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

Hey Jane, sorry you have to be here but you have found a great place to help you through this.

To echo Cheryl, I hope you are being seen at a CCC (Comprehensive Cancer Center). I notice you didn't mention seeing a radiation oncologist. If you are being followed at a CCC, your case ought to be discussed at a tumor board by a variety of doctors in many disciplines, including radiation oncology. I would ask about this and also ask why nobody has recommended that you see a RO (radiation oncologist)

As many have said on this site, having your case presented at a CCC tumor board is very important. Second opinions are also extremely important. If you haven't received a second opinion from another ENT, please do so. If your ENT wasn't at a CCC, please go to one at a CCC.

I have been fortunate enough to be seen at a CCC, have my case presented to tumor boards and received second opinions. In my case, base of tongue (BOT) cancer, it was recommended not to do surgery and to do chemo and radiation instead. Perhaps a CCC tumor board will recommend something other than surgery for you too. Or they may concur with surgery, but in any case, it's best to get that opinion. Best wishes and good luck to you.

I am going to a CCC and seeing a highly recommended Oncologist who only deals with oral cancers. They do have a tumor board that meets weekly with over 40 specialist. So far I have appointments to see a Dentist, an ENT, and a speech pathologist. Over the next week and a half. I have had an endoscope and CT scan. This week I go back for a PET.
My initial appointment was only a week ago today... I have written down questions and will include your suggestions. Thanks Cheryl and Andrew!

YAY~!!! best of luck to you... it won't be easy but you can do it.
hugs

Just wanted to say welcome, also, and so very glad you found this place-everyone here is so supportive and wonderful! I still feel kinda new to this but the the support and knowledge I have gotten here has been a gift! I wish you only the best!

Good news!?!?! The Pet scan did not show any additional involvement. Surgery is scheduled for 6/2 to remove tumor. Based on how deep they have to go to get clear margins we have scheduled a neck dissection for 7/15. If needed.
I have decided to take off from work starting now to focus on me and getting strong (mentally and physically) before surgery! Hoping for the best but preparing for the worst...

It sounds like you are in good hands. At this point, you may want to go and gorge on your favorite food. It may be some time before you can eat whatever you like in whatever quantity you like. It is also a good idea to put on a few pounds in preparation for treatment.

Um... why wait for the neck dissection? They are in there doing the surgery. Why not do both. My questioning of this is two fold. Firstly, this cancer has a tendency to hide in the nodes and be undetectable on a scan until it becomes a certain size. By then it's had an opportunity to spread even further. Secondly, that's two surgeries, and being put out twice? Two recoveries.

By doing both they are ensuring no further spread and making it possible for you to not have to have rads and chemo. If they remove the nodes and tumor and you are clear then there is a good chance that is the end of it.

If they leave the nodes and one or two pop up post surgery, then you will in all likelihood be having rads and chemo.

Hi Cheryl,

They explained it as, depending on how deep the tumor is ( to where they can get clear margins,) will depend on if I will have neck dissection. Everyone is hoping since I have caught it very early, I will not need. My surgeon always schedules the dissection to follow in these types of cases. I believe it is because he will use the or with the DiVinci robotic knife for tumor and a different or for neck dissection.

Hmmmm.... well he's the dr. But I can tell you my guy - right out of the gate said that I was having a dissection. Even though a CT and MRI showed clear, he knew there was a good chance the cancer was already there on a microscopic level. I didn't argue and was glad for this. Turns out I had a node that did no show up on any scan, and it was cancerous. What's more - the cancer had broken through the node and into the surrounding tissue. Had he not done the dissection at the same time - I'm fairly certain I wouldn't be here today.

hugs and best of luck.

Hi, I had my surgery 6/2 and feel I have been recovering well until last night. I have been backing off the pain meds during the day and taking them at night as needed. Woke up last night with terrible pain but it felt like it was more my ear! Is this deferred pain?

Pain is like that from my experience. Pain seems to be referred to the ear in my case too but of course you should report the pain to the docs! I wonder if it's positional in that when you're lying down things seize up a bit and set of a pain chain reaction. Last time I had no pain at all towards the end of my 10 days in hospital and then had such bad pain when I got home that I rang the hospital and they sent me to A & E to have my meds sorted out.There doesn't seem to be a straight line decrease in pain.

Good luck and congrats on doing so well otherwise.

Thanks Alpaca. I did speak with the Dr's PA and she thought it was referred pain. I agree there maybe a connection with lying down so have been trying to sleep with head elevated and staying on prescription meds at night. Did much better and actually slept later into the morning. No rhyme or reason....just when something feels better something else starts to hurt. Go back to see Dr on Monday

SO glad you did okay... pain is weird... it could be fluid or something too. Hugs and keep feeling better. ;o)

Thanks Cheryl! Everyday is better! Had a great follow up visit on Monday and heading to finish recovering in Hopetown Abacos Bahamas!

Thanks to everyone! This group has been so great and supportive! A true treasure chest of information and advice!!!

I did the same thing. Ran away to mexico to recover post surgery and prior to rads...
heal and feel better...
hugs.