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I was diagnosed with incurable cancer at the start of Jun3, and have subsequently had 4 of 6 chemo sessions. I have oesophagul stomach junctional cancer (small cell so relatively unusual) with liver mets. No other spread and all tumours are responding well to carboplatin and etoposide, with lymph nodes having reduced swelling.

What I struggle with is the incurrability, and what that means, they can't tell me as treatment is ongoing. I have a wife and an 11 year old (I'm 53), and whilst accepting that this will end my life, I struggle with the not knowing. 

After the 6th session, I may need radiotherapy dependent on tumour size and then that's the end of treatment. I will be on 12 week scans and when things get worse, then I suppose I may b3 offered further care, but my nurse team won't talk about that yet.

I am focused on recovery, I am healthy and fit, coping well with chemo and accepted the diagnosis. I am focusing on the here and now, but also living life as normally as possible, I am off work but will be back in Nov. 

Any suggestions or help welcome on 'dealing with it".

Thanks

Liam

  • Hi Liam

    Sorry you have had to come here, though you are most welcome.

    How does one deal with it, every one is so different, in their approach, a hard decision.

    From day one, i  told, my children, and husband, do not smother me, as i will think there is some thing wrong.

    I bet at times, they would have liked to, but with a pillow lol.

    I carry on like, there is nothing wrong, have my of days, but few and far between.

    I looked at it, i have done everything, that is asked of me

    regarding treatment, and i cannot change the outcome.

    Treatable though not curable, i have done chemo, immunotherapy, and radiotherapy i asked what happens, when and if it  starts to grow, back on chemo.

    I was diagnosed 7  years ago., its your oncologist job, to do everything they can for you ..and they will, i have a different cancer to you,

    Others will pop in and advise you, i can only go with the way i looked at it.

  • Hi Liam, I  am having palliative treatment. I was diagnosed with stomach cancer last October started first chemo in November Capox had five sessions but felt too unwell to go further. Began Forfilli chemo in March. Have had a few set back mainly to do with my blood. But will be having my 9th session next week and only 3 more after that, then a scan! Last scal showed no growth or movement so here’s hoping!

    as far as being untreatable just try to ignore and hope treatments are keeping Mr C at bay and that in the meantime new treatments can be offered, be positive and know it is what it is and today is gift so enjoy it. Be honest with your oncology team on how you are feeling both physically and mentally, there are always options. There is a chat group on here specifically for us having palliativecare, you might like to join. 

  • Hi Liam, I am 54 and diagnosed a couple of years back and been on treatment for a couple of years.  The young people are 19 and 22.  Target 1 is to see the youngest graduate.  

    Friends across this forum frequently mention learning to "live with the cancer".  Maggies run courses on this very theme.  

    For myself, I think accepting the uncertainty is key.  It is weird knowing what is likely to cause your own End, but it is only that - "likely".  I could have a car crash tomorrow.  

    I try and stay one step ahead of the treatment. I know the likely outcomes and how the approach may change if each scenario occurs.  It gives me a sense of control, even though in reality I have none.  

    I think you're on the right lines already because it's this ->

    I am focusing on the here and now, but also living life as normally as possible

    Also time off work is good.  I did that 6 months after I started treatment.  I read loads of books and thought about cancer all the time before realising I couldn't go on like this!  So I made a huge effort to do nice things, get out of the house, get some me-time.  Then went back to work 3 days a week.  It was made easier by the fact that despite a temporary dip, the treatment progressed well.

  • Hi  

    Hello Liam, well done on posting and welcome to the group. It took me a while to get used to being stage 4. My oncologist said at the end of treatment that there was no sign of active cancer but that doesn't mean it's not there. When cancer is systemic it can't be eradicated completely. However another champion told me not to focus on the stage as she had seen people with lower stages and grades die quicker than incurables. My specialist nurse also said that aggressive cancers respond better to treatment. 

    I deal with it by not looking further than a week ahead. I retired on ill health and keep busy with the things I like to do. My profile is on if you would like to read. I had counselling to help me make sense of it all. I have lost a lot because of cancer and think of my life in terms of 'old me and new me'. My life now is very different but a lot less stressful. I read a lot and recently read a book by Gabor Mate - When the body says no - the effects of hidden stress. It was interesting and made a lot of sense to me. I can also recommend Radical Remissions by Kelly A Turner, the stories are rare but it gave me hope when I had none at all. Hope I've given you some ideas and food for thought.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Thanks for the reply. I would love to retire on ill health, but I still have a substantial mortgage left, so I'm financially stuck, however I do enjoy work. 

    Staging is an odd one, my Upper Gai team said the same, it is aggressive but the response to treatment has been equally as aggressive and I've seen positive reductions. 

    L

    • I've gone and done a Dr Google and have sent myself backwards 6 months. Small cell cancers with liver mets is an aggressive cancer and survival rates are gernally less than 12 months. My oncologist hasn't told me this as still having chemo, but I will talk to them after final chemo.  I am suddenly so scared and upset. I'm 53 and have an 11 year old lad. I've been OK till I read that article, had hope as chemo is shrinking tumours.
  • So, I googled mine, metastatic renal cancer and I think it said 2 years.  Ah!  Shut down the laptop straight away and change the activity!  I've already had one of those years and my onco is delighted with my response and he's got the treatments to try next too.   Dr Google is for Mr/s Average with a wide range of medical history on data from 5 years ago.  It's like trying to predict the future without a crystal ball, or no foundation.  But as you can see, we've all done it.  The takeaways from those web pages in your brain now belong in the bin!

  • Well  where to start.... Dr Google is out of date and not always factually correct. I remember doing a Google of words on a discharge letter after my second op and I thought well, that's it, that's me finished, I'll not see Christmas.

    I completed treatment and expected the cancer to return straightaway, it didn't. I'm  one year on from my last chemo. My cancer is grade 3 aggressive. I asked my oncologist for a prognosis and he said 2-3 years but I could add the post treatment time to that.

    The chemo is shrinking your tumours, that's a good sign. Are your cancer pains and symptoms receding? Although I was wiped out with the chemo my pain had stopped and my mobility improved. 

    Ring your specialist nurse on Monday or ring the Macmillan helpline, this is the link https://www.macmillan.org.uk/about-us/contact-us

    Google is not accurate, it is an overview. Look at it if you want to but don't take it as correct about your individual situation. Trust your medical team and be guided by them. Relax and enjoy your weekend with your family.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Thank you. I have no side effects from chemo, all issues caused by the tumour has gone. I have no symptoms of cancer, i can eat normally and no pain, on no medication. Tumours have receeded and lymph nodes have reduced, some back to normal. When I write all of that I have hope!

    Then I read something and lose all hope.

    Need to focus on what team tell me, and how we move forward....

  • Yep!  They have your back.