PSA doubling time after RALP I'm worried

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Hi everyone,

This is my first post but I have been reading posts and advice here for around 6 months and could do with some people's thoughts on my current situation. 

Firstly,  a summary of my journey so far.

APRIL 2023 seen my GP as was having a weak urine stream for years but didn't think it was a problem. I'm 51 now. PSA was 3.17 and DRE was abnormal - no lumps felt but quite firm.

MAY 2023 seen urologist and DRE done again and referred for MRI

JUNE 2023 MRI done. 2cm tumour on LHS and very slight break out at edge of capsule into neurovascular bundle. Lymph nodes and seminal vessicles clear. Also there was a tiny dot on RH femur which was indeterminate. Urologist and radiographer felt not bone cancer metastasis but referred for bone scan for completeness. Also referred for biopsy.

JULY 2023 had biopsy and nuclear bone scan.

AUGUST 2023 bone scan clear.

SEPTEMBER 2023 Biopsy results were grade 2 gleason 3 + 4. Cores had 5 out of 27 with cancer. Advised possible PT3A. Offered radiotherapy or RARP. Advised with age and size of tumour probably better to have surgery and I wanted surgery to get the root of the problem out.

NOV 1st 2023 Surgery with nerve spared on one side.

Jan 2nd 2024 results of pathology on prostate and 1st post surgery PSA test. PSA was 0.1 which was 9 weeks from surgery. Pathology showed positive margins as bladder neck and also at bases of seminal vesicles. Still grade 2 and gleason 3 + 4 but upgraded to PT3B due to microscopic cells found at margins. Referred to oncologist

Feb 2nd 2024 meeting with oncologist. PSA done at 13 weeks and up to 0.15. Oncologist said too early to be sure cancer was still there. He said that would not advise doing anything until PSA reaches 0.4 or rises 4 times consecutively. He also wanted to wait until May for an MRI on the bone again as he wanted to rule that out as a cancer spot so that right treatment can be offered if required. He said the bone scan would not have picked anything up on the bone as it was so small and they seemed to believe it was a bone island and unlikely to be cancer. His advice was to wait and watch the PSA and have the scan. I was referred back to urology again

March 15th 2024. After pleading nurse not to wait 3 months for another PSA test I had one is 6 weeks on March 15th which is week 19 from surgery. PSA up again from 0.15 to 0.22. Seems to be moving 0.01 per week? Nurse is sending a letter back to oncologist to see me again.


I am no expert but think I should push for MRI and PSMA pet scan in April and think I should get radiotherapy to kill off any residual cells left. Any advice or thoughts would be appreciated. Its 1 yr today from My GP meeting and I don't want another 6 months of waiting and worrying as it's taking a toll on me and my family. Thanks.

  • Hi Onestepforward and welcome to the forum though sorry you have to be here, Your PSA rise from 0.1 to 0.22 after your surgery is concerning, though i think it's usual for your oncologist to wait for your biochemical recurrence to rise 0.2 from it's lowest point before acting, I can understand your anxiety your PSA shouldn't be rising with no prostate, but your PSA is still very low, PS mine has risen from 0.08 to 0.48. No one here is an expert, but i think most of us would see a recurrence as the likely cause of the rise and RT the likely treatment, but that is for your team to decide. Maybe some of the guys on here have been through something similar and can share their experiences, best wishes.

    Eddie

  • Hello   A warm welcome to the online Community from me. It's pleasing to know you have been around for a while but sorry you have had to join us.

    Having read your history and being aware of the statistics on recurrence I too would be pushing for a further MRI and PSMA pet scan, followed by radiotherapy to mop up whatever is found.

    Your team appear to have everything in hand - it's just the time gap which causes the anxiety. All I can suggest is that you make sure they are aware of your anxiety and that you are willing to accept any cancellations at short notice.

    Best wishes - Brian.

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  • Hi  , although any rise in PSA is worrying, your Gleason indicated you have a little time to wait.  I think there is always a balance between acting now (which seems what we all want to do) and waiting for the PCa to show itself so that it can be eradicated.  Waiting feels like the wrong thing to do, but I think your team have it in hand.  That said, I would, like others have suggested, would want a PET scan.  Best wishes, David

  • Sorry to hear one-step.

    It probably is a recurrence as showing an upward trend so I would Def be pushing for Radiotherapy but also some more scans to try and find it ,  PSMA needed.

    PSA still very low so you do have some time but do keep pushing them

    Good luck

    Steve 

  • Hi Onestepforward. My PSA has risen to 0.2 since my prostatectomy in Sept 22 (18 months ago). I have another 3 monthly test today which I am anxious about and dreading that it may have risen again. I also am worried of course and am desperate for medical action to be taken and for my PSA to become undetectable. I offset that desperation however on my faith in my medical team and also papers and experiences I have read on the internet on when and how corrective action should be taken. There are what seems to be wide differences in opinions as to whether RT should follow at an increase of between 0.2 to 0.6 and also whether there is any advantage to also having HT. My team work on the basis that nothing will be done until  PSA rises to 0.4 and then at that stage an accurate PSMA PET scan / MRI will be carried out to determine how and where RT will be directed. My team's view is that accuracy of a scan below 0.4 cannot be relied upon and also that the disadvantages of HT would outweigh the advantages for my situation. I have read that others on this forum have had a scan at 0.2. Obviously I have absolutely no idea whether my teams views are correct but I know that my faith in them does help in enabling me to accept my situation. So, I think my main point is that you may find your team will not carry out further investigations in April and that you may have to wait until 0.4 and indeed that may (or may not) be the best approach.

  • Hi Static

    Have been reading through your profile, PSA has  certainly kept low for a long time since end of  2022.    .1 if have read that right

    I know it has now gone up to .2 but too early to speculate, could be a blip, I presume that u have only had 1 PSA above .1.

    HT wouldn't be a good idea as could mask any spread.

    The next PSA is crucial, hopefully not gone up again but the problem when so low is will anything show on the scan that's if there is anything there

    So I know difficult but just hold fire and  hopefully the next PSA will be more settling

    Best wishes

    Steve 

  • Thanks Eddie, I suppose I'm less worried about the PSA at 0.22 rather more the time frame in which it got there. When I had my appointment 9 weeks after surgery and my PSA was 0.1, the surgeon said it could be 18 months to 2 years before it reached 0.2. I'm just trusting the experts to keep me right

  • Hi Brian,  thanks for the advice. Yes I will make the team aware of the anxiety caused by waiting and not knowing when things will happen next and what to expect. Cheers

  • Thanks David. Yes I'm putting my trust in the experts here totally

  • Thanks Grundo,

    My oncologist did say at my meeting when mh PSA was 0.15 that I might benefit from RT but was advising still to early to decide and he went through a list of potentially life long side effects of the treatment when not sure at my level if it is required. I'm hoping to have another meeting with him soon to disulcuss further.