How long should you go on AS?

Being on AS can be a challenge, I have been on AS now for 2.5 years. It is important that it is active, so regular PSA tests and yearly MRI to monitor changes. If during AS risk increases then you can decide about treatment, although there is a lot of argument at the moment that Gleason 6 should not be classed as cancer. 

Hi Andy

I was on AS for 4 years but I have read of others on here for longer, think the longest was about 7 years.

It all depends on your original stats and how they may increase over time

Your stats seem low so ok for now.

Just have regular PSA and at least yearly MRI 

Keep an eye on tumour size, over  4 years one of mine went from 3mm to 13mm at which point I started treatment.

Also to make sure tumour doesn't get near to the gland edge, another point at which u should probably think about treatment.

Best wishes 

Steve 

My husband was monitored for many years before AS became an acknowledged pathway and MRI scans were introduced into the pathway. He had regular PSA tests - each one with a slight uptick. He was told there would need to be something more once his PSA reached 10 - which it did in 2022. He was T3a N0M0 Gleason 4+3. We think he should have been referred back to urology a couple of years before this but, of course, that was when COVID was at its height and our GP practice was in a dire state. Nevertheless , he has still been treated with the intention to cure. I think we would feel more certain that cure had been achieved had treatment started earlier and he might have withstood the treatment better at a younger age? He had no symptoms whatsoever and even DRE was normal. Of course, we are all different and every cancer effects us all differently and behaves differently.

hth

I've been on AS for nearly 8 years.

• Hi Andy I have been on active surveillance for just over 4 years.. I was 44 years old when diagnosed gleason 6.. I totally understand your concerns I weighed up my options over treatment and it's side affects for my age .. I initially struggled with anxiety and my choice was to get some help with my anxiety over treatment,  do some research as I found out through my personal journey if you don't ask your NHS team they don't tell ..I think through my own research on active surveillance MRI is our best tool . Ask for yearly MRI .. my personal intention is to avoid treatment for as long as possible.. every visit for my results my nurse talks about having treatment the whole idea of active surveillance in my research is to avoid treatment and its side affects for as long as possible hope this helps please feel free to ask me any questions???

Hi BM

I notice your bit at the end where u talk about the nurse ,  I assume pushing u to have treatment, and I had the same issues, always pushing, in fact changed hospitals twice because of it.

Very important to keep on top of things though cos tumour size can suddenly increase so yearly MRI important.

i was on AS for 4 years in the end until the largest tumour got near to the capsule edge

Good luck

Steve

Hi Andy 

Not been on forum but looked today and saw your post, I  was also Gleason 6 and a very good consultant thought A/S was the best option for me, he was very against having any treatment at this time. 
 
I have been on A/S for 10 months with psa tests every 3 months actually had a test yesterday and awaiting result's 

Some find A/S hard but for me it’s not been a problem I just put it to the back of my mind and get on with my life and don’t worry about it.

Hope this helps and hope you get on ok  

Thought I’d update my progress on AS 

After having to see a consultant after my psa levels reached 10  have been on A/S for 10 months, the last one was 8.6. 
My consultant differed from what most seem to experience on hear  

Many times I’ve read that when given the options for treatment it’s entirely your choice , but the consultant I saw recommended strongly to go on A/S   
This was a great relief to me as I trusted this second consultant unlike the first one I saw

Anyway best wishes to everyone, and I must say this forum has been a big help to me, so thanks for all the support