Hello. My name is Jane and I was recently diagnosised with tongue cancer. Had a sore spot on my tongue that would not go away. Saw my husband's periodontist and he watched for a few months. It would almost clear up and then return so he decided to do biopsy...fast forward to this past week, I had a CT scan and had my first visit with my oncologist at the cancer center. Scan showed no other areas concern (did discover I have a paralysized vocal cord) and lymph nodes look normal. Stage 2 Discussed surgery and waiting for date. Going back this week for preop and having a PET scan. Meeting with ENT, speech pathologist and dentist next week.
Everything is happening very fast and seems surreal one minute and overwhelming the next. Trying to be strong but find myself crying at random times. I am sure this is all normal and have found reassurance on this site reading others post. Glad to have found this!

Welcome to OCF, Jane. You have found the very best site for info and support to help you manage your OC. Stick with us and we will get you thru this.

Hi Jane, welcome. I'm sorry you have need of this site and us. All your reactions are indeed very normal. Things will happen quite quickly now. I found that I felt so much happier/in control once we had a plan in place.
As Christine said, stick with us. We are here to guide and help you through this.
Tammy

Thank you both. I hope to have a better grip of the overall situation after I go back this Friday. My husband is concerned about the 2 weeks after surgery and only liquid diet. (he loves to cook and is a nurturer) I told him I would ask for ideas. I am lactose intolerant so milk based drinks will be difficult...

Hi Jane, welcome to the family. The time after the diagnosis felt like a whirlwind to us. We had to get up to speed with what the cancer was all about, the treatments as well as learning to find our way around the hospital system. So, yes, it is perfectly normal for you to feel lost at this time. We have found that people are generally very kind at the hospital and would show us how to do certain things. Do you have access to a dietitian at your hospital? She/he may be able to give you good advice on what to eat when you are lactose intolerant.

Great idea Gloria! I will look into that. Thanks!

Welcome to the group! Just a few short weeks ago, I was in your shoes. All I did was go to a routine dentist appt and next thing I know, my world was turned upside down. Everyone on this site is so nice, understanding and filled with compassion and information!
I had surgery about 10 days ago and although it is of course, uncomfortable it is certainly doable...good luck to you Jane. Hang in there, they found it, that's the good thing.
I will pray for you. I know how you are feeling. Love, Denise

Thank you Denise. Glad to hear the surgery was "doable" and behind you! I do find this site helpful and it makes me feel not so alone or crazy at this point.

HI there - I had a very similar cancer to yours. It sounds like they are moving quickly which is great.

I hope you are being seen at a CCC and by someone who does oral cancer all the time (not all ENTs are made the same) I am only saying this because what they do now in terms of treatment can make a big difference down the road.

I'm not writing this to scare you. I want you to be empowered. Knowledge is key.

Let me explain. Most people - even ENTs go... okay... small tumor - lets remove it. done. go on your way. you're cured.

Sometimes this works great. More often than not, though, it's a false sense of security.

Any ENT who does this cancer exclusively and all the time knows it's a tricky beast. Most ENTs won't rely only on a scan even if it's tiny and appears to be superficial, because most experienced ENTs who know this cancer know that even if it doesn't show up on a scan doesn't mean it hasn't migrated to your nodes on a cellular level, and may not be visible on a scan.

This cancer can be very aggressive. My ENT insisted on removing not only the tumor, but also selective nodes in my neck to confirm it hadn't spread. ( I had a clear MRI and CT - and still had a node that not only was cancerous, but had burst and spread out into the surrounding tissue - because of that he sent me for rads and chemo - after surgery) So if you aren't at a CCC get to one. At this point a dentist should only be involved if they are removing teeth or examining you prior to radiation and chemo.

Assuming the ulceration is in your mouth not a tumor down your throat, surgery is the first line of defense with a follow up of rads and chemo if necessary based on the final biopsy after surgery. Hugs and blessings to you.

Again I don't want to scare you I want to make you aware that this is a tricky cancer and needs to be treated speed and proper care by a very knowledgeable individual.

hugs.
and welcome

Hi Jane,

I'm so sorry to hear of your diagnosis. You're so right, the experience is surreal and overwhelming. However, I assure you that you will find great comfort here and help from a tremendous group of people. You are in my thoughts.

All the best,
D