Active Surveillance-How Long?

- those of advancing age who are likely to die of something else first

- unusually young men who need to buy some time to complete their family, freeze sperm or just live a ‘normal’ life for a little longer

- men with other health conditions that need to be resolved or stabilised first.

In all cases, the Gleason needs to be of the lowest grades, the PSA needs to be stable, the tumour needs to be well within the gland and not encroaching towards the edge or centre, and the AS must be delivered in line with NICE guidance ... regular PSA, at least annual DRE and annual MRI. My father-in-law chose AS at the age of 79 but unfortunately it wasn’t done properly, he was repeatedly refused a new scan even when his PSA acted weirdly and ultimately, he died very suddenly of undiagnosed mets to soft organs.

Hi Paul 

I have had pretty much all the same symptoms as you in terms of golf ball and cramping occasionally when bowel full. Originally detected something was wrong based on blood in semen. GP initially ruled out anything to be concerned about. My GP watched things for the next few months and in March 2016 has a PSA which came back as 4.29. Had two further PSA’s which came in at 3.9 and 4.12. After the third he said he is obliged to refer me to a urology consultant which we did. Engaged Sept 2016 and went through cystoscopy, ultrasounds, DRE, urine tests etc and all came back normal aside from that good ball sensation that had been there from nearly start of symptoms. Was assumed to be prostatitis so went on a course of antibiotics for 3 months but not fundamental change to PSA following this. Did three monthly PSA and they all hovered around 3.9 - 4.5 still. In November 2017 it was decided to have an mpMRI which was done on a 1.5T based system. This was done Jan 18 and came back PiRADS 2 so I was given a preliminary all clear with the advisory to have PSA done again in six months. Being a bloke I assumed all was probably ok and left it 18months before having bloods again 🤔🥴 So July 2019 PSA came back slightly elevated at 5.6. Urologist suggested an MRI. Fortunately a new system had become available using 3T. Results came back from this July 19 as PiRADS so we knew something was up.

Next steps were TPM targeted biopsy under General anaesthetic. Result from this came back mid sept at Gleason (3+3)=6 5/20 cores showed adenocarcinoma low grade with max size 5mm. Unfortunately in all four quadrants and one near the capsule. London MDT met up a month later (Oct 2019) and echos the advice of AS.

In the interim I had done a lot of research and also reached out here plus checked others experiences and timelines. Also reached out locally to groups. I’m fortunate in a way as I understand quite a lot about the pathology of cancer and stages etc due to my ex being a researcher in trials in this field.

 From this group I became aware of a relatively new surgical technique (Retzius sparing) which evolved ~2017. Plus the names of Prof whocannotbenamedhere and a few others in London. They use robotic surgery but go in under the bladder which has shown it had dramatic benefits in terms of preserving urinary continence. Plus they use an additional process called neurosafe which essentially means a pathologist checkers out tissue samples in real time during surgery with the aim of a more informed surgical margin (negative margin) if the tumour is still within the prostate capsule. 

I think neurosafe allows for more precise surgical margin if nerve sparing with the neuro vascular bundle is possible.

For me at the age of 52 I didn’t fancy the prospect of ongoing scans and biopsies plus risking the cancer changing. Or indeed if a higher grade existed undetected if that came into play. I was reassured this was unlikely and without establishing a ‘doubling time’ thus far it could be safe to leave for months/years/decades.

With it being multifocal it kinda of ruled out RT(too young) Hifu, nanoknife, cryo, phototherapy etc. Only option for me given my age was to have it out with Retzius sparing robotic assisted technique with a high volume surgeon with excellent stats. Risks are with any operation and general anaesthetic plus some chance of continence issue and depending on nerve sparing that’s possible some issue with erections going forward. 

If the histology echos the biopsy surgery could be curative obviously with caveats that it’s still a metastatic disease although unlikely to migrate at this stage. 

Obviously the procedure leaves you sterile. I did look at sperm freezing but decided this wasn’t needed as if I do decide to have kids down the line at some point there are fairly new options for direct sperm extraction from the testicles although at 52 I’ve probably missed the kids windows if I’m honest.

i would say that there isn’t any right answer. It’s what is right for you and works best given where you are in life etc There are caveats with any of the choices really. For me I went away and learnt as much and I could and talked to various people so that my mixing pot for full of evidence based facts and then decided where I wanted to go from there.

I’m scheduled in next week so will post a new thread detailing the journey.

Good luck with your journey and shout if you have any questions or need a view etc

TG

I was diagnosed in November 2012 aged 58, and have been on AS for 7 years.

I have regular PSA tests and annual MRI. My PSA varies, but is showing no sign of rapid rise.

I would say that it is essential to have confidence in the medical team monitoring the AS, I have a very approachable consultant and a brilliant specialist nurse.

The only problem I have found is the appointments office delaying or rearranging consultant appointments as they consider that they are not important.

Personally I believe AS is more suitable for those of us who are approaching their seventh decade, as I chose 4 years ago.

As long as regular PSA checks are carried out along with MRI scans should a significant rise in PSA occur, the benefits gained from AS rather than undergoing the rigours of treatment when in or approaching your seventies must be considered.

If I had been diagnosed with a Gleason 6 in my early 60's I may have considered removal of my prostate, as at that age my general fitness levels would have given me a better chance of a quicker recovery with less side affects to contend with.  

Statistically I am likely to survive 10 years before the need for any treatment and had I had surgery instead the same survival timescale would apply but I would have had to endure recovery from surgery plus all the side affects that go with prostate removal.  No brainer for me and pleased I took the route I did.

Just a few facts to go with the above:

Diagnosed November 2015 following a HoLEP procedure but it had been suspected I had PCa since 2006 but after one too many negative biopsies and a still rising PSA, I called enough on the biopsies and opted for "watchful waiting".

PSA prior to HoLEP 5.6

Two months post HoLEP 0.3

Sept 2019 1.9

My consultant has no worries about this rise which he regards as being the result of normal prostate tissue regrowth, something with which I concur.

This procedure, far from a trial, is underway as we speak in some private hospitals.

It is called NeuroSafe, i.e. real-time biopsy of potentially cancerous tissue during surgery. Professor Whocannotbenamedhere offers it at his private London surgeries.

Several men here have had it, and others are scheduled for it. There is nothing very new about the concept as a dermatologist called Moh in the 1930’s used it to see how deep to slice down into skin cancers.

Any improvement and enhancement to any surgical procedure is welcome, and hopefully there will be many more to come!

Cheers, John.

Unless contrast dye is used it isn’t a multiparametric (mp) MRI I think. The contrast dye makes a significant difference in terms of differentiating tumour tissue over normal. I was able to see this myself as I took my scans home and visualised them. From a talk given by a Prof E at UCLA the mpMRI is a key step before moving to TPM biopsy if needed. Good luck with the journey but I would definitely raise the question with your consultant urologist. 

This might be useful: https://prostatecanceruk.org/media/2498337/5682-plain-english-consensus-guideline-final.pdf

TG

Edited by member 28 May 2020 at 08:09  | Reason: Not specified

Hi Paul:

AS was not suitable for me (due to PSA level, and trend, and number of cores).   And getting treatment turned out to be a wise decision for me (see my bio).

This video presentation is old (2014 - so some things have changed such as more use of MRIs) but still very informative.

https://pccntoronto.ca/2014/06/06/video-dr-tony-finelli-20-years-in-prostate-cancer-care-where-we-were-and-where-were-headed/

You can watch the entire presentation, or just watch Part 3 (Active Surveillance) and Part 4 (fear that need for treatment will be discovered too late -- shouldn't be a problem if AS is done properly).

I'm from Canada, and the doctor in the video is my uro-oncologist. He is now head of Urology at the largest hospital (actually a multi-location hospital network) in Canada, and is also GU lead for cancer research in Ontario.

There are many men on AS who never get to the stage of needing treatment.   

Edited by member 30 May 2020 at 17:27  | Reason: Correct reference to be part 3 and part 4 of video

I don't think it is a north / south divide ... it might be an M62 divide though. Our friend at Dewsbury hospital is sent to Leeds for all his diagnostics; Pinderfields, Bradford and Calderdale can all offer mpMRI, brachy, G68 etc but patients in York & Dewsbury have to be referred out of area - the Gov agenda to move services out of local hospitals into larger hubs or centres of excellence, I guess.

Keith is stranded in one of his ‘pads’ in South Africa now, where there is an illogical Covid prohibition alcohol sales ban, which has been ongoing for about two months.

He’s worried because he’s down to his last 1000 bottles!

Cheers, John.

I know two people on AS one gets PSA bouncing between 8 and 14. 

Merry X and all the best!

Appreciate its not easy but try not to overthink it. AS wouldn't be recommended if it wasn't a sensible course at this stage. Seems like they have caught it very early so you have some time to think. I was on AS for I think nearly 3 years and they did a good job of monitoring things on AS

Hi,

Thank you and JedSee for your comments. 

The last thing I want to do is make anyone who's selected AS to doubt their decision.

Although my father had prostate cancer he lived until he was 88 years and my younger brother was 60 years when he was diagnosed with T2a, Gleason (3+4) for which he had radiology.

I think a lot of the errors made in my diagnosis and delays, were down to COVID disruptions, but in my opinion there is no excuse for some of the malpractice.

On the initial information I was given, low volume low grade Gleason 6 (3+3), some "consultants call it benign" T2a staging. I believe my decision to opt for AS was a no brainer. The MDT had advised that treatment and I thought I couldn't go wrong following professional advice.

I was assured that if the disease progressed it would be so slow and that PSA checks would show any developments. I did some research on reputable sites, that showed  far to many men were opting for radical treatments when AS was an adequate treatment and I didn't have a problem with living with cancer. I was happy with my decision.

During AS, communications and correspondence were poor. Telephonic consultations (COVID prevented face to face meetings) were summarised in letters to my GP but I rarely received copies of them.

As I said during the next 20 months my PSA levels remained relatively stable.

It was only when purely by chance that whilst telephoning for my latest PSA results, I was put through to the consultant who had initially diagnosed me and who had recommended the follow up MRI scan in June 2021. He then realised that this was now over a year over due.

2 months later I had that MRI scan which showed both tumours had grown T3a.

I was the given another biopsy. TP under general anaesthetic which revealed extensive disease.

These results shook me! I got copies of all my medical records and discovered that, in my opinion, errors had been made.

I was booked RARP for November 2022. I was just leaving home to go for the op when the hospital telephoned me cancelling the op, due to lack of beds. I was rescheduled for the op in Dec 2022. I was all gowned up and ready to go when the anaesthetist had concerns and the op was cancelled. These delays were almost unbearable. After the second postponement, my wife and I were shattered.

I eventually got the op in Feb this year. 

I lodged an official complaint, which was a long winded process.  I eventually got a reply. It was farcical. I complained two more times, as their responses contained serious inaccuracies and contradictions. They couldn't even work out that my follow up MRI had been 14 months over due, they said it was only a 2 month delay. They said that a 2 month delay would have caused very little difference to discovering disease progression. When they finally admitted their miscalculation, they didn't comment on how much a 14 month delay may have made.

That's when I complained to the Parliamentary Service and Health Ombudsman. Only to be told that due to a back log caused by COVID, there would be a five month delay before they could investigate my grievances. So I should hear something in Spring next year. 

Anyway, I apologise for digressing and momentarily hijacking this conversation.

Unsurprising, I've lost a bit of faith in the NHS. Having said that. Recently I have taken time to write to two CEOs of Trusts complimenting and thanking their staff for excellent treatment I'd received for other health issues.

Whist researching AS, I found this https://gmcancer.org.uk/wp-content/uploads/2021/10/paper-3_gm-active-surveillance-protcol-v7.pdf which is quite interesting. It seems some Trusts  have their own additional guidelines in managing and monitoring prostate cancer whilst others just use NICE and BAUS guidelines.

Adrian.

Edited by member 23 Nov 2023 at 14:31  | Reason: Additional text.

Sorry to hear about the Prostatitis. Urine bypassing your catheter is by no means unusual and in your particular case it's almost inevitable if you are getting urgency when the tap is closed. Following my prostatectomy I suffered episodes of urinary retention and had to have emergency catheterisations. The catheter used included a bag. (just the same as the one fitted during the surgery). I'm not too sure why your catheter has a tap but no bag. Perhaps they are wanting your bladder to fill and empty as normal. I was eventually provided with some self catheterisation kits to avoid mad dashes to the A&E. The kits are intended to be 'one trip ponies' so there are no taps or bags.