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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.

Hello Anstey Nomad, my understanding of the nhs system locally is that the whole aim is to get the patient ‘to the right place at the right time’. To do this, NHS111 is the first point of call. You can contact this service either on line or by telephone. Of course, if it is an emergency then it’s a 999 call through to your ambulance service.

NHS 111 have call handlers who are guided by a computerised algorithm which gets them to ask the right questions and reach a conclusion about what happens next.. If there is any doubt they get a qualified practitioner to call you back ( I’m not sure whether this is a dr or a paramedic or, perhaps either?) 

if you call your ambulance service directly they assign you to 1 of 4 different categories where I live. Category 1 being life threatening and category 4 being the  lowest risk to life. Obviously cat 1 calls take priority.

Also, there are urgent care centres all around the country where you can just walk in.

when my husband was having his RT, they gave him a 24/7 emergency number just in case he went into urine retention. He didn’t need to use it. If we had any general ( not emergency) prostate cancer queries etc now I would advise him to call the oncology consultants secretary or the prostate cancer nurse specialist team or the GP - depending on the nature of the problem.

i was recently very poorly with a virus. I called NHS111 for advice. They said I needed to be in hospital and that they would organise an ambulance. The ambulance service rang to say they would be at least 3 hours. 10 minutes or so later a paramedic arrived on our doorstep. He gave me a very thorough examination, set up IV fluids and called an ambulance which arrive about 40 minutes later.

i hope this reassures you that you would not be ‘out on a limb’ as you fear? 

I hope all goes well for you both!

Hi again ansteynomad , if you are on chemo, your immune system can almost disappear, even in this situation with a temperature you are advised to get to A&E asap to get IV antibiotics administered.  Unless there is another factor we don’t know about, I would suggest that the advice to stay away from A&E is wrong.  
So any concerns ring your CNS,  if you get no answer, ring 111 and any emergency get to A&E or dial 999.

Hi David

Just to add - when going to A&E (which I have had to do during chemo) it is important to tell reception what treatment you are on, that you are immuno-compromised and you need urgent attention, especially if temperature is outside the norms stated (<36 or  >37.5). When I did all of this I was put in an isolation room that no one else was allowed into, then fed IV antibiotics then admitted to the Cancer ward for more IV antibiotics - but sent home after everything settled down with no problems. Everyone I spoke to said that I had done the right thing!

regards

KrisPy

PS - I am lucky to have a responsive CNS but our best way of comms is via email

Hi KrisPy, I was given a card to take to A&E and when I arrived at reception I duly showed it.  The response was nothing and it was clear to me that the receptionist didn’t have a clue, so I asked to see someone else.  The duty sister marched up to me and started to launch into a well rehearsed ‘you will have to take your turn’ routine until I got my card out.  It was like switching a button and within 5 minutes I was on an IV drip with the receptionist apologising.

Throughout the journey, there are times when you need to take control and nudge people back onto the right tracks.