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 Static,

    It looks like we are both paddling the same canoe albeit your PSA was a lot slower to rise. Be good to keep connected to see if our treatment advice is similar. Looks like your medical advice is exactly the same as mine. Good luck with your journey too mate.

  • Hi Onestepforward, If your PSA rises again and is 0.2 ng/ml above the base reading of 0.1 you should talk to your doctor about the rise and the fact it has risen three times as it seems to me a little more than a . Though let's hope for better news at your next test. best wishes.

    Eddie

  • Had a 3 monthly test on Thursday and PSA remains at 0.2. So I am pretty certain no action will be taken this time around, which I am quite happy with. I'll take on board the probably side effects of treatment when and if it happens. Meanwhile I will be doing my best to lead a normal (pre-cancer) life.

  • Hi static,

    That's great news that is hasn't risen any further and has stabilised!!! Good luck and go and do something nice to celebrate Champagne 

  • Hi Guys,

    Just a short update. Taking some advice from the community I have been in contact with hospital to try and find out how to progress and highlighting the heightined state of anxiety.

    Having found out my appointment with oncologist is booked for 30th May, I managed to get a call with him yesterday. He has said that, although PSA values can jump around a bit, due to the consistent rise post surgery from 0.1 to 0.15 to 0.22 and doubling time of 10 weeks it suggests that the operation in Nov 2023 has not removed all the cancer.

    2 options

    1) wait until the psa gets to a point where there are symptoms or to around 10 and then do HT

    2) do radiotherapy to the hormone bed now

    He believes doing a psma pet scan at my psa level will likely not show anything and he would not consider doing it until psa reaches 0.5 or 1.

    He also doesn't believe HT would be of benefit to me now at a low psa level of 0.22 as summarised in point 1 above recommendation 

    He believes if I do radiotherapy now, I have about a 50/50 chance of it curing me now....the risk being if it has spread outside the prostate bed area.

    Its such a headache (the chicken or the egg syndrome!!)but I don't want to wait to June or July, have more scans, then possible be waiting while cancer cells continue to grow and prosper without treatment.

    I've informed him I'd like to proceed with radiotherapy and he is now organising same. As soon as I made the decision I felt relief but now my head is spinning have I 'shot my bolt' too early lol.

    He did say that obviously there are other treatment options should radio not be effective but I think apart from the side effects of RT which im fully aware of, at 51 yrs old it's worth it.

    Any thoughts or comments would be appreciated.

    Cheers

  • Hi  .

    As you are still mulling over your options I wondered if the attached review might help fill in some of the blanks about timing and efficacy of adjuvant and salvage radiotherapy.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10310328/

    It is a difficult decision but trust your medical team.

  • Hi OSF

    One of the most difficult decisions to make after PSA starts rising again especially after surgery where it should be nearly zero

    This is just my opinion but I think I would wait at bit, your PSA still very low and Gleeson also low so at least not a particularly aggressive cancer.

    You Def don't want HT at present cos that would just mask any spread.

    See how it goes and then hopefully a scan will point exactly where there is any spread.

    I understand you want to get on with it but 50/50 is not a great offer.

    Only my opinion, I say again, see what others say

    Best wishes 

    Steve 

  • Hi Onestepforward,

    I know the feeling when you see your PSA climb after initial treatment.

    My PSA has been doubling on average every 2.7 months, at 0.23 I had a PSMA PET scan after reaching a low of 0.009 a few months ago. The scan did not pick up anything, yet my PSA continues to climb. The next PSMA PET scan will be in 3 to 4 months once my PSA has gone over 0.4 based on current trends. My oncologist has reassured me that even at 0.5, they may still not find anything. 

    You may find this tool useful to calculate Doubling time https://www.mdcalc.com/calc/10198/psa-doubling-time-psadt-calculator and perhaps you can use that information in your discussions with your oncologist.

    All of the best in your journey, 

    Kind Regards

    Munster

  • Hi Munster,

    My oncologist told me he wouldn't recommend a PSA PET scan lower than 0.4 as unlikely to show anything. I don't feel comfortable waiting while PSA rises just to be able to seenitnin a scan so have opted for salvage radiotherapy. I have my appointment for planning 2moro. 

    Only time will tell if I have made the right choice but I feel better in myself for taking action to get something done 

    In your case, were u offered treatment or waiting for a while and monitoring?

    Either way I wish you the best of luck and prayers m8,

    Cheers

  • Thanks always hope,

    A very informative article and well worth the read. I'm happy now to proceed with the salvage radiotherapy.....fingers crossed it does the job!