I'm sorry you were diagnosed with this rare cancer GB1976 but the good news you've received from your scan results sounds really encouraging and hopefully the operation you've just had will be successful in getting the clearance. 

Unfortunately I couldn't find anyone on the forum at the moment who has had this type of cancer but we do have a very supportive team of cancer nurses you can talk to about this on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very knowledgeable and will do all they can to answer your questions and give you any information you're seeking about your diagnosis.

You may also be able to get further information and support from Salivary Gland Cancer UK.

Kind regards,

Steph, Cancer Chat Moderator

Hi,

I was diagnosed with adenoid cystic carcinoma of the breast in August. There is a good website for information called the adenoid cystic carcinoma research foundation. It is worldwide but they have a list of recommended doctors which I have only just discovered and lots of them are based in the UK, a lot of them say their sub speciality as well as many of them are just head and neck. I am not sure exactly how involved in ACC many of them are but I also found a website for a Dr in Manchester who focuses all his research on ACC but I am not sure yet if he is just involved in head and neck cancers. Hope you got clear margins, I got them after my second surgery. Good luck

Hi GB1976

I was diagnosed with ACC in my right thigh in 2018 - original location was right parotid.  The reason you can't find anyone is there may just be 2 or 3 of us world wide - ACCOI told me of just one at the time of my diagnosis.  Happy to help or answer any questions.