Hi. My name is Denise. I am trying to get as much info as I can. My mom has had a lump in her mouth by her lip for the last 5 years. It would fill up with fluid and she would pop it with her tongue and it would be fine. Her dentist told her not to worry that it was a sebacious cyst and they are very common. Well, not the case. About 2 months ago it started to grow. (Its on the inside of her mouth so I never new any of this). She had a biopsy done and it was cancer. The biopsy reports (it was sent to two labs) say a bunch of different things. The first one says that it is a mucoepidermoid carcinoma of intermediate grade. The other says it is a squamous cell carcinoma with mucinous metaplasia. I just don't know what to think. I have so many questions and a lot of information but I am so scared for her. 5 years is a long time to have something like this. She hasn't done the research I have. She thinks they are going to just cut it out and she'll be on her way. I don't have the heart to tell her what may happen. I'm scared for her and scared for me. I am all she has. I am an only child. I also have 3 small children. I just don't know how I am going to do this. She is my absolute best friend in the whole world and the thought of losing her is too much. But on the same token, I know her and if she is going to end up disfigured she is not going to do anything about this. To make matters worse, today her tooth fell out and she swallowed it. I guess that probably has something to do with this. It's just horrible. If anyone out there has experienced a similar type of cancer, please share your story with me. Any support that I can find will be truly appreciated. Thank you.

Denise...Hello and welcome to OCF....there are many here who will be willing to help you and your mother with your questions. I assume a scan or x-ray has been done. Where is she being treated; what treatment options have been offered?

You might want to begin my searching the forums for specific phrases, i.e., both diagnoses, that should provide general information for you.

I'm sure that other members will log on and offer their opinions and support. In the meantime, know that you are not alone.

Lois & Buzz in NC

Thank you so much for your reply. Our first appt is on Friday at Sloan Kettering in NYC. My mom hasn't "officially" been diagnosed yet. I am going off the biopsy reports. A Pet Scan will probably be the next step. I will definately do as you suggested and research in the forums. Knowledge is Power..Right?
Thanks

Take a note book and while you are talking to the doctors take lots of notes. This is going to go over everyone's head that is present. You want to understand as much as possible, but still people that have been told they have cancer only hear about half of what is said, and half of that they don't remember because they are still in shock. What you don't get after the appointments, or the doctors don't explain to you in detail, come back here and ask questions... we have all been through it and can help you through the understanding phase. PLEASE go to the main section of the website and start reading. Particularly the part about diagnosis and staging. Best of luck - see you here on the boards with the questions.

Brian's suggestion of a notebook is a good one. I went a step further and took a small recorder, so we could capture everything. Just be sure the doctor has no problem with it (mine didn't) It is true, you do miss a lot.

Kevin

A notebook and recorder are so very handy. Even as you are in between app. and think of a question you can jog it down to ask the Dr about. I went one step further because (thank Goodness) my sister is a RN and now a petient advocate who went with me to my first bunch of appointments. She told me what the Dr was saying. Until I learned to say repeat that where I can understand it. At one time I had questions I could not get answers for and asked my sister to find out for me. Well my next visit with my Rad Dr he sat me there until I knew what he was saying. Ask questions make him make you and your mom understand what is going on. And this forum is wonderful.You can find out most anything you look for and if you can't find it just ask and some one here will help point the way. These people here are wonderful. I have made quite a few desisions after being here all for the good. Keep your head up and try to be strong for you and your mom. My daughters are great they have been with me even though it has been long distance but they were there for me and still are . You are very important to your mom. Read and ask any questions you need answers for. My best wishes and prayers to the both of you, Brneda

Like Brenda, my sister is an RN and went with me and my wife on a lot of the visits at first. They took notes and also served as a second and third set of ears. See if you can get someone else to go with you.

Thank you all for your posts. I will do exactly that. Notebook and recorder. I am truly touched that you all are here supporting each other and me. It is hard to discuss this with others. I don't think anyone really gets it.

denise

When I was lucid I wrote questions down especially on the way to Tx as I had a 1 hr one commute. Not only were they fresh in our minds but I had them on paper just in case I forgot which was often.

I think my oncology team thought I was mute. I brought my fiancee and my ex-husband to my appointments, and they asked all the questions and took notes. I just sat there(in disbelief, I guess) It is way too much info for one brain to process. Good luck.