Acc trachea

Hi I've just been diagnosed with acc in trachea      seemingly its been there at least since 2018 although obviously  grown cause I have symptoms. I'm trying to decide wether to have gruelling surgery or radiotherapy. I don't know how long I have actually had acc & symptoms getting worse, I understand not a lot of info on statistics but am trying to do some research. If anyone has had the op or radiotherapy could you let me know how you got on.

  • 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

  • Hi Catherine thank you so much for your reply & advice. I have explored other options of treatment but have been advised & have resigned myself to the fact that the op.is the best option. 

     

    Thank you once again