PSMA PET Scan wait

Your questions made me reread the consultant’s letter again Steve which includes: ‘as the biopsy results have come back as a grade group 3, it is hospital protocol that any patient with grade group 3 and above have a PSMA PET-CT scan to complete staging. The results of the PSMA PET-CT scan will inform the treatment plan’. 

Am I right to surmise then that there is a difference between a grade group 3 and stage 3 and that we don’t yet know what his stage is? This is all so confusing. We’re both fairly certain the nurse told us he was stage 3 but it was a long phone call with news we weren’t quite expecting to hear over the phone rather than via an appointment with a consultant. A sign of an over stretched NHS I suspect. 

I also suspect that in my husband’s case the hospital will be very careful not to make a mistake as in 2017 he had several appointments with an oncologist who believed what eventually turned out to be a benign tumour in his spine was a secondary cancer and who was adamant he must find the primary cancer before offering treatment; though he did offer 2 referrals to palliative care and told us several times that this was terminal. It was only the intervention of an excellent spinal consultant who eventually removed the tumour and rebuilt his back that got us to move on from a very long and harrowing nightmare. The removed tumour was sent away for analysis and not a single cancerous cell was found in it. After a very long 4 week wait it was deemed to be a polyostotic fibrous dysplasia that had fractured several vertebra in his spine. Needless to say we never saw the original oncologist again but I suspect there may be a little flag on my husband’s records to tell them to check everything thoroughly!

This means we now either take everything we are told with a pinch of salt, as no news can ever seem quite as bad as that, or we wonder whether his luck is now starting to run out?! 

That's the best bit of news that u  have come up with, had to check it out online grade group 3 is talking about biopsy 4+3.. so not stage 3, relax

So there's a good chance it is still contained within the gland which would make sense based on the stats including MRI sizing.

So looks like time is more on your side so yes, u can still push for scan but prob not quite so urgent now

So, good news, sorry to hear about the spine issue.

So think u really can relax a bit now,

Looks like HT and RT will do the trick , obviously I could be wrong in my analysis  but hopefully not

Steve

THANK YOU from both of us! 

I will start pestering from tomorrow but reassured that the long delay may not be as worrying as we first thought.

Thank you for responding so quickly too.

Have a lovely evening.

Scan now booked for Thursday 27th April! 9 weeks after the referral for a 2 week scan but at least we have a date at last!

Then we’ll start the wait for results….

Stay strong everyone

Good that you now have a date. I hope all goes well

That's good news, fingers crossed, stage 2, 

Yes - I have been following this thread - that's great news and I hope all goes well. Once you have all your results stick them on here and I am sure you will have lots of help and advice.

PC is a slow growing cancer but I know the waiting for appointments and results can cause more anxiety than the actual cancer  - for both the patient and the partner - stick with it - and I wish you all the best.

Kind Regards - Brian.

We were told we better not getting pmsa scan as it is giving us a bette chance of a cure and giving it the benefit of the doubt. Which confused the hell out of us. They said although ct scan and bone scan showed no spread there maybe microscopic spread but will be blasted with radiotherapy. So can’t wait to discuss that further with oncologist . 

my husband has slow growing in the right side of prostate but the left side moderately aggressive with high volume. 

hoping to get better clarification from oncologist in couple of weeks. 

Hormone treatment going well so far it only 10 days in on tablets and only had first injection on Friday so maybe early days. 

Good luck with scans xx

It’s amazing what a different approach different hospitals and oncologists seem to take. We just have to trust the experts and stay hopeful I guess.

I hope the treatments continue to go well for your husband. X

I think maybe your husbands diagnosis is similar to my partners. We were told "Going for a cure" It had that feeling of he was on the edge of a different treatment plan option.. We were slightly confused but happy to embrace the all guns blazing approach. My partner was told by another consultant that there could be undetectable micro metastatic activity that wasn't showing up on the PET scan because of his high PSA (115) and that he had started HT three weeks before. So I'm guessing there's a thin line where it's of no particular advantage to have the scan if you've had all the other investigatory tests and results. 

All the best for you and your husband, keep in touch,

Lorraine