How often should you be scanned for cancer development?

User

Posted 01 Jul 2025 at 22:32

I was diagnosed with advanced prostate cancer back in February 2022 and went through the usual rounds of CT scans, MRI and bone scans. This led to treatment with orchidectomy and apalutamide. About a year later I had another MRI which showed my Mets were smaller. All good news so far.

Fast forward 2 years the only monitoring of my cancer has been 3 monthly PSA levels (and a few other levels they monitor if you're on apalutamide). I've been lucky my PSA is still undetectable <0.1. However, every now and then I get two or three days of aches and pains in my Mets sites. I mentioned this to my oncologist as it was worrying me and wondered whether a scan might be useful? I've been told I don't qualify for any new scans as my PSA is good and I'm not in constant, new or increasing pain ( IE the cancer isn't running riot!).

We are constantly told PSA isn't good enough to be used as a screening measure, but it seems to be the main indicator when you have cancer?!?🤔. I noticed in the analysis of the ARCHES study - https://www.asco.org/abstracts-presentations/ABSTRACT368820 that over 50% of the participants had radiological progression without PSA rise! I've mentioned this to my oncologist, but this doesn't make any difference to their scanning criteria.

So I'm now in the situation that I either wait until things get dramatically worse with my cancer, or choose to get a scan done privately to ease my fears/confirm that everything is actually ok. I'm thinking of going for a gallium 68 psma pet scan, despite my very low PSA, as it seems to be the most accurate test, Gloucestershire couldn't do it anyway as they don't have a scanner and has it might indicate future lutetium 177 treatment suitability.

What are your experiences with scans to check on progression? Are you on the same situation? Shouldn't we be checked at least every couple of years? Would you/have you gone for a private scan?

User

Posted 02 Jul 2025 at 06:16

A PSMA scan may or may not light up like a Xmas tree but it won't change your treatment and won't tell you anything re progression because you haven't had one before to compare.

If you want a PSMA baseline for future use it might be worth it BUT they are not risk free.

User

Posted 02 Jul 2025 at 07:18

Originally Posted by: Online Community Member

I noticed in the analysis of the ARCHES study - https://www.asco.org/abstracts-presentations/ABSTRACT368820 that over 50% of the participants had radiological progression without PSA rise!

Hi, John.

Good to see you again. I've often wondered how you were getting on.

Is the research you posted, the same as this?

https://pubmed.ncbi.nlm.nih.gov/38688767/

[Patient summary: In patients who have metastatic castration-sensitive prostate cancer (mCSPC) and are being treated with apalutamide, radiographic images may show cancer progression even if prostate-specific antigen tests indicate no change. This highlights the importance of regular imaging when using apalutamide to manage mCSPC.]

Edited by member 02 Jul 2025 at 07:35 | Reason: Add link

User

Posted 02 Jul 2025 at 08:18

I'm on a trial,because of this I have mri scans and full body x-rays done every 8 weeks.My trial oncologist and my nhs oncologist are miles apart when it comes to there attitude with my condition.

The team on the trial at the royal Marsden base there evidence on test results,psa and asking how I feel.

My future lies at the royal Marsden as my local nhs hospital as nothing else to offer me to fight the cancer other than radiotherapy.

My last PSA result was around 170 but my QOL is good,I tend not to get hooked on my PSA,I think the lowest its been in 3 years is about 9,my oncologist has always said not to get hooked on numbers but on how your feeling.

Regards Phil

User

Posted 02 Jul 2025 at 10:21

Originally Posted by: Online Community Member

I noticed in the analysis of the ARCHES study - https://www.asco.org/abstracts-presentations/ABSTRACT368820 that over 50% of the participants had radiological progression without PSA rise!

Hi, John.

Good to see you again. I've often wondered how you were getting on.

Is the research you posted, the same as this?

https://pubmed.ncbi.nlm.nih.gov/38688767/

No, the survey I'd found related to enzalutamide. However, this is in the same family of drugs as apalutamide, so it's not surprising that they're finding the same results.

So if there is this 50% plus discrepancy, why are just relying on PSA? If the cancer has secretly started developing, surely you would want to consider further/different treatment options before it gets to the stage of seriously damaging your health?

User

Posted 02 Jul 2025 at 10:26

Originally Posted by: Online Community Member

PSA following treatment is still the best indicator of progression for cancers that produce PSA (Dr Sholtz). For a guy in your position <0.1 is as good as it gets especially when traditional scans support this.

A PSMA scan may or may not light up like a Xmas tree but it won't change your treatment and won't tell you anything re progression because you haven't had one before to compare.

If you want a PSMA baseline for future use it might be worth it BUT they are not risk free.

However, if a psma lights up in areas where mets have not been detected in the past, this might indicate development worthy of investigation surely?

I haven't heard of many risks from these PET scans, other than it adding to your lifetime load of radiation. What else are you referring to?

User

Posted 02 Jul 2025 at 17:44

When I had my PSMA PET is was a pretty big disclaimer I had to sign! So yes the risks are manageable but they are still there.

I think you have to ask how it will change your treatment? If they will zap everything it finds then yes it's worth doing but if it doesn't change anything then maybe it's best to focus on that <0.1?

User

Posted 07 Jul 2025 at 18:48

Hi John,

I was happily going along at just over 3 years of HT and an undetectable PSA, with just the side effects to contend with.

Hadn't spoken to my Onco for 2 years (only his deputy) when out of the blue he rang me and said I should have an MRI to check status and booked me in.

In the end it turned out to be a CT Scan and the results were hugely encouraging (see Bio), but the short answer to your question is, in my case, it was about 3.5 years.

Good luck mate

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