Dad diagnosed - looking for some guidance

Thank you all for helpful responses, it’s really comforting to have this forum! Will keep you updated, as things progress 

Thanks Lyn - current position is definitely preparing for the worst, but hoping (praying) for the best.

Hoping for confirmation of date for MRI today, MDT next Friday and then results following week. 

update - he was discussed at the MDT on Friday and has been notified that he has a phone appointment Monday morning. First time we’ve had phone appointment and not face to face… obviously don’t want to read too much into it but glad the waiting is almost finally over and we will know one way or another what his treatment pathway is.

In other news, my mum (who was diagnosed after him with breast cancer), is now three weeks post surgery and recovering really well. Keeping positive!

will update on Monday. Good weekends all, 

Sorry to read this news. So much that can still be done though. I watched a video that someone posted on here a while ago with regards to Oligo metastasis, it was an American doctor (obviously can’t mention names) speaking at a prostate cancer conference and I found it really interesting. 

Hope your mum is still recovering well too x

Yes I can understand that, the waiting around not knowing really is the worst part. I can’t even imagine what you’ve all been going through with both your parents diagnosis…really good to know they are strong though and getting through it all. Fingers crossed your mum won’t need further treatment.

And thank you, he’s doing really well. Just a step at a time….but feeling more positive x

Have you checked whether he should go to the GP practice for his Zoladex injection or whether the first one is being done at the hospital? Best to book the appointment now as the GP or hospital clinic will need some warning to order the Zoladex and (if the GP practice) to ensure that the appointment is with a nurse who knows how to use Zoladex depots.

Hi all,

Back again with another question. My dad has been doing some research and is looking at potentially referring privately to the Marsden for the oncologist appointment and treatment plan thereafter. As it stands, all his diagnostics have been done through NHS (save PSMA which we did privately to expedite). 

The reason for going private is that he wants to be treated at the Marsden (we have had a couple of family members go there and it’s been excellent), and his private work insurance will cover him to do this. The negatives from my perspective are that we aren’t really close (approx 1.5 hours), so logistically for treatment it won’t be the easiest, and I have read several places that private for cancer isn’t really the be end and end all. 

I’d be really grateful for anyones shared experience, I completely understand why he wants to go to Marsden (+ our hospital hasn’t been fantastic if I’m honest), but is there anything we should be aware of? Can he actually be referred to the Marsden as NHS? Or could he at some point switch back to NHS whilst at the Marsden?

Thanks as ever,

Sam

Hi Sam,

My husband got referred to RM on NHS and we live in Manchester. It was a urology referral though as he was going to have the op. As it turned out the waiting times were longer than we expected so we ended up paying private with the same surgeon but at LBH. We stayed in an apartment in London for 3 weeks around surgery (which was great for us) but I realise this wouldn’t be a good option for everyone and logistics have to be considered before making such a big decision. There is a lot to be said about being happy with your hospital and consultant though, it made such a difference to us. So as Lyn said you could still get the second opinion without committing to treatment there.

We initially paid for a private second opinion at the RM as our local hospital MDT confirmed bone met in his pelvis. All his scans were sent to RM MDT and they disagreed with original diagnosis…he had the G68 PSMA pet scan at this point which sided with the RM MDT. (Thankfully)

We had already prepared ourselves for the advanced diagnosis but we still wanted to go down the radical treatment path and then deal with the bone met later. I had received information about the Atlanta trial where one of the arms was what we wanted but of course you can’t choose. I did often feel like I was clutching at straws but I was constantly looking for a route with curable intent as I had the belief that anything was possible.

Best of luck with whatever decision he makes.

Elaine