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 20 Jul 2025 at 08:27

The scans were absolutely fine. I paid for both of them £2700 per scan and report is the going rate at Leeds. My own treatment centre in Hull does them but long waits and hard to get.

My 1st one was after my initial MRI with contrast which staged my cancer. Fortunately the PSMA PET correlated with the MRI and did not show any other cancer uptake. They call it ‘tracer avid uptake’. I then had chemo and paid for another before my radiotherapy started to help them target it as accurately as possible. My Onco didnt feel it was necessary but hey, he’s not living with G9 with spread!

In terms of having the scan there’s no difference as the patient to an MRI or bone scan with contrast except the nurse comes into the room with tracer injection in a lead lined box with a key looking rather nervous!! I had my 2nd scan cancelled as I was driving to Leeds as the tracer wasn’t stable enough. Apparently this happens. No bother just happy to have access to it.

I think you’re absolutely right about every 2 years and not 1 year with scans. I think I just want to be over imaged to pick anything up as early as possible!

User

Posted 20 Jul 2025 at 00:21

Hi Darren

How did you find having the pet scans? We can't even have them here in Gloucestershire - no scanner!

I thought if I had to pay for a scan I'd pay for the most accurate, IE the psma pet scan, rather than the usual MRI/CT. Whilst it might not be very good for people with low PSA, I thought it would be good to use it to establish whether I'd be suitable for lutetium 177 when the apalutamide eventually fails, as this sounds a far more targeted treatment than blasting your whole body with chemo!

I don't know whether we need annual scans with undetectable levels of PSA, but I certainly think the oncos should be checking us every two years at least. Relying on PSA only just seems to be a cost saving measure.

User

Posted 20 Jul 2025 at 01:23

Originally Posted by: Online Community Member

How did you find having the pet scans? We can't even have them here in Gloucestershire - no scanner!

Having a PSMA PET scan is simple and painless. For me, at the start of the "journey" it picked up 3 lymph node mets which were then able to be targeted during my RT [G9, locally advanced]. CT before that had picked up nothing and the MRI had been indeterminate.

These scans are on the hard to get list, largely because the radioactive marker dye they use is in limited supply. It also has a limited life, or should that be half life? They're expensive, so I suspect that the cost might be limiting the supply, particularly if the NHS is paying.

Jules

User

Posted 30 Jul 2025 at 17:38

My OH who was diagnosed nearly 10 yrs ago ,PSA23 Gleason 4+5 spread to lymph nodes. He had an mri and bone scan to determine if he had cancer and one at the end of his chemo 5 months later and that is it ! He’s always been told that as his PSA is still undetectable there’s no need to.

Best wishes

Debby

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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

User

Posted 18 Jul 2025 at 16:49

Hi, my husband has just had a scan of his chest, abdomen and Pelvis.

He is taking Apalutamide, his PSA is 0.01. He has Gynecomastia in his breast, caused by the treatment.

They did a chest X-Ray and it showed prominence in the Hilar region, so wanted to follow up with a CT scan.

He hasn't been scanned for 4 years. Fingers crossed it's all clear.

User

Posted 19 Jul 2025 at 16:25

Hi Lillie1

I hope your OH scan is ok!

Four years before a scan seems excessive - and here's me worrying at two years! The hope for the best, because scans cost money, situation seems to be fairly common across the country. Even if studies show cancer can progress without a PSA rise!

User

Posted 19 Jul 2025 at 22:35

Hi John, I’m 18 months post diagnosis and last PSA <.05 the lowest it’s been, so as good as it gets post radio/chemo with ongoing prostap injections.

I’ve had 2 x PSMA PET in Leeds and gave little thought to the possible side effects given their amazing diagnostic utility. I used them to help guide my treatment and push for radiotherapy outside the usual standard treatment along with a 2nd opinion from the Royal Marsden.

Worth noting that apparently the lower the PSA the less sensitive PSMA PET is supposed to be. I absolutely share your concerns RE ongoing monitoring. I think for my own reassurance I would want imaging at least annually in addition to the 3 month PSA. Not sure my Oncologist would agree but I’ve read the literature as well on potential for reoccurrence despite undetectable PSA. I’d want to push for a CT chest, thorax and abdo as well as a bone scan given my bone mets. I’d be ok not having PSMA PET with such a low PSA.

User

Posted 20 Jul 2025 at 00:21

Hi Darren

How did you find having the pet scans? We can't even have them here in Gloucestershire - no scanner!

User

Posted 20 Jul 2025 at 01:23

Originally Posted by: Online Community Member

How did you find having the pet scans? We can't even have them here in Gloucestershire - no scanner!

Jules

User

Posted 20 Jul 2025 at 08:27

The scans were absolutely fine. I paid for both of them £2700 per scan and report is the going rate at Leeds. My own treatment centre in Hull does them but long waits and hard to get.

I think you’re absolutely right about every 2 years and not 1 year with scans. I think I just want to be over imaged to pick anything up as early as possible!

User

Posted 30 Jul 2025 at 13:51

Hi there, just wanted to let you know that my husband's scan was all clear :)

User

Posted 30 Jul 2025 at 17:38

Best wishes

Debby

User

Posted 30 Jul 2025 at 19:20

Originally Posted by: Online Community Member

Hi there, just wanted to let you know that my husband's scan was all clear :)

That's great to hear!

User

Posted 01 Aug 2025 at 19:24

I think the frequency of scans may be down to a person's histology and stability of PSA, changes of the latter being more accurate to establish development than when used originally as a diagnostic tool. Scans can be more frequent if patient is taking part in a trial. I paid for my PSMA scan because it was at a time when it was still very difficult to get one on the NHS. So, I got prices from the London and near London Hospitals/ Centre that provided it. The Royal Marsden quoted most but one of the lowest where I went was the Paul Strickland Scanner Centre located in the grounds of Mount Vernon Hospital. Indeed, it was a consultant at Mount Vernon Hospital who first gave an opinion on the scan. This was some time ago and prices charged have probably changed and it is more easy to get this scan on the NHS now if considered helpful, although a patient might have to travel to where they can be given.

I had an MRI after my HIFU 12 monthly for two years but the last being clear and with low and stable PSA, it has now done every two years with PSA checks extended from 4 to 6 month intervals.

Barry

User

Posted 11 Aug 2025 at 17:28

Just updating my last response on this thread. Spoke to my oncologist via phone last week and he’s happy to be guided by PSA for any spread but also suggested scanning me annually. He suggested CT chest, thorax abdo. He explained this was because of the G9 with limited mets to local bone.

So there we go, I thought it would be every 2 years?No mention PSMA PET which I understand given undetectable PSA presently.

User

Posted 12 Aug 2025 at 09:59

Thanks for the update Darren.

It just demonstrates that we don't really have a "national" health service! Different NHS trusts seem to be doing their own thing. Some scanning regularly and others just crossing their fingers and purely relying on PSA! It surely can't be right to just let things ride for years, especially when several studies have shown radiological cancer progression without a change in PSA level?

Perhaps this is something Prostate Cancer UK could work on with N.I.C.E. ?

User

Posted 12 Aug 2025 at 18:46

Yes agreed. Huge variance in practice. Need for parity of care. Hugely grateful to the NHS for my care, would be great if there was equity/ similar clinical reasoning around monitoring.

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