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A terminal diagnosis is only made in the end-game, when they can give you an estimated time frame.  All of us on here are incurable, but treatable.  The treatment might be "nothing" or "monitor with regular scans", but it has the objective to "manage", because science and stats have shown that leads to the best outcome. 

Plus, there is a school of thought about whether cancer is ever curable.  When people are given a "cured" outcome it's that there is no evidence of disease.  But we know that people who have had cancer, there is a higher risk it can return than with non-cancer patients.   My onco is in this camp.  

I'm not sure statistics help.  I'm not interested in stats.  They are just depressing and based on average experiences and nothing specific to me.    

Try and think of it as "living with cancer".  The cancer doesn't define us.  We all carry on day-to-day.  The cancer might come back, it might not, but we can't influence that.  

You can phone up the helpline and chat about this.  They are all lovely and very skilled.  I've phoned before.  

Hi PT

I am really sorry you have pain and are suffering both physical and mental health consequences. It must be really difficult to know you spent time being misdiagnosed. Unfortunately we can’t change the past but it would definitely help to get as much support as you can to deal with what’s going on in the present. 

As far as I know, ‘Terminal’ cancer means exactly the same thing as incurable cancer, metastatic cancer, or stage 4 cancer. Cancer cells have travelled from their original site to an organ such as liver, lungs, brain or bones. If you haven’t been given a timescale I would work on the assumption that the end isn’t imminent.

People can also get hung up on the word ‘palliative’. It’s used to describe treatment for incurable cancer. It’s intended to alleviate symptoms, improve quality of life and perhaps extend life. Modern treatments, in particular the introduction of immunotherapies, are making a world of difference for some of us incurables, making it possible to live good lives. In my case (metastatic TNBC that had spread to my liver), I am currently enjoying a period where I have not needed treatment for over a year but am monitored. I don’t imagine this is a magic cure, but if I am lucky it will remain durable. No one can tell me - there isn’t much data around yet and in any case that would just be general statistical data, not specific to me.

I find it helps to think of myself as incurable, not terminal. Living with a health condition that may need to be managed, but not yet knocking on death’s door. I am sure I will know if and when things start to change. I also have never wanted a prognosis. I am not sure how anyone could make an accurate assessment anyway, but I would rather not have a ‘use by’ date in my mind. 

Hoping you can find some support. 

Well said and thankyou for re affirming what I should remember

Good morning PT, a very warm welcome to you. All the previous comments are so true. It does take a bit of time to get your mindset in order after an incurable diagnosis. I am very appreciative of everyone in the monthly chat group and their excellent advice and general chit chat. It’s good to see that we have not lost our sense of humour.  You might like to try it. 

Hug from Angie and feline friend Lilly xx