Recurrence 6 years after Robotic Surgery

User

Posted 18 Aug 2022 at 13:50

"I also asked him what benefit private RT offered over the NHS and he said no "technical benefit" IE it's the same machines but the NHS only checks bowel / bladder alignment once a week, privately it gets checked every day?? Can anyone confirm this is correct?"

Presumably this is true at the hospital your onco works at.

John had his RT done privately but the private health care provider is a company within the NHS hospital and wholly owned by the Trust. All profits are ploughed back into their NHS oncology service and research team which appealed to my social conscience! The only difference it made was that John saw the onco every week for a catch up.

Edited by member 18 Aug 2022 at 13:55 | Reason: Not specified

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

User

Posted 18 Aug 2022 at 16:42

I had my 20 SRT fractions on the NHS. I was scanned every day after being lined up with my tattoos.

Regards,

Kev.

User

Posted 28 Nov 2022 at 23:52

Latest PSA = 0.096 so dropped 0.004 in 4 months. I'll take that. Next test in 4 months... Interestingly it didn't go up this time last year and seems to go up in spring and summer only? Anyway gets me another 4 months reprieve from RT so a great early Xmas present.

User

Posted 29 Nov 2022 at 00:18

Excellent.

John's highest reading is usually August / Sept each year, just after we get back from France .... it's either all the cycling or the red wine & cheese :-/

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

User

Posted 29 Nov 2022 at 05:30

Nice one bud !! That numbers so small I’ve forgotten how to say it 😀

User

Posted 29 Nov 2022 at 06:05

Great result Francij keep dodging the RT.

Cheers

Bill

User

Posted 29 Nov 2022 at 07:36

Franci ,great news.

Thanks Chris

User

Posted 29 Nov 2022 at 07:44

Nice one long may it continue 👍 gaz

User

Posted 29 Nov 2022 at 23:56

Great news, long may this continue for you x

User

Posted 30 Nov 2022 at 03:20

Somehow treatment often seems to correspond with Christmas, which takes the edge off it a bit. Good work on avoiding that one and the 4 month reprieve.

Jules

User

Posted 30 Nov 2022 at 18:57

That's good psa news.

How come they gave you a PSMA scan at 0.08 and you're expecting Salvage RT with a rise above 0.1. They were very against the suggestion of a psma scan or referring me to an onco when mine went to 0.09 6 months ago. It's now 0.08 anyway but I'm thinking that the onco will only be at 0.12 at least.

All the best, Peter

User

Posted 30 Nov 2022 at 19:50

Originally Posted by: Online Community Member

That's good psa news.

All the best, Peter

Because the onco originally wanted me to "prepare" for salvage therapy at 0.076. I said not without a PSMA scan which he agreed to. The scan found nothing but in the time taken to have it research was published that said no harm waiting until 0.2.

As to how I have private medical cover so it's basically by negotiation. I remember Ulsterman getting a PSMA scan at 0.02 and it changed his treatment.

User

Posted 01 Dec 2022 at 16:29

Yes Ulsterman is a good example. A psma scan finding something at 0.02 is miraculous good fortune.

If necessary I'll pay for a scan around 0.2 I think, I'm at 0.08 and still with Urology. You could be some time from SRT, as I might be, if you're waiting to 0.2.

User

Posted 27 Mar 2023 at 22:52

4 months on latest PSA 0.086 well I am now truly shocked and relieved the previous small drop has now become a full 0.01 reduction. After 7 years of continuous PSA growth and increasing numbers of PSA checks my PSA has dropped 15% in 12 months.

The Onco has suggested I move 6 monthly checks. I will take that.

So 2 years ago it was only my choice to postpone salvage therapy until after my hip replacement and then getting a second opinion that prevented me getting RT.

So question is why is it going down? The only change I have made to lifestyle in 18 months is moving to carb avoidance 5 days per week and committing to a 16/8 fasting (no breakfast) regime. This has resulted in losing 10kg but my weight has been stable over the last PSA test period.

I eat meat and fermented dairy with all meals + leafy veg and lots of fruit and nuts. I also drink to much!

User

Posted 27 Mar 2023 at 23:09

Franci, great news, really pleased for you. Why does it drop , who knows. Long may it last.

Thanks Chris

User

Posted 27 Mar 2023 at 23:45

More good news.

Thanks for sharing your diet, it's interesting. Fasting is getting a lot of positive comment lately. 16/8 is a tough one. 14/10 is fairly easy. But which, if any, of the measures help? It sounds like you're on a winner, too good to change.

User

Posted 28 Mar 2023 at 12:33

Great news Francji and long may it continue for you 🤞can’t shed any light on the decreases!

User

Posted 28 Mar 2023 at 15:50

Great news. I can’t explain the drop in PSA either!

Ido4

User

Posted 28 Mar 2023 at 17:25

Great news frankij. We mostly think no rise is as good as you can hope for post RP but you've proved otherwise. I wish I knew why.

I am also on a fasting diet its the don't eat while sleeping one.

Cheers

Bill

User

Posted 20 Oct 2023 at 17:10

5.5 months after the previous PSA and my latest reading is 0.11 so the downward trend has definitely stopped after 1 reading 😵‍💫.

Back on 3 monthly testing. Onco says no treatment considered until 0.2 so the Savage RT debate appears to have gone full circle. He also said any RT would need 2 years of bicalutimide OR 6 months of the Zoladex equivalent. He said recent research supported waiting until 0.2 AND the 2 or 6 month options for HT along with prostate bed AND pelvic lymph node radiation.

I asked about PSMA scan and he said no point until 0.5 and that would risk missing the treatment window.

Anyway 3 months to think about what I want to do.

Life is really good at the moment so seriously thinking about waiting until it's findable on a scan.

User

Posted 20 Oct 2023 at 18:20

Oh Heck, you're my flag bearer in the 0.09 group. Although there's Lyn's husband as well.

What they said to you is what they said to me except no Oncologist as yet.. I intend to try for a paid psma just before 0.2 as I guess it might be higher by the time its done. 0 5 is too high in my opinion.

I keep thinking my time round 0.09 might be coming to an end but it went up to 0.1 so might go down again, as might yours.

User

Posted 20 Oct 2023 at 18:22

Sorry to hear this. It is a poser for sure. You know my view on it all. A good friend Raiden who used to post on here had his RP same month and year as me. His psa went up 4 times but minutely. Like me he was all QOL and wanted to hold off as long as he could. Eight years later he has hovered around 0.2 with no climbs. And no RT or HT which can bring a raft of issues as you know. But it’s a tough choice and you have to stick with it. My psa got up to 990 or over and I’m still living the dream after delaying invasive treatments. Good luck with what you decide. It’s tough

User

Posted 20 Oct 2023 at 18:57

Chris j you are are my ultimate standard bearer for the don't fxxk your life up just because a DR says so! You have given me the courage to both question and decide my own treatment path.

User

Posted 20 Oct 2023 at 19:55

I've just checked your profile and PSA readings. It has taken a long time to get to 0.11 . As I often say to people on this site, don't be in a hurry to do anything, if your lucky you'll get run over by a bus before the prostate cancer gets you.

Dave

User

Posted 20 Oct 2023 at 23:06

Originally Posted by: Online Community Member

I asked about PSMA scan and he said no point until 0.5 and that would risk missing the treatment window.

.

As you know I had salvage RT three years after surgery based on" an educated guess", it would be interesting to see what percentage of guys remained cancer free after the "educated guess SRT " to the prostate bed. You could perhaps argue that my window of successful treatment passed because I was refused a PSMA scan.

There was some research posted on here that suggested SRT treatment before 0.25 was the way to go.

Thank Chris

Edited by member 20 Oct 2023 at 23:07 | Reason: Spelling

User

Posted 22 Oct 2023 at 00:44

Pah! John was 0.11 again in the Summer and it usually drops so I am expecting it to do so again when next tested in November. Up & down, up & down ... <0.1 to 0.11 and back. We have never stopped doing 3 monthly testing though even though it is nearly 14 years since!

Wait to see what next test comes back as before exerting yourself too much with the 'what next'. If it does rise, I am not sure I would want to wait for 0.5 - private scan and salvage plan asap in my book! Also, if you did get to that stage and did need RT, I am a bit bemused by his 2 years bical statement (surely that can only be his personal preference?) but it seems to me that 6 months injections is far, far, far more enticing than 2 years of evil bical.

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

User

Posted 22 Oct 2023 at 09:34

Thanks Lyn, great to have you back hope it was a great holiday and the family shenanigans didn't spoil it..

User

Posted 22 Oct 2023 at 13:53

I think if Robs had been increasing at a slower pace we would have been tempted to wait to see what was going on. With him being G9 and PSA doubling every 3 months we thought it best to opt for SRT at this point even though PSMA pet scan was clear.

The one thing with PCa is I’m not sure we ever know if we’re making the ‘right’ decisions just have to go with what you thing is best for you at each point and no regrets 🙏🏼

Fingers crossed for a good result for you in 3 months 🤞🏼

User

Posted 09 Jan 2024 at 18:47

So latest PSA 0.117 up from 0.110 3 months ago. My last appt with the private oncologist and the last ultra sensitive PSA from Wolverhampton New Cross. Been referred back to the NHS at Shrewsbury for follow up.

Everyone is still saying do nothing until 0.2 Inc the second second opinion I had from the Royal Marsden (Thought I might as well cane the private medical while I could).

Last day of paid employment 31 January. Not sure when my next PSA will be yet.

User

Posted 09 Jan 2024 at 19:50

Franci, if I am right your are now eight years since RARP. I was told after surgery my PSA could settle at 0.1 and they had many patients at that level.

In my case the rise in my PSA as always dropped after treatment but the overall trend has been up.

Hope you can find a solution you are comfortable with.

Thanks Chris

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.👍

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