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Hi ansteynomad , I think in general it is only usual to get your Cancer Nurse Specialist number (except when on Chemo or RT).  In my experience they are brilliant and although not always immediately available usually call back fairly quickly.  Anything needing urgent attention, I would either call 111 or go to A&E.

Hello ansteynomad 

So when you get your original diagnosis the "T" stage is the tumour - where the tumour is found so as the cancer has not been found in another organ on diagnosis such as the bladder or rectum you are a T3. Because the cancer has spread to DH's lung he is Stage 4 but remains a T3. (I know it doesn't sound right!).

As you are on treatment and under an oncology department - you should have a dedicated CNS (Cancer Nurse Specialist) and their telephone number. If the staff are busy, or you call out of hours the answerphone should be on. If it's something that can't wait it's a call to 111 or a visit to A & E.

I am perhaps "lucky" as I live just outside Manchester and my hospital is The Christie. I have 2 dedicated, named CNS's, a dedicated e-mail address and The Christie 24 hour "hotline" telephone number.

Best wishes - Brian.

I am confused, because I am being told on another forum that even just on ADT it is inappropriate to go to A&E because of potential infection risk. 

Hello ansteynomad 

It depends on what your medical issues are. 

There is a potential infection risk to anyone who goes to or works in A&E (my wife worked there for almost 40 years) as you have no idea who else is there!

ADT lowers your testosterone levels and can also suppress your immune system BUT in that case should we all stay in the house?

If you are showing any symptoms of any illness whilst on ADT and can't get hold of your CNS you ring 111 - they will assess you and ask what medication you are on. If they consider you need to be seen in a clinical situation on ADT or not they will advise that you attend A & E.

I hope this helps.

Best wishes - Brian.