Recurrence 6 years after Robotic Surgery

User

Posted 10 Jan 2024 at 01:44

Ah, sorry franci ... on the upside, you are aware that John's goes up to 0.11 and then back down to <0.1 depending on the time of year. If the RM are saying 'wait for 0.2' I guess that must be sound advice?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Jan 2024 at 08:42

Being referred back to a new consultant in the NHS gets me a 3rd opinion to ponder I guess 😵‍💫 Hopefully it will be consistent with the others!.

My concern as always is I am missing an opportunity for a durable remission, the Lady from the RM was very clear that the research showed zero benefit to going early (8 years??) to SRT so long as My PSA was not > than 0.2 or doubling quickly.

Hopefully when I have updated my username to "oldfrancij1" in 20 years time I will be able to report definitive proof to this wonderful forum.

User

Posted 14 Feb 2024 at 08:44

My PSAs seemed to climb faster with less concern. Is there a reason for that????
I am 81 in Newcastle Australia. I had OpenRP November 2015. No ADT or RT. PSAa OK till
Jan 2021 0.02,
Apr 2021 0.03
Dec 2021 0.03,
June 2022 0.06,
Jan 2023 0.13,
Apr 2023 0.16,
Aug 2023 0.32.
PSMA detected PCa in node near tail bone.
Urologist 1 recemmends ADT + SRT of node,
Oncologist 1 wants ADT + SRT "the whole field". He feels there may be single PCa cells elsewhere waiting to be detectable.
Urologist 2 (UK) thinks at 81 surveillance till PSA = 10.
Oncologist 2 wants ADT + SRT but excluding former prostate area, bowel and bladder areas.
I have been incontinent for past 8 years which my lead to the final recommendation.

PSA went to 0.8 on 29 Jan 2024.

2015 Surgery pathology:
Core biopsy Gleason score: 3 + 4 = 7
Prostate Measurement: 51x43x41mm
Prostate Weight: 63.5 grams (with both seminal vesicles and vasa deferentia attached)
Tumor Type: Acinar
Tumor Extent: Unifocal
Tumor Location: Quadrants: Left posterior
Zones: Peripheral
Tumor Volume: 0.09cm3 (3D volume estimate method
Gleason Score: Primary grade 3
Secondary grade 4
Composit Gleason Score (ISUP2005) : 3+4 =7
Index carcinoma score (ISUP2005) : 3+4 =7
% High Grade (4/5) 45%
DIAGNOSIS: PROSTATE - ADENOCARCINOMA

Does anyone have any thoughts.

If francij1 is still on the line what's your situation after 27/3/23 PSA 0.086. We had some similarity. My Dad died in hospital having RT for bladder cancer of just 2 months. My PSAs began to rise 6 years after my 2015 Open RP. My GP referred me to Uro1 at 0.03. He said come back at 0.20. At 0.16 > 0.32 he sent me for PSMA and now 4 options.

User

Posted 14 Feb 2024 at 11:21

I think it's because I haven't got to 0.2 yet, I am also a lot younger than yourself (nearly 20 years).

So the oncologists need to balance risks of over treatment V under treatment. The current risk "cut off" is 0.2. So prior to 0.2 and slow doubling time (presently >2years) I have been told it's safer to leave it alone.

In your case you are >0.2 and approx 6 months DT with a detectable recurrence on a scan. I think I would be thinking about just blasting the node without any HT. This would be low risk and might deliver a cure while leaving all the other options available later.

User

Posted 14 Feb 2024 at 12:46

PCa2015 - I have responded on your own thread

Edited by member 14 Feb 2024 at 12:50 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Feb 2024 at 13:02

Pca2015, I had surgery in 2014 followed three years later by SRT to the prostate bed. Following a rise after SRT my oncologist was going to wait until my PSA was 2,4 or even 10. With more widespread use of PSMA scans the plan changed and at 1.4 ,I had a scan and SABR treatment to a pelvic lymph node, following another rise to 6.2, I had another PSMA scan and more SABR treatment to a second pelvic lymph node and six months of bicalutamide.

The PSA after the last treatment went from 0.32 to 0.44, the plan now is another scan if the PSA hits 1 or the doubling time goes below three months.

Thanks Chris

User

Posted 04 May 2024 at 00:37

Back in the good old NHS for my ongoing care as I have retired from the job with private health care and it's time for my 3 month check up.

So I was a little worried when despite being referred back to the NHS last year I didn't receive a letter acknowledging this for 2 months and that said it would be 26 weeks before I could have an appointment and I may wish to go elsewhere?? Not sure where else you can go in the UK if you don't have private cover??

Anyway I should not have worried after a phone call to chase it up an appointment with a Professor G duly arrived.

The appointment day arrived and I was pleased to get seen by the Prof himself and I had an unrushed consultation when he quizzed me on my treatment to date. He was particularly interested in the second opinions I had had from the Royal Marsden and we discussed the results of the Radicals trial and the logic for having 0.2 as the cut off for salvage therapy. He also confirmed if I hit 0.2 they would do further tests including PSMA PET to re stage me.

So the big question what was my PSA? Well I just got called by the prostate specialist nurse and she said 0.12 (only 2 decimal places in this trust with 0.03 as the undetectable threshold).

Allowing for roundings it's the same as last time (0.117) I will take that for now and hopefully the next one in 3 months will be the same!

So far life in the NHS lane seems pretty good, in fact the only difference so far is no free coffee but there was free parking for cancer patients...

User

Posted 04 May 2024 at 08:22

Originally Posted by: Online Community Member

Allowing for roundings it's the same as last time (0.117) I will take that for now and hopefully the next one in 3 months will be the same!

Hello mate.

I'm very pleased that your transition to the NHS and retirement went smoothly and that your results seem stable.

Are you enjoying being employment free, it took me years to adjust?

User

Posted 04 May 2024 at 09:51

Well I retired from the paid job and have taken my pension so I am lucky that I don't need to worry about money too much!

I am now a full time farmer so that keeps me busy and is very rewarding mentally and physically if not financially 😂😂

To be honest I thought I would miss some aspects of my old job but it turns out I don't so that is great!

Edited by member 04 May 2024 at 09:53 | Reason: Not specified

User

Posted 04 May 2024 at 14:16

Francis, good that your head seems to be in a good place. The rise is still slow so fingers crossed for you.

Thanks Chris

User

Posted 19 Aug 2024 at 20:21

3 months on another PSA test and phone call with the oncology nurse, result: 0.12 same as last time..

Booked in again for 3 months time.

User

Posted 19 Aug 2024 at 20:24

Good result. Have a drink on me.

I know the feeling mine came back at 0.11 today, same as 4 months ago. I'm having a drink on that.

User

Posted 19 Aug 2024 at 20:37

Great results gents. I shall have a glass of Shiraz to celebrate your good news. 🍷

User

Posted 19 Aug 2024 at 21:28

Francis, my urologist said he had numerous patients with a PSA around the 0.1 level after surgery. A slightly different situation,but there is a members husband who hovers around 0.11 following surgery and SRT.

Good to be on 3 monthly tests.

Thanks Chris

User

Posted 19 Aug 2024 at 22:13

I'll drink to that too.

Not undetectable but low and stable.. You must have nerves of steel.

Cheers.

Kev.

User

Posted 19 Dec 2024 at 14:30

3 months on and it's 0.13. Appointment with nurse moved at short notice from today until the end of Jan good old NHS! Good job they said no further action until 0.2.

I don't think any opinions have changed significantly in the last 3 months?

Does the forum still think hold fire on salvage RT is the way to go?

User

Posted 19 Dec 2024 at 17:34

It's a decent result doubling in over 3yrs.

My Oncologist said choose between early unscanned RT and waiting until it gets around 0.2, probably more, to have a scan. Or carry on until it reaches 10 and have hormones at 90+. You're younger than me though.

The concern being will it keep the same doubling time.

So good luck.

User

Posted 19 Dec 2024 at 20:46

Re doubling time I have been graphing it since 2016 and the gradient has not changed. I will certainly keep to 3 monthly checks ..

User

Posted 20 Dec 2024 at 04:37

Originally Posted by: Online Community Member

Does the forum still think hold fire on salvage RT is the way to go?

At some time, I fully expect to be in a similar situation to you francij. I would hold fire on salvage RT until at least 0.2.

It seems so sad that we have to spend so much time thinking about such bloody miniscule numbers. It's like our lives revolve about a decimal point.

Good luck mate.👍

User

Posted 09 May 2025 at 15:32

Latest PSA 0.15. New NHS consultant called with the results, no change in approach, no further scans or treatment until 0.2. Interestingly he was talking about MRI and bone scan at 0.2 rather than PSMA, but still hoping it will stop at some point before 0.2...

He did say it was a good thing that I am 10 years down the line and it's only 0.15, personally I would prefer it to be >0.1 but I do count my blessings.... He also said I was probably more likely to die of a car accident or a stroke, here he showed his negligence as he didn't know I like jumping horses ( No comments please!).

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