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Oesophageal cancer

Grasshopper
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Hi,

My Dad is 59 and has been diagnosed with Oesophageal cancer (a few weeks ago). Unfortunately by the time they diagnosed him he hadn't been able to eat for months and has of course lost a lot of weight. We're told ithe tumor around 5cm long so even swollowing the milkshakes the hospital have given him is difficult. We did receive a letter from the surgeon after his CT Pet Scan in which he confirmed he isn't well enough for surgery but that he was M0 N0 and T0. Looking this up on the internet we were thrilled that this was the best case scenario given the diagnoses. Having gone back last week to discuss treatment we were told that the letter was a mistake and it has spread to his lymph nodes. He also has a 'suspicious' spot on his liver for which he will have an MRI scan to see if it is cancer or (fingers crossed) a result of years of heavy drinking. I know the diagnoses isn't good and that if it has spread to his liver it will be terminal. I live in Devon and he lives alone in Buckinghamshire so once his chemo or radical chemo is complete he's going to move in with myself and my partner. I suppose I just wanted to get an idea of what his care needs will be realistically. The Dr's and nurses are great but I can't stomach anymore 'think positive' advise, especially given their mistake with his diagnoses letter...

Thanks

Clare

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    Hi Clare,

    Whatever you do, try not to jump to any conclusions ... good or bad! 

    "Think positive" advice can be so frustrating, I know, but there is always a chance that the suspicious spot on his liver is something less serious than a secondary cancer. Even if the final diagnosis is stage 3 or stage 4, that isn't necessarily a terminal diagnosis. I've been living with stage 4 inoperable and incurable oesophageal cancer for almost 5 years now - "terminal" has no formal medical definiton but usually means that you're likely to die in under six months. 

    Good luck!

    Dave

     

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    Hi Clare,

    My hubby (same age as your Dad) was diagnosed Dec 2017.  He was scheduled to have surgery  in June but the Pet Scan just prior showed it had spread, making surgery no longer an option. Since diagnosis though he has spent apx 3 months in hospital (longest stay 3 1/2 weeks, just came home today after another 3 day stay.  Neil has lost nearly 1/3 of his his pre-diagnosis weight.  Eating has been as issue although this has improved somewhat due to radiation and chemo.  At one stage all his food was pureed, but now he is able to eat more normally, although only small amounts.  We have district nurses come twice a week usually, although at times they have been everyday when needed.  He doesn't have the energy to do anything much and mainly sits watching tv or reading with frequent naps.  He also no longer drives apart from driving 2 blocks to get the paper on a Sunday.  You have Dave who seems to be at one end of the scale, my hubby at the other, so your father could fall anywhere in between.  I will say it, try and stay positive, your father's final disgnosis hopefully won't be as bad as you're thinking.  Take care.

     

    Sue

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    Hi Clare, my god I thought you was describing my grandad for a second. Exactly the same going on but my grandads 82. So unfortunate because he was fit as a fiddle just weeks ago out jogging 6am every morning. My grandad has a peg fitted in his stomach which he feeds from now (ensure drinks) swallowing isn’t an option and he has now lost his voice. He has this awful flem the tumor produces all day/night long. He doesn’t get rest with it. Constantly spitting this flem up, unable to swallow. After being told no more treatment is available and it’s now spread to many lymph nodes we decided to read in to cbd (cannabis oil) but unfortunately because of steroids my grandad takes to control other illness, he cannot have the oil. 

    I just wanted to share with you my experience with my grandad and what he’s currently going through. Radiotherapy didn’t really work for him, made him extremely tired and run down. Fingers crossed for your dad xxx

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