Hi my name is Laura and I was recently diagnosed with small salivary gland cancer. I am a 38 year old mother of 4 , 3 boys ages 21,18,15 and a little girl age 7 who happens to have Cystic Fibrosis. My diagnosis has been extremely hard for me to accept since Ive always been my daughter's advocate and caregiver since her diagnosis..cancer added to an already full medical treatment is overwhelming..emotionally and physically. With my original biopsies (one was lost via mail or the lab lost) I was diagnosed with a T1 or T2 adenocarcinoma of the small salivary gland. After being referred to a care provider in my network (Balboa Naval Medical Center) I was seen by an ent. I had surgery on October 31,2006 to remove the tumor. They came back with a diagnosis of a T2 NOMO (perineal invasion) and as a mucoidepidermal carcinoma instead of the original diagnosis of adenocarcinoma. It was a little over 2cm but with the nerves involved inside of the tumor they graded it T2.

They referred me to see subsequent doctors for a tumor board review. I first saw an oral surgeon who said they would have to remove all of my molars on both sides of my mouth because of the radiation. I was pretty upset concedering Ive taken pretty good care of my teeth. I felt like a butt after looking next to me in the waiting room and seeing a young man there around the age of my son who had lost his leg in the war, and I was feeling bad about some teeth. The radiologist felt I was already cured with surgery since they had clear margins all around and 0 lymph involved. He said he would be in favor of treating if the surgeon felt nervous at all. I happened to miss the appointment with the oncologist since my daughter happened to be in the hospital for a *tune-up* for her cystic fibrosis.

Last Thursday evening they called 30 mins after we were back from the hospital to tell me they had agreed that radiation therapy was there recommendation after the tumor board meeting. The radiologist said they decided this because of the type of carcinoma it is and that Id only have one tooth removed. The ent called shortly after him and said they would have to remove 2 teeth (my tumor was on my right side retromolar area) for radiation. He also said he was kinda on the fence as whether or not to treat. But given my age felt it would give me the best chance at the cancer not returning. He said if it were him he would pull his teeth and do the treatment. He said get it while the iron is hot. So I guess Ill be sick at Christmas.

Im confused at the types of radiation therapy there are. Imrt? I think that is what they mentioned in order to radiate just the area that was involved and not my entire mouth. Is it better to do both sides? Also from the little bit Ive read about that medication that is supposed to help keeping your salivary gland tissue healthy? They never mentioned that to me and I was wondering if that was a type of chemo or if it is something they use now to combat the salivary gland damage. How many here have opted to use it and how successful was it?

Since my surgery Ive already noticed a dryer mouth and taste seems to be off. Spicy foods absolutely are more spicy to me than ever and I cant taste everything. Ice cream seems to just feel like a cold numbing on my tongue...actually a little annoying.

Id love to hear from anyone who has had a similar type of cancer or experiences. I hope you are all feeling better.

take care,
Laura