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PSA Testing frequency

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User
Posted 02 Oct 2022 at 22:54

I was initially diagnosed with stage 3 (gleason=9) prostate cancer in January 2015.

I recieved Brachy, radiotherapy and two years if hormone treatment, which seemed to stabilise my condition.

Whilst under the care of my oncologist I had PSA tests every six months, I was discharged by my oncologist to be monitored by my GP, who decided that PSA tests every 12 months would be sufficient. 

I had a PSA test in September 2021 and it came back undetectable. 

I had the next PSA test in Septenber this year (2022) which came back with a result of 46.7, after having immediate tests and scans I've now been informed that the cancer has mastercised extensively throughout my skeleton and my lymph nodes.

If I was told once I was told a hundred times that prostate cancer progressed very slowly and nothing much was going to happen in the 12 months between my PSA tests; something that is quite obviously WRONG !!. 

So how can doctors be so misinformed and misinform their patients ?

 

User
Posted 02 Oct 2022 at 23:35

That is simply awful, not going to change your treatment now but I would want to see the actual test results 0.1 to 40 in 12 months is pretty unusual.

Edited by member 02 Oct 2022 at 23:37  | Reason: Not specified

User
Posted 03 Oct 2022 at 16:40

Hi Mike, so sorry to read this. That is a big jump in a year,  I know someone who went from undetectable to 7.4 in 6 months  so I wonder what their result would have been in a year. 
It reinforces the fact that all our cancers are different and one regime doesn’t suit all…..

Ido4

User
Posted 03 Oct 2022 at 17:48

That is a remarkably rapid rise. As Andy says, if it had been discovered earlier it would probably have made no difference to your treatment.

I guess the doctors work on averages and for 90% of the population this is a slow growing disease.

Dave

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User
Posted 02 Oct 2022 at 23:35

That is simply awful, not going to change your treatment now but I would want to see the actual test results 0.1 to 40 in 12 months is pretty unusual.

Edited by member 02 Oct 2022 at 23:37  | Reason: Not specified

User
Posted 02 Oct 2022 at 23:40

Hello Mike, really sorry to hear what's happened.

It is normal to switch to annual PSA tests at around 5 years if there's no evidence of disease, and there was no cause for concern a year ago. Even if you were tested more frequently and this had been found 6 months earlier, it's very unlikely to have made any difference to your treatment.

It's difficult to guess what's happened without a more detailed timeline. I'm guessing you finished radiotherapy in 2017, and your Testosterone might be assumed to have recovered in 2018 (was that ever checked?). Either there's been a recurrence in the prostate which has spread, or it had already spread before your original treatment (if there's currently no cancer in the prostate), but that wasn't detected at the time. If your Testosterone took a long time to recover, e.g. not until after last year's PSA test, that might help explain why it rose so quickly. What was your PSA at original diagnosis?

Edited by member 02 Oct 2022 at 23:43  | Reason: Not specified

User
Posted 03 Oct 2022 at 16:40

Hi Mike, so sorry to read this. That is a big jump in a year,  I know someone who went from undetectable to 7.4 in 6 months  so I wonder what their result would have been in a year. 
It reinforces the fact that all our cancers are different and one regime doesn’t suit all…..

Ido4

User
Posted 03 Oct 2022 at 17:48

That is a remarkably rapid rise. As Andy says, if it had been discovered earlier it would probably have made no difference to your treatment.

I guess the doctors work on averages and for 90% of the population this is a slow growing disease.

Dave

User
Posted 17 Oct 2022 at 23:27

Hi,

Thanks for your thoughts.

It may not have made any difference to the 'type' of treatment but, I could have Been treated earlier which would result in a better prognosis, I.e. a better time line.

My PSA when I was originally diagnosed was 3.7.

If 12 months is the norm after having low PSA tests for five years, then it's clearly something that needs to change. GPs gambling, and that's what it is (playing the odds) with mens lives is totally unacceptable and their approach needs to change.

When I was under the oncologist I had several full body MRI scans, which showed no metastases or at least they were unrecorded if there was any.

I also had PSA tests every six months.

In any event if the metastases was there and not picked up or the low PSA readings were spurious, then something in the system is flawed and needs to be reviewed/changed.

User
Posted 18 Oct 2022 at 00:00

My latests scans about 2 weeks ago showed I have tumours in my legs, hip, pelvis, ribs, shoulder, head and lymphs. So it's either spread lightening fast in 12 months or it wasn't picked up.

User
Posted 18 Oct 2022 at 12:57
Seems more likely that you had extensive micromets- too small to be seen on scans and sitting inactive for a period of time. Horrible situation for you but quite rare and would not have made any difference to the treatment pathway even if it had been picked up sooner as the only treatment pathway for micromets is systemic
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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