Hi and thanks for your post,

I am sorry to hear about your situation. I can imagine that it is hard finding out much information about adenoid cystic carcinoma as it is such a rare cancer. 

Your doctors will be deciding on how to treat you, based on your own individual situation. It is interesting hearing what other members of the forum have been through but your cancer is specific to you. Any decisions will be based on how easy it is to remove the cancer surgically, your general health and whether there is a chance that your cancer has spread anywhere else. 

I am not sure whether the doctors have given you the choice of having surgery or radiotherapy. Do discuss the different options with them. As it is such a rare cancer you may find it helpful to look in to getting a second opinion. This may or may not be helpful in making you make a decision  about any treatment. Have a look at the information about getting a second opinion here.

There is some information written about ACC tumours written by NORD (National organisation of Rare Diseases) which you can see here

The charity Macmillan have some general information about this cancer and how it is treated which you can see here

If you want to hear from other members do keep an open mind as every one's situation is so different but you may find it helpful to post in a different thread on the forum.

Do spend time discussing your different options with your doctors to see what they advise.

If you feel that it would be helpful to chat this through with one of the nurses on the helpline then do get back to us or give us a ring.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Best Wishes,

Catherine