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Another rise 🥺

User
Posted 26 Nov 2020 at 19:42

Hello all


I hope everyone is keeping well.


OH had his latest PSA test a couple of days ago and it is now 2.5. This is up from 1.1 at the end of August. Gary’s Onco rang me today as he has been referred back to MV by our GP as his consistent PSA rise all this year is now a “cause for concern”.


Onco is booking him a PSMA PET scan and then a consult to review the results of the scan. However Onco explained today that the cancer may be too small to see on the scan at this stage and if that is the case then it is a waiting game until it appears. Well this is rubbish isn’t it!!! We have to try and get on with our lives while waiting for the cancer to be big enough to see!  I understand Onco’s point totally that he can’t treat what he can’t see but this waiting is not going to do anything for OH mental health. 


Can anyone fill me in on exactly what a PET scan does. How is it different from other types of scan and what do you think the likelihood is of being able to see anything with a PSA of 2.5. I have no experience at all of this type of scan so any guidance would be a huge help.


Thanks


Debbie

Debbie xxx
User
Posted 27 Nov 2020 at 00:05

So, PET and PSMA scans are computer aided tomography (CAT or CT)) scans augmented by radioactive tracers or dyes injected into the bloodstream which then travel round the body and ‘stick’ to any errant cancerous cells that may show up on the scans.


The purpose is that any secondary tumours (if visible) can then specifically be targeted and treated by Dan Dare and his ray-gun, rather than blasting a whole area with radiotherapy.


The radioactive tracers are, in order of cost and accuracy; Choline, Gallium-68 isotope PSMA (£2600 privately, you might get it on the NHS) and the gold standard, Lutetium-177 PSMA (£16,000) last time I looked.


None of those three scans are guaranteed to pick up any metastases at all.


Worth a try though, I guess he’ll get Choline.


Best of luck.


Cheers, John.

Edited by member 27 Nov 2020 at 00:31  | Reason: Not specified

User
Posted 27 Nov 2020 at 00:11

A PET scan looks at tiny changes in the way cells are structured. There are different kinds of PET scan, which use different tracers (chemicals injected into the body) to see what is happening. In a PSMA scan, it is usually Gallium 68 that is injected and the G68 binds with the PSMA that is produced by prostate cancer cells, so on the scan the clusters of cancer cells light up. Other tracers include choline, flourine and FACBC (Axumin).


There is no guarantee that the scan will pick up the active cancer cells. Ulsterman had a scan with a PSA of 0.023 and it showed cancer in a lymph node but ChrisJ had a PSA of over 100 and the PET scans were still coming back clear. Sometimes, the cells are so finely spread around the body that they are just too small to see (this is referred to as micro-mets).


Also worth noting that the tracers can be particularly difficult to make and have only a very short life span - it seems to happen rather often that the patient gets to the hospital for their scan only to discover that the batch for that day has gone wrong or not been made or was caught in a traffic jam and went off. 

Edited by member 27 Nov 2020 at 00:19  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Nov 2020 at 07:26

Thank you so much for this John. I have no idea which tracer you mentioned my OH is having so will find out. Thanks again, this has really helped x

Debbie xxx
User
Posted 27 Nov 2020 at 07:39

Thank you so much Lyn. A clear and concise explanation as always. I appreciate you taking the time to respond xx

Debbie xxx
User
Posted 27 Nov 2020 at 08:04

Hi Debbie, sorry to read about Gary's PSA rise, I notice from the profile he's been off HT for a while, has the Onco not suggested another course of HT to flatten the PSA again?

User
Posted 27 Nov 2020 at 09:43

Sorry to read about Gary’s PSA rise. As Lyn has said it is difficult to tell whether anything shows up as it depends on where the cancer is and how it is distributed. 
I had a choline F18 PET scan with a PSA of around 0.8 in December 2016 and it did pick up some cancer.


I also had an MRI scan with a Gallium tracer which picked up a separate prostate based cancer in the prostate bed which the PET scan missed so might be worth asking if an MRI is possible too?


As Lyn has also said the tracers for PET scans are difficult to make. My first appointment was cancelled due to the tracer not being made properly. I did get it done the next day.


Thinking of you both. 

Ido4

User
Posted 27 Nov 2020 at 10:41

Hi Jasper. Thanks for your reply. That was the first thing I asked the Onco when he called and he said not until he sees the results of the scan. I don’t understand why he wouldn’t just put him back on to be on the safe side x

Debbie xxx
User
Posted 27 Nov 2020 at 10:46

Hi Ido4. Thanks so much for your reply. That’s a very good suggestion. I’m going to email the Onco and ask if he can have an MRI also. It certainly can’t hurt. Let’s hope the PET scan gets done on the first try, we shall see.  Thanks again x

Debbie xxx
User
Posted 27 Nov 2020 at 12:55

Originally Posted by: Online Community Member


Hi Jasper. Thanks for your reply. That was the first thing I asked the Onco when he called and he said not until he sees the results of the scan. I don’t understand why he wouldn’t just put him back on to be on the safe side x



 


Because the HT would shrink the cancer making it even harder to spot on a scan. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Nov 2020 at 15:13

That makes sense Lyn x

Debbie xxx
 
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