Active Surveillance-How Long?

He would immediately prescribe a course of antibiotics followed by another PSA test and on every occasion the result would show a substantial drop.

As a stone former it was a forgone conclusion that my kidney and bladder stones would be the seat of the UTIs and following their removal my PSA would stabilise until the next lot of stones formed.

When my severe BPH was resolved following a HoLEP, my stone forming days were over but the diagnosis of a Gleason 6 (3+3) tumour made at the time of the procedure confirmed my view that PCa had been present for many years and accounted for the fact that my PSA results would never fully settle back to a level you would expect after the UTIs had been dealt with by a course of antibiotics.

Bouncing PSA results are in some cases a result of infection and would urge any man who experiences such too approach their GP and suggest that he prescribe antibiotics followed by a repeat PSA test.

Merry X and all the best!

With a G3+3 adenocarcinoma, PSA would show any spread or change very quickly. It would only be if you were diagnosed with a rare type like small cell carcinoma that PSA would remain low

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.

Paulo, I agree with what Chris has said. I have had a suprapubic catheter for over six years.when first fitted I had a tap and bag, the purpose of the tap was to keep the bladder operating in a near normal way. The advantage of the bag was instant relief if I had waited too long. It is and was easy to leave the tap open and be on free drainage. My bladder was shrinking so I was already on a slippery slope. Are you wearing a pad to soak up any small leaks ? 

A catheter can cause spasms and be very painful, if you only have the catheter for a couple of weeks it is probably not worth having medication. I tried most of the anti spasm meds and finally finished up on Regurin aka trospium chloride. 

Hope things improve.

Thanks Chris