PSMA scan for PSA of 0.023?

User

Posted 31 Jan 2018 at 22:56

I am sure many of us will be interested in learning how it works out for you.

Barry

User

Posted 01 Feb 2018 at 07:42

Well no-one more interested than me. I really have my doubts about this as you know. Not the scan technology but the seemingly terrible difficulty getting the tracer produced right at exactly the right time. I’ve had two PET scans but four last minute cancellations. My psa was 3 for the PSMA PET scan and it didn’t even pick up my known margins at the bladder neck .... work that one out. I’ve just been given my dates mid March for two more scans. My psa will be 24. They would not offer PET , but merely Bone and full body CT. He reckons that will be enough GULP
Best luck my friend

If life gives you lemons , then make lemonade

User

Posted 01 Feb 2018 at 16:37

I could have had a choline pet scan or try for this PSMA scan. It's funny, though. Either way, I don't win. If the scan is clear, there's always the doubt that it missed something. If it finds something, that's hardly brilliant news. Nonetheless, I've made the decision to proceed. Maybe I'll be making a small contribution to medical science.

Ulsterman

User

Posted 01 Feb 2018 at 18:11

Good luck Ulsterman,

My experience of the PSMA Pet scan at the London Clinic is that they are very efficient and professional. You will be in good hands.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 01 Feb 2018 at 21:57

Dave

Glad you told me about the London Clinic - my oncologist hasn't ever referred anyone there before.

Ulsterman

User

Posted 01 Feb 2018 at 22:23

Chris,

The quality of the tracer for the Choline scan is very hit or miss. It is produced on a cyclotron elsewhere and delivered in double quick time to the treating hospital as it has a very short half life. As was the experience of some other members, the first batch delivered for me did not meet the standard required and a further batch had to be made. The ligand for the 68 Gallium PSMA scan can be produced with a generator and hopefully will result in fewer rejections for unsatisfactory quality. Hope Ulsterman does not have a problem with his scan.

Edited by member 02 Feb 2018 at 03:26 | Reason: Not specified

Barry

User

Posted 01 Feb 2018 at 23:32

Thanks Barry. I know you are ultimately much more well informed than I , but the PSMA was cancelled twice also due to “ production reasons “ which cost me significantly in transport and hotels ( but I’m not complaining ) !!! I wouldn’t put it past 3 failures for a company to supply a tracer that wasn’t quite perfect to keep their status. You know the score in any business. If you can’t provide the goods .... I’ve seen far too many failures. Yes I may have very micro mets but it’s taken me six attempts to get two PETS which were both undetailed to such an extent that they won’t give me another at PSA 24 post op. That surely shows lack of faith in Southampton NHS of this technology ?? Scan fine — but tracer very unreliable ?

If life gives you lemons , then make lemonade

User

Posted 02 Feb 2018 at 00:28

The flip side of that is that some men present initially with PSA of 4 or 6 or 10 or whatever and the tumour areas show up on a normal run-of-the-mill scan so it could be your cancer that is odd rather than the tracer being faulty?

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

User

Posted 02 Feb 2018 at 07:50

Yes I am odd. It’s always been said. I think the data PCUK sent me says it cannot “ pick up “ on 8% of subjects. I always knew I’d be good at something :-)

If life gives you lemons , then make lemonade

User

Posted 07 Feb 2018 at 20:30

Had my Ga68 PSMA scan today at the London Clinic - thanks Dave for the recommendation. It cost me £2588. The reports will be with my oncologist on Friday. I'll keep you all posted.

Ulsterman

User

Posted 07 Feb 2018 at 21:54

Good news and no c**k-ups ! As you say you’re not sure what a good result is. But I hope it’s a negative as ideally that’s what you want. I can’t imagine what it may see at psa 0.02 , but you never know. Everyone’s PCa is different as you know by now. But not sure you should have had to pay for it - prob because psa was so low ?? Anyway here is hoping you get the answers you need

If life gives you lemons , then make lemonade

User

Posted 08 Feb 2018 at 08:14

Chris - the NHS was willing to pay but just couldn't get it organised quickly enough so I decided not to wait and go private. I was the first from my nhs hospital to be offered the scan on the NHS - because I'm young and high risk

Ulsterman

User

Posted 08 Feb 2018 at 08:31

Originally Posted by: Online Community Member

Had my Ga68 PSMA scan today at the London Clinic - thanks Dave for the recommendation. It cost me £2588. The reports will be with my oncologist on Friday. I'll keep you all posted.

Ulsterman

Ulsterman,

I am delighted you were able to have the scan. In my case it picked up pin pricks of cancer cells which were unfortunately in places they should not have been and hence the aggressive treatment regimes that have followed for me in trying to flush them out. I do hope they pick up everything for you, it will be such a head start for you and your Onco to have in your armoury.

On a lighter note, I hope you didn't fall in the trap of tipping the doorman at The London Clinic. On many occasions he is decked out in all his regalia and it is difficult to sometimes remember you are at a hospital and not a hotel.

All my very best wishes to you

Dave

Edited by member 08 Feb 2018 at 08:40 | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 08 Feb 2018 at 12:47

Dave

The doorman and reception staff all did put me in mind of hotel concierges. After paying as much as I did, I wasn't minded to tip anyone! Call me miserable.

Ulsterman

User

Posted 21 Feb 2018 at 12:14

Well, it worked and I didn't waste my money

With a PSA of 0.023, the PSMA scan picked up cancerous cells in two ymph nodes further up the prostate bed. It picked nothing up on the prostate bed itself and nothing in the bones.

The plan of action? I start bicalutimide today for six months and will have 37 sessions of radiotherapy.

Quite worried about the bicalutimide. Don't want boobs!

Off to pick up my prescription.

Ulsterman

Edited by member 21 Feb 2018 at 12:18 | Reason: Not specified

User

Posted 21 Feb 2018 at 12:56

Well in the world of poor outcomes that is a bloody marvellous outcome. So pleased for you that you have a plan and that there is a really good chance of the plan working.

You will make it to Gambia yet :-)

Edited by member 21 Feb 2018 at 12:57 | Reason: Not specified

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

User

Posted 21 Feb 2018 at 13:56

I'm off to the Lake District for a few days, but Gambia is still on the radar screen, along with an awful lot of other places.

Ulsterman

User

Posted 21 Feb 2018 at 15:01

Picking up cells with a PSA of 0.023 is amazing. I'm sure you would rather not be in this position but as Lyn has said there is a real chance to deal with this successfully now.

Hope it all goes well and you enjoy the Lake District plus many more holidays elsewhere.

Ian

Ido4

User

Posted 21 Feb 2018 at 17:53

Well worth getting the PSMA scan which has helped a decision on your further treatment but as Chris said not suitable for all men and in all situations. It was specifically designed for PCa and should provide a more definitive result than the Choline one which, as in my case resulted in different interpretation. According to an Australian Professor, they are going over to the PSMA scan now for PCa, which is becoming available at a number of centres in Australia as I posted elsewhere. He said they abandoned the Choline one after only about 6 months but it is still being used in the UK.

Barry

User

Posted 21 Feb 2018 at 18:46

I'm delighted that they found the pin pricks of cancer cells for you.

I told you the London Clinic were good, they really are at the top of their game there.

My Oncologist has repeatedly told me that without these new high powered scanners they are blind to knowing where the cancer really has spread to until it is too late in some cases.

I am one to talk as my numbers are not the best by some way, but at least the Chemo is keeping some degree of control on it (infusion number 14 yesterday with 2 more to go in this session to bring it up 16 infusions)

My very best wishes for a full recovery Ulsterman.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

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