I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

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 !
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.

Show Most Thanked Posts
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 !
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.

User
Posted 31 Jan 2022 at 15:39

I have recently been diagnosed with PC,  Gleason 3+4 ,PSA 4.   It has been recommended to me to have a PSMA PET scan to see if the cancer has spread to my pelvic lymph nodes.

I live in Cornwall.  Does anyone have a list of centres where I can get a PSMA PET scan done?

User
Posted 31 Jan 2022 at 17:30

My husband was diagnosed with advanced PCa as the MRI & CT scan showed that the cancer had spread to his pelvic bone and lymph node (diagnosed by local MDT) we got a second opinion from The RM hospital and the MDT there disagreed about the bone. He had a 68 Gallium PSMA pet scan to be sure and this confirmed the spread to 1 lymph node but not the bone. This completely changed treatment options and he recently had RALP with removal of lymph nodes too. He’s not having anymore HT injections and as the others have said we will wait to see if PSA rises. Consultant said another PSMA pet scan wouldn’t be beneficial until PSA was 0.3 and that just had a 40% chance of picking up mets.

The scan itself he found to be ok. When he arrived they ordered the tracer and it arrived about half an hour later. They said he was fine to be around people but for 24 hours to avoid children and pregnant women.

All the very best

 

User
Posted 31 Jan 2022 at 21:54
Who has recommended that you have a PSMA scan - your medical team or some unqualified lay person? Generally, PSMA isn't the most useful type of scan at your stage; its main strength is in identifying mets at very low PSA readings when primary treatment has failed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Feb 2022 at 00:42
If it was your Consultant who recommended you have a PSMA scan, I would have thought that s/he would know your nearest facility offering a PSMA scan and will have referred you. London has about 6 centres and there are a few others in the UK, in major towns, though none that I am aware of near Cornwall or Devon. (I had mine at the Paul Strickland Scanner Centre). If you were not recommended by your Consultant to have have this scan, I would suggest you discuss the possibility with them before going ahead. You should be aware that about 8% of men fail to produce sufficient PSMA for the scan to work, also that the tracer in a significant number of cases fails to meet the required standard and another has to be prepared, sometimes on another day. Hospitals with the PSMA capability will sometimes do a PSMA on the NHS if referred by another hospital but otherwise do it privately.
Barry
User
Posted 01 Feb 2022 at 04:50

At age 74, Gleason 9 and psa 11, along with my initial diagnosis of prostate cancer, I had a PSMA PET scan which showed up some mets in glands near the prostate. Very useful as it meant I had the whole lot treated in one round of RT, almost certainly saving me from having to come back later for a second round of treatment. PSA shortly after RT .02, now 10 months later and continuing on ADT for at least 2 years, psa .01.

PSA 4 and Gleason 7 would probably call for some other good reasons to have a PSMA scan but mets can happen at quite low psa of course.

Proviso ... different country and slightly different types of treatment.

Jules

Edited by member 02 Feb 2022 at 03:59  | Reason: Not specified

User
Posted 01 Feb 2022 at 20:59
Hi Stew

I have been graced with not one but two PSMA PET scans ( with Ga68) The first one was done prior to RARP and showed that the cancer had not spread outside the capsule. Boy was I happy!

Post surgery my PSA was not as low as I ( and my surgeon) would have wished. We decided to see if things would level out. They didn't and my PSA rose inexorably. Once it reached 0.18 the onco called me in for another PSMA scan. This showed an 11mm tumour in one of my illiac lymph nodes. I went straight onto bicalutamide and Zoladex.

The recommendation was EBRT which I started 2 weeks ago. Today was session no 9. Thankfully I haven't run into any side-effects (yet).

User
Posted 02 Feb 2022 at 00:02
"Hi Stew

I have been graced with not one but two PSMA PET scans ( with Ga68) The first one was done prior to RARP and showed that the cancer had not spread outside the capsule. Boy was I happy!"

A good illustration of how PSMA may be more reliable at low readings post radical treatment than it is at diagnosis stage?

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

 
Forum Jump  
©2022 Prostate Cancer UK