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 Rovay welcome to the forum the club nobody wants to join. There is quite a lot of stage 4 people on here alot quered and gone back to as normal as possible life (we call it the new normal).

    I've completely different cancer to you so i can't say alot about yourself. 

    Mine was prostate gone to lymph node's pelvis spine, ribs and lung.  Diagnosed feb 2016, i had all treatment offered including chemotherapy, had a very understanding boss let me come in to work when i could, (metal fabrication and welding).i kept working couple of years till my wife started falling over at home she has dementia but very independent. So i became her carer we both have good and bad days but just keep going and keeping positive helps. 

    I was diagnosed at 64 just thinking about retirement and a good holiday somewhere nice. 

    Hopefully others will join you soon with their stage 4 stories .

    Ps if you can keep working it'll keep you occupied and something to concentrate on .

    Billy 

  • Hi Billy, 

    many thanks for your reply - it is amazing to me to hear the length of time since your diagnosis, that is so encouraging. I totally agree about keeping occupied, I love my work  I'm just not sure how the treatment will impact on me and my abiliity to work yet. Here's to more good days!

  • Hello Rovay,

                       sorry to read of your diagnosis, it comes with so many uncertainties. and Its those that most feel so challenged to deal with. As you actually work through them most cope surprisingly better than they first imagined.  Thats not to say that things do not get tough, but that they surprise themselves with their own inner resilience.

    As for the changes you need to make, the main thing is accepting they will happen and embrace them in a positive way rather than fighting against them, l found that some were actually beneficial and continued to be so after my Stage 4  bowel cancer treatment was a success.

    It certainly helps to keep working and having a purpose, l was fortunate enough to be self employed so was able to adjust,  as a livestock farmer and guesthouse and hostel operator this meant working every day and changing the timetable to fit around my levels of energy. l certainly attribute my success to this as opposed to just sitting around feeling terrible, you feel no worse for doing things really, just operate to the edge of your capabilities.

    Do what you can do when you can do it, accept that planning shrinks into the background tucked away safely for future use, and recognise that flexability and spontaniety are positive attributes that can be used to good effect.

    Make the most of everyday and repeat,repeat and repeat and view every little win as a big success, in time they can all mount up towards a positive outcome,and l hope that all your little steps take you to a successful destination,

                                               David

     

  • Hi David, thanks so much for your thoughtful reply, there is so much there for me to think about, especially each small win building towards a success. Certainly spontaenity appeals too! You sound pretty busy with all of those occupations too!! best wishes to you. 

  • Glad you are getting plenty of replies and helpful advice from people on the forum, hope you're feeling more sure about things. 

    Billy 

  • Thank you very much Billy:happy:

  • Hi sorry to hear about your news. I was at hospital today to find out results of a biopsy. Unfortunately my cancer has returned after 10 years and is stage 4 and apparently inoperable which I don't accept as the last consultant told me if we could shrink the Tumours he would. It's small bowel cancer recurrence. It's in both lungs, pelvis and abdomen. I'm retired but I plan to keep living my life and not wasting one moment. Sending big hugs to you. It's a pretty crap club to be in . 

  • I'm so sorry that you have had that news today - what a shock for you Cath. The other replies above do show that there is life with a Stage 4 diagnosis though and that has given me some more hope. I hope you get more information soon about a treatment plan Cath, take good care x.

  • Thank you for your support. I have a consultation with the oncology team on Friday. Everyone is a bit shocked at such a late presentation. The consultant said it usually comes back within a two year period never as long as 10 years. Think they were a bit shocked with all the questions I was firing at them. Think they expected me to be crying I left that two my husband. I did ask so this is going to kill me , and the answer was yes it's not curable. His delivery was pretty poor but at least he was honest. 

  • Hi  cath in 2016 i was diagnosed with cancer told uncurable 2018 told palative care im still here still fighting still positive, despite odd bump in the road. 

    My uninvited guest still hanging around sometime being a pain but we manage.,im still a carer for my darling wife sometimes feel like a butler fetching and carrying while she sits watching TV, but im sticking to a promise i made to her before we got married over 50 years ago to look after her when we got old with Brenda being nearly 14 years older than me  .she was worried about me leaving her for someone younger  .

    Hope things work out for you when they sort treatment options. 

    Billy