess". A recent scan showed nothing in the prostate bed but there was /is cancer in a couple of lymph nodes.

SRT didn't do me any favours, my side effects were quite rare, but it presumably did eradicate the cancer in the prostate bed. In hindsight if I could turn back the clock I would do exactly the same thing.

I think your surgeon is doing you a dis service. Get an appointment with an oncologist and get a more modern approach to treatment and don't miss the boat. I was 65 when I had SRT, I dodged HT until this year and then it was only six months of bicalutamide. In six weeks I will have an idea of how successful my latest treatment has been .

Thanks Chris

User

Posted 13 Dec 2023 at 01:27

Originally Posted by: Online Community Member

I think you're right to head on over to the oncologist. There might be an optimal moment to have the PET PSMA scan, after leaving a little time for the psa to rise but at your age following a path that could lead to lifetime hormone treatment in a few years time would be a pretty dismal option.

The other process, and it doesn't look imminent for you, is to have HT before figuring where the mets/recurrence might. The issue with that course of action is that any tumors that might be present shrink, so it's impossible to pick them up with a scan, leaving long term HT as the only option.

Jules

Edited by member 13 Dec 2023 at 05:40 | Reason: Not specified

User

Posted 13 Dec 2023 at 10:06

Thanks Dave, and I take both points you make.

Trying to be fair, he made reference to treatment failure in his letter to my GP and talked about observation versus oncology referral/PET and RT, but in matters of clinical excellence and associated ego it's always wise to have a modicum of cynicism.

Given what you say about limits of expertise, it seems obvious that he should refer me onwards anyway. I'm just keen to be better informed and understand what my options might be so I can ask the right questions when I do eventually speak to an oncologist.

Thanks once again,

Steve

User

Posted 13 Dec 2023 at 10:42

Thanks Jules,

I agree that the thought of long-term HT isn't appealing and the corridor of opportunity is narrowing fast should I favour going down the RT route. This is why I pushed for a third blood test to assess in my own mind the rate of changed. His opinion that the PSA is still low doesn't quite feel right on the back of having, in my limited understanding, good pre op numbers, negative margins post op and final staging matching biopsy, suggesting low risk of recurrence, then over two years undetectable, yet here we are. I accept that there are no certainties in life but this prostate cancer is a tenacious little devil.

Kind regards,

Steve

User

Posted 13 Dec 2023 at 10:52

Hi Steve,

I would want to talk to an oncologist sooner rather than later, not necessarily to jump in to more treatment straight away, but to scope out where to go from here.

Good luck.

Kev.

User

Posted 13 Dec 2023 at 11:19

Hi Steve, Steve here LOL

I'm kinda in the same boat at the moment - post RARP PSA was 0 and yesterday (after 6 months) at 0.12 - still low(ish) but quite a rapid change. I have a meeting with the surgeon on Jan 5th but fired off an email asking if I would now get an oncologist referral, was a PET scan on the cards and that I would prefer to avoid HT is possible but quite comfortable with SRT.

I'll follow your posts to see if we walk the same path.

User

Posted 13 Dec 2023 at 12:17

Thank you Chris,

I'm very grateful for your post and advice. Good to know you wouldn't change your decision either and I will be keeping fingers crossed for six weeks time.

I shall definitely be following your advice Chris and also keep abreast of your progress.

All the best,

Steve

User

Posted 13 Dec 2023 at 12:52

Originally Posted by: Online Community Member

Hi, Steve here and my first post.

Steve,

I'm so sorry to hear about the rise.

I'm 10 months on since RARP, the pathology of my prostate was T3a, Gleason 9 (4+5).

Fortunately, my last 3 PSA checks have been undetectable, but I have been informed there's still a high chance of recurrence. Which I'm dreading. From what I've read on here, this disease often seems to lull you into a sense of false security. It seems, when you think you've killed the beast, its manages to raise it's ugly head again.

Best of luck.

Adrian

User

Posted 13 Dec 2023 at 13:38

Use this nomogram to get an idea of your chances of successful salvage radiotherapy:
https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

Re dipping in and out of private treatment I am lucky enough to have had choices.
I was diagnosed privately using an MRI that wasn't standard of care at the time (8 years ago).

I had the OP on the NHS as advised by my surgeon - he said the.only difference was the room.

I had follow ups privately because although the NHS paid for my choice of surgeon and hospital they wouldn't pay for long term follow up. But all the urinary issues and ED stuff were dealt with by my NHS GP.

After I started getting a detectable PSA (USPSA 0.05) I was sent to Oncology immediately as the surgeon said he could do no more for me.

I have seen the ONCO and had second options for the last 4 years. Currently at 0.11 PSA. The ONCO has swung between treating early at 0.07 to waiting until 0.2.

Because I am retiring soon I will lose my free private health care, in anticipation of this I spoke to my GP and he had no issues refering me to an NHS ONCO. I am in Mid Wales so I suspect will have the same logistical issues as North Wales.

I have my last private ONCO appointment and PSA in January, I have also booked another 2nd opinion at the Royal Marsden which is happening Friday - happy to ask any relevant questions and report back here!

User

Posted 13 Dec 2023 at 13:51

Stevie, I changed from NHS to private health care through my insurance company. One of the main reasons for the change is that there were more options with private treatment.

I was advised to make sure our insurance company did not have a cap on treatment costs.

Thanks Chris

User

Posted 13 Dec 2023 at 14:05

Hi Kev,

Yes, you're right. I was just caught on the hop at the time. Oncologist asap is my belief too and scope out is a succinct way of summing up my thinking.

Thanks very much,

Steve

User

Posted 13 Dec 2023 at 14:28

Hi Chris,

I do feel a bit guilty that I'm able to access potentially more options. So far, apart from an annual excess, I've had no limits applied, plus I know that PSMA PET has been okayed should I need it.

Thanks once again,

Steve

User

Posted 13 Dec 2023 at 17:03

Hi Adrian,

Glad to hear you're doing ok thus far and I shall keeping a look out for your progress.

With kind wishes,

Steve

User

Posted 13 Dec 2023 at 18:00

Thanks for the nomogram link. I'll look at it tonight.

Also for your story so far. Seems to have gone well, 8 years and counting.

I wish with hindsight I'd had more accurate PSA follow ups. As you pointed out, your first detectable PSA was at 0.05. I could have been above that from day one but not known it till now. Post surgery I opted not to travel for an hour if I could get tested locally. Of course accuracy was compromised but the surgeon seemed happy enough to just interpreted the less than 0.1 figure each time to mean undetectable. Of course it may well have been initially but we'll never know and I have to accept that's where I currently am and use the figures I've got.

Interesting how your treatment thinking varied from 0.07 to 0.2. I'll be interested to hear what your next consultation decides.

I may enquire further about referring back into NHS Wales to an Onco. I suppose the (possibly unfair) prostate cancer backwater reputation of Wales as a whole makes me unsure about whether I'll get the best treatment options available to me.

Finally, all the very best on your upcoming retirement. I hope you're looking forward to pleasing yourself a bit more. I can recommend it.

Kind regards,

Steve

User

Posted 13 Dec 2023 at 18:10

Hi Steve,

I was sure I replied to you but can't see it on the thread. Head not on right I fear!

Good to message a namesake but looks like both in same boat. I shall be keen to hear how you get on and as you say, will we walk the same path?

Good luck,

Steve

User

Posted 13 Dec 2023 at 19:20

Hi Stevie, Sorry to read this. I was wondering what I might add that hasn't been said. I think if it was me I'd want a psa test to 2 digits as soon as possible, even if it means checking around to find another hospital. Also I'd be pushing for a psma test before 0.25 even though they say it has a good chance of not seeing anything. With luck it might be a single lesion that is visible.

There is data on line about what size of lesion different scan types can see and there is data about how much psa a lesion of a certain size and Gleason will give out. Not that they know what Gleason a recurrance will be without a biopsy but you might guess a range from your operation report.

My NHS hospital said they'd refer me to oncology at 0.2 and a psma scan at 0.5. I've not reached that but to me it's pushing good fortune to let it get to 0.5 and I'd be willing to pay for an earlier one.

Over 0.2 you should be with oncology, my nurse said they might refer people before 0.2 depending how fast it was going but it's unusual to get treatment from oncology before 0.2. All the best, Peter

User

Posted 13 Dec 2023 at 21:07

Hi Peter,

Thanks for your considered post and good wishes.

I think you're right on the more accurate test. I allowed myself to believe I was out of the woods once I'd got past two years apparently undetectable. Hindsight tells me I should have returned religiously to the consultant's hospital 60 miles away for each review where I'd have had a more meaningful set of results on which to make a judgement. So partly my fault and also perhaps that of consultant for not insisting that I get more accurate readings via his lab. He was probably trying to save me the journey particularly during the lockdown periods. Anyway, what's done is done, so with a 0.2 followed by a 0.3, I'm getting a blood test at his hospital at the end of Christmas week, whilst requesting, on reflection, an oncologist referral asap. A PSMA PET has been pre-approved by my health insurance so why not get it done? I don't have to act on it but at least there should be something to see or not, so I will know and hopefully get good advice from the oncologist.

I've been trying to read up all the bios of guys who have been extremely kind and helpful to post and I shall look at yours more closely too, when I get two minutes!

Will post again but thanks again Peter.

Kind regards,

Steve

User

Posted 03 Jan 2024 at 18:40

Hi everyone,

Latest PSA now 0.21(at surgeon's lab) which compares favourably with 0.2 and 0.3 previously.

Symptoms of diarrhea and urinary incontinence but for most is short term. A small number of men get chronic issues.

He said 60% cure rate (not sure how that is defined) , the rest need HT at some point but mortality of 5% in this scenario.

Scan in about 4 weeks and PSA test around same time.

Feel happier to have a definite plan in place and an oncologist who is telling it straight.

Happy New Year to everyone(better late than never)

Steve

Notification

Join the online community now.