Hi all I was diagnosed in March 2020 with ACC in my trachea (start of the pandemic) I had a debulking and radical radiotherapy which left me with a few swallowing issues and still fatigue.
in June this year I was told that I now have nodules on my lungs. I was devastated to find I now have metastatic disease. Having been reviewed at MDT with the surgeon surgery is not an option too small nodules and too wide spread. On Friday I went to Christie’s to see Dr Metcalfs team and this is when things have finally hit home on how rare this is and how limited the treatment options are. am now trying to work out what this means and how I live with it.
and I have everything crossed that the team can give me some light at the end of the tunnel and perhaps find some targeted therapy
Any advice welcomed xx
