I'm writing in regards to my mother. In 2003 she was diagnosed with Mucoepidermal Carcinoma. She had a salivary gland removed and did 5 weeks of radiation. In 2004 they found more of the cancer in her lower jaw. She had major surgery to have it removed and a jaw reconstruction. She had been complaining ever since her surgery 10/04 that she wasn't feeling right and it felt as if she had a ball in her cheek. She had CTs every 3 months and each time the scan noted a possible recurrence. Her doctor did not think it was anything because it never changed in size. Wait and see attitude. All of us just figured that it was a result of the surgery (scartissue) and that was the way she was going to feel from now on. The doctor finally set her up for a biopsy. My feeling is that he did this to ease her mind once and for all. Well, much to his surprise and ours it came back positive. He called my mother to tell her the news and immediately scheduled surgery. She has to go through the same surgery. They have to remove her newly constructed jaw bone take the cancer out and the reconstruct her jaw again. If anyone has had this surgery it is awful. My concern is that this is going to be an ongoing occurrance for my mother. The fact that it has come back 3 times in 3 years is cause for alarm. Can anyone give me some insight into this type of cancer.

I am personally of a mindset that we, cancer patients, should insist on biopsy, either surgical or needle, when tissue is in question on comparative CT scans.
Darrell

Darrell, Thanks for your reply. My mother had her 3rd Surgery on Jan. 31st. at Roswell Park in Buffalo.Again the 3rd surgery in 3 years.It was quite radical. They wanted to get a good amount of tissue for biopsies because the cancer is skipping along the nerve and leaves clean spots inbetween the bad. They had to remove the newly constructed jaw they put in 10/04, as well as cheek tissue, tissue from up behind her nose and part of her soft palate. He took her breast muscle and used that to fill in her cheek and reconstruct her palate. However, the palate flap died back and she now has an opening which has affected her speech and she has to eat through a PEG tube. If all goes well she shoud be able to get a device to wear that will help her speech and hopefully allow her to take in food. The problem we may be facing now is the possibility of there being more. We went to see her local ENT doctor for a problem with her ear on the surgery side and while there he found something in her mouth that he thought should be biopsied. The results should be in in a few days. If it comes back positive I have to say that her mouth must be full of cancer and in order to get rid of it she would need a complete dissection of her mouth, neck etc. She says she does not want anymore surgeries. Her doctor in Buffalo says that Chemo does not have a good success rate with her type of cancer. Mucoepidermal Carcinoma. However, he will try it if necessary. She is very healthy in every other way. Can anyone give me some insight as to what lies ahead if we cannot get this cancer under control?

hi i'm sorry for you and your mom. This is a very difficult.cancer. My mom had the same. She had her surgeries at sister's hospital in buffalo, ny. She also had the flap it really changes your whole body. She had to have scar tissue removed 3 times. Time will tell, there are no answers. They did get her's out and she lived many yrs. take care Marie