Recurrence 6 years after Robotic Surgery

User

Posted 09 May 2025 at 17:01

Decent result. MRI and bone scan at 0.2 is interesting. No mention of psma? I'm getting a sense of no news is good news having gone to 6 monthly blood tests without being told it was changing from 4 months.

User

Posted 09 May 2025 at 19:17

Hi Francji1,

Jumping horses and straddling sheep. You're certainly an animal lover. 🙂

Joking apart, mate, although the PSA rise is only tiny you must be slightly disappointed. I hope this is just a small blip. As you said to be only 0.15 after all those years, is a great result. If I'm ever in a similar position, I'd still hold out until I was at least 0.2.

Good luck 👍

User

Posted 09 May 2025 at 20:47

Franci , a slow rise has got to be better than a fast one. I think you already know you can't take things for granted. A guy I knew thought he was in the clear more than 12 years after surgery and he wasn't being monitored. The next test he had lead to scans and found it had spread.

During my vaccine trial I had numerous bone and CT scans that found nothing, a few months later a PSMA scan found a hot spot, that was at 1.4 and you are a long way off from that.

Thanks Chris

User

Posted 01 Sep 2025 at 11:23

Latest result 0.16 so ticked up again. Now 10 years post op.

Next appointment 3 months is with the consultant rather than the nurse.

Interesting I have graphed my PSA for the last 10 years and it shows a continuous gradient, rather than an exponential growth anyone know if that is significant?

User

Posted 01 Sep 2025 at 13:25

Perhaps it's behaving like a 3+3 which some specialists say is hardly cancer at all. Although it sounds a too easy thing for someone to say in my opinion.

My psa rise is similar and mine was 4+4 although I like to think the strays are 3+3 as I was 4+3 initially.

User

Posted 02 Sep 2025 at 23:30

Originally Posted by: Online Community Member

Interesting I have graphed my PSA for the last 10 years and it shows a continuous gradient, rather than an exponential growth anyone know if that is significant?

I'm sorry that you got another miniscule rise, mate.

As a matter of interest, if you continued the gradient what whould your PSA be in ten years?

Are you going to defer any possible further treatment unless you reach 0.2?

I think, if I were in your position, and the rise continued at the same small and slow rate, I would wait until 0.4 or even higher before considering further treatment.

I started a conversation on a Dr Scholz presentation, where although he stated he was a little more risky, he advocated 0.4 and even higher as a better point to start further scans etc. If I can find the conversation I put a link in.

Got it:

https://community.prostatecanceruk.org/posts/t31858-When-to-start-salvage-treatment-after-BCR

Edited by member 02 Sep 2025 at 23:39 | Reason: Add link

User

Posted 09 Dec 2025 at 23:11

Well wasn't expecting that, for the first time in years my PSA has gone down and is now 0.15.

I know it is all "noise threshold" but it certainly put a smile on my face. Wife wasn't so happy she started crying!

It was an in person meeting with the consultant and because I am a Welsh patient in an English hospital I had no idea what the result was until the consultant told us. Been doing this so long now it was just like the old days, pre "apps".

Consultant also changed her approach from 6 months ago and said any further restaging would be after 2 consecutive readings above 0.2 and it would be PSMA PET not CT / MRI. Relevance of this is the now universal acceptance of PSMA at 0.2 which has changed in 6 months (at least at Shrewsbury).

Wouldn't consider testing at more than 3 months interval though which brought me back to earth.

User

Posted 10 Dec 2025 at 08:09

Hi, mate.

A truly fantastic result! Long may it continue. It must feel like the best Xmas present you could have ever had.

I've been following your story for the past couple of years. You're probably aware that I dread BCR and I'd have really struggled with the uncertainty that you've had to endure.

Im still on the wagon, but will have a couple of zero Guinness to celebrate your good news.

Happy Xmas, pal. 🎅

User

Posted 10 Dec 2025 at 08:39

Hi Pal

Really good to hear and I love hearing about tears of joy😊

Wishing you all the best for the coming season 🙏

Regards Phil

User

Posted 10 Dec 2025 at 10:11

Francij1, a small movement,and we know from posts on here a movement of 0.01 doesn't really mean alot. Good that you are being closely watched.

Thanks Chris

User

Posted 10 Dec 2025 at 10:14

That's good . It kicks the can further up the road.

Mine went from 0.15 to 0.14 last time. Peter

User

Posted 10 Dec 2025 at 19:30

Good news frankij1. With the upward trend as it is anything slowing has to be good.

Just out of interest any life style changes?

Cheers Bill

User

Posted 10 Dec 2025 at 20:05

Originally Posted by: Online Community Member

Good news frankij1. With the upward trend as it is anything slowing has to be good.

Just out of interest any life style changes?

Cheers Bill

We try to eat keto which has definitely helped with my borderline type 2 diabetes. We also do short periods of carnivore but it is remarkably difficult to stick to...

User

Posted 10 Dec 2025 at 21:22

0.2 was my threshold to trigger a PSMA PET scan. Unfortunately nothing showed up even though they know its lurking there somewhere!! The consultant was surprised it didn't show at 0.2 as she said the scans are so good now, so they must be improving all the time. Interestingly when I went for the scan the radiographer told me there two different types of substance they inject and one is better than the other. Apparently, had the better one. Hopefully you will have better luck when you have your scan, fingers crossed for you.

User

Posted 10 Dec 2025 at 22:02

I am still hoping it's peaked 🙂

User

Posted 21 Feb 2026 at 17:45

3 months on PSA still 0.15 so same as last time, no further action yet.

I have however developed an inguinal hernia I suspect as a consequence of my surgery 10 years ago. It caused me a bit of a fright when it popped out of my groin one weekend!

User

Posted 21 Feb 2026 at 18:25

Francij, good news on the PSA, not so good on the hernia. Keep going mate.

Thanks Chris

User

Posted 21 Feb 2026 at 19:43

Good result. We're tracking. Last week mine, was up 0.01 to 0.15 from 4m ago.

Inguinal hernia, a coincidence but lower than the op cut. I got one 3 weeks ago and am now on 20wk waiting list although private treatment has a long list of general surgeons waiting for a call around £4k I think for an open op.

I also have a small one on my belly button where the prostate op cut was but they said leave it.

Edited by member 21 Feb 2026 at 19:43 | Reason: Not specified

User

Posted 21 Feb 2026 at 20:00

NHS Wales said they wouldn't treat it unless it strangulated, then it would be done right away! Currently waiting to see what the private consultant says after it was scanned the other day. I suspect they will say "that will be 4k!" So then I have a decision, wait until it's a medical emergency or cough up 4k! After my previous surgical intervention into the abdominal cavity nearly killed me I am currently minded to wait.....

User

Posted 22 Feb 2026 at 18:31

Relating ti Inguinal Hernia, I developed one about 3yrs or so ago and I had repair done about 2yrs or so ago, via NHS, after a wait obviously. I found at times the hernia caused a lot of pain, causing fever type feeling. At times could push it back and it settled but sometimes justvwouldnt go back so had to lie down and wait for it to settle. I did find the hernia belts were helpful. I know that they dont always cause pain.
Peter

User

Posted 22 Feb 2026 at 19:41

I've been studying hernia belts. The inguinal ones seem to be on Amazon. I like to buy things from Boots but they only do lower groin ones.

The one on my stomach had a bad spell but now it's OK and small.. The new one looks quite big about 3-4cm and I don't want it to get bigger.

User

Posted 20 Jul 2026 at 17:47

Latest PSA 0.17 so it's gone up which is annoying as I had got used to 12 months of stability. The Nurse who gave me the result said they considered it still stable as it's varied between 0.15 and 0.16 for 18 months.

So next test 6 months (my request they said 3) no action until 0.2 then it would be CT, followed by PSMA PET, so no change in protocol.

Other news, hernia repair done and dusted, sex life still great.

Now 11 years since diagnosis so really can't complain.

User

Posted 20 Jul 2026 at 18:21

Still pretty slow though. I got a 2 month test after an out of trend rise, although it was hard work, they must be under instructions not to.

User

Posted 20 Jul 2026 at 18:36

Hey Francij1

Were you prompted to have your hernia repaired in case you need SRT or had it got to the stage where it needed a repair?

I have a hernia, I don't know where it is and surgery not recommended until I actually need it. It only bothers me if I lift something heavy and awkward... but still do the same weights training in the gym as normal.

User

Posted 20 Jul 2026 at 22:53

At my last oncology appointment they recommended I get it done in case I needed RT later but the NHS still wouldn't do it. So I had it done privately They asked me at today's appointment if I had had it done and how it was.

My hernia was painful and interfered with my life so needed doing it just didn't meet the NHS criteria.

User

Posted 21 Jul 2026 at 10:03

Originally Posted by: Online Community Member

Hello, mate. Thanks for the update, the rise although tiny, must be a disappointment. It seems that generally your treatment has been a success. It's just a shame that over the years, these irritating minute PSA rises have kept you on your toes. Hopefully it will stablise or drop again.

Important factors in assessing the risk of BCR or it's impact, seem to be, your Gleason score, the time it took for BCR to occur, and PSA doubling time.

I've just found this video which I think explains things clearly.

https://youtu.be/XwIDxYRp9yE?si=agLYyo6G3UsB4R7M

In your case, mate, all these factors seem very favourable.

Best of luck with your next test.👍

Edited by member 21 Jul 2026 at 11:20 | Reason: Add link

User

Posted 21 Jul 2026 at 10:24

When you say you've a hernia you meet loads who say the same. I've been waiting 6 months for an assessment for an op and was warned they might turn me down.

Last week I went to see a private surgeon and have just been told the op is a week on Friday.

Open surgery, as he said my laparoscopic Prostatectomy precluded further laporascopic work as it fixes the skin to the muscle or something like that. I wasn't bothered as I preferred open.

I need a general anaesthetic as well which I hoped to avoid.

The psa nurse said they might ask for it to be done before RT.

User

Posted 21 Jul 2026 at 12:49

PT3a with grade group 1 is unusual and there don't seem to be many studies of it.

This recent publication may, however, be of interest.

https://www.nature.com/articles/s41391-026-01138-z

They only identified 40 cases over a 20 year period (presumably because of its rarity) but the long term results seem to be very favourable. The conclusion in the abstract was as follows:

"GG1 pT3a prostate cancer demonstrates excellent long-term outcomes. Adverse histologic features, not pathological stage alone, drive clinically meaningful risk. Late, stable PSA detectability alone does not signify meaningful recurrence."

Best wishes

Kevin

User

Posted 21 Jul 2026 at 13:38

I like that article thank you KS25! Makes me think I should never have salvage RT whatever my PSA does!

Re the hernia Peter I went to the Oxford Hernia clinic where they specialise in Open, local anaesthetic surgery, mine was brilliant I have to say.

User

Posted 21 Jul 2026 at 20:18

Ok thank you for the hernia 'updates'. Fortunately while working I have private healthcare so could get this fixed sooner than later even though I don't know it's there. Plus waiting to see if my PSA ticks up again from 0.09. I am totally unable to get any answers from the oncology team until I am referred again if I need SRT. Not that my DR has been very interested in my hernia or my now detectable PSA. Lack of any advice is frustrating.

User

Posted 21 Jul 2026 at 21:57

I am still under oncology, they told me it was best to get a hernia repaired before SRT because it affects the way you heal in the whole pelvis area.

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