Hello Community, I am really eager to try and understand about this rare cancer, I understand it can occur differently in individuals, however there must be a trigger something in our choice of lifestyle that may trigger the cancer gene?? I may also be delusional but worth a shot 🙂 I was diagnosed with ACC in November 2012 after a biopsy in late October I think I had four days to process what was happening and my surgery came an went and they had to remove my entire eye the works!! Very angry because I have no answer as to Why? How ? My tumour was 30mm x 15mm in my lacrimal gland, for almost 5 years I had pain in my crease of my eyelid and at times my eyelid would droop I had sharp shooting pains and shocking migraines but these symptoms progressively became worse early in 2013. I had my surgery on Nov 27, I am adjusting slowly to monocular vision which is more daunting than I thought but getting there, I also have 3 kids under 12 and I am only 37 years old! I am interested in all that have been diagnosed with this cancer to see if there is a common theme amongst us all that may be a trigger ?? I was a energy drink junkie 3-4 cans of V a day for about 4 years, that's the only thing different that I was doing !!! Staying positive because I choose Life Looking forward to March ACC in Brisbane gathering - thanks Sylvia for posting !
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Of all those I've met online who have been diagnosed with this cancer there doesn't seem to be a common factor which may have triggered this ,except perhaps stress . The question has been raised in the group to which I belong and which has over 100 (mainly from the U.S.A. ) . I am sorry that this has happened to you and in such a huge way . So far none of the research done has linked Adenoid Cystic Carcinoma with any lifestyle factor . Personally , I don't believe that one thing only causes cancer in any individual . There are so many variables .At first I'd thought that it must my own fault but mostly I don't even wonder why . I just wish it never happened and that some day soon a cure will be found .
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How are you now ? I haven't been on this site much lately . No lifestyle factors have been linked to this cancer . The question comes up from time to time amongst others in groups of people with this cancer . I've been thinking about you on and off .
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