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Recurring cancer

User
Posted 25 Apr 2018 at 14:58

Hi everyone/anyone - I am new to the forum.

My husband has recurring prostate cancer after radical prostatectomy followed by radiotherapy some years ago.  He has had 2 Choline PET scans and they cannot pinpoint where the cancer is.  Therefore, he is not receiving any treatment!!!!

He requested a PMSA PET scan which has better diagnostic results, but our local NHS hospital does not offer this scan & has suggested we pay £3,000 to have it done.

How can they tell someone they have cancer again and because they cannot find where it is specifically, not offer any further tests or treatment.

Is there another avenue we can try??

User
Posted 25 Apr 2018 at 17:27

CarerPM, we are very short of information about your husband's diagnosis which makes offering any advice problematic. I assume he has a rising PSA (at what rate of growth?) and the suspicion must be that he has micromets in his body, too small to show in the PET scan. They might show up in the more accurate PSMA scan, but might not. So much depends on where the PCa is, single or multiple locations. If this can be clarified then treatment options like chemotherapy, abiraterone and so on become possibilities.

AC

User
Posted 25 Apr 2018 at 17:45

Hi , you should maybe click my picture and read my profile. I had surgery and awful post op results — so awful they suggested RT would be useless so I declined it 3 times. I have had a Choline PET and a PSME PET but neither have shown anything. My psa is now greater than 24 and I’ve just had a CT and Bine scan. Still nothing !!! I’m on zero treatment and actually happy with that as I’m living a fully normal recovered life. They will act when scans reveal something or my psa doubling changes , or if I feel ill to be honest. I’m grateful for the time I’ve had living life to the full , but am aware it could all go downhill. I’ll face that head on when I need to

If life gives you lemons , then make lemonade

User
Posted 25 Apr 2018 at 20:28

A number of hospitals are pushing for PSMA scans for NHS patients but these have not yet been approved. I was due to have one privately circa £2,400 last Saturday but the machine that makes the tracer (Gallium 68) unfortunately broke the day before so I have been rescheduled. I was told that there is only one supplier of tracer which serves the few London Hospitals who currently do this scan and there is presently no alternative source of supply. Due to the short half life of the tracer, the 'Generator' has to be not far from where it is to be used. It is inevitable that when the scan is approved for NHS patients, the demand will be such that more 'Generators' will be introduced with less chance of abortive attendances. Unfortunately, although the scan is designed specifically for PCa, 5-10% of men are unsuitable.

When I sought estimates for this scan last November, UCLH in London gave the lowest price at £2,200 but I don't know whether this is still applicable.

Meanwhile, has your husband not even been offered Hormone Therapy as a systemic treatment?

Barry
User
Posted 26 Apr 2018 at 19:03

a bit more info would help - what is his PSA level now and is he on hormone treatment?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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