I'm new here

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I found this site just when I was convinced that there was no help out there for people like me, I am a 51 year old female, non smoker or drinker, but one week before Christmas I was diagnosed with Squamous cell carcinoma of the Oesophagus, for 8 months and 8 Dr's I had been telling them that something was very wrong, they all had an opinion, they were all wrong, eventually they settled on the diagnosis of a Hiatus Hernia, I disagreed with this, some how I just knew that was not what was wrong. Sadly I was right and take no pleasure in that fact this time, there has has been unbelievable delay, total mix up with appointments and tests, and incredibly I was under the care of a hospital already as I have CLL, (a form of Leukemia ) but even those Dr's missed this, recently a 2nd Endoscopy revealed that I have an 8cm tumour growing the length of my gullet, I had a Pet scan on the 18th and a meeting with the Consultant on the 22nd to discuss whats next, that is of course if there is a next, if the Cancer hasnt spread and he considers this tumour treatable, fingers and everything else crossed it is.

Anonymous
  • Hi Agi

    Welcome to the forum but I know this is the last place you want to be.  From the sound of things you’ve been going through a terrible time with delays and mix ups and this would have further caused you anxiety and stress.  However, the consultant has told you that the tumour is treatable, which is very good news.  Did he explain how it would be treated?  I too had a 7cm squamous cell carcinoma of the oesophagus and had surgery with curative intent almost three years ago.  There are quite a few of us over  in the Oesophagus (Gullet) Group, both patients and carers, and undergoing various treatments, so if you feel like joining us there at any time, I’m sure you’ll get lots of info and support.

    All the very best and good luck

    Crystal xx  

  • FormerMember
    FormerMember

    Hi Agi

    Although I didn't have the same cancer as you, I was also misdiagnosed 9 months before my cancer diagnosis. Fortunately all my cancer )bowel) was removed and I will soon complete 6 months of chemotherapy. As Crystal has mentioned, join the  Oesophagus group as they will give you all the advice and support you need for your particular cancer. Please let us know how you get on.

    Angela xx

  • FormerMember
    FormerMember

    Hi

    Welcome to this forum, i too have CLL (diagnosed August 2009) along with Crohn's.

    Sorry to hear you have this added worry & grief from the docs.

    Dave