Hi all-

Recently diagnosed with Mucoepidermoid Carcinoma of the Minor Salivary Gland. Awaiting CT to see about stage/spread. I have had the biopsied tumor in my mouth for about two years and just recently got someone to take me seriously enough to test it. I am struggling right now with feeling really minimized- hearing "it's not a big deal, it's low grade." That may be true but I am 32 years old and have cancer in my mouth, it is a big deal as far as I'm concerned. My gut is telling me that after this long it doesn't matter how slow it has been growing it probably grew somewhere? I guess I don't know how fast cancer usually grows? I have a hard lump on a lymph node a couple of inches from the original tumor. At this point I don't know much but I am feeling very isolated in the process. I am not able to even have someone join me in most of my doctor's appointments because of COVID and oh my goodness what a time to be alive.

Hi Emmaleeak

So sorry to hear this. It is scary when you get that first diagnosis and frustrating when you have been looking for action for such a long time. And, then you have to wait weeks for further tests and the board review to stage everything and recommend a plan. What helped me was taking constant notes and keeping journals. I had one for my feelings and thoughts and one specifically for medical notes. I would review them often and find new things to research or take action on or ask someone about. It made me feel better to do something.

Coupling all this with C19 restrictions is tough. I would call loved ones after my meetings and just download. In some ways, it motivated me too. When I was recovering in the hospital this April, I did everything I could to get home soonest possible so I could be with family. Hang in there! Hoping for a complete picture for you soon and good doctors/support.

Welcome to the forum, but I’m so sorry that you have cause for joining us.

It’s tough to be alone at doctors’ appointments, to make sure you get most of the information down, I would suggest you write down all your questions prior and the make sure you ask the doctor for answers. I used to announce to the doctor that I had “x” number of questions asa soon as I got in. Then most doctors would ask, “Are there any more question?” before we finished. Seek out Pastoral Care or the Guidance Centre at your hospital so you get some supppoty that way. There are also volunteers in Waiting Rooms and they are helpful too. One time I was crying to in the Radiation Waiting Area while my husband was getting treatment, a volunteer saw me, sat down and spoke to me for a little while. Basically, all she said was, “trust the doctors, they know what they ar doing.” That, for me, was enough to get me through a rough patch — to know someone knew I was distressed and she comforted me.

You are welcome to post on the forum any time you want. This is a compassionate group who have a lot of experience among them. You may be able topick up some tips as you go along.

I think no matter what stage it is it is still concerning as oral cancer spreads fast. I know mine went from a stage 2 or even 1 to a 4a while waiting my doctor to return to the states. He saved my life. I no longer have it now 6 years but dealing with dental issues and that dreaded oxygen tank they will try to talk me into going into. I’m terrified right now too. But know this, we live in a time where so many of us are surviving and beating it. And we are fortunate to have as much help here as we do. So many in third world countries have no medical care or even the internet. I know that doesn’t help that much but it I think it gives us hope.