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 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 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

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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.

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 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.

Best of luck with the journey and whatever you decide

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.

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