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Anyone had a PSMA PET-CT scan?

User
Posted 21 Jun 2021 at 15:35

Routine call from Oncology today to discuss treatment. Still some concerns about the odd cancer cells floating about in my prostate, so they want to try a new treatment regime. I'm to come off the hormone treatment (hopefully off the sweats as well) and see what happens to my PSA without it. Currently 0.5. If it goes up in the next 12 weeks they'll let me have a go on a new bit of kit they've got which is a specialist PSMA PET-CT scan. Result of that would determine the next treatment regime. If not, then they might return me to the hormones just to keep things ticking along. Meanwhile, bloods are all ok apart from my usual high-ish cholesterol.

Anyone had experience of PSMA PET-CT scan and outcomes? 

User
Posted 21 Jun 2021 at 16:03
Hi , read my profile maybe ( bit long ). My post op psa 6 yrs ago was 1.5. Nothing on scans. Refused all SRT and did a bit of Bicalutamide HT for 11 months. They then decided like you to let my PSA rise so I could have both choline PET and PSMA PET. My psa at PSMA was 3. Both scans showed nothing. Given that I hated the disease and treatments and had recovered from surgery really successfully at 47 , they decided not to force treatment on something that was obviously there but not showing. I’ve had a great time. Now at 6 yrs post op my psa had risen to 990 and tumours in spine and ribs and distant lymph nodes, so I’m on injectableHT and responding well. I wish you luck. I’m glad I’ve not spent this last 6 yrs in all sorts of treatments and feeling rough. You have to be in control !

If life gives you lemons , then make lemonade

User
Posted 21 Jun 2021 at 16:25

Thanks for the info Chris. 

I read your profile, you're certainly going through it, but very positive. 

Take care. 

User
Posted 22 Jun 2021 at 00:42
About 8% of men express insufficient PSMA for the scan to work and it seems Chris was one of them.

The PSMA scan is very similar to having an MRI scan in my experience. although you wait for your individually produced nuclear injection which comes in a specially protected syringe, (which I think in turn is inside a box to contain radiation). After the scan I was told to keep away from people for a couple of hours and then for another four hours to not get close to children or pregnant women. It seems different centres give slightly different directions regarding timing. There was nothing else of significance that I can remember.

Prior to the PSMA scan, I had a Choline scan, which led to UCLH concluding I had cancer in an Iliac Lymph node due to an amount of Choline uptake. However, I wanted other opinions on this so contacted 2 other hospitals in the UK and the hospital where I had my RT in Heidelberg back in 2008. All believed it was unlikely that the node was affected by cancer. Heidelberg compared the copy of the Choline scan with the MRI's they had previously done and said the size and shape of the nodes had not changed. They suggested I have a 68 Gallium PSMA scan (which incidentally was formulated in Heidelberg in conjunction with the DKFZ there). Unfortunately, UCLH would not give me this scan on the NHS so I paid for one privately at the Paul Strickland Scanner Centre. There was no sign of any uptake in the aforementioned node, although a small tumour in the Prostate. This was very important because if the node had been affected I would have to rely on systemic treatment. UCLH would not offer more focal treatment if the node had been affected. So the PSMA scan, which I copied to UCLH could well have changed treatment options. I am now awaiting the result of a biopsy to check whether another HIFU treatment would be appropriate.

It is the case that sometimes cancer cells can be too few and or dispersed to be seen on a PSMA scan but the chance of finding tumours increases with higher PSA in patients expressing sufficient PSMA.

Barry
User
Posted 23 Jun 2021 at 07:45

Hello Stew,

I'm coming off hormone therapy now. I'm having 3-monthly PSA and testosterone tests. At 4 months after the last hormone therapy jab ran out, testosterone was still 0.2 (i.e. nothing), and PSA also same as when I was on hormone therapy. I'm now 6 months after last hormone therapy jab ran out and a few weeks off my next PSA+testosterone test. I am suspecting I may have some more testosterone now - getting the occasional unplanned erection, but we'll find out in a few weeks.

So really just to say, I doubt anything will happen in 12 weeks - probably need to wait at least 6-9 months to start seeing an effect, but also I think you have to get testosterone added to your PSA tests to make sense of them while coming off hormone therapy, particularly in your case where you are specifically looking for how PSA responds to testosterone returning.

Wishing you all the best.

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User
Posted 21 Jun 2021 at 16:03
Hi , read my profile maybe ( bit long ). My post op psa 6 yrs ago was 1.5. Nothing on scans. Refused all SRT and did a bit of Bicalutamide HT for 11 months. They then decided like you to let my PSA rise so I could have both choline PET and PSMA PET. My psa at PSMA was 3. Both scans showed nothing. Given that I hated the disease and treatments and had recovered from surgery really successfully at 47 , they decided not to force treatment on something that was obviously there but not showing. I’ve had a great time. Now at 6 yrs post op my psa had risen to 990 and tumours in spine and ribs and distant lymph nodes, so I’m on injectableHT and responding well. I wish you luck. I’m glad I’ve not spent this last 6 yrs in all sorts of treatments and feeling rough. You have to be in control !

If life gives you lemons , then make lemonade

User
Posted 21 Jun 2021 at 16:25

Thanks for the info Chris. 

I read your profile, you're certainly going through it, but very positive. 

Take care. 

User
Posted 22 Jun 2021 at 00:42
About 8% of men express insufficient PSMA for the scan to work and it seems Chris was one of them.

The PSMA scan is very similar to having an MRI scan in my experience. although you wait for your individually produced nuclear injection which comes in a specially protected syringe, (which I think in turn is inside a box to contain radiation). After the scan I was told to keep away from people for a couple of hours and then for another four hours to not get close to children or pregnant women. It seems different centres give slightly different directions regarding timing. There was nothing else of significance that I can remember.

Prior to the PSMA scan, I had a Choline scan, which led to UCLH concluding I had cancer in an Iliac Lymph node due to an amount of Choline uptake. However, I wanted other opinions on this so contacted 2 other hospitals in the UK and the hospital where I had my RT in Heidelberg back in 2008. All believed it was unlikely that the node was affected by cancer. Heidelberg compared the copy of the Choline scan with the MRI's they had previously done and said the size and shape of the nodes had not changed. They suggested I have a 68 Gallium PSMA scan (which incidentally was formulated in Heidelberg in conjunction with the DKFZ there). Unfortunately, UCLH would not give me this scan on the NHS so I paid for one privately at the Paul Strickland Scanner Centre. There was no sign of any uptake in the aforementioned node, although a small tumour in the Prostate. This was very important because if the node had been affected I would have to rely on systemic treatment. UCLH would not offer more focal treatment if the node had been affected. So the PSMA scan, which I copied to UCLH could well have changed treatment options. I am now awaiting the result of a biopsy to check whether another HIFU treatment would be appropriate.

It is the case that sometimes cancer cells can be too few and or dispersed to be seen on a PSMA scan but the chance of finding tumours increases with higher PSA in patients expressing sufficient PSMA.

Barry
User
Posted 23 Jun 2021 at 07:45

Hello Stew,

I'm coming off hormone therapy now. I'm having 3-monthly PSA and testosterone tests. At 4 months after the last hormone therapy jab ran out, testosterone was still 0.2 (i.e. nothing), and PSA also same as when I was on hormone therapy. I'm now 6 months after last hormone therapy jab ran out and a few weeks off my next PSA+testosterone test. I am suspecting I may have some more testosterone now - getting the occasional unplanned erection, but we'll find out in a few weeks.

So really just to say, I doubt anything will happen in 12 weeks - probably need to wait at least 6-9 months to start seeing an effect, but also I think you have to get testosterone added to your PSA tests to make sense of them while coming off hormone therapy, particularly in your case where you are specifically looking for how PSA responds to testosterone returning.

Wishing you all the best.

 
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