Hello everyone,
My name is Theresa. I am 34 years old and just got home from the hospital after having a tumor removed from my tongue as well as a neck dissection. I am in quite a bit of pain and can't sleep so thats why I am on here. I am having a hard time eating and drinking still (I had my surgery Tuesday) and my neck hurts but I dont think that is why I am awake. I was told that in 3 weeks I will have to go through 7 weeks of radiation and that is terrifying. I know that I will loose most of my teeth ( I will look terrible) and I really do not want to go through radiation. I know I have to. I dont want to die or get cancer worse again (I have 4 kids to think about) but I cant seem to get over this fear. I dont know what to do. I want to run away. I feel like my life will not get back to normal now, and that is a lot to take in. I dont know when I will talk more normal again or be able to eat more normal again. I feel sad and depressed about everything. I swear my dr said that the path report came back clear...which confuses me on to why I still need the radiation. I think everything coming all at once is just overwhelming. I want my mouth back. I want to eat and do the things I was doing on monday. Will I get better? Will I talk more normal again and eat more food again? How long will it take? UGH. Its all so much information to take in. I should have radiation right? I DO NOT want to do through a worse surgery or die. Please give me some insight on what my life will be. I am super scared and sad

Hey, Theresa, hang in there, my dear.

This forum has many people to give you hope and encouragement, who have been where you are and are where you may be, after treatment.

You are going through a lot, and it is scary, but you can do this for your sake and the sake of your children.

There are many here who have gone through the 7 weeks of radiation and survived and are living their lives wholeheartedly and to the max.

Take it a day at a time, stay hydrated, and make sure you are taking in enough calories, by mouth or by PEG.

You can do this, and this treatment will pass in a flash.
Praying strength, courage and peace your way.

Aloha,
Barbara (Caregiver, Cheerleader, Encourager for Richard)

Hi Teresa,

Welcome but sorry you had to find us.

The pain from the surgery will eventually lessen. Anything they do concerning the tongue hurts like heck! While I didn't have tongue surgery, they took lots of chunks for biopsies and they hurt for ages! Make sure you take the pain meds as scheduled. It's easier to prevent pain than to make it go away.

Okay... I hear you. I absolutely do but despite the fear and apprehension, despite the feelings of depression and sadness, you have to buck up and get through this not only for yourself but for your kids.

I assure you, you'll get through this! They have to do the rads to make sure they got everything. All it takes is one microscopic cancer minion to start it all over again. You didn't mention chemo (surprised) but you'll still have some side effects (neck burn, fatigue, sore throat and mouth etc). Start prepping your neck now with a skin treatment such as "Special Care Cream".

I also assure you that eventually, you'll feel much better. With help from a Speech/Language Pathologist and therapy your speech will return to normal and you'll be eating the things you enjoy.
I'm not gonna sugar coat it, treatment is brutal but you'll make it through!

This is a great site for information and encouragement. We've been there and done it, some more than once. Do your very best to stay hydrated and nourished. Others will chime in with specifics.

Hang in there and hang on. It'll all be over before you know it!

Positive thoughts and prayers.

"T"

Hi Theresa - I'm so glad you found this place! You will get through this and things will get better!. My son was just about your age when he was diagnosed with SCC (Squamous Cell Cancer) He had surgery and then Radiation. And he is doing just great, now 6 years later! The Radiation is to make sure the cancer does not come back. Everyone is different and some have a much easier time of it than others. The effects of surgery will improve. Right after surgery, my son couldn't talk but used a laptop to communicate and was feeling pretty low and depressed but he was a lot better by the time he started radiation. He didn't have any teeth removed nor did he lose any teeth. Try to think about the good news that your doctor gave you about the path report coming back clear. The thing that got my son into the survival and fight mode is when I reminded him of his then 5-year-old daughter that he had to live for. You have at least 4 wonderful reasons to keep going plus all the other people that love and care about you. Your children will help keep you focused and provide some sweet distraction for you. Use this time to check out the main pages of the Oral Cancer Foundation (See above, top left link) and prepare a list of questions for your doctor or for anyone here. Tell your doctor how you are feeling and he/she may be able to prescribe something to make your feel better about coping with everything. Most people do need some kind of anxiety meds. It really helps to have someone go with you to appointments or Rad Tx so they can help you remember everything the doctors or cancer team tell you about your treatment. So make sure to take care of You - get plenty of nutrition and water so you can be in the best possible shape when you start Rad Tx. Lots of caring and knowledgeable people here will help you through this so check back often and let us know how you are doing.

Theresa, welcome to OCF! Im glad you found our forum. We will help get you thru this and the next few months, so please try to relax. Everyone is always afraid of the unknown. Read and educate yourself thru the forum and main OCF pages. An informed patient is a smart patient.

Best wishes!

Hi there I was in your position a few years ago. Tumor in tongue, neck dissection etc... I'm a non smoker, non drinker and a veg head - it was a shock. You need to get into fighting mode. Three weeks is great - I was 5 and believe me I wanted to get it over with. If they'd told me you start tomorrow then I would have said that's great - thanks. My dr. is considered the top guy in Toronto - and he told me post op - in my opinion we got it all - but to be on the safe side I, sending you for chemo and radiation. I had clear margins too. The thing with this cancer is it can be aggressive and move quickly. There are a lot of factors to consider when determining whether you should go for radiation, your staging is part of it, also the depth of the tumor (peri neural involvement) the differentiation of the cancer, whether you had nodes involved and whether they were still encapsulated. Clear margins are fantastic, but cancer can exist and move on a microscopic level... Undetectable by a scan or the human eye, and because its not always predictable (often they can figure out where it will go but cancer doesn't always follow the same route - it's a very individual thing) radiation is a good idea. Radiation and chemo combined should kill anything left over, and it cuts the odds of recurrence in half.
Have they told you that you will lose your teeth? Or did you read that a lot of people here have lost them? I kept all my teeth. They will only pull any that are in bad shape and that they know you are going to have trouble with in the future (having to have a tooth pulled after radiation is a bad scenario. )
It's true that a lot of people have issues with their teeth post treatment, but good oral hygeine and diligence do pay off - so far so good. My dentist is quite happy at this point and I finished radiation almost 28 months ago.
I had three kids at the time of my diagnosis but they were older - teens and yum adults. I'm in my early 40s.

There are quite a few here like us, so I can honestly say you will get through this. And life will get back to mostly normal - it's been a couple of years and for the most part I've been blessed. I can eat what I want, speak very clearly (I'm told) in fact people who don't know I've had the surgery can't tell. I do have a few snazzy scars but they are a humbling reminder of what I've been through. I am active, work, and life is great.

Treatment sucks - I'm not going to sell you a falsehood, but in the long run it could be what stands between you and a recurrence so you will get through it and eventually get back to your new normal. It isn't instant, but with patience and kindness to yourself you will get ere. hugs.

Ps high protein (not all animal protein) helps heal. Try making yourself power shakes starting now, enjoy the food you like until your treatment takes at away that bit of fun - it's only temporary but you'll miss it.

Theresa,
I also had a tumor removed from my tongue and a partial neck dissection. In addition I had 38 sessions of radiation, and 3 "big bag" cisplatin(chemo). I completed my treatments 4 years ago this month, and I am still here! No, I am not the same as I was before. I still have eating issues and my speech is often slurred. The fact that you are young may be a very positive aspect in your recovery. I am now 68 years old, and I'm still hangin' in there. Treatments are rough, but you will get through this. We will all be here for you every step of the way. You will "meet" some amazing people here.

Thank you everyone.
They did not say they were taking all my teeth, however there are many of them that will have to be pulled because they are bad. I wonder if they will give me dentures or something after they are pulled. I just can't believe how much this has already changed my life. I am trying to get into the fight mode. Maybe I am just feeling too sorry for myself. I will try harder. I will have the radiation because I do not want to go through something like this ever again. It just so tough because I didnt know it would change my life so much already. But hopefully my talking will come back more and my stupid neck will heal faster. I am getting the staples out Friday..getting set up with a dentist and then a few weeks after that begining my treatment. 5 days a week for 7 weeks but you are all right..at least I will be alive and here for my kids. That is the most important thing. I will try harder I promise!

Hi there, chiming in. I did not have a tongue surgery, I had a neck dissection but I did go through the 7 weeks of radiation and 3 chemo. Mine finished the end of May, and I am doing very well. Treatment is rough but you can and will get through it. Your life is going to change but on the other side you may find you are very fond of the person you have become. For me the physical changes are minimal when I think of what I went through and what I overcame. Emotionally I like who I have become.
There are many here who have been down this road before you, use their advice and knowledge. We are all here for you. You can do this.

Whatever needs to be done tooth wise, do it now, for several reasons being radiation damages the teeth directly, and by the dry mouth it causes to the terth by demineralization, and if any teeth need to be extracted after radiation Tx, you will need to do hyberbaric chamber treatment, 20 before extraction, 10 after, plus, if anything needs correcting in order to do treatment, insurance will usually pay for it, but not after, in case you have no or limited dental civerage, and afterwards may be considered cosmetic. You will need 2 weeks healing after an extraction to do radiation, and will probably need dental clearance.

Ask your dentist about dental trays, prescription fluoride. Some make vinyl dental guards to use during radiation to protect the mouth from radiation scatter from dental fillings if made from metal, and reduces damage. This may need to be coordinated with the radiation oncologist and or before the mask is fitting.

Good luck.