active surveillance

Hi JJ

I was on AS for 4 years from 2013.

It was relatively easy but U do need to ensure u have PSA every 3 months and MRI yearly to monitor properly.

I did find they kept trying to push me into treatment, obviously not happy about that.

The only thing I would say looking back , as the Radiotherapy was easy why bother waiting under AS.

If I was going for surgery though probably would have gone on AS cos of more potential issues/side effects 

See what others say

Good luck

Steve 

Hi Steve, 

Thanks for replying so quickly. 

Before joining the Macmillan website and going on the forums, I was under the impression that treatment wasn't always the outcome for prostate cancer and that the cancer might not get any worse. 

You mentioned that you were on AS for 4 years, did you condition worsen and that you had to have Radiotherapy.

Radiotherapy isn't something that is being offered me because of my age, they say that i'm too young

That's  a fair comment, yes in some ways better to wait I suppose in case treatment not needed for many many years.

But I had 2 tumours and the largest grew from 3mm to 13,mm over the 4 years.

At that point it was near the gland edge so I had to do something.

Def worth u checking your tumour size and monitoring for growth.

I assume u are Gleeson 3+3, also PSA under 10?

Steve 

my Gleeson score is 3+4 and my PSA is 15.6 with PSA density of 0.12. Prostate is 121cc if that makes any sense to you

It does so not the lowest of the low.

I think u should find out what the tumour size is in mm, that should show on the MRI report which u can request.

PSA bit more than I thought it would be, do u know how much it's gone up over the years, think u have been monitoring that for some time?

Steve 

I know the PSA has gone up over the years. It was high to start with (I've been monitored for 4-5 years). I have heard them say it has doubled.

I will ask for my MRI report 

Hello Jumping Jack . AS is being offered more often now to men with intermediate risk prostate cancer so I thought I would look at the statistics on how likely they are to progress to needing treatment and over what timescale. In order for you to make a judgement call you need to understand how many of your biopsy cores came back as positive and what % length of the core was involved, as well as whether there were any adverse comments like cribriform pathology. Your PSA already guides that you are in a higher risk group of progression within the next 5 years. You have a very large prostate which could impact your urine flow - has anyone mentioned the possibility of reducing its size? The position of the lesion can also impact the likelihood of progression and risk of developing metastases so the MRI is important. Age plays a part - the younger you are when first diagnosed then the more likely you are going to need some radical treatment to deal with the cancer. Have a read of this article as it might give you some pointers as to what questions to ask based on your circumstances.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11034964/

My husband was on AS for many years from 2010 but has been battling stage 4 prostate cancer for the last 4+years. OK he does have a rare form but it is a cautionary tale that you have to be vigilant in having regular tests.

Ok JJ,  some interesting points made by Always hope as well.

You haven't mentioned staging which is normally 1-4, I assume that yours is  contained within the gland and not spread elsewhere?

So , stage 1 or 2 which is ok.

Just make sure u keep your eye on it and come back if u need more advice 

Steve 

An interesting conversation so far.  Good that Jumping Jack  has been monitored for years.  No trouble with urination?   Two points of interest:  1. The large size of the prostate gland. 2. The PSA doubling time. 
I note that AS is only one of the options that’s been given.  I think that I would be pushing for some kind of treatment, even if the size of the prostate isn’t currently causing any problems.    AS

Hi Alwayshope - I hadn’t realised that your husband had been on AS for years before his Stage 4 PCa.  If you had the time again, would you have played the cards differently?     AW