Delaying radiotherapy for locally advanced.

User

Posted 13 May 2026 at 08:23

Husband is booked for pre scan on June 1st. Problem is due to NHS confusion, red tape etc still needing Apalutamide education appointment, he has still not had a prescription for that drug. There is still a 2 week wait. He has been on Decapeptyl for 5 months now.

One of the issues is the poor communication by the hospital

He had an appointment for February when he expected to be prescribed Apalutamide but it turns out the consultant we saw deals with radiotherapy not the medication. Anything he discussed re medication was not shared or passed on.

3 phonecalls to numbers given by CSN to sort this out himself led to zero.

He has now written a letter to PALS and included a timeline of events.

This is an added stress we really dont need and i think totally unnecessary.

Will he need to delay the Radiotherapy? With luck he'll have been on Apalutamide for about 6 to 4 weeks

If current red tape is anything to go by he'll be collecting it from the pharmacy in his Radiotherapy gown!

Edited by member 13 May 2026 at 09:59 | Reason: Added information

User

Posted 13 May 2026 at 12:09

No I don't think it's a good idea to delay the primary treatment, it's only recently that patients have been getting "up front" Apalutimide.

I suspect whatever good work the Apalutimide will do will still happen. Keep pushing the incompetent lump that the NHS is! Don't let them grind you down.

User

Posted 13 May 2026 at 12:24

Thank you for that. We've just sent the email to PALS. I think you're right. But these consultants have no mind of their own. They just follow protocol etc. She told him twice, you'll be on it 2 years. Yes we know dear thank you. He's not even tried it yet.

Not sure if you saw my other post but we took a table of side effects we'd printed out and how he's doing to show her. Who did this? Your GP? She said. Because of course we have no minds of our own. Husband liked it and we'll do it for every appointment. They can put them in the bin as far as I'm concerned.

They should show an interest in how what the prescribe effects their patients. In our case it was a positive as so far he's OK

User

Posted 13 May 2026 at 13:11

I suspect the likes of Grok and Vera Health will remove the requirement for these overpaid "protocol pushers" shortly.

The only doctors who survive will be the ones who are confident and capable enough to give clear medical leadership and have human qualities that can effective explain choices and risks.

User

Posted 13 May 2026 at 13:35

Well that would be quite a change of atmosphere. Thinking for yourself.

User

Posted 13 May 2026 at 18:39

Things dont always go smoothly do they, it doesnt help at all.

I sometimes look at things too simply, my treatment was 3 years Zoladex with 32 sessions of RT (abiraterone,enzalutimide,prednisolone added for 2 yrs on trial). My ADT started Oct 2015 normally RT would have commenced say 6 months max after that. I had TURP May 2016, onco started talking about date for RT but we all agreed to delay it until 1 Nov 2016, my choice as was getting married, so RT started 12 months after HT started. This obviously wouldnt have happened if HT wasnt working as it should etc.

Not sure if the treatment your husband is currently having is doing what it should etc but if so delaying RT usually not aproblem?, if thats a big worry for you. Obviously we're not all the same.

Peter

User

Posted 13 May 2026 at 19:00

Hi so far the Decapeptyl seems to be working. He would like to get the Radiotherapy over.

It's the fact we can't contact anyone to discuss this over. That would sort the confusion out.

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