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Oesophageal cancer

Dannie150291
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Hi

My dad was dignosed with esophagus cancer last year in June. The cancer is T4aN2m1 (likely lung matestases) oespohagogastric adenocarcinoma according to the letter sent to GP.
 

I was just wondering if anyone could explain what this means exactly?


My dad is not the easiest to get information from and he is also pretty hard of hearing so when we ask how things are or what  the doctors have said he just says "no idea,I didn't understand them" or will just say "all good" and he is not one to ask questions at all!!! so as a family it's frustrating that we don't know exactly what's going on and I can't imagine it's good for my dad either. 
 

 My dad seems to have had a few scans in the past few months yet never had any results from them. We ask him if he has chased and he just says yes but nothing else is then said. 
 

My parents are not together anymore and my dad lives with his gf. I live 2.5 hours away so not around as much as I would like to be as I have a young family and work full time but I try be with him as much as I can. 
 

I can't help but feel if I was living closer then I could help him and attend appointments with him to help him and ask questions that he wouldn't. 
 

as a family we have taken his dignosis as a terminal stage 4 cancer which is not curable as it's spread to his lungs I believe. His chemo is just to help him be here longer. He is currently having chemo every 2 weeks and has been since August 2020.He is able to eat and looks well and has weight on him again after first loosing lots last June. He is tired and gets out of breath and falls over at times as he looses his balance but we are guessing this is due to the chemo and just being weak from illness. He does have a bad heart too so his chemo has changed a few times as he was ending up in hospital with high blood pressure and being unwell at one stage his chemo was stopped because they were worried it would cause him a heart attack. 
 

He recently received a letter from his GP to apologise that they had accidentally prescribed him another patients medication since last year November! So we don't know if this has anything to do with his symptoms and side effects he gets. 
 

it's all a mess if I'm honest. No one knows what is going on. His chemo is due to end in august and they have said they will scan him to see how it's working. I'm guessing if it's not doing anything then they may stop? The good thing is he still has his hair, weight on him and can eat so hopefully it's doing what it should be.  He handles chemo well and only has a few days where he is sick and exhausted other than that he is doing good.
we have never discussed life expectancy and as far as I'm aware no doctors have given him a time frame but I have read max 5 years in most cases which is devistating but we hold on to the fact that everyone is different. 
I'm interest to know if anyone else is or knows someone with a similar story and how it has planned out for them. 
 

Thanks 

 

  • Offline

    Hi Dannie

    Trying to deal with the situation is a challenge at the best of times, but it sounds like the classic situation of only getting part of the picture which can be even more frustrating.

    But to answer your questions (and be aware I'm not a medical professional - I just have a vested interest):

    T4aN2M1 - T4a is the spread of the cancer and shows spread to other local areas, N2 is the number of lymph nodes affected (between 4 - 6) and M1 is showing that it has metasticised to other major organs). M1 - usually the marker for going on to the palliative route rather than M0.

    Now - like you say - everyone is different, including those who are dealing with the illness and how they deal with it and decide how much information to share with others.  This is where the frustration kicks in.

    But taking what you have said - Important facts 1) he is eating ok, 2) he is looking well, 3) he has put on weight, 4) He handles the chemo well.  Getting out of breath and losing the balance can be attributed to the chemo - depends what he is on - the platinum based ones affect the nerves, especially in the feet and hands.

    And as everyone is different - so it is true with the palliative treatment.  There are a group of us, including those on the palliative care route on this chat https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/osophagus-cancer-diagnosis. Feel free to pay a visit - we're a friendly bunch, with the occasional dark sense of humour thrown in.

    bfg

  • Offline in reply to bfg

    Thank you so much for your reply! 
     

    It surely is frustrating and I find myself googling different things constantly which is never ideal. 
    Thank you so much for explaining the medical term as this has really helped me understand his dignosis better in terms of the fact it has spread etc. So with my dad I'm guessing he is having palliative care then? It's all so very confusing like I don't even think my dad knows what chemo he is on but he does suffer with cold hands and feet and feeling cold often.  I want to get as much information out of my dad but at the same time I don't want his cancer to be topic of conversation all the time as I'm sure that's not easy nor nice for him as he is more than just a cancer patient! 
     

    we are approaching almost 1 year so we are so thankful my dad was able to celebrate last Christmas with us, his 57th birthday and my 30th this year as last year we weren't nor sure that would even be possible so every mile stone is a blessing. I now find my self worrying about it approaching a year and now I'm like will he be here for my daughters august birthday and sons birthday in November and Christmas. It's mentally very hard. 
     

    As I mentioned he looks well and is very positive menatlly which I think helps a lot! We took him out for Father's Day on Sunday and it dawned on me that what if this was the last Father's Day that we have him. He was very tired and out of breath walking to the train station which is only a 10 min walk from his home but he would say he was fine. Seeing how tired and exhausted he was was upsetting. During the meal he had to go toilet as he had hiccups and was struggling with his breaths so maybe he went to throw up as he then never ate anymore when he returned to the table. Thinking about that has now just dawned on me that maybe he is getting weaker and his throat is getting worse? My head just goes crazy with all this but it feels good to write it all out as I don't really discuss it with anyone as I'm not living near my friends or family. 
     

    Thank you ever so much for your reply x

  • Offline in reply to Dannie150291

    No problem at alll Dannie

    I've just realised that your Dad is 2 years younger than me.  :-)

    And you are right - Google is not your friend with this, and the landscape is constantly changing with new treatments being trialled all the time.  The treatment I'm on has only been approved for about 3 years now, but I believe doubled the 5 year rates.

    The non-palliative route is basically 2 months of chemo, 6 week break, major operation, 6 week break and 2 months of chemo.

    The complexities of each individual on how they respond to treatment means that it's a nightmare to try and work out exactly what is going to happen, which is why the statistics don't actually mean anything.

    Your philosphy is bang on though - he is more than a cancer patient.  He is on his own journey, and challenging though it is - he's dealing with it on his own terms, and that can be really difficult for you.

    In many ways it is easier for the cancer sufferer - it is, what it is and you sort of get on with it. 

    I look back over the years to great friends and family who never had a reminder to take full advantage of what we have, rather than what we could have, and once COVID restrictions are lifted and i've gotten over my 2nd round of chemo - then that's what we'll be doing and it looks like your dad is doing the same.

    Take the positives - he looks well and is mentally positive!  Trust me that is a huge plus, and as for his other issues - he is at least "out there" with his family. All of the symptoms that you've mentioned can be attributed to the chemo he is on, to the cancer itself, or just a damned awful meal  :-).

    The overriding message I've come across the other messages - is to "Make Memories".  Don't focus on what "could be" - it's like you said, don't let cancer define your dad - focus on what is!

    There are others around on the palliative care route who have been on it for years.  There is even one guy on our "chat" is now in remission nearly a year on and another who appears to have it under control to the point of operating on it (which is something I'd not heard of before). So there is always hope.

    cheers

    bfg

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