Active Surveillance-How Long?

User

Posted 18 Nov 2019 at 20:31

Hi Everyone, my first post since my diagnosis, which was in August'19 ( All in my Bio). I'm interested in other members who have currently chosen Active Surveillance. How long without change and any advice?

Thank you, Paulo

User

Posted 22 Nov 2023 at 19:32

Originally Posted by: Online Community Member

I think there are three groups suitable for AS -

- 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.

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

User

Posted 19 Nov 2019 at 17:43

I think there are three groups suitable for AS -

- 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.

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

User

Posted 19 Nov 2019 at 09:14

I can't answer your specific questions, but one thing I can point out is that it's been found that a good regular exercise regime makes a significant improvement to the time men stay on Active Surveillance (AS), before having to switch to Active Treatment.

It is also worth pointing out that AS does come with a risk of spread which goes undetected until too late to use some treatment options. Do make sure you are getting the full surveillance part of it which will at least reduce this risk, but can't remove it.

User

Posted 19 Nov 2019 at 10:18

Hi Paulo

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.

User

Posted 19 Nov 2019 at 20:21

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

User

Posted 20 Nov 2019 at 12:50

There is a trial underway on refining surgery to save the nerves of some suitable men during the op. Here is a link :- https://www.dailymail.co.uk/news/article-7699859/The-prostate-surgery-wont-harm-sex-life-New-technique-spare-men-impotency.html

Edited by member 20 Nov 2019 at 12:50 | Reason: to highlight link

Barry

User

Posted 13 Aug 2021 at 21:50

Hi Roger

His. MRI in January showed growth backed up by biopsy in April . Gleason went from 3+3 to 4+3 . Saw consultant in June and he was offered RT or surgery. He had no qualms about the robotic surgery . That was six weeks ago . Recovering well . I’m thinking the incontinence issues are improving day by day . He has a family history of PC so always thought it would catch up with us sometime. He is nearly 68 and is otherwise fit and healthy.

Edited by member 13 Aug 2021 at 21:53 | Reason: Not specified

User

Posted 19 Nov 2019 at 17:26

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.

Roger

User

Posted 20 Nov 2019 at 08:43

My friend who is in his mid-seventies has been on A/S for five years. He was Gleason 3+4=7 on diagnosis.

He has seen five consultants on three continents, visited The Mayo Clinic in the States and discussed Nano-Knife at that famous klinik in Heidelberg (all privately).

He has annual MRIs and consultations with Professor Whocannotbenamedhere, his favourite consultant, and this year had a novel urine test which is supposed to be in lieu of a biopsy, and is following a largely vegan-type diet recommended by the Mayo Clinic.

He is quite athletic, a runner and swimmer and works out in his own gym. He says he has a great sex life, which is unlikely to be the case if he had had a prostatectomy.

So he is doing great on A/S, but ominously is a member of Exit, aka ‘The Voluntary Euthanasia Society’, and has no intention of enduring a long, lingering painful demise.

And on that bright note, I wish you the best of luck whichever path you choose.

Cheers, John.

User

Posted 20 Nov 2019 at 13:16

Hi Barry,

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.

User

Posted 27 May 2020 at 20:07

Hi All, a short update on my Active Surveillance journey. PSA readings:

2.11.19: 3.9

10.02.20: 5.6 ( Antibiotics in December and then in March for Prostatitis)

11.05.20: 5.1

27.05.20: MRI scan at Dewsbury hospital, was originally to be in August, but during my telephone appointment with the nurse on 19.05.20 we discussed the PSA rise in February and fall in May, also hoping to maybe get away in August, so decided on MRI earlier than planned. Was expecting MRI with contrast, but the staff only used a pre-muscle relaxant. Should the scan have been done with a contrast? Results next week.

Also, thank you Lyn for putting me in group 2, young men😂😂😂. I'll take that.

Thanking everyone,

Paulo

User

Posted 27 May 2020 at 21:18

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

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

User

Posted 27 May 2020 at 22:59

I agree - as far as I know, Dewsbury hospital doesn't offer mpMRI and this was just a normal MRI scan. That shouldn't be a concern though, men wouldn't necessarily have mpMRI as part of ongoing active surveillance.

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

User

Posted 28 May 2020 at 07:44

Hi Paul,

I'm 57 and was on AS for 2 1/2 years. Things appeared very stable for quite a while but PSA started rising the early part of this year and MRI picked up a small tumour. Staging upgraded to T2A.

I felt I was going to need some treatment sooner rather than later and opted for a nerve sparing prostectomy in March this year. Personally, I'm happy with my choices and things all getting back to normal. Good luck with however you decide to go forward

User

Posted 30 May 2020 at 17:11

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

User

Posted 04 Jun 2020 at 20:31

Hi Paul

Hope it helped.

Great news on the MRI front.

Please keep us updated with progress.

cheers

User

Posted 04 Jun 2020 at 23:14

"I did question her regarding contrast for the MRI and she said it isn't used now, as Lyn suggested. Wondering if it's the North/South divide regarding mpMRI and MRI?"

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.

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

User

Posted 22 Sep 2020 at 20:44

Be careful with supplements and only take them once you have discussed with your onco / urologist. Saw palmetto needs particular consideration as it may falsely lower your PSA, critical in AS.

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

User

Posted 19 Jan 2021 at 21:28

Great update Paulo

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

User

Posted 19 Jan 2021 at 21:43

Hi Paulo

thats a good result. Long may it continue!

Simon

User

Posted 20 Jan 2021 at 03:06

Quote:

Paul Craven; I'm impressed with Keith's result up to now. I'm not sure i could afford his choice of wines. 😂😂

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.

User

Posted 01 Aug 2022 at 22:34

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

Dave

User

Posted 02 Aug 2022 at 11:38

My PSA was a constant cause for concern for over a decade but thankfully my GP and I agreed on a regime of checking for UTIs after each raised raised PSA which always proved positive.

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.

Roger

User

Posted 20 Dec 2022 at 12:43

Ive been on tamsulosin for a few years and not aware it has any influence on psa, certainly no one has ever mentioned it.

Merry X and all the best!

User

Posted 20 Dec 2022 at 16:24

Tamsulosin can lower the PSA levels in men who don't have prostate cancer but doesn't appear to affect PSA levels in men who do. It certainly doesn't cause PSA to rise. However, the reason that you now need tamsulosin may be the same reason that your PSA has risen... prostate may be getting bigger, impeding your ability to empty your bladder properly, or you may have infection / inflammation? You are probably due a new MRI anyway?

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

User

Posted 31 Jan 2023 at 16:59

🎉🎉🎉

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

User

Posted 12 May 2023 at 11:23

Hi All, Had my Transperineal Biopsy on the 16th March and had to chase the results up. Got a call to say the biopsy showed no malignancy. MDT recommend AS. I had a Nurse telephone appointment yesterday, 11.05.23, with the results of a PSA taken on 5.05.23, which read 7.2 . Seems like it's bouncing around a bit, which maybe suggests Prostatitis. Will remain graded at Gleason 6.

All the best!

User

Posted 14 Jun 2023 at 13:42

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

User

Posted 14 Jun 2023 at 16:43

Originally Posted by: Online Community Member

PSA can't tell you if it spreads.

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

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

User

Posted 23 Nov 2023 at 11:26

Originally Posted by: Online Community Member

That's bad Adrian

I have also been told low risk T2, with 11 from 20 cores positive, tumours in both sides, and a family history. Doesn't inspire confidence. I will be watching my PSA result from my test in December very closely!

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.

User

Posted 24 Nov 2023 at 10:24

Originally Posted by: Online Community Member

I would be concerned if you were my dad or partner - 11/20 doesn't sound like a low burden disease even if you are G6(3+3) - have you considered a second opinion with a different urologist?

Family history isn't so significant unless the family history is of direct male relatives diagnosed with PCa in their 40s / early 50s, direct male / female relatives diagnosed at a young age with breast cancer and / or female relatives with endometrial / uterine cancers. Most men get prostate cancer if they live long enough.

Morning Lyn.

According to this site, unless I've misinterpreted it, if your father or brother had the disease, you are two and a half times more at risk of getting it. That risk, then increases even further, if these relatives had it before they were sixty. To me, that's a significant risk increase.

https://prostatecanceruk.org/prostate-information-and-support/risk-and-symptoms/are-you-at-risk?scrollTo=family-history-and-genetics

Adrian

Edited by member 24 Nov 2023 at 10:45 | Reason: Not specified

User

Posted 28 Mar 2024 at 19:48

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.

User

Posted 28 Mar 2024 at 22:33

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

Show Most Thanked Posts

User

Posted 19 Nov 2019 at 09:14

User

Posted 19 Nov 2019 at 10:18

Hi Paulo

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.

User

Posted 19 Nov 2019 at 17:26

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

Just a few facts to go with the above:

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.

Roger

User

Posted 19 Nov 2019 at 17:43

I think there are three groups suitable for AS -

- 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.

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

User

Posted 19 Nov 2019 at 20:21

Hi Paul

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

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.

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

User

Posted 20 Nov 2019 at 08:43

My friend who is in his mid-seventies has been on A/S for five years. He was Gleason 3+4=7 on diagnosis.

He has seen five consultants on three continents, visited The Mayo Clinic in the States and discussed Nano-Knife at that famous klinik in Heidelberg (all privately).

He is quite athletic, a runner and swimmer and works out in his own gym. He says he has a great sex life, which is unlikely to be the case if he had had a prostatectomy.

So he is doing great on A/S, but ominously is a member of Exit, aka ‘The Voluntary Euthanasia Society’, and has no intention of enduring a long, lingering painful demise.

And on that bright note, I wish you the best of luck whichever path you choose.

Cheers, John.

User

Posted 20 Nov 2019 at 12:50

Edited by member 20 Nov 2019 at 12:50 | Reason: to highlight link

Barry

User

Posted 20 Nov 2019 at 13:16

Hi Barry,

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.

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

Cheers, John.

User

Posted 20 Nov 2019 at 20:43

Hi Andy62, thank you for replying. I have to agree that it's important to remain as fit and healthy as possible. I have cycled for over 30 years, but due to the prostatitis and a long standing back problem earlier this year had to take a break. Just resuming light exercise. Keep up the good work.

User

Posted 20 Nov 2019 at 20:50

Hi Alan,

Many thanks for your reply. It's encouraging to see the length of time you've been on AS, long may it continue.

Thank you, Paulo

User

Posted 20 Nov 2019 at 20:58

Hi Roger, Thank you for going to the trouble of replying. I've got to agree it's a difficult choice regarding AS, but at present I feel it's the right choice for me. All the best.

Paulo

User

Posted 20 Nov 2019 at 21:10

Hi Lyn, thank you for replying, I've been reading some of your posts since I was diagnosed and found them interesting and informative. Unfortunately, I'm not in one of the 3 groups you think suitable for AS, although at present have a low gleason grade, but only had the 3 PSA tests at present. Just waiting for my first AS nurse led appointment next Tuesday when I'll receive yesterdays PSA test, so time will tell. Keep up the posts.

Thank you,Paulo

User

Posted 20 Nov 2019 at 21:22

Hi TG, I really appreciate your reply and length of detailed post. The golf ball feeling hopefully won't return, especially with me being a cyclist. I'm still in the learning stage, especially regarding my Mindset. Thank you for the offer of your opinion in future, but more importantly, all the best next week. I'll look out for your posts in future.

Paulo

User

Posted 20 Nov 2019 at 21:28

Hi John, Thank you for replying. I appreciate any reply and life stories, especially ones with a hint of humour.

All the best, Paulo

User

Posted 20 Nov 2019 at 21:35

Hi Barry, Thank you for replying and the link. The more research and trials the better, suppose on a personal note, I'll have to see how I progress on AS. All the best and keep up the posts.

Thank you,Paulo

User

Posted 20 Nov 2019 at 23:45

Originally Posted by: Online Community Member

Thank you,Paulo

Consider yourself to be in group 2, young men who just need to be 'normal' for as long as possible. Your PSA hovers around the 4 mark (ups and downs could be classic for prostatitis anyway), you have a well contained T1 tumour of low grade (G3+3) ... AS makes perfect sense, I think.

Just an afterthought - you should edit your profile to remove the name of your consultant.

Another afterthought - a friend of ours has also been diagnosed recently and is under the same hospital as you but he had to go to St James in Leeds for a lot of his diagnostics.

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

User

Posted 27 May 2020 at 20:07

Hi All, a short update on my Active Surveillance journey. PSA readings:

2.11.19: 3.9

10.02.20: 5.6 ( Antibiotics in December and then in March for Prostatitis)

11.05.20: 5.1

Also, thank you Lyn for putting me in group 2, young men😂😂😂. I'll take that.

Thanking everyone,

Paulo

User

Posted 27 May 2020 at 21:18

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

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

User

Posted 27 May 2020 at 22:59

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

User

Posted 28 May 2020 at 07:44

Hi Paul,

I'm 57 and was on AS for 2 1/2 years. Things appeared very stable for quite a while but PSA started rising the early part of this year and MRI picked up a small tumour. Staging upgraded to T2A.

User

Posted 30 May 2020 at 17:11

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/

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

User

Posted 04 Jun 2020 at 20:13

Hi all, a big thank you to TechGuy, Lyn, MikeW and janus381 for replying. TechGuy, I've been reading your posts and glad you're happy so far with your treatment, especially the white wine!

Got a call today from the nurse regarding my MRI scan and she said there isn't any significant change, so I'm obviously happy with the news. Because of the PSA reading, she's passing my results onto the MDT to discuss next Wednesday and will relay any further comments. I did question her regarding contrast for the MRI and she said it isn't used now, as Lyn suggested. Wondering if it's the North/South divide regarding mpMRI and MRI?

Once again, thank you.

Paulo

User

Posted 04 Jun 2020 at 20:31

Hi Paul

Hope it helped.

Great news on the MRI front.

Please keep us updated with progress.

cheers

User

Posted 04 Jun 2020 at 23:14

"I did question her regarding contrast for the MRI and she said it isn't used now, as Lyn suggested. Wondering if it's the North/South divide regarding mpMRI and MRI?"

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

User

Posted 11 Jun 2020 at 20:10

Evening All, Had a call from the consultant today and the MDT are happy for Active Surveillance to continue. Another PSA test in approximately 4 months.

Once again, thank you to everyone who took the time to respond or read my updates.

Paulo

User

Posted 12 Jun 2020 at 00:43

👍

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

User

Posted 22 Sep 2020 at 20:25

Hi all, got a call from the nurse today regarding my PSA test results from last week, 5.4, which is up slightly from 5.1 in May, but still lower than my 5.6 at the beginning of the year. Interesting to hear my prostate had increased in size from 40 at my first MRI scan in July'19 to 48 at my scan in May'20. Maybe suggesting the PSA increase?

I've been following the progress of another member and friend of Bollinge with interest, so decided to have a slight lifestyle change. 5 weeks ago, I started eating during an 8 hour window between 9am and 5pm, which has been really easy to stick to.

I've always eaten a relatively balanced diet, as I used to cycle road race in my younger days and also competed in Time Trials up to when I was 51, but have also cut out red meat and most dairy products. I'm currently reading the book, Eat to Beat Disease by Dr William Li, which offers interesting advice.

I'm looking into taking the supplements, Turmeric/Curcumin with black pepper, Saw Palmetto and Reuteri. Has anyone taken or have any knowledge of the above?

Next PSA test in 4 months time. As always, thank you for reading .

User

Posted 22 Sep 2020 at 20:44

Be careful with supplements and only take them once you have discussed with your onco / urologist. Saw palmetto needs particular consideration as it may falsely lower your PSA, critical in AS.

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

User

Posted 23 Sep 2020 at 17:21

I am sure if you contact my mate Keith (not sure of his nom de plume, but you can search for it as he occasionally contributes here) by PM he would be happy to share with you his exercise and diet regimen (which seems to incorporate a lot of fine wines and nuts)!

His tumour has shrunk and his PSA has gone down to 6, from whatever it was.

Cheers, John.

User

Posted 23 Sep 2020 at 17:48

Hi Lyn, thank you again for your advice and reply.

Do you ever sleep?🤣🤣

User

Posted 23 Sep 2020 at 17:56

Hi John, thank you for your reply. I've seen a lengthy update on Keith's progress on a Facebook group I'm part of, but I don't want to intrude on people's privacy too much. I understand everyone reacts differently to diet and exercise, but I'm impressed with Keith's result up to now. I'm not sure i could afford his choice of wines. 😂😂

User

Posted 19 Jan 2021 at 11:42

Hi Everyone,

Just had my nurse appointment by telephone to update me regarding last weeks PSA test. It's gone down slightly to 5.1 from 5.4 last September.

Also, I've had no symptoms of prostatitis recently.

I like to catch up on the forum on a regular basis and am amazed and thankful people take the time to reply to many of the posts. Thank you to everyone, but especially LynEyre, Andy2, Bollinge, Old Barry, ChrisJ and techguy.

Paulo

User

Posted 19 Jan 2021 at 21:28

Great update Paulo

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

User

Posted 19 Jan 2021 at 21:43

Hi Paulo

thats a good result. Long may it continue!

Simon

User

Posted 20 Jan 2021 at 03:06

Quote:

Paul Craven; I'm impressed with Keith's result up to now. I'm not sure i could afford his choice of wines. 😂😂

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.

User

Posted 20 Jul 2021 at 12:04

Hi Everyone,

Had my latest update from the specialist nurse regarding my blood test taken on 1st July '21. It's gone down very slightly from 5.1 to 5.0. Another test in 4 months time. Thank you to everyone who's taken the time to read or respond to my post.

Kind regards,

Paul

User

Posted 07 Aug 2021 at 18:30

I was diagnosed with low-grade prostate cancer in 2004 via the ProtecT study. Treatment has consisted of bi-annual PSA tests and annual DRE plus Tamsulosin and Finasteride for much of that time. (until I had HoLEP surgery recently)

I continue on Active surveillance which is a feasible alternative to invasive treatments if it is monitored carefully. But, you have to be sure that you can live with the cancer rather than take the 'just get rid of it' approach.

I do accept that I have been 'lucky' in that (so far) my cancer has not spread.

David

User

Posted 07 Aug 2021 at 21:47

David, have you ever considered the possibility that the HoLEP procedure removed all of the PCa?

I discussed this with Mr A at my first post op consultation and he said it was a possibility and only an MRI could confirm this hypothesis and even then minimal cells could be missed even when using the latest MRI technology, so I guess it's a case of never taking ones eye off the ball so the speak and follow the NICE guidelines for those on AS and hope the "scores on the doors" remain stable.

Of course there's always the risk of a new "batch" of rogue cells cropping up in what's left of the prostate tissue and that comes with territory but the AS regime should hopefully pick that up.

Roger

User

Posted 11 Aug 2021 at 22:13

My husband was 8 years active surveillance and had his prostate removed 6 weeks ago by robotic surgery .

User

Posted 12 Aug 2021 at 02:38

Hi Mel.

It would be helpful to know what prompted the removal of your husband's prostate after 8 years on AS.

Was it a rapid increase in PSA and or MRI report showing increase in size of lesion(s)?

Hope he is recovering well from the procedure.

Roger

User

Posted 13 Aug 2021 at 21:50

Hi Roger

Edited by member 13 Aug 2021 at 21:53 | Reason: Not specified

User

Posted 06 Dec 2021 at 14:03

Hi Everyone,

Updating my 3 monthly results that I received from the specialist nurse a couple of weeks ago. A large increase of 20% from a PSA reading of 5.0 to 6.0.

The nurse said she wasn't concerned at this point and recommended another PSA test in 3 months, I did voice my concerns and she recommended I speak to my GP. I spoke to my Doctor regarding my concerns and I did a water test, that was clear.

I've suffered with lower back pain for a number of years, but have had a really bad episode of Sciatica for the last 2 months. I still believe that my back pain is not connected to my cancer. Can an enlarged prostate or prostatitis trigger sciatic pain and increase PSA? I'm currently under the care of the MSK team and they're recommending another MRI scan for the sciatic pain.

My plan is to enjoy Christmas and the New Year, wait to see what my next PSA test result is in February and then re-evaluate my options.

A bit early, but a Happy Christmas and all the best to everyone in the New Year.

Paulo

User

Posted 28 Mar 2022 at 20:21

Hi all, update on my latest PSA test taken on 10th February'22. Down slightly to 5.8 , so next test in 3 months.

The Sciatic pain i have been suffering with was confirmed by the MRI scan taken in December, showing a large left central L5-S1 disc extrusion compressing the S1 nerve.

Paulo

Edited by member 28 Mar 2022 at 20:26 | Reason: Not specified

User

Posted 21 Jun 2022 at 10:57

Hi all, update on my latest PSA test taken on 14th June'22. Down slightly again, from 5.8 to 5.5, so after todays conversation with the specialist nurse, we've agreed to the next test in 6 months. The conversation always ends with the question, If I'm happy to remain on Active Surveillance?

Paulo

User

Posted 21 Jun 2022 at 13:44

Hi Paul.

Like yourself I've had a fall in my PSA which has prompted me to stay on AS despite the PIRAD 4 lesion identified on the MRI I had at the beginning of the year.

I'm a bit nonplussed at the Uro's attitude to my case. A couple of months ago he'd scheduled a TP biopsy on the basis of the PIRAD 4 MRI report which I put on hold, then at a recent face to face consultation he said that a PIRAD 4 could be anything and I may as well stay on AS. My respect for him is slowly diminishing.

Roger

User

Posted 21 Jun 2022 at 13:49

I would be asking for a treatment plan things aren't going to improve sooner be treated now than waiting for a rise in psa just my opinion 👍

User

Posted 21 Jun 2022 at 15:04

My MRI report identified two PIRADS 4 lesions of 1cm each. At the time the consultant said it was inconclusive (50:50) for cancer. However my biopsy showed cancer in all 12 cores (4+3) with up to 66% of the tissue involved in one of them. Based on this I'm not sure I'd be hanging around with a PIRADS 4 lesion.

User

Posted 21 Jun 2022 at 15:48

The difference is that Rogcal has already been diagnosed with a G3+3 and his PSA has been something akin to a cycle ride across the Alps. In that context, his onco is rightly pointing out that the PIRADS 4 is most likely picking up cancer he already knows he has; PSA did rise which could have been the end of AS but has also fallen.

Rogcal- just tell them you want a TP biopsy as previously agreed.

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

User

Posted 26 Jun 2022 at 16:24

Hi Paulo,

I'm only replying to your question after having been 'nudged' back onto the site my most welcome 'how are you' messages from another old-stager - after an absence of about 3 years !

Not sure if my details and previous posts are still visible / not archived, but suffice to say that I'm now about 14 years into AS/WW and still surviving, alive and kicking. In my case the associated conditions of severely wrecked bladder / 200cc prostate and other issues implied that simply doing nothing /living with it was by far the best option despite intensive pressures from Uros / Oncos to the effect that positive treatment was critical, even essential. For me, ongoing quality of life has been the guiding factor. in the very clear knowledge that treatment of any kind was in my case going to be life-changing. Should emphasise that there are always risks with AS as others have pointed out, but has worked for me . so far.

Everybody has to make their own decisions , based upon as much quality information as they can gather from all sources. My stance may well have been considered inadvisable by many others unwilling to go protracted periods with the PCa still there, but it's horses for courses - prefer to believe that mine is just a dozing 'Pussycat' rather than anything more aggressive lying in wait.... but, not everybody may be so lucky.

All very best / David

'It couldn't possibly happen to me....'

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