If your initial experience is anything like mine you probably won't meet that first nurse specialist or Doctor again The first one I met was there just to pass on the biopsy result. There was anothe nurse there at the time who gave me a card and some documents and information leaflets, but I was soon passed on to a different team once I had seen the specialist I was assigned to and treatment sted. Your first Nurse Specialist was probably just trying to be friendly . You won't be left alone and they really do try their best for us. Have you been given any 'phone numbers for support workers? Mine have reassured me several times.️

Hello and welcome to a place no one wants to be. You will find this group a great place to be,full of help,support and just good people. 

Like you we were given business cards of 3 specialist prostate cancer nurses who we were told would be there if we needed anything.... they weren't! We have left numerous answer phone messages on all of them and not had one reply. 

We had delays in getting appointments for tests and Oncology consultants appointments and also no answers from the nurses on my husbands medication so I complained to PALS and we were given quicker tests and appointments at another local hospital. Thankfully they seem much better. We have had to call our new team and someone actually answered the phone and was so helpful. 

So it would seem it all depends on the hospital I'm afraid.  If you're not happy PALS is an option. 

I wish you well with your treatment and please ask for help or advice on here,as I said they are a great bunch of people. 

Best wishes x

Don’t worry - there are so many men coming through the system now, as prostate cancer is getting so much publicity, that it’s a sausage machine and nothing personal from the nurse.  You will meet many, many caring professionals in the NHS, so keep pressing for your appointments.  I found email to be best, as they have to answer to archive it.  AW

Hello Seeking , welcome to this forum. I’m sorry to hear of your diagnosis and the problems you have been experiencing. We had an absolutely awful experience going through urology diagnostic pathways and ended up making a formal complaint. We did, however, find the prostate cancer nurses were our life savers! So…what we did :- 1. We kept a diary of every single encounter with the hospital ( admin, doctors, nurses, receptionists etc) and recorded every single conversation, date, time, name of person and, wherever possible, their direct contact details 2 we also used PALS who were very good in keeping things moving along 4. We told everybody that we were prepared to take a late cancellation appointment and literally dropped everything to attend 5. We did our homework! We made sure that we had researched the next step and went armed with a list of questions - 3 copies - one for my husband, one for me and one for the doctor. I jotted down the answers ( some people ask permission to record) 6. We were politely assertive. We learned very quickly that being quiet and compliant gets nothing done. Being polite but persistent got us through the system.

i have to add that this was all very distressing and exhausting! However, as soon as we got to oncology everything changed! The whole thing was brilliant - on time, people were professional but extremely caring , they treated us like human beings and not objects on a conveyer belt etc. how can two departments in the same trust function so differently?!!?

so, hang on in there! State your claims and get them to listen if you can. I hope things go better for you soon

Hi Seeking Clear Horizons

Good afternoon and welcome to the family that no one wants to be in but it's great to meet you today.

Yes you are most definitely in the right place my friend.

I was also diagnosed with Terminal Prostate Cancer in June last year which was picked up by my Urology Consultant.

I was also seen by Cancer Consultant and a Specialist Nurse who was my first point of call.

My wife managed to get hold of the Cancer Consultants Secretary (Tel & Email) so that was our communication point which has always worked well.

I have only meet with the Specialist Nurse once in the last year and I currently meet the Cancer Consultant every 3 months.

You could try to contact the "PALS Service" at your hospital if you can as they are good at sorting out these problems.

If you need any help with contact details for the PALS Service please let me know???

Prostate Worrier.

Hi,

sorry to hear about your current situation,

i remember seeing this oncologist at hospital, i really liked him , so i was keen to go to his permanent hospital, which i did , never seen the guy again . There could be a number of reasons why, however the people you will see if my experience is anything to go by will be very professional and caring .

If you have immediate questions to ask there’s the MacMillan helpline, very helpful , however the one I used was Prostate specialist nurses number is 0800 0748383  , believe me , they are brilliant.

Hope this helps , best wishes

Tony

Hello Beerandrocks.

Thank you for responding, it helps to put things into a little perspective. I am not at all surprised I have never heard from that Urology Specialist Nurse ever again.

Thank you Willow67 for getting in touch. It is very easy to feel you are the "only person in the world" going through what you are going through - so thank you for helping me realise - I am not the only one.

I wish you and your loved ones peace, healing and tranquility.

Thank you . It definitely feels like it's only you who feels this way at the beginning but being on here is so reassuring and you then realise your not alone.

Best wishes and do come back on here if you need anything else x

Hello Prostate Worrier.

Yes - please forward any contact details for the "PALS Service" as this is new to me. Unfortunately, for me, I am being bounds around THREE hospitals in Birmingham (Queen Elizabeth Hospital; Good Hope Hospital & Heartlands Hospital). I feel a bit like "Pigg-In-The-Middle"....