Comment on AS

Comment on AS

User

Posted 06 Mar 2025 at 09:49

I may be wrong - and more seasoned members of this forum will know better than me so please correct me if that's the case - but it seems to me that the general feeling in some posts is that AS is just "kicking the can down the road", ie that treatment will inevitably be needed at some point. My understanding is that there are about 100,000 men in the UK currently on AS and several studies have shown that the 10 to 15 years life expectancy for low-risk 3+3 and even favourable 3+4 is roughly the same for those being monitored as with radical treatment.

User

Posted 15 Mar 2025 at 13:40

I’d think seriously of having a biopsy because that will give you and your clinicians all the information they need to make an informed decision. Like you my PSA is only just above the line, like you the mri showed a pirad 4 lesion of a similar size and I’m in the same age bracket. However it was the biopsy results of Gleason 3+4 T2b which drove the decision i’ve made.

User

Posted 16 Mar 2025 at 04:05

Im 58 and following a PSA test of 4.6 last October had an MRI showing PIRADS 4 lesion in one side and no external signs.

That automatically got me referred for a biopsy in February (it was under full anesthetic so saved my embarrassment!) and found 4 out of 12 samples with PCa and Gleason 6 (3+3). PSA now 6.4.

The specialist considered all the factors and, after I quizzed him hard on other potential progression and outcomes, he was still happy to recommend AS - but it was 'my call'.

Having read up about potential post operation issues I'm tentatively OK with AS - for now. PSA tests every 4 months and MRI end of the year.

Nevertheless it's been a constant mind niggle - and rather than let that get to me negatively have started focusing on health, diet and fitness:

1) loose another 4kg so in middle of the BMI 'ok' range.

2) upping the cycling from average 50 miles to 100m a week. Planned a 240m off road trek in May over 4 days and 100m overnighter at summer solstice.

3) Already somewhat on this path - more veg, pulses, nuts & seeds and less red meat. No pies & processed meat, no white carbs & cut down on the drink (latter is hard as I do like my wine). Hopefully get my good cholesterol higher and reduce the bad.

4) Taking whole plant and gut health + Vit D3 supplements together - a recent Cambridge study showed marked stabilisation and even reductions in PSA in men with a range of Gleason scores and those post treatment.

5) Started yoga (it's a 10 mile cycle away) for core strength and relaxation. I hadn't realised how inflexible I was! To move towards being more grounded and body mindful is a whole new experience.

So, all of these lifestyle changes may come to slowing any PCa progression, maybe it won't - but in the latter scenario at least I'll be more fighting fit for whatever ops & treatment lie ahead.

Whatever individuals decide best, suggest to do so on having as much test info and data as can be available.

Following my initial worries, panic & some depression over tests and then first shock of finding C I've found benefit in initiating being proactive over the whole situation. If you do choose AS then make your surveillance VERY active!

Good luck.

Edited by member 16 Mar 2025 at 04:34 | Reason: Not specified

User

Posted 06 Mar 2025 at 12:19

Thanks Harty - much appreciated and I was very sorry to hear how events played out for you so quickly which I suppose should be a warning to all of us in a similar situation. I have heard that in many cases when the prostate is removed and sliced for biopsy the grading is very often increased. You were initially placed on AS and forgive me for saying that with the presence of tertiary pattern 5 Cribriform content, which I think is regarded as high risk, this is perhaps surprising. I've remained under The Christie privately for AS and I'm being checked regularly with PSA tests every six months and MRI scan now every 12 to 18 months so I feel as if I am in good care but at the end of the day AS is always accompanied by a degree of worry and anxiety.

User

Posted 06 Mar 2025 at 19:55

Hi Julian.

My active surveillance failed. I was initially diagnosed with T2a, Gleason 6 (3+3) low volume cancer. In 18 months, it appeared to have progressed to T3a, capsule breached, Gleason 9 (4+5) extensive disease. So you would think I was against active surveillance, but I'm not.

It is quite rare for your Gleason score to rise. So in my case, it is far more likely that my initial biopsy was inaccurate and had unluckily missed the more aggressive cancer cells.

You'll never be totally secure with this disease. Biopsies can be wrong, and for some active surveillance will fail. However, for half of those eligible for AS, it will be successful, and they will not require any radical treatment or suffer any side effects associated with it.

It is therefore, not inevitable, that prostate cancer will progress and require further treatment. Properly conducted AS is not just kicking the can down the road. It is a way of dealing with the disease without resorting to radical treatment.

As you say, AS does cause degree of worry or anxiety. You need a certain mindset to cope with that. However, even after radical treatment, anxiety isn't eliminated, the risk of recurrence can be equally worrying.

Autopsies show that thousands of men were found to have clinically significant prostate cancer, which had never been diagnosed. They died with it and not from it.

Active surveillance is increasingly being used and is reducing more men from being over treated.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

I am a great supporter of AS.

Unfortunately, as this site is heavily biased towards failures and poor outcomes, AS will never get 'a fair hearing' on here. You'll hear plenty of horror stories, of how it's failed, but you'll very rarely hear how successful it's been. Those who've benefitted from it will have no need to use this forum.

Edited by member 06 Mar 2025 at 22:28 | Reason: Additional text

User

Posted 07 Mar 2025 at 08:41

Hello Adrian - many thanks for your carefully considered and extensive reply to my post, also your positivity about AS despite your own experience, which is very much appreciated and reassuring.

Unfortunately, other posters, with the exception of Harty, present a contradictory view which I suppose supports what you say about AS never getting a fair hearing in the forum and horror stories of failure.

I'm not sure if those posters have read my profile which shows that since diagnosis my PSA levels have been relatively stable (except for pesky UTIs!) and two MRI scans following the first in July 2022 have shown "no change" in the prostate. I think this justifies the biopsy second opinion of "best regarded as 3+3" and I feel very fortunate I was able to avoid life-changing treatment at the start.

I do realise that it's only a matter of so far so good but at the moment I'm happy to continue with AS without worrying too much about if and when treatment will be needed in the future. Also, at the age of 76, there’s a fair chance something else will get me first!

When starting this topic I didn't especially want to go on much about my own situation, rather open AS to a broader discussion, and I was beginning to regret posting in the first place. Thanks again and with kind regards, Julian

User

Posted 14 Mar 2025 at 08:55

Originally Posted by: Online Community Member

However, I still maintain that if you are monitored correctly, it's a good treatment option for those with low volume, low grade, prostate confined disease.

Well said Adrian. I think the fact that two of us, who both had unfortunate experiences with AS, are both advocating it as a good option (as long as it is carefully monitored of course), speaks volumes.

Ian.

User

Posted 14 Mar 2025 at 14:27

Adrian - many thanks for your further contribution to this thread. I'm grateful to you for sharing your considerable knowledge and experience and I've carefully noted its contents.

I need to say that I'm officially T2c (usually referred to in hospital correspondence as T2a N0 M0). TP biopsy at Blackpool showed 5 cores out of 25 with up to 20% involvement, two of which were "very fragmented and difficult to read" but overall "best regarded" as 3+4. There's a 14mm lesion in the left posterior (relatively small in a 94cc prostate) and a small amount of 3+3 on the right hand side in the mid zone.

I went to The Christie in Manchester for a second opinion and the reviewing pathologist was "very confident that there was only a very small amount of tumour in the specimen" and that the lesion is "almost exclusively" Gleason 3 with a "minimal" amount of pattern 4 and "best regarded" as 3+3 which was supported by the GM Prostate MDT, hence the AS recommendation. The biopsy also identified a "tiny amount" of 3+3 on the right hand side in the mid zone.

I followed the link to your original post about AS in December 2023 and from there to the Greater Manchester Proposed Revision to Active Surveillance guidelines. The author of this paper is actually my consultant at The Christie.

As mentioned earlier, he's happy with my two follow-up MRI scans at The Christie, the latest last November, showing "no change whatsoever" in the prostate and fluctuating but relatively stable PSA levels between around 9 and 12 (high compared to others but my understanding is that quite a lot can be attributed to my age and very large prostate).

I also saw a professor in Wrexham and consulted a renowned urologist in Birmingham with a view to HIFU which was, and still is, my preferred treatment option if things change, although five sessions of SABR could also be an attractive option.

Thanks again and with best wishes to all, Julian

User

Posted 15 Mar 2025 at 11:16

Hi Will.

Welcome to the forum mate.

Your PSA is only just in the abnormal range for a man of your age. Your pi-rads 4 suggests that there's a high likelihood of it being prostate cancer. I'm not medically trained, but believe only a biopsy can show whether or not the lesion is cancerous. It will also indicate how aggressive it is, IF it's cancer.

If I were in your shoes, I'd wait on another PSA check in three months time and take it from there.

Best of luck, mate.👍

User

Posted 15 Mar 2025 at 14:26

Hi Will, you've had two replies so far one erring on the side of wait, and one erring on the side of get a biopsy.

If a biopsy were zero risk and 100% certain to give you a clear answer, I would say have a biopsy.

There are slight risks with a biopsy, the risks have been reduced in the last decade but they are still not zero. The result of your biopsy may be a positive diagnosis, but it may be, "oh a bit of low grade Gleason 3", or "nothing found, but we might have missed a bit".

So I think monitoring PSA is sufficient, until it shows a clear indication that a biopsy is going to find something, rather than be inconclusive.

Dave

User

Posted 15 Mar 2025 at 19:39

Hi Will. Personally I would go for the biopsy. I have never had an abnormal PSA reading in my life despite it later being found I had both a Gleason 6 and later a Gleason 8 tumour. Mine were non-secreting hence no elevated PSA. It's pretty rare but if I hadn't had two biopsies and had remained on AS I might be dead now. Sorry, I'm not trying to scare you but there's no way to pretty it up. The consultant told me that with my PSA readings, normal DRE results and my OK urine flow they would never normally have even called me in for further examination. It was purely because I had a UTI and because of my family history (my dad died of prostate cancer) that I was referred for first an ultrasound and then MRIs which discovered lesions, and then led to biopsies that discovered the tumours. As a result as you might expect I say go for every test you can get. It costs you nothing except a bit of discomfort maybe. All the best mate.

User

Posted 17 Mar 2025 at 12:35

HI Adrian

No, I wasn't sent any copies. I had to make an appointment with the CNS and go in for a face to face. When she brought the MRI up on the screen there were four areas highlighted and the histology report that was sent to my "My Care" app only partially reflected the notes that were on the system, including the size of the lesions. my histology stated the largest was 2mm and only a single area of concern when in fact the largest was double that and that is was definitely multifocal.

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User

Posted 06 Mar 2025 at 10:55

As someone who was put on AS, then referred for treatment, my view is that AS is fine, as long as you are monitored closely. I was unfortunate, in that I was either misdiagnosed originally, or my cancer was growing at an alarming rate. I started AS in Sept 23, with a supposedly relatively small and well contained T2 tumour (albeit bilateral disease), and was told It could be years before I needed to consider treatment, if ever.

In June 24 I was referred for surgery, and when they removed my prostate, the histology showed T3a, as the tumour had broken through the wall of the capsule on one side.

I also had tertiary pattern 5, Cribriform in one core, and PNI, so I'm not sure if any/all of these factors played a part in the rapid progression.

Having said all of that, as I sit here now, incontinent after 7 months, and dead as a dodo downstairs, If I could still safely be on AS then I would choose that option.

You're 76? Given the scores that you have, you would be very unlucky if you needed treatment in the next 10 years, so my advice would be to stay on AS, as long as you make sure they carry out all the regular checks thoroughly.

This only my opinion, and I am in no way medically trained, but hope that it helps.

All the best.

Ian.

Edited by member 06 Mar 2025 at 10:57 | Reason: Typo

User

Posted 06 Mar 2025 at 12:19

User

Posted 06 Mar 2025 at 17:35

I was diagnosed in January T2b Gleason 3+4 and told that although AS was recommended I could choose treatment.

6 weeks later and much research I’m having RARP on 8/04.

Why? Definitely felt the ‘kicking the can down the road” issue, didn’t want to risk being too old/ill with other co-morbidities to have surgery, and, a friend who I know has PCa told me he had been diagnosed 8 years previously, recommended AS but during year 3 it got very aggressive, breached the capsule and now 5 years later he’s T4.

I realise the last point might be very unusual but weighing the risks, for me, it’s coming out and I’ll deal with the side effects.

Tough choice though, I’ve found it very odd that with this condition it’s been left up to me to decide what to do.

User

Posted 06 Mar 2025 at 19:55

Hi Julian.

It is quite rare for your Gleason score to rise. So in my case, it is far more likely that my initial biopsy was inaccurate and had unluckily missed the more aggressive cancer cells.

Autopsies show that thousands of men were found to have clinically significant prostate cancer, which had never been diagnosed. They died with it and not from it.

Active surveillance is increasingly being used and is reducing more men from being over treated.

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

I am a great supporter of AS.

Edited by member 06 Mar 2025 at 22:28 | Reason: Additional text

User

Posted 06 Mar 2025 at 20:21

I was diagnosed with Gleason 6 low-grade cancer following biopsy. I was offered active surveillance but had a hunch that wasn’t a good idea although it was tempting to put it on the back burner for a bit.

I did my own research on type 3 cells ie low-grade and from a pathology perspective they exhibit all the normal traits of a cancer cell and can indeed metastasise although less likely at that grade.

This was also echoed by clinically qualified friends immunologist and practising doctor level. I took the view to act now and have surgery.

I also checked what the usual pathway in the US and various European countries and it appeared the general view was avoid focal treatments and just get it out.

Pleased I followed my hunch because as it turned out the cancer was more extensive than had been shown on biopsy or the scans. And I was close to going T3. And so far so good five years down the line. Final grade was 3+4 T2c

I was also mindful that it’s common to get upgraded (~44%) post surgery histology in terms of the cancer grading.

The general view amongst clinician friends with a cancer is the sooner it’s out the less opportunity it has to metastasise. For me really was as simple as that.

This is one of the papers which helped me make my decision. It discusses research which is showing that cancers can migrate a lot earlier than assumed. I checked out a number of the points raised with pathology research studies and they echoed the findings that even gleason 6 is capable of metastases.

https://www.scientificamerican.com/blog/guest-blog/the-hallmarks-of-cancer-6-tissue-invasion-and-metastasis/

Best of luck with the journey and whatever you decide

Edited by member 15 Mar 2025 at 08:54 | Reason: Not specified

User

Posted 06 Mar 2025 at 21:14

Jan 2018 after my first biopsy found a Gleason 6 low risk tumour I was put on AS. The consultant said "this cancer is not going to kill you in the next 15 years". I wasn't happy with the follow up reviews I had and so 18 months later asked to be transferred to a hospital closer to my home.

The new hospital immediately sent me for an MRI which found a lesion. A second biopsy found a high risk Gleason 8 tumour. I subsequently had HT and EBRT.

If I'd stayed on AS at the first hospital I might not be here today. I had no symptoms and I've never had an abnormal PSA result in my life as my tumours were non-secreting. So my surveillance reviews there consisted of a PSA test and a brief chat. No follow up scans were scheduled. The Gleason 8 would have carried on growing undetected.

In my case changing hospitals saved my life.

User

Posted 07 Mar 2025 at 08:41

Hello Adrian - many thanks for your carefully considered and extensive reply to my post, also your positivity about AS despite your own experience, which is very much appreciated and reassuring.

User

Posted 13 Mar 2025 at 16:04

Like Harty I was diagnosed G6 and a T1 or 2 in March 24, I was not given a choice and the urologists put me on AS. My PSA was 8.34, 7.36 after the biopsy and 8.66 at the next test. I insisted on seeing my MRI and it showed multiple lesions so in the July I pushed for surgery.

Final report T3b, first PSA 0.02. (Dec 24) The surgeon said I was lucky I pushed and had made the right choice.

The current diagnoses systems are only an indication of what might be there, I went from G6 to 4+3 with seminal vesticule involvement within 8 months but my PSA never went above the 8.66.

Keep a wary eye if you are put on AS.

User

Posted 14 Mar 2025 at 08:42

Originally Posted by: Online Community Member

As I suspected most of the replies on this thread describe AS failure, some with potentially dangerous consequences. They are frightening stories to hear for those on AS. There have been no responses from those who have found AS successful.

It's right to warn others that AS can fail, but the balance on this forum is very heavily biased towards poor outcomes and doesn't accurately reflect the true success rate of AS.

Just because a handful of us have had bad experiences with AS, it would be absurd to disregard it as a successful treatment for countless others.

Hi Paul Carter. You mentioned that you insisted seeing your MRI and it showed multiple lesions. I presume you mean you asked for a copy of your MRI report which stated you had multiple lesions. Rather than viewing the MRI scan itself and finding for yourself that that was the case. I wonder if you could clarify please, as I have both copies of my MRI scan and an actual DVD of the scan itself. You also mention that your PSA levels remained relatively stable and did not indicate any disease progression.

In my conversation

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

I warned others of the increased risk of AS failure for those with multiple lesions, especially those with aT2c staging (lesions in both prostate lobes) I also mentioned the unreliability of PSA tests as a sole indicator in AS monitoring. In addition I strongly advised others to always ask for copies of scan and biopsies reports and letters summarising consultations.

There will always be risks with AS. In my opinion, the biggest risks are the accuracy of initial biopsy and MRI scans, which the AS is based on. However, I still maintain that if you are monitored correctly, it's a good treatment option for those with low volume, low grade, prostate confined disease.

User

Posted 14 Mar 2025 at 08:55

Originally Posted by: Online Community Member

However, I still maintain that if you are monitored correctly, it's a good treatment option for those with low volume, low grade, prostate confined disease.

Ian.

User

Posted 14 Mar 2025 at 14:27

Adrian - many thanks for your further contribution to this thread. I'm grateful to you for sharing your considerable knowledge and experience and I've carefully noted its contents.

Thanks again and with best wishes to all, Julian

User

Posted 15 Mar 2025 at 10:52

Hi, I am 68 and have not yet been diagnosed , after an MRI with contrast following a PSA of 4.6 a lesion 5mm pirad 4 was noted pz mid gland. Absolutely floored I was in a daze just the fact that the scan noted a lesion with a high risk it being of clinical significance. To add to my worries the Oncologist has suggested I go on AS and review PSA in 3 months June this year. I am really confused as what to do whether to follow his advice or go straight for a biopsy which he thinks is not necessary at this time. The MRI notes nothing remarkable outside the gland. I don’t know what to do but just typing this on this site helps. I would appreciate any thoughts. Thanks

User

Posted 15 Mar 2025 at 11:16

Hi Will.

Welcome to the forum mate.

If I were in your shoes, I'd wait on another PSA check in three months time and take it from there.

Best of luck, mate.👍

User

Posted 15 Mar 2025 at 12:00

Hi Adrian, thanks for the reply. I don’t think many if any of us on this forum are medically trained but I really appreciate people’s opinion on here as they are in the mix as it were. I think I’ll let it sit with me for a while as I only had the results on Wednesday 12th this week. It overwhelms you when you truly don’t understand … Maybe I should trust the Oncologist as he’s the expert. Thanks again Adrian I appreciate your input.

User

Posted 15 Mar 2025 at 13:40

User

Posted 15 Mar 2025 at 13:57

Thanks for your reply, I really appreciate it, sure I am undecided your experience has added some weight towards a biopsy being done. As I said I am undecided which is why I have posted on here to gather people’s thoughts. Thanks again.

User

Posted 15 Mar 2025 at 14:26

Hi Will, you've had two replies so far one erring on the side of wait, and one erring on the side of get a biopsy.

If a biopsy were zero risk and 100% certain to give you a clear answer, I would say have a biopsy.

So I think monitoring PSA is sufficient, until it shows a clear indication that a biopsy is going to find something, rather than be inconclusive.

Dave

User

Posted 15 Mar 2025 at 19:39

User

Posted 16 Mar 2025 at 04:05

Im 58 and following a PSA test of 4.6 last October had an MRI showing PIRADS 4 lesion in one side and no external signs.

That automatically got me referred for a biopsy in February (it was under full anesthetic so saved my embarrassment!) and found 4 out of 12 samples with PCa and Gleason 6 (3+3). PSA now 6.4.

The specialist considered all the factors and, after I quizzed him hard on other potential progression and outcomes, he was still happy to recommend AS - but it was 'my call'.

Having read up about potential post operation issues I'm tentatively OK with AS - for now. PSA tests every 4 months and MRI end of the year.

Nevertheless it's been a constant mind niggle - and rather than let that get to me negatively have started focusing on health, diet and fitness:

1) loose another 4kg so in middle of the BMI 'ok' range.

2) upping the cycling from average 50 miles to 100m a week. Planned a 240m off road trek in May over 4 days and 100m overnighter at summer solstice.

5) Started yoga (it's a 10 mile cycle away) for core strength and relaxation. I hadn't realised how inflexible I was! To move towards being more grounded and body mindful is a whole new experience.

So, all of these lifestyle changes may come to slowing any PCa progression, maybe it won't - but in the latter scenario at least I'll be more fighting fit for whatever ops & treatment lie ahead.

Whatever individuals decide best, suggest to do so on having as much test info and data as can be available.

Good luck.

Edited by member 16 Mar 2025 at 04:34 | Reason: Not specified

User

Posted 17 Mar 2025 at 12:35

HI Adrian

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