Hi everyone
My name is Tommy B
Hi Tommy
Glad you found this Web site. I have 12 15 year old boys 27 year old daughter with 3 grand children. I started my journey May 2005. Did you have to have Chemo or radiation? There is alot of information and support here. I hope you well.
Chris
Hi Rolf
From what I understand here:http://www.oralcancerfoundation.org/facts/rare/ac/index.htm, ACC and Malignant Melanoma is not the same.
But it seems like we had the same treatment. I also had to remove my top palate. Is maxilla the name of the bone plate I mentioned in my first post?
Anyway, I'm glad I found this site. Sometimes I feel like I'm the only one on this planet with this cancer form.
No, they did not cut my cheek. That sounds awful!
Sometimes I fell that life is unfair. In September 2005 my daughter was born, and then in February I had my diagnos. How cruel can the world be?
Physically I am well right now, the problem is that I must tell myself that I am well!
I am being checked up every third month, and so far, so good....
Tommy
Tommy,
there have been a few others here with melanoma so you are not alone, but it is fairly uncommon in the oral cavity. Welcome to the forum.
Hi Tommy,
Yes, the maxilla is the bone that forms the palate.
The world can be cruel, but you have to be thankful that you have come so far and that you feel physically fine. Perhaps you can get some counseling to help you get through the overwhelming mental aspect of this disease.
Jerry
Tommy, what a tough thing for you and your family to have to deal with. I just want to send your family best wishes and lots of strenght.You are certainly not alone and you will get some good support here. Amy
Dear Rolf and TommyB---I just wanted to reach out to tell you that perhaps my surgery was not as extensive as yours, but it was similar. There do not seem to be many on this board with our particular surgeries. I had a right maxillectomy, with a partial palatectomy. They had to remove all of my upper jawbone, from the first canine tooth all the way back, and they had to remove about a third of my palate. I have to wear an obturator to speak, eat, or drink. I know that you have to wear one also, and that is larger and more difficult to use, perhaps, than mine, especially if you have lost more structure than I have.
I was fortunate that my surgeon was very skilled and was able to do all of this extensive surgery from inside my mouth, without any incisions on my face. I have a long neck dissection scar, but it isn't too noticeable, and actually, it makes my neck look slimmer. I told my surgeon that he could have at least done both sides so that I would end up with a neck lift!
I just wanted you to know that there is someone else on the board who understands some of the challenges that you face, especially with the loss of your palate.
Ask me anything you wish. I am glad to find others with similar surgery. I am just 9 months post-surgery, and my doctor felt that he had gotten all of the SCC, since he has a reputation for being very "aggressive" in going for a cure. I sure do hope that he is right!
I want to bump this to the top of the page, because I am interested in hearing from people who must now wear an obturator after their oral cancer surgery.