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Adenoid Cystic Carcinoma

Posts: 1
Joined: Aug 2007

Does anyone have any information on adenoid cystic carcenoma when it occurs in the ear?

jkinobay's picture
Posts: 254
Joined: May 2007

Sorry, I do not have info for the ear. But I did recently have a neck cyst removed just below the ear that was diagnosed adenocarcinoma. A second Pathologist opinion though ruled that out saying adenocarcinoma in a cyst is extremely rare and not likely to be the primary site. In my case the second opinion indicated an HPV16 tracer that usually ties it to a tonsil. And, guess what, on 7/25 they went in to take a look and found a very inflammed tonsil, removed it and the biopsy showed it to be regular squamous cell carcinoma and it was the primary site. All good news of a fashion because it will supposedly respond well to treatment. So, bottom line in my situation anyway, you may want to get a second opinion as to primary vs. metastatic. I hope it goes well for you. Please let us know as you progress. This Discussion Board is filled with very compassionate, knowledgeable "been-there-done-that's" who can help you as they have really helped me. Be well, and God Bless.............JK

jkinobay's picture
Posts: 254
Joined: May 2007

Hey Kim.............how are ya doin?

Posts: 6
Joined: Jan 2008

Not in the ear but in the trachea. We were told that this is a very rare cancer.

Posts: 5
Joined: Feb 2008

I was diagnosed with it in 2006 while pregnant for the first time. I have had full body ct scans, mri scans, pet scans, and a lumbar puncture. For me the primary is Adenoid Cystic Carcinoma of the Left Maxilary Sinus. Like you Deb, we too were told that it is quite a rare cancer.


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