Out of the blue

Wow well done the gp ,I think we are pretty much the same as far as numbers go  a lady I know mentioned hi fu to me but it's not available where I  am so I opted for rt not sure when that is going to happen yet I've had the course of tablets and 2 hormone injections so far good look with your journey 

Yes not available near me either and nurse tried to dismiss it so if I go down that route it would have to be private , good luck also with your treatment, all the best , Nick

Hi Fantic240 , interesting that coming back off private seems to put you at a disadvantage.  It was the main frustration for me at the start trying to get back into the NHS pathway.  Once back, I have had brilliant service.

If I were you, I would wait for the NHS appointments in 5/6 weeks and understand all your options before making any choices.  You don’t need to rush by the sound of it.  Good luck and I am sure others will be along.  David

Thanks David , it s been more of a mix and match type of thing, I was referred to urology from Doctor but quite quickly got a MRI appointment, (NHS) after the scan I was told could be 4 weeks for results , I asked who had requested it and was given the name of the urologist

coincidently a few days later I had an appointment with a gastroenterologist again NHS who I have annual check ups with , in the appointment he could see that the results from the MRI were in, even though this wasn’t his field he could see that there were abnormalities and when I told him the name of the urologist he knew her and told me she also worked privately so he advised me to arrange an appointment with her and he would call her to get her up to speed, so I managed to see her a few days later privately, she then arranged biopsy back on the NHS 

Every thing else then followed through on the NHS until the results didn’t come back in the advised time 2-3 weeks and was looking at the 6 weeks even though I knew they had them and they had been discussed within the panel the week before so that’s when I saw the urologist privately just to get the results as anxiety was kicking in , so I never really left the NHS system , sorry as it’s a bit long winded :)

I read you profile and wish you well with your continued journey 

all the best

Nick

Hello Nick (Fantic240) 

Welcome to the club - you would be amazed at the number of "stalkers" we have but we are happy with the situation as we are providing a service to one and all.

As for the NHS as you have found you need to advocate for yourself and be gently persuasive with all your dealings, as my CNS (Cancer Nurse Specialist) said "In the NHS he who shouts gets" and I shouted and got!!

So - Gleason 7 T2aN0M0 - personal opinion - Surgery or RT or HT or Brachytherapy or HIFU (although not offered on the NHS unless a clinical trial). My advice - get a pen and paper (old school) or a spreadsheet and do a list of the pro's and con's for each treatment as they affect you and your family. Use trusted sources for your research - Macmillan, Prostate Cancer UK and Cancer Research UK - not Dr Google. Ask us anything you aren't sure about.

Here's a link to a booklet with quite a lot of useful information you may find handy:

FIGHTING PROSTATE CANCER - A Survival Guide by Dr Jyoti Shah

I hope the above helps - we are all in this together.

Best wishes - Brian.

Hi Brian

thanks so much for reply and advice and yes since diagnosis last Thursday I have probably juggled every option and angle , taking so much info fro here and the other prostrate sites, am pretty much overwhelmed with it now , also had a lot of talks with friends who have been through the same , one who had removal and one who had RT , both a few years ago 

as we stand if it was in order it would be 

HIFU ( even if I have to go down the private route )

Bracheytherepy

RT

RP

i see the HIFU chap next week and I saw he also has done a lot of RP surgery so can pick his brains on a few options

will be taking time though

Thanks again and wishing you well sir

Nick 

Hello Nick (Fantic240) 

Thank you for your reply.

Good luck with your choice of treatment - keep us posted as to how it goes - we have had the odd report on HIFU but not many.

Brachytherapy isn't offered by every NHS Trust but you can ask for it under NHS "Pick and Chose".

Best wishes - Brian.

Thanks Brian and yes will of course will report back thoughts on the HIFU 

All the best

Nick 

Hi

You appear to have had a similar experience with your cancer navigation nurse as I did. I do not understand why nurses choose to go into the role of a specialist cancer nurse but who do not have the insight off how a diagnosis can affect patients. Mine actively prevented me seeing my consultant despite my raising serious concerns, from my perspective, with the treatment I chose. I raised the concerns with my GP who in turn wrote to my consultant asking for clarification. For him as well as me as my GP wasn’t confident he could answer my concerns. From the response to my GP I have obviously been portrayed by the nurse as unnecessarily needy. I now have no faith in my consultant but I do not know how to handle the mess.