Active Surveillance-How Long?

I was diagnosed at 64. I had a family history of the disease my father and younger brother both had it. My PSA was 5.6

Three years ago, my first MRI scan showed a small tumour on the right lobe, T2a. A subsequent biopsy showed only 2 out of 15 were positive. One in the targeted right lobe,  which was only 5% cancerous, but did reveal a second foci on the left lobe which was 10% cancerous. Gleason 6 (3+3) . I was told that many consultants would deem this as benign.

At my first MDT meeting my disease was staged as T2a, low risk and the advised treatment plan was AS. I did as I was advised.

I have since discovered, although the histology, showed low grade, low volume disease, as it had been found in both lobes; it should have been upgraded to T2c, and classed as intermediate or, in view of my history, high risk disease. Which according to NICE guidelines should have been deemed unsuitable for AS

I also discovered that as a result of my first consultation, I should have been booked a follow up MRI in June 2021. This was never done.

My monitoring of the disease was limited to 3 monthly PSA checks which remained relatively stable.

Eventually they realised my 6 month follow up MRI scan was 14 months late.

It showed the bilateral disease had progressed and  breached the capsule.  A second biopsy showed that 20 out of 24 cores were positive. Gleason (4+4) T3a

I have complained regarding the cancer staging error and failing to book and conduct a follow up MRI for June 2021. They have tried to fob me off with various contradictory excuses. I have now complained to the Health Ombudsman.

My research, legally and medically, suggest NICE guidelines are just that, purely guidelines which are too open to interpretation.  

Although I wasn't informed at the time, I have since been informed that PSA tests are only an indicator and that many on AS will encounter disease progression. I advise those on AS, not to solely rely on PSA results, ensure you have follow up examinations and scans. 

Adrian

Edited by member 22 Nov 2023 at 19:38  | Reason: Not specified

Good luck and best wishes to all you guys wherever you are on your PCa journey and keep positive thoughts going no matter how difficult the road ahead may appear.

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. 

Hi All, another update. Had my TWOC, Trial without Catheter, on the 5th April and wasn't passing enough urine, so showed how to self cathetise, if i feel the need. I'm still able to urinate, but flow is quite poor. Using 1 or 2 catheters per day. Had my regular PSA test on the 10th May 2024 and was expecting a big jump, up from 7.0 to 29.8 .

I've been booked in for an appointment on 30th May, so fully expecting they recommend prostatectomy. Let's see.

Have a great evening, everyone!

Paulo.