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Pre surgery breakdown, now on the RT pathway ...

User
Posted 09 Oct 2023 at 13:13

Hi all,

First post here.

Diagnosed with PC in mid April with a PSA of 4.92. DRE found something, MRI confirmed that, biopsy 4/17 positive, M0N0, T3a, Gleeson 8, CT thorax / pelvis and bone scans clear. I think they said the cancer was 13mm long and on one side but was considered to be 'High risk'.

Told outcome of surgery or RT would be identical, chose surgery at UCH as I could have a second bite of the cherry with RT later if needed.

The morning before surgery I had a bit of a breakdown, managed to get to a local PC meeting, had another breakdown but they were very supportive but suggested I really wasn't in the right headspace to make such a big decision.

I tried to notify UCH of my change of heart but the NHS admin seems to be closed from 4:30 on a Friday till 8am on Monday. I did manage to leave a message with a night nurse but still got a call at 8am on the day of surgery, asking where I was. ;-(

So, I hope I have now triggered 'the system' to get me back onto a treatment path with emails and phone calls etc and have made some enquiries re getting on any of the shorter treatment trials (like PACE-C?) because it might mean I'd still be more functional so I can look after my wife who has dementia.

The person from radiology mentioned they had also seen a '4.5mm node on my lung' (but not to worry!) and I think they were going to check on that at the CT scan after 3 months (post surgery)? I volunteered to go on a trial  for 'cancer metastasis for treatment stratification of localised cancer (C-ProMeta-1)' but not sure if that is still relevant.

Basically I'd just like to be able to live long enough to care for my wife.

Any thoughts or suggestions welcomed.

User
Posted 09 Oct 2023 at 13:13

Hi all,

First post here.

Diagnosed with PC in mid April with a PSA of 4.92. DRE found something, MRI confirmed that, biopsy 4/17 positive, M0N0, T3a, Gleeson 8, CT thorax / pelvis and bone scans clear. I think they said the cancer was 13mm long and on one side but was considered to be 'High risk'.

Told outcome of surgery or RT would be identical, chose surgery at UCH as I could have a second bite of the cherry with RT later if needed.

The morning before surgery I had a bit of a breakdown, managed to get to a local PC meeting, had another breakdown but they were very supportive but suggested I really wasn't in the right headspace to make such a big decision.

I tried to notify UCH of my change of heart but the NHS admin seems to be closed from 4:30 on a Friday till 8am on Monday. I did manage to leave a message with a night nurse but still got a call at 8am on the day of surgery, asking where I was. ;-(

So, I hope I have now triggered 'the system' to get me back onto a treatment path with emails and phone calls etc and have made some enquiries re getting on any of the shorter treatment trials (like PACE-C?) because it might mean I'd still be more functional so I can look after my wife who has dementia.

The person from radiology mentioned they had also seen a '4.5mm node on my lung' (but not to worry!) and I think they were going to check on that at the CT scan after 3 months (post surgery)? I volunteered to go on a trial  for 'cancer metastasis for treatment stratification of localised cancer (C-ProMeta-1)' but not sure if that is still relevant.

Basically I'd just like to be able to live long enough to care for my wife.

Any thoughts or suggestions welcomed.

User
Posted 09 Oct 2023 at 21:00

Hi TimTom. I can't really comment on a PACE-C trial but if you can't get on one then the standard RT route should still leave you pretty functional to care for someone. Admittedly it is more long and drawn out but apart from feeling a bit tired and having loose bowels I didn't find it affected my normal life too much. Chris

User
Posted 09 Oct 2023 at 21:43

Hello TimTom,

Sorry for what you're going through. It's certainly worth explaining your situation to your clinicians, and also talking with Macmillan who will be well used to making suggestions when a carer is being treated.

I don't think the 5 sessions without HT would be appropriate for T3a staging.

UCLH has a prostate cancer support group for its own patients.

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User
Posted 09 Oct 2023 at 21:00

Hi TimTom. I can't really comment on a PACE-C trial but if you can't get on one then the standard RT route should still leave you pretty functional to care for someone. Admittedly it is more long and drawn out but apart from feeling a bit tired and having loose bowels I didn't find it affected my normal life too much. Chris

User
Posted 09 Oct 2023 at 21:43

Hello TimTom,

Sorry for what you're going through. It's certainly worth explaining your situation to your clinicians, and also talking with Macmillan who will be well used to making suggestions when a carer is being treated.

I don't think the 5 sessions without HT would be appropriate for T3a staging.

UCLH has a prostate cancer support group for its own patients.

User
Posted 09 Oct 2023 at 21:47

Hi Chris and thanks for the reply.

I wonder at what point a trial becomes just what we do?

User
Posted 09 Oct 2023 at 21:59

Hi Andy,

Quote:
Sorry for what you're going through.

Thanks. I've been ok with most of it, even the original diagnosis,  I think it was just the thought of the surgery that was the issue.

Quote:
It's certainly worth explaining your situation to your clinicians,

Maybe I will when I actually get to speak to them. ;-(

Quote:
and also talking with Macmillan who will be well used to making suggestions when a carer is being treated.

I have been on the forum and the folk there have also been very supportive and informative.

Quote:
I don't think the 5 sessions without HT would be appropriate for T3a staging.

I had a feeling that might be the case. ;-(

Quote:
UCLH has a prostate cancer support group for its own patients.

I'm not sure I would still be under UCLH would I if I didn't have surgery? I think I am under Princess Alexandra?

Tim

 
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