New Stage 4 diagnosis - do you have any advice for me?

Hi there, I have just been diagnosed with Stage 4 (advanced) sino nasal cancer, which is in my nasal cavity, around one eye and in the lining at the bottom of my brain. I'm still in shock really - there is talk of surgery for me in October followed by radiotherapy, but it is a rare cancer with a poor prognosis, so it is all a bit uncertain. I have just turned 50 and am married with a husband and 13 year old son. I would be grateful to hear any advice from people about how you have coped with an advanced diagnosis - did things change for you rapidly? Did you keep working if you felt okay? Did you make changes to how you live/ what you do/ eat - anything really. If you stop working what do you do with your time? It just feels like everything I had planned for this year and next is out the window and I don't even know if I will still be here after that anyway. I know there will be lots of different experiences so just hope to hear some back.  

  • Hi cath, even though im having hormone therapy im still under oncologist. Last month i was told to stop my meds for 2 months to see if i felt better as been feeling rotten since starting last meds couple of years ago, i was alot better off meds then went on again and feeling ugh, so off again on oncologist orders despite my cancer coming back, its up and down like a yo yo but luckily i mostly feel OK, and can manage daily chores sometimes slowly. 

    Hope you can can get more of your old confidence back. 

    Billy 

  • Hello Billy, hello Cath

    Very proud of you Cath. I have had many occasions when I have felt similarly. And you did yourself proud. Excellent work.

    It doesn't hurt to question things does it?  My curiosity has cwrtainly helped me.

    And, although the medics do their best they don't know everything. They don't know you, but I'm sure they're getting your number now :)

    Every person and every cancer is different surely? So I feel each case deserves taking on its own merits. Good for you that you asked that old "are you sure?" question - I have found it very useful.

    Love and hugs,

    Mary

    Xx

  • Hi Mare,

    Thank you for your kind words. I just thought you've just delivered this devastating news  and now you are telling me you will not be giving me any chemotherapy as I  have no symptoms. I honestly could not believe what I was hearing. I was stunned for about a minute second let him finish his sentence then I went in for the kill. He kept asking me what my job was which had no relevance. I went in with a positive attitude to a devastating diagnosis and prognosis. I thought how dare you try and dash my spirit, and when he handed me a box of tissues when I wasn't even crying I eyeballed him and said I don't need a box of tissues I'm extremely sturday, and what I needed from my MDT was to know they are onboard and not writing me off. I also told him I will be included in my treatment plan. I think he got the message but if he never he won't be my oncologist for long, sorry for the long winded rant, 

  • Yippee really well done and so positive..big clap and cheers to you. 

    Billy 

  • Hi Billy,

    Thank you. Although I had cancer 10 years ago it was a stage 3 was operated on and had ajuviant  treatment. 
     

    I've no experience with stage 4 recurrent not operable and not curable. Maybe I'm nieve but is it the normal go to that they don't start chemotherapy right away to reduce the cancer tumours and wait 3 months to see if they grow? That's what I need to find out pronto, 

  • Hi from being diagnosed blood test to starting treatment i was 4 months of having different scans tests and biopsy. 

    Billy 

  • Hi Billy,

    From my first x Ray and first Ct scan which found abnormalities to the second Ct scan with contrast, then a biopsy to seeing the oncologist on Tuesday the time frame is 5 weeks. 
     

    My main concern is he wants to wait 3 months to see if the tumours grow. 

  • Hi,

    there is no treatment plan. The oncology st said he's not offering me any treatment as I've no symptoms!!!

  • Hi Cath, so how do you feel about that ,are they really going to wait 3 months before they see you unless anything changes ?