Adenoid Cystic Carcinoma turns up in body parts other than cheeks

Thanks to Molly's comment on my last post, I have another blog to add to my blogroll on the right side of my page: http://mebrawley.blogspot.com/. I know some of my readers might know of ACC of the breast survivors, and it would be great if we could please get them in touch with Molly, who has just started her trek along with us down ACC lane. I am so glad Molly had someone really strong and stubborn on her side (in the form of her mother-in-law, Ginger) - we all need a strong advocate during those trying times. I love my husband dearly, and he is the best supporter in the world, but my best advocate is my friend Siobhan. Let's just hope I won't have to enlist her aid again any time soon.
The docs say that if anything shows up in my next MRI, we can do a PET. When I said that PETs don't usually work well with this type of slow cancer, he agreed, but said that was the next best plan of action. If it took me 3 years to grow a tumor of about 2mm in size that finally caught the surgeon's attention upon opening me up (when the CT scan missed it, and the needle biopsy missed it), I have little faith in scans of any sort until the critters are big enough to not be missed. He also said that pain is not usually associated with this type of cancer. Well, no words here that I can print - let's just hope he could tell my facial expression as I remembered the long nights of pain during those 3 years, relieved only by cutting out the tumor last June, that I might not believe him at that moment.