Active surveillance support not the same anymore.

User

Posted 23 Apr 2026 at 11:43

Been on active surveillance since 2017 ,which included 6 monthly in person appointments. Over the years had 4 biopsies. The last one last year was close to 3 months before I got results with just a few minutes phone call.

PSA blood test results taken 2 months with just answer phone when calling the given number.

My point is has anyone else given up on active surveillance due to lack of support and had treatment .

I'm at this point now ,can't take the wait and lack of human contact to answer concerns.

User

Posted 23 Apr 2026 at 16:56

Hello, mate.

I'm sorry that you've had problems with your active surveillance, regarding poor communication of results.

However, I'm delighted to hear that you've gone nine years without having to resort to any radical treatment.

Long may it continue. 👍

I've often said, AS gets bad press on this forum. It refreshing to see that for some it is an effective option. They've obviously been monitoring you with follow up MRI scans, biopsies and PSA tests., it just a shame that getting the results has been problematic.

During your AS has your disease developed in anyway? Were the follow up biopsies purely routine or due to possible disease progression?

Edited by member 24 Apr 2026 at 09:14 | Reason: Additional text

User

Posted 25 Apr 2026 at 22:08

There is recognition that people are dropping off AS because the monitoring isn't "active" enough, and it's not consistent across the country with some hospitals good and others poor.

There's a project (I think by Prostate Cancer UK) to define a single common standard which hospitals should be offering.

You could ask for a face-to-face appointment, although some hospitals simply don't have enough clinic rooms to give everyone face-to-face appointments.

User

Posted 27 Apr 2026 at 12:15

Thanks for taking the time to reply.

I am going through changing hospitals with help from my GP to one that uses my chart app which makes seeing and finding results much easier .

User

Posted 27 Apr 2026 at 12:22

Thanks for taking the time to reply.

Biopsies plus mri every 2 years with 6 monthly psa.

The last Biopsie was September last year but now require another MRI and Biopsie due to raised psa been 24 ish for years just gone up to 29.9.

Finding the whole thing extremely stressful now with very long waiting times Finding out results along with no face to face contact.

So looking like it's time to start active treatment, it be a shame if I only do it because active surveillance isn't what it used to be .

Edited by member 27 Apr 2026 at 12:23 | Reason: Not specified

User

Posted 27 Apr 2026 at 12:35

Originally Posted by: Online Community Member

Biopsies plus mri every 2 years with 6 monthlThe last Biopsie was September last year but now require another MRI and Biopsie due to raised psa been 24 ish for years just gone up to 29.9.

Hi again.

You're a braver man than me, being on AS with a PSA in the mid twenties. Have you got an enlarged prostate or get regular prostatitis?

Whatever, you've obviously been deemed suitable for continued AS

Do you mind divulging your Gleason score and cancer staging from your last biopsy result?

Regarding PSA results I had enormous problems getting mine from the hospital but since having them done at my GP surgery. I get them myself the next day on their systmonline records.

Edited by member 27 Apr 2026 at 12:41 | Reason: Additional text

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