Esophageal cancer stage 4

Hi all, I am a forty eight year old husband and father who first had symptoms late August 2017. Food began to get stuck in gullet and was brought back wrapped in thick mucus, had endoscopy x2 and diagnosed with hiatus hernia and barrets esophagus but after months of trips to doctors and hospital and losing weight for fun due to not being able to eat. My wife insisted we go private for consultation to speed up treatment. The initial thought was Achalasia but more tests required, consultant pushed us back on to the and we began another wait for barium swallow, manometry which led us to believe I had Achalasia. Consultant then asked his colleague to take a look at me as he suspected achalasia more time passed waiting for appointment to be told the second consultants not convinced about the diagnosis as you cannot have achalasia and a hiatus hernia. I had to go to see him for further endoscopy he could look inside himself. I was then finally kept in hospital having lost 4 1/2 stone since November 2017 until hospital appointment on 9/4/18. I was told I had a large tumour on 11/4/18. I then spent 8 weeks on a gastro ward being fed via tpn having been told that I had secondary cancer in left lung , I had suffered what felt like pneumonia at Christmas but had not sought treatment as they hadn't helped with the eating problems, we asked consultant if lung spots could be an infection and was told no absolutely not. I was t2/3 n1m1?. 7mdt meetings and my wife and daughter and other family members fighting for treatment, after 8 weeks ion gastro ward I was transferred to another hospital for open esophagectomy. This was to be followed by adjuvant chemo radiation and 4 months of chemo. Operation carried out and believed successful but histology showed cancer was in 8 local lymph nodes of 24 removed. Had planning pet ct scan some weeks later and then a phone call to tell me to ignore treatment letter as I needed to see oncologist again, two weeks later another bombshell it had now spread to liver and as such is now incurable. Starting eox chemo tomorrow to hopefully give me more time but no guarantees . Without wife and daughter and a palliative nurse begging for treatment I wouldn't be here now.

 Love and best wishes to anyone suffering or affected by any form of cancer

 Bunny69

  • Hi Bunny,

    Welcome to the forum, it sounds like you really have been through the mill!

    Good luck with the EOX - did they warn you to avoid eating or drinking anything cold? It sounds like weird advice but I took to having a thermos flask of warm water with me at all times in case I forgot myself and swallowed something cold.

    Best wishes

    Dave

  • Hi Dave,

     I have been told about the cold drinks and am prepared, my daughter read your story and showed it to me to give us some hope at least. The introduction I wrote was the brief version as whilst waiting to begin treatment I was told I couldn't have chemo due to liver function being all over the place due to kabi bags I was put on, hence the operation came first. The secondary cancer in lung was indeed an infection. So glad to read your story and see you are doing well as it lifts me ahead of beginning chemo tomorrow. I am staying positive and putting weight on since operation and am hopeful I can stick around for a good while yet.

     Bunny