Apr 11, 2013 - 5:05 pm
Hi all, my story short version - I was told my very "insignificant" cancer was kind of rare. I was wondering if anyone else had this in a similar location (mouth). In August of 2012 I had a lump about the size of a nickel in diameter appear on the roof of my mouth. It was strange but I just thought it was one of those things that would appear and then would be gone in a week or two. Well, I ignored it for almost 4 months but it persisted. I finally made myself go to the doctor. He looked at it and said it was a mucosa and needed to be lanced but I needed to go to the ear nose and throat doctor. The ENT said it was not a mucosa and he took a biopsy. That came back unconclusive so he removed the whole lump and sent it to the lab. It came back as extranodal marginal zone lymphoma. I could tell that he was unhappy to tell me it was cancer but he said "it is very treatable". He said you will just have a very low dose of radiation to clear it. I thought OK, let’s get it done. I had several doctors tell me the radiation was no big deal. They did a CT scan to make sure there were no other lymphomas. There weren't any but they found other non-related problems which I will deal with later this year.
So, when I went to the radiologist he scared me half to death with "you will lose taste buds, you will have permanent dry mouth, you will need a feeding tube and we need to treat the neck to make sure it does not have a chance to spread. Well, he worked it out using IMRT to treat around the saliva glands so I was happy with that mostly. I started the radiation two weeks ago. Radiation is apparently nothing compared to Chemo but by itself it is no joke! It certainly is a bigger deal than I was told. I think I am doing the right thing because there is a good chance this will be a "cure". But seriously, that little lump turned out to be a really big deal. Granted, left alone it might have killed me but I never expected all this. My radiation will be 20 treatments. Five day a week until finished. The treatment does not hurt. You can't feel it but the feelings in my mouth were not covered for the first 12 treatments so the radiation scatter caused me to develop a lot of sores in my mouth. Add to that very swollen tonsils. Eating is a painful experience and almost impossible without the "magic mouth wash" they prescribed. I have 7 more treatments to go and I'm told those will be worse. Dog! So, anyone else gone through this?