Active Surveillance Worries

Hi Gary, 

Are you due anther MRI as apart of your active surveillance monitoring?

What age are you?

Your PSA does seem a bit high. Have you got any other prostate related conditions?

You have got a very large prostate and this could account for the higher PSA. Your rise and fall in PSA may be linked to other prostate conditions. Your Gleason 6, is low. If your cancer is  safely contained within the prostate and I were you, I'd happily continue on AS. However I would be requesting another MRI to confirm size and location of the tumour. Ultimately the decision is yours.

Hi Gary,

I'm not sure what NICE guidelines are for follow up MRIs but our site states:

You should have an MRI scan when you first go on active surveillance to make sure your cancer hasn’t spread outside the prostate. You may then have regular MRI scans, although this will depend on your hospital. Your doctor may also suggest having an MRI scan if your PSA test or DRE results suggest your cancer might be growing. The scan can help your doctor decide if you need a biopsy. Read more about MRI scans.

It might be worth asking for one?

When I had the template biopsy when they found the cancer which was September 2022 for some reason they did not call me face to face to give me this result until  feb 2023, about 3 months before the biopsy I had just had a choline pet scan so they did not offer me another mri at that time I had already had two mri’s, But since that September 2022 biopsy I’ve have had noting apart from a psa every 3 months this jump to 14.3 and back down to 12.6 is the only change that’s happened in that time but I will be pushing for another scan. I had to push for this earlier telephone consultation as it is I was not book to have this appointment until October so it seems they were happy to just watch my psa only which is a bit worrying.

Personally my view is AS can be quite risky based on two things… 1) ~44% of PCa tend to be upgraded on histology 2) grade 3 cells (Gleason 6 (3+3)) are fundamentally cancer cells and have the capability to metastasise.

Biopsy diagnosed me as Gleason 6 in all four quadrants. My local team advised no rush and maybe AS was an option. I took a different view and got a second opinion from a leading Prof in the field. During surgery NeuroSAFE showed that the cancer was more extensive (Gleason 7 (4+3)) than shown on 3T MRI and biopsy. Thankfully only just still contained in the prostate capsule.

In my consultants words…had I waited much longer the outcome could have been very different. I am now 4.5yrs with PSA undetectable 🤞 

Plus even the UCLH leading guys are now saying biopsies tend to set up an environment for micromets : https://youtu.be/0toibiLXRjs?si=Xv1Gsc4C-hAaKEYY

Edited by member 19 May 2024 at 09:44  | Reason: Not specified

Yes, took about 4yrs of PSAs kicking around for me between 4-4.7. Before it started to move higher (5.6) which led to biopsy. The stats are good but I think they miss a lot of longer term data as folks drop out of studies for various reasons. I suspect if I’d have left it and it went T3 I’d probably have 15yrs or so but a less pleasant journey of hormone treatments following by RT/chemo. My goal was to buy myself at minimum quality time until next gen immunotherapy treatments come online. My ex works in this field so I’m definitely one of those patients doctors bite their tongue with 🤪😵‍💫🫢 

Our site mentions this ProtecT trial. It showed that there was virtually no difference in the outcomes of surgery, RT/HT or active surveillance, for men with low grade cancer.

I shall add a link

https://prostatecanceruk.org/about-us/projects/active-surveillance#:~:text=Active%20surveillance-,A%20bit%20of%20background,way%20prostate%20cancer%20is%20diagnosed.

My AS was a failure.

Dec 2020 diagnosed Gleason 6 (3+3) only 2 out of 15 cores, less than 10% cancerous, PSA 5, T2a.

18 months later, PSA 6.6, Gleason 9 (4+5), 20 out of 24 cores, all over 40% cancerous, capsule breached T3a. 

If anyone should be heeding caution about AS its me. However, like any treatment/or radical treatment option taken, there will be a wide range of individual outcomes. It would be foolhardy and unfair of me to warn against AS because it failed me, if generally it's been proved an effective treatment option for thousands of men.

What I would advise,  is when on AS  ensure you are being actively monitored. I wasn't.

Edited by member 19 May 2024 at 19:36  | Reason: Add link

Hi Gary,

Thanks for the update mate.

Best luck with your future PSA results.