Recently diagnosed with Adenoid cystic carcinoma behind my right eye. I’m undergoing a craniotomy and eye removal on Tuesday, can anyone help me to find anyone on here who has had a similar experience ???
I just wanted to drop by and say we will be thinking of you on Tuesday and hope that the surgery goes well.
I noticed you have done a little forum search and that you have responded to others who have been affected by adenoid cystic carcinoma. I hope you won't mind but I have changed the title of your thread from ADCC to adenoid cystic cacinoma. This will ensure your thread can be spotted more easily by others.
I found this thread for example by [@Alidee1] which might be of interest to you so don't hesitate to respond if you wish.
If you have any questions prior to your surgery, our nurses are available Monday to Friday from 9am to 5pm and you can give them a call on this free number 0808 800 4040.
I hope everything goes well for you on Tuesday. Do come back here and let us know how it all went.
Hi Shane1982, I hope your surgey went to plan and that you're recovering nicely. I was diagnosed with ACC back in Dec 2016 and had surgery and radiotherapy at the time. Unfortunetly a lump i found under my tongue confirms that the cancer is back. I am currently awaiting on an appointment at the end of April to go onto the next steps. If you want to chat about your experience etc i am interested in how you came about finding it and was it caught early. I know yours is in a slightly different area but i'm finding it so difficult to find people with similar cancer to chat to about it. I am 35 yrs old so its quite rare in my age as well as the cancer being quite rare.
I’m always up for a chat, I’m 36 and this is my first bout. I recently found #ACCwarriors on instagram.
I find the more people you find and link up with who have acc the better. Please contact me if you want to chat. I might be juggling a baby but I’m happy to help each other through this nightmare.
Thank you so much ill take a look. I totally agree. Its a shame so many live over in the states. Where are you from if you dont mind me asking? I live in Leeds, West Yorkshire.
Hope you have lots of support yourself and not juggling a baby alone!!
