Just diagnosed.

Hi, I joined here a few weeks ago, thinking I had stage 1 kidney cancer.I am 61 years old. Details are on my profile page.

I saw the urologist today and am stunned to be told I have Stage 4 kidney cancer, it's spread to both lungs already. They can't operate to remove my kidney. It's incurable. 

There is a possibility of immunotherapy, I will hear from the oncology department soon. 

I don't know where to begin to process this. I joined the Incurable cancer group just now but can't work out how to post. Telling my adult daughter this afternoon was very hard. 

I feel lost. I am too afraid to Google, as the thought of a drawn out painful illness terrifies me.

  • Hi Lucy Locket.

    Well you have posted and i have read, so you are doing good.

    I am sorry you have had to join this group, and very early days for you, and as you have said, a lot to process,

    I do not have the answer wish i did,

    This is a great group, though sounds bad to say that.

    Everyone he is in the same boat as you, and at times, some of us my start to sink, others, and then some one here, will jump in, and hopefully start to pick them up, as such.

    We where all new once, and no how you are feeling, every emotion going threw you, it is natural, so you can rant, scream, cry, and yes we do

    laugh, and at times laughter is good.

    Please do not google will scare you, come here, or phone Macmillan there are a lot of people here, and we all from our journeys, might have experienced  what you may be going threw, regarding anything.

    I hope others come in and welcome you sure they will, great bunch and i would not have got this far with out them,

    Ellie xx


  • Hi Lucy, welcome to the group, although I'm sorry you've had to join. I know you'll be feeling scared at the moment after receiving this news. It's going to be a tough time for you and your family to get your heads around initially.

    Things will start to calm down a bit once your team are able to sort out a plan for you. It's probably best to try and avoid googling anyway as a lot of the info is out of date. I would suggest the Macmillan site or NHS for basic information until your appt with the specialists. Immunotherapy has worked so well for lots of people so try and keep as positive as you can.

    Please let us know how you get on and come on here to let off steam or get support.

    Big hugs 

    little-fi xx

  • Hi  , welcome to our group although to be honest I would rather have met you elsewhere. What a shock you must have had, thinking that you are stage 1 and then the bombshell drops and you find out you are stage 4! So sorry for you Lucy but the plus side is that here you are mingling with the most caring people I know. Thing is we are all together here and we understand EXACTLY what you're going through. Whilst Google is helpful to a certain extent, it's out of date and there's a lot you can discover here and you can also ask a nurse or an expert. 

    The first time you try to post is the worst, you'll catch on the more you post. Now that you're here if you want to join in the chat just hit the reply button and fill in the little box that appears. Practice makes perfect Lucy so away you go and start investigating the corners of the different subjects. If you want to start a new thread, find your way to the beginning of a thread and you'll see a large + sign in the top right and insert your topic and then read the self explanatory headlines. When you have finished your post just hit the post button and it makes its way into the incurables group.

    Hope to chat with you soon Lucy

    Tvman xx 

    Love life and family.
  • Thank you. I am veering between panic and anger just now. I thought that sort of news would be given with a nurse in the room or something. It's a good job my husband came with me. Walking through the waiting room crying was difficult too. I expect it will take a while for me to absorb the news.

  • Aw Lucy, that must have been so horrific for you, it's just as well your husband was there for you. Now he needs to be the number one for support and a shoulder at the same time. I think doctors don't always get it right to tell a patient and be sensitive.

    In my case my haematologist wrote my diagnosis down on a piece of paper and slid it across the table to me and said that I should look it up when I got home. For a while I didn't really understand my diagnosis and it took a few months to comprehend it. 

    I was chatting to a guy online today within this group whose GP hand delivered his diagnosis to him in an envelope with no explanation. What? In the GP's defence I can only think that he didn't know a great deal about bone marrow cancer. I understand through a support group which I belong to that a GP will only see 1 or 2 people with our cancer in their lifetime.

    Always around Lucy, take care.

    Tvman xx 

    Love life and family.
  • I don't know how to process this. Is there a section on processing and acceptance?

  • Not that I know of Lucy, there's a helpline to ring at any time, I believe that it's a good place to go. I've copied this

    Ask an Expert

    Ask an Expert is a place where you can get information and support from our experienced professionals. Our experts are here to help answer your questions. If you'd like to ask a question, go to the relevant session and select 'new'.
    Hope this helps Lucy 
    Love life and family.
  • Hi and welcome to our group you will get loads of support when you need us as Ellie 73 has said do not Google take one day at a time and be kind to yourself you will have good days and bad huge hugs xxx

  • Hi Lucy,

    I empathise with you there.

    The Respiratoy Doctor told me. I think he wasn't sure what to do with this blubbing woman in front of him.  He went and grabbed the nurse!   

    I then hid in the toilets for zbout 20 minutes, splashing cold water on my face to get myself under control.  I then walked through the waiting room wearing dark glasses.

    You won't believe it now because things are still raw, but you will hopefully fi get to a place of acceptance. (which is not the same as giving in)   and the crying will get less.  And there will still be moments of joy in life.


  • I am afraid of pain. I am afraid of weeks or months of struggling for breath. I am afraid of having no one to care for me when I can't care for myself.

    I already struggle to eat. I have no appetite, a very dry mouth, and a blocked salivary gland which makes chewing impossible. I have waited months since my referral to an oral surgeon.My uncontrollable weight loss scared me, as I can't nourish myself. I am on cyclizine for the nausea.

    I am not moaning, just trying to explain and voice my fears.