How can I find out what “treatable but not curable” actually means in practice?

It of course depends on the individual patient which treatment or therapy options the MDT is referring to and with what aim. Treatments may be palliative, that is with the aim of relieving symptoms, or therapies given with the intent of stabilising or suppressing disease progression and thus prolonging survival. 

For stage 4 esophageal cancer, chemo/immunotherapy is effective at prolonging survival for around 2 years. This is, as you say almost good news, in the context of this dreadful disease.  I have read several accounts in this forum from patients and their families where this regimen has proven to be effective and survival has exceeded all (statistical) expectations. 

wishing the best outcome for your husband x 

Thank you for your response Rosiee.

Sadly, the 2 year kind of timespan is what my research has led me to expect, although I, of course, hope for more. One question that then raises for me though, is why the NHS spend all that money on immunotherapy for 2 years when it’s not really going to lengthen things.  (It seems to be the chemotherapy that’s improving his eating as the first improvements showed before his immunotherapy started.)  That risks sounding very cold and callous, but it isn’t - it’s just a long time of working with people who count pennies and cost-effectiveness.

The other thing it raises for me, is that my husband husband has gone very quiet, and just sits around playing computer games or scrolling social media.  This is in many ways totally understandable, even though they’re things he never did before his diagnosis.  I know he feels grotty during his chemo weeks, but he says that he feels fine/‘normal’ on his inbetween weeks.  I’ve suggested that maybe we go out and do things in the good weeks.  His response was that his life is on hold until his treatment finishes.   Well, if the expected lifespan is 2years, and his immunotherapy treatment is 2 years, then there ain’t going to be much life left after he’s stopped putting it on hold…  I don’t know how to say this to him gently, and I don’t know how to alert those responsible for his care, that he might need help to discuss this…

My understanding.  Caution: I am not a medic. Is that it is the immunotherapy that extends life expectancy from months to years. Otherwise NICE would not agree that the NHS fund it. The characteristics of your husband’s tumour make him eligible for such treatment not all patients are. (That is what I thought you meant by “almost good news”).

Treatment options have to balance quality of life with quantity of life. How your husband feels and his mental health are important with respect to his quality of life. These are difficult conversations and family members are not always ready to talk about issues at the same time. It is something you could raise with health professionals as cancer affects the whole family not just the patient.

Take care x 

Thank you again Rosiee .  It’s helpful to talk to someone.  With my breast cancer, there was always a Macmillan nurse that we could ring anytime, but with my hubby’s cancer there isn’t, despite it being the same hospital, using many of the same departments and people.  So me being able to speak to someone to express my worries is incredibly difficult, maybe even impossible.

Btw, the “almost good news” was initially about the fact that the impression given by the upperGI consultant who confirmed the cancer - he painted a v bleak picture, and every question we asked him was simply answered by “ask the oncologist” except for one, to which it has transpired that he gave an incorrect answer.  As frustrating as it would’ve been, he would’ve been better saying “ask the oncologist” to that one too!  The oncologist is a lovely lovely man who spent so much time with us initially, answering the questions we had then, and we’re hugely grateful for that, but I have no idea next time we’ll see him, so we can ask supplementary questions.  I do go to the oncologist with my husband, but partners/good friends are not allowed by the hospital to go to anything else except the very first chemo, so being able to raise anything ongoing with medical professionals is nigh on impossible.

Thank you - I fully understand that there’s no need for you to respond again - thank you for your initial responses - they’ve meant a lot