PSMA PET Scan wait

Hi RL

Sorry to hear, yes I know there are a lot of delays at the moment, strikes obviously don't help. I presume that the MRi shows the cancer has moved just outside the gland,  you don't know to what extent?

I think Mri would have picked up in the nodes so could be worth looking at the MRI report to see what it says.

Pet scan more detailed so would potentially show up more. 

Possibly keep pestering them and say that you will take a cancellation at short notice, if u can do that.

Please come back when u know more detail, what is the PSA by the way?

best wishes

Steve

Thank you for your reply Steve.

His PSA last November was 6.09. Had been checked every six months for last two years and was slowly creeping up, hence the MRI in December, just to see if anything was going on.

Consultant letter to GP has lots of figures which I’m afraid we don’t fully understand yet.

E.g. prostate volume 80cc (MRI), 84cc (TRUS)

Biopsy report: adenocarcinoma, Gleason score 7 (4 +3) Left - 10/15, 1.7-9.9 mm Right 3/13, 1.8mm

MRI pelvis with contrast more prominent signal change in left apex, now scores PIRADS IV (previously PIRADS III in December 2020)

As his Dad died of prostate cancer (albeit in his 80s, husband just turned 65) they are keen to check it hasn’t spread anywhere else before advising on treatments. We appreciate the PSMA scans are much more accurate on a cellular level than traditional scans, it’s just the wait that is getting to us now. Husband doesn’t like to make a fuss, especially as he says they’re may be many more souls in worse situation than him waiting but I think I will start pestering appointments again on Monday. We could do a cancellation also as I took early retirement in the autumn so we could spend more time together! Not quite going as planned so far!

On the face of it, doesn't look too bad, low PSA, non aggressive type,  tumour size not too bad, to put into context, my tumour grew from 3 mm to 13mm in 4 years.

Something shows on the MRI which they want to double check with the PET scan.

Just hang on, hopefully things not that bad in the end, potentially still curable if not in the bones which would be surprised with those stats.

Let us know when u know more 

Good luck 

Steve 

Hello Roselover, the waiting for tests and results and treatment seems to go on for ever and is very difficult to cope with. Others have posted some very sensible replies but I have another two things to add

first, does your husband need a PET scan? My husband was T3a N0 M0 Gleason 4+3. He only had a bone scan after MRI and biopsy. A pet scan was never suggested. I know not everywhere does  a PET scan.

second, your hospital trust should have a Patient Advice ( sometimes Information) and Liaison Service ( PALS or PILS) . The contact details should be on the Trust website. It’s worth contacting them and explaining your difficulties and mentioning that you are thinking about making a formal complaint and asking them for assistance. The Government target for every hospital trust is that everyone referred to a hospital for suspected cancer should be seen within two weeks and should wait no longer than 62 days from the date the GP does the referral to the day the first treatment is started. This is the Referral to Treatment Target (RTT) and I would advise you to demonstrate your awareness of this when trying to expedite appointments.. Obviously, the NHS is under tremendous pressure and Trusts are not meeting government targets but they do have to declare how well they are meeting ( or failing to meet) such targets .

the NHS seems to have become  a 2 tier service, sadly. Those who ‘make a fuss’ get seen quicker than those who don’t! You have to push for the care you need - you have paid for it in taxes throughout your adult life! As suggested, saying you are happy to take a ‘short notice cancelled appointment’ does help keep things moving along.

I hope this helps!

Good luck and I hope you get a swift appointment

Thank you for your reassurances Steve, it really helps. I’ll let you know when we get any further information.

Roselover

Thank you for your response Worriedwife. I’ve being holding off making a big fuss as the reason given for the delay is a National failure with the imaging used, which is therefore out of their control. I was just hoping to hear from somebody else on this forum who is getting the same message form their hospital trust.

I know there are not that many PSMA pet scan machines in the country so if we lived in a different area he would probably have started treatment by now but equally the new machine is so accurate at picking up any prostate cancer cells anywhere in the body (as apposed to traditional imaging which has to rely on a tumour forming to detect the cancer) that it probably is worth the wait.

I’ll start pushing for more information again tomorrow. 

Roselover

I wonder what makes them say stage 3 as they are doing a PET scan to check on nodes/bones etc.

With those stats does raise a question mark.

Stage 2 possibly/hopefully but then they are the experts, just my opinion.

Steve 

Sorry,and another point, just re reading your posts.

Looks like he's been on surveillance for the past two years so ,again, surprising they would suddenly anounce stage 3.

Sorry, just me doing too much detective work

Steve 

Also had a veryyyy long wait for PET scan. 
rang each day and was on the cancellation list. 
in the end the wait was 4 weeks (not months) as a cancellation place came up.  
such a worrying time having to wait. I’m high risk Gleason 9.  
now the wait for results which has been 2 weeks plus already. Easter and strikes haven’t helped!
When we were told about the long wait we looked into private scans which can be done sooner. The cost is around £2-3K. 
plus you need a private referral.  
Please do pester them. Make sure you’re on the cancellation list too. 
All the very best.  

Thank you for your reply WaitingAnxiety. Good to hear it’s not just us (sort of).

I’m going to start daily pestering from tomorrow and ask to be put on the cancellation list, so hopefully he’ll get his scan soon.

Hadn’t thought of the next long wait being for the results though…! It just amazes me to read a few people on this forum who start treatment within days of biopsy or diagnosis. I know he’ll get there eventually but it really does test your patience.

Stay strong.