Update

Hi Johnam.

Thanks for the update, yes I was put on Hormone Therapy last June 2023.

That will be great to take part in the trial which will give your husband the chance to be seen sooner.

Eight month waiting list is shocking these days!!! 

Yes a curative pathway will be great news but remember it is no guarantee!!!!

That's a real shame that you have to wait until July but it is the way the NHS is at present.

Do you need to wait until you know if your husband has been accepted for the trial???

Prostate Worrier.mmm

Hello johnam 

Thank you for the update - not quite what you wanted but "Curative Pathway" is there. T3b means the cancer has left the prostrate and is in the seminal vesicles.

* You need to move on this so if you are after the surgery/trial you need to push for the PET scan.

* It's worth contacting both the surgeon and oncologist and saying you are able to drop everything at short notice to take a cancellation.

* Contact your hospital PALS office (Patient Advisory and Liaison Service). Tell them of your anxiety and that he's a cancer patient. The government guidelines are 62 days from the day your GP thinks you have cancer to starting treatment. (you will have to work that one out).

* If he's going for the HT/RT option - he could do with starting HT ASAP.

E-mail is the best form of communication, but if you have a telephone number better still.

I do hope this helps - I do have other ideas if you don't get any joy - please keep us posted.

Best wishes - Brian.

Hi , we’ve already told them we will take a cancellation . I’m in the process of doing a letter to the board as there seems to be no urgency even when I questioned the time already waited . He said he understood but he can’t magic appointments 

Hi he can’t go in HT if he wants to go down the route of the trial . So we have to wait but it’s disgraceful in 2024 that someone with cancer has to wait a year for treatment . 

I fully understand the situation - they may ask why you haven't gone down the PALS route first. - Don't forget your MP will be interested too.

Best wishes - Brian.

Hi Johnam

As has already been mentioned T3b in the seminal vesicles, there is a good argument that once broken through the gland then could be better with Radiotherapy and HT but in particular if. moved elsewhere IE vesicles.

Also by starting HT asap that would keep the cancer on hold or certainly should do.

Fast tracked for surgery, but how long to wait and in the meantime no HT to hold it back.

Sorry to sound a bit negative and only my thoughts so doesn't mean I'm right. But timing important on this one.

Best wishes 

Steve 

I’ve just send a stinker email to John Swinney & Neil Grey . As we live in Scotland . I’m now going to send an email to PAL . And follow up by phone tomorrow will keep you updated 

Good,  don't forget a surgeon will always push for surgery... obviously, looks like that's who u saw. But just looked back at you first post and they did offer u RT , perhaps they were concentrating  more on the surgery.

Hope all goes well.

Steve 

Hi Steve , we have not seen any consultant from the referral 19th March . It was the Specialist Prostrate Nurse whom we met today . He did the biopsies . It was my husbands choice to go down the surgery route as he could have started the HT today. He feels that surgery is the best solution for him as he wants the cancer out. I have to be positive with him in his decision . But the waiting time in Edinburgh is absolutely disgusting . SPN said that he’s been put forward for Prestine Trial but they need to do a PET scan to make sure it’s not in the lymph nodes as he would be disqualified if he did . He would have the surgery quicker if in the trial .  When he spoke about the 8 months that is for standard  cancer prostatectomy but   he may get it quicker after the multidisciplinary meeting as it’s broken out of the prostrate . Sorry I should have said that in my main post but lots to try and remember . We are just slowly coming off the ceiling . 

It's ok, yes I know so much to think about.

I understand that your OH wants the cancer out but keep pushing and if looks like quite a time to wait  consider changing to RT and HT.

So sounds like in seminal vesicles but hopefully not in nodes if I'm reading it correctly.

Good luck

Steve