AS Active Surveillance

User

Posted 30 Aug 2026 at 17:38

I Have just stopped treatment and am on AS.

Anyone else in this position and looking for more than just one MRI and 3/4 PSA tests per annum which I find to be passive rather than active.

Specifically: any one getting more than this or with experience of paying for MRI's or Blood tests?

Love to interact with anyone else on the same path.

User

Posted 30 Aug 2026 at 19:42

You say you have just stopped treatment, was this RT and why did you stop to favour AS? I've been on AS for the past four years and can tell you that PSA tests every three/four months in the first year or so and annual MRI scans are more than adequate to monitor your 3+4 prostate cancer. Of course, if you want a scan more frequently it's absolutely possible to pay for one privately, but that should only be necessary if your PSA tests show a rising trend and you'd get it on the NHS.

User

Posted 30 Aug 2026 at 20:30

Long story but In the end at nearly 80 I was unwilling to follow the treatment path offered. ADT, TURPS, Radiotherapy, and was not accepted for focal treatment elsewhere. As far as I was concerned the risks outweighed the benefits. I want to stay healthy, look after my wife, enjoy the family and have a good quality of life in my remaining years. If it was just the RT and I was younger I may have had RT alone as my two younger brothers have. But the stats show that RT, prostatectomy and 'do nothing' have virtually the same life expectancy, but do nothing does not have the risk of poor outcomes from treatment let alone having TURPS as well (which did not go well for my father 25 years ago).

In addition to this they started me on ADT. It was horrendous especially the depression and I had all the other symptoms expected. I am still not sleeping properly and am having cramps and problems with my arms and legs. I pray these abate as time goes by.

I am attempting adjunctive treatment to slow the progress of the PC and I want to see if I am succeeding but there is little support for this either inside or outside of the NHS here in the UK. I have had two MRI's (not sure why) but I will want to see if my lesions are stable or progressing in the future in order to assess the effectiveness of what I am doing.

I would love to hear that your PC has remained stable and encapsulated.

Edited by member 30 Aug 2026 at 20:35 | Reason: Not specified

User

Posted 30 Aug 2026 at 22:07

It would be useful to know what your diagnosis is.

Your treatment would be Watchful Waiting, not Active Surveillance. Active Surveillance is not something you can stay on if you need treatment to prevent progression. Watchful Waiting is what you are on if you decide not to have treatment (or can't have treatment for other reasons), but still want some monitoring and treatment of symptoms if they crop up, and the option to have treatment in the future if things change.

Something you might consider would be to go on to just Bicalutamide as a hormone therapy. That has fewer side effects then the full hormone therapies (injections or Relugolix). Also, it's bone strengthening (when used by itself) rather than bone weakening. It will also shrink your prostate, possibly removing the need for a TURP. The down side is that it doesn't work for as long as injections or Relugolix, and you probably also want to be on a low dose of Tamoxifen to prevent the Bicaluatanide causing breast gland pain/sensitivity and growth.

It would be nice if Enzalutamide, Darolutamide, and Apalutamide could be made available by themselves. Enzalutamide has been trialed and works well, the others haven't been trialed this way yet as far as I know, but none are licenced for use in this way in the UK. They would work for much longer than Bicalutamide, and Darolutamide, being too large a molecule to pass through the blood/brain barrier, might have even fewer side effects (but might also struggle to get through the blood/prostate barrier, so that specifically would need testing). These would also need the low dose Tamoxifen.

User

Posted 30 Aug 2026 at 22:35

Hi,

If you could provide details concerning your Diagnosis and histology it would be helpful.

I can understand your reasoning for not wanting HT because of the side effects but am not sure whether you have asked whether you could just have the RT or want it if offered. Either way, your having an MRI once a year and PSA test 3 or 4 times a year is pretty standard. Should PSA begin to increase in the interim, you will most likely be invited to have the MRI brought forward. You can of course have a PSA done privately, although it is said to be more relevant if done by the same lab as your other PSA's. Likewise, you can pay for an-additional MRI scan. (A multi parametric one is better).

You say that you are having adjunctive treatment but not ADT now. So is this some non medically approved herb or what?

Barry

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