Hi, I just got the results of a biopsy done by an oral surgeon of a tumor under my tongue. It is squamous cell carcinoma and apparently it has been there for some time. The oral surgeon just happened to notice it by touch. I am going to an ear, nose and throat specialist next and am scared to death. I have family around, but none has ever had cancer so I don't feel they understand fully my panic. I hope I can make friends here.

Welcome to OCF. You came to the right place for support. Its a very frightening time when you first get that awful diagnosis. You are correct with seeing an ENT. You should go to a cancer center to get a group of doctors who specialize in cancer treatment. Second or even third opinions are important to help you determine what is the best course of action for you. Its your decision.

Im hoping your family becomes more supportive. You will need them and the help of everyone around to get thru this. Its not just physical its also emotional support which is important. Many patients take anti depressants to help them cope with this. You need to understand you are NOT alone. Many people here have been right in your situation, scare and not knowing what to expect. We will help you thru this.

Right now, try to eat everything! Anything you want and dont worry about gaining weight. Eat like crazy cuz it could be a while before you eat properly again.

Please feel free to ask questions. Best of luck.

I was right were you just one month ago when I got the phone call. It is such a frightening thing to hear. This place is so awesome and ready to answer any questions. I am glad your oral surgeon did a biopsy. I know the fear that you have and you will need support through this. I pray that you will get that family support you need as this is a very rough time. I also pray that you have not had it for very long, and will only need surgery and nothing else. We are here for you.

Bloop,

I would recommend that you seek the advice of a Comprehensive Cancer Center that sees 100's and 100's of patients just like you vs an ENT that maybe will see 5 a year. Here is a list:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I got 5 different opinions before I settled on Moffitt, a CCC and I am very glad I did. If I had stopped to soon in seeking answers I would either be dead today or would have had unnecessary life altering surgery.

Your cancer is nothing to take lightly and it needs to be treated properly the first time by experts who deal with this cancer all day long, every day, year end, year out.

I'm not criticizing your decision to see an ENT, I'm just trying to get you to the correct location to get the best possible treatment.

Please keep us posted. This site will prove to be the most valuable tool in your arsenal outside of your Tx. We will be here for you all the way.

Hi Bloop,
My husband discovered his cancer through an ENT who referred us to several cancer centers. ENT's see this all the time...they have a wealth of info available to you and the first one that we saw was worth his weight in gold. His positive attitude got us through this and assisted in obtaining the specialist that my husband needed to do the final surgery after treatment to remove residual disease.
Hope this helps!

An ENT is a very important part of your treatment team. They are ear, nose and throat specialists, some of them are also surgeons. I see mine every 2 months still where the oncologists are only seeing me every 6 months. It can get confusing on who to go to for which issue. My ENT is who oversees my treatments. He is an excellent doctor and has treated a few others on this board as well. Without him, I probably wouldnt be here today. He found my recurrance immediately and got it taken care of within a few days of confirming it was cancer.

You will still want to go to a cancer center to get a whole team to work on your individual case. There will be a medical oncologist (chemo doc) and radiation oncologist. Its very important to get everyone on the same page and get you fixed up with the best possible treatment plan.

I was at work when Martin called and told me the swelling in his neck was cancer. I had the biggest sinking feeling in my heart ever. We had lots of support, but I must hear this site was a life saver and kept me sane. I never felt alone here.
All the best

Welcome to the forum. It's impossible to not be afraid but, don't panic. You can beat this thing. Best of luck and please keep us posted.

Welcome to OCF and good luck, try and get treated at CCC. I agree with David they are the best equipped to help you in this WAR you have entered. GOD Speed and the best. Semper-Fi Bob

Welcome and as you can see you have lot's of friends already.
Mine was floor of mouth as well... nearly 3 years ago and doing OK.
Ask as many questions as you like and they will be answered by very experienced people here.
Keep us up to date and try to take the advise from David R..don't panic

Go to that ENT Mine
is the one that knew more than the Dr at a well know cancer center. I owe him my life . Him and the dr at the the well known CCC went at it over the phone more than 1 time. LOL I overheard one of them,. Not nice for sure. Welcome to our home and don't ever close the door. It's much easier for some of the oler ones to just walk in with undue preesure on a door,

Hi, I am new here as well, but I have been reading here for about a week or so now, and I can tell you, you will most definitely make friends and be surrounded by support. My mom went through the same thing 4 years ago. They removed the tumor and she didn't need and rads or chemo. I can fully relate to your panic, and wish you the best. I think that even if you have had things like this in you family before, no one can fully understand how YOU feel, but I think you will find comfort here. Good luck and from my experience, all you can do is take one day at a time, and try not to jump to and conclusions, just focus on the fact that it can be taken care and you will get better...take care.

Hi Bloop,

If you are looking for friends and support you have come to the right spot. This is a very scary time and we all understand where you are right now. Just take it one step at a time. Get a good support system in place and someone to go to your appointments with you. It always helps to another set of ears. Please keep us posted with how you are doing.

We all have different opinions on what doctor to see, we've all been treated differently. The experience I had with the ENT Surgeon I would have had unnecessary radiation (with a PEG) and who knows where I would be today. I agree with David and Bob, CCC.... I drive 3 hours to a CCC in Tampa, I'd drive double that to go to a CCC after the experience I had here with the ENT Surgeon. I was clueless about CCC I'm so glad a Radiation Oncologist helped me I owe him big time.

Right now your mind is all over the place, I know been there like everyone else here. Take notes and ask questions don't be afraid to ask this is your life. Take someone with you to your appointments. Four ears are better than 2 and you won't hear half of what the doctor's tell you. I know I asked my friend, what did he say it went right over my head I was in a daze. I went through this with my late husband 10 years ago BOT cancer Stage IV. We didn't know about CCC no one told us or we would have been there.

This is the place for you to be a lot of support Good Luck and God Bless.

Connie

Wow, so much has happened since June when a small tumor was found on the floor of my mouth and was cancerous. First of all, everyone told me to "stay off the computer" - lol. Well, I couldn't of course but I didn't realize I would get so many responses and would want to talk to you guys again. The cancer spread to my lymph nodes and I have now had a right side radical neck dissection by my ENT. I still haven't seen any cancer people. I have an appointment with both a radiation doctor and a chemo doctor on November 5th as I will need 7 weeks of radiation and chemo. I hear it is way worse than the surgery. Boy, I feel so confused. First I had a small tumor that was removed and I was supposedly cured. Now I have stage IV cancer and the rest of 2009 seems to be screwed. It's like a roller coaster. I don't want to be a wimp, but I'm really scared. I'm a widow. I have a daughter to help me but she is SOOOO busy with church and Narcotics Anonymous - she's always doing something.

I sure didn't find radiation worse than the surgery. It is very different for each person. Do not prejudge it. Perhaps you will sail right through it - many people drive themselves to each appointment and I know of some who have worked almost straight through.

Stage IV is just a number - like weight. That is one of the wonderful things about head and neck cancers - each patient has their own course which may bear some similarities to another persons path, but each person's body is so unique that no one can fully anticipate how good or bad it will be.

Try to stay positive, and don't assume the worst. Try to find something in each and every day that makes that day special and puts a smile on your face. I have often said that cancer steals too much time from us - do not give it any more than it absolutely has to have - certainly do not give it all of 2009!! Look for those special moments in each day that make life truly worth living.

Scared is very very normal and that is where we fit into your life. We are here for you. Will not not push aside your fears or not want to talk about them. Post often, lend support where you can - you are in the right place and Thank God for the computer!

Donna

That is very good advice from Donna. Her and others here have helped me over many hurdles. Just keep the positive attitude and take care of your angels, no matter who they are. Mine are what keep me going thru life. I owe them many good deeds and hope somehow hope to repay them. Who in the world told you to stay awauy from the computer ?? This computer has saved more than one of us from big mistakes. Take each day as it comes and improve on the next one to come. The worst thing to me is to try and think until you know for sure what is going on. Goos luck and keep posting your progress. jim

I had my right neck dissection October 2nd and I'm due to start chemo and radiation November 16th. But they say I have to have a port put in and a PEG before I start and I haven't been set up for that yet. Plus I have to have that mask that freaks me out made before I can start. I appreciate all your comments. I know radiation is different for everyone, but it sounds pretty terrible in general. I had no symptoms or pain until the doctors got ahold of me. It seems like they can't do enough to make me miserable - lol.

Bloop, you and I are on the same schedule it seems. I am due to start radiation and chemo the same days you are. And I to have to have all thos other procedures done. Let's make it a race and see whose Drs can actually get it all done in less than two weeks. I have not even seen the MO. I do not see him until next Tuesday. I haven;t seen the Dr. who is putting in the PEG either. I do not know if it is possible to get it all done.

Bloop,

If your cancer has already spread to the nodes, concurrent chemo/rad is the norm. Have they said what chemo(s). I will assume Cisplatin. If so get your hearing tested pre Tx as Cisplatin can cause permanent hearing loss. The chemo/rad combo can be tough especially from the 4th week into Tx lasting until the 3rd week post Tx. Count on it and maybe you will be one of the ones that skate through. Let's hope so.

Re the Peg and Port. I didn't have either and I wish I had had the Port but I still wouldn't opt for the Peg even though it would have made getting the proper calories and hydration easier.

You will most likely, Peg or not, loose many pounds. You will also loose your saliva and your taste, all of which will return for the most part in your 2 year recovery period. Therefore we encourage everyone about to start rad to EAT EAT EAT everything in sight until you just won't want to anymore.

Re the mask. It only took one heart pounding practice session for me to accept the mask but some get their docs to prescribe a sedative that they take right before being clamped down. Most of us were allowed to play our favorite music during the rad sessions and I had them turn mine up to ear popping levels so I could drown myself in music and go somewhere else in my past where it was nice.

Good luck and know that this site will here 24/7 so don't hesitate to use it about anything.

They clamp you down? OMG I think I may pass out. I think some sedatives are in order. UGH

Angelia,

My hubby is very clautrophobic and was worried about the treatments and how he was going to get thru them. First of all, the mask is mesh so you can see thru it and they cut openings for your mouth, etc.

Bill was able to go thru the treatments just fine as he learned coping skills and going "somewhere else" during the treatments. He did it without meds which is good as his treatments were twice a day and that would have been problematic.

You can do this...you are stronger than you think!

Deb

Angelia, I think you'll be all right after the first few sessions. My doctor let me take some Xanax to calm my nerves before treatment, and that worked great -- just zoned out and watched the big machine move around my head. If you focus on your "out breaths" it can really help, too.

Remember, too, that the techs will be watching you the entire time. If you feel panicked, you can raise your hand and they'll come in and un-snap you very quickly.

Visualize those rays cooking away your cancer cells one by one -- it's all for a good cause!

You can do it!

Angelia,

Look at it this way, at least you can prepare yourself mentally knowing what to expect. I was clamped down during a trial run without any advanced b notice. That's what shook me up more than anything.

Angelia, I didn't feel clamped down so it must not be that bad of a feeling for most of us. You will do it the 1st time and not panic. Just reach out and hold my hand as I will be there in spirit. Jim Anyone that has to teach kids has to be tough. LOL

Angelia and Bloop, Steve always said the radiation was relatively easy for him (mind you everyone is different). He said it was easier than he thought and over with pretty quickly each day. His biggest complaint was that he was uncomfortable on the hard table because he was so thin and had no padding on his bones. His mask didn't have a hole where his mouth was but was made of a mesh he could easily see and breath through. He wasn't a fan of the chemo though but still he got through it, just as you both will. As tough as it may get you have to get through it because the alternative of giving up is far, far worse. Hang in there both of you. And like Jim, I will also be holding your hands in spirit so you are not alone.
Wendy

Angelia and Bloop,

I made a science out of observing the machine as it moved around my head. I counted all my breaths when the machine made the humming noise that signaled that the radiation was flowing. I memorized all the small adjustments the machine made. Mostly I did this to keep my mind occupied.

As the sessions moved on I found I was getting a little more comfortable each time. The last few weeks I was actually falling asleep during the sessions.

When my treatment started, I asked the technicians to cut a hole for my mouth and they did. My center also offered warm blankets that they place over you at the start of every treatment.

Kelly

In addition to the mask I had to lie straight with my feet pushing against a flat board with ropes attached to each end which I gripped with my hands to keep my body as rigid as possible.

Hey David,
I had almost forgotten about the straps they tie us down with
amazing how after 3 and a half years we rem the good stuff now.
Fleetwood Mac was my music Dont Stop Thinking About Tomorrow.

similar to bloop I was diagnosed 2 weeks ago via a biopsy, stage 3 base of tongue carcinoma, getting feeding tube next week and starting radiation in under 2 weeks. how does one prepare for this, outside of positive attitude?

Michael,

By doing exactly what you're doing.....coming to this site to find out what to expect. I have always maintained that the mental aspect of this cancer is 50% of our battle so if we can prepare ourselves mentally that's one less obstacle we have to deal with.

Thanks. It is such an unknown with so many different effects for everyone. There is not one size fits all here. I am planning on keeping my life as familiar as possible. Am going to go to work, if I can and see how that goes, don't want toscare any ofmy co-workers when they notice extreme weight loss over short or long time.

Walknlite, it is now Friday and I still haven't heard from the chemo or the radiation doctor. I guess I'll be running around next week like crazy if I'm to start on the 16th. Keep in touch.

David, from what I understand the chemo doctor has yet to get approval for the concoction she wants to give me, so I don't know what it is yet. I am trying to eat calories like mad, but I had to get my teeth pulled so it is hard to eat anything except ice cream. I look like a monster because the shots the dentist gave me made big black and blue marks on my face and my neck dissection looks like someone tried to decapitate me.

I love hearing from people who had the same treatment I am going to have and lived to talk about it - lol. I really am usually quite brave for surgeries and I'm a fast healer, but this new stuff and the bolted head to a table ordeal is just horrifying.

I also sleep on my stomach. Will the PEG mess that up? I can't sleep any other way. OH BOY what a revolting development this is. (Anyone old enough to remember that phrase?)

Bloop

Sleeping on your tummy with a PEG tube will probably not be a possibility, it wasn't for me. It is actually a tube that they insert in your stomach and about 8 inches or so of the tube hangs out from your tummy, so putting pressure on it causes alot of discomfort.

When I first had my radiotherapy, I had no idea what I was in for, so I was terrified. After a couple of days of getting zapped, I was able to lay on the table without stressing. I actually amazed myself at how well I was able to deal with the treatment. They used to have cd's playing - so I was able to try and focus on the music.

Karen

I couldn't sleep on my stomach either. I actually started sleeping in a recliner so I wouldn't roll over on my PEG.

Oh boy, things are sounding worse and worse. Don, you had your PEG in for 4 months? I will probably have to get sleeping pills then to sleep in a recliner. I had an awful time sleeping the last few months of my two pregnancies and the first thing I did after I delivered was roll over on my tummy.

I did not need chemo or radiation and reading the stories on this thread is amazing. Blood and Angelina, you are both strong and you will get through this. Check out Wendy's blog titled "my Steve" it is an amazing story and he is doing well. Also ChristineB has been through a lot of treatment and is one of the most amazing people I know. Check out her story too. You will have my unwaivering support through this time.

Bloop, I just sent you a PM. You and I seem to have the some worries and concern.

I am finally scheduled for the port and peg to be put in this Friday so I'm assuming radiation and chemo will start next week. The surgeon said putting in the port is a 90 minute procedure!! I didn't think it was that complicated. Did everyone have to go to outpatient and have that long of a surgery for the port? I'm pretty sure I can handle that. It's still the mask that has me in a dither.

I had just found this site for the first time tonight. It's 3:00 a.m. and I can't sleep. I've dealt with having SCC on my tongue and mouth 11 different times since 1993. The first 3 surgeries the cancer was removed by cutting it out (several small areas). It kept returning once a year on the surface (found at monthly check ups) and was removed by laser and the last 4 times by kryo surgery (the last one in March 2009). Mouth was VERY sore the past few months and had PET scan last week. Cancer is in mouth, tumor in neck by L jaw bone and lymph nodes. Biopsy was taken few days ago and I go tomorrow morning (I guess this morning now) to find out what kind of cancer it is and what kind of surgery I will need. I am so terrified I can't sleep. I will continue to use this site for information and hopefully support.

Welcome to this site.

I am also new here and have found this site to be a wonderful source of knowledge, moral support and simple-but-helpful tips about my situation and about oral cancer in general.

I sympathize with your situation, especially that you've had so many surgeries. Be strong and do continue visiting this site. Members will defintily be able to help you.

Best of luck to you.

Jojo

BJ,

You have found the right place to help you through. Folks here are the real deal and helped me tremendously as I moved through treatment.

Good luck and let us know how things are progresing.

kelly

OMG - what you have been through! 11 surgeries?? I am assuming that this was an ENT or some such who was providing these services, and let me be the first to tell you that you definitely need to get to a Comprehensive Cancer Centre (aka "CCC") where doctors from all disciplines of Cancer - Medical Oncology (chemo - dr aka as your MO), Radio Therapy (radiation - dr aka your RO) and your surgeon work together to make sure that this thing doesn't come back again. It doesn't sound like you were offered those options in the past.

Welcome to the Board, sorry you have to be here, but we sure do know what the 3am postings look like - we've all been there.

Sending you a big hug - let us know how things go today.

Donna

First I need to apologize..I typed Blood instead of Bloop in a previous post on this thread. I didn't catch it so I'm sorry. I really did not mean to call anyone Blood. That said...Bloop, you sound like a very strong person. I love your attitude that you can handle the PEG. I agree...the mask sounds scary. I have not needed radiation so I can't give any insight, I wish I could. You have a lot of support here though and hopefully that helps.

BJ...welcome to OCF. 11 surgeries is terrible. My cancer was on my tongue also and I've had 4 partial glossectomies and man..they do hurt!! I'm so sorry to hear your cancer is back. You have come to the right place to support. There are some wonderful people here. You may want to start your own thread so all the comments will be focused on you. You may want to start one in the Introduce Yourself section. I look forward to getting to know you and supporting you through this hard time.

I had the mask made Tuesday and a CT scan. Then for some reason they called Wednesday and I had to go back and redo everything. I didn't see the doctor, just the technician, so I don't know if that was bad news or not. Anyways, the good news is I didn't have a panic attack with the mask. I hate the thought of having it on 35 more times but I think I can deal with it. Surprised myself even. I think I start radiation treatment next week. Thanks to everyone. Suzanne, no apology for Blood instead of Bloop. I knew it was just a typo. I've been a typist all my life. "Bloop" is for B as in Barbara and last name spelled backwards (Pool).

Barbara, I know how scary all this must seem to you. I thinl you are going to get started with treatment before I do. I am doing a practice run the 24th and then officially start treatments chemo and rad on the 30th. We can do this together. The port did not take 30 minutes to place, but did have an hour of recovery after that. The PEG is what has bothered me the post through this whole thing.

Oh I hope your peg feels better soon. I'm getting mine Friday and I know the weekend is gonna be another "recuperating" time. I'm sick of it. My gums still hurt. Actually I broke my shoulder three years ago and it still hurts. So I guess I have to consider myself lucky that my first 59 years were pain free, except for child birth. Now the rest of my life is gonna be not that great. You are too young to start this. But we'll do it.

You both will be fine. Remember even if it does get bad, it's usually only about 7 weeks (week 4 thru week 3 post Tx) and you have all of us here to make that journey as easy as possible.

Eat as much as you can now, especially your favorites, especially the really fattening ones. Even though you have the Peg keep swallowing every day during and post Tx.

Think of that little red train going up the hill, I think I can, I think I can, I know I can....

Bloop,

It's not bad news that they re-did the mask. They really need it to be perfect. Dana's radiologist had to re-do his calculations because Dana has plates and screws in his neck. You really want this to be right so it will work! Best of luck to you. When the treatment is over and you're not seeing these people every day, you'll actually miss them!

Diane

When they put that mask on just go to your happy place and try to take a nap. It isn't that bad. And in my experience the tech's were close by and on the one occasion I got sick (chemo related) - one of them must be a real fast runner because he was there in a flash.

I agree with David - eat, eat, eat all those things you want to eat and haven't because they are fattening. Now is the time to eat whatever you want and enjoy!

Before you know it, that PEG will be like an old friend..... always at your side and alot of times you don't even know it.

Bloop and Angelina,

I think it's nice that you are both starting this journey together. You both really seem to be doing great. When I found this site it made me feel good to know there were other people in the same boat so I imagine knowing that will be a good support for each of you. I will support you every way I can:)

So what are you ladies going to eat? I would be sure to eat pizza and a cheese steak. What are your favorites?

xoxo

I've seen a couple of mentions here about the techs doing the radiation. I just have to say that the ones I had were the greatest, upbeat people I have ever met. It must be a tough job dealing with the likes of us, but they were always there with a smile and encouragement.

It does take a special person to work with cancer patients. Some of them have been less than kind but they are usually the ones in the billing department...lol I LOVE my docs nurse at Fox Chase. Everytime I'm there she says "Hi Suzanne...how are you?" In the sweetest voice. We chat and talk and I feel like I'm visiting an old friend. I don't know if other nurses work with my doc..I always see this one:)

Never met a person at Fox Chase that I didn't like.

Now I'm going to be one of "them", but not sure exactly what my duties will be.

Bloop,
How are you doing? Did not get a PM from you yesterday. I know you have that dang PORT and PEG placed. Just wondered how you were doing with it.

Yeah, I got the port and peg in yesterday morning. I have basically just slept since then. I need to take a shower and clean around the tube but I want to wait 'til my daughter's home which will be in a couple hours. Is your peg feeling any better? Mine feels about like when I had a hysterectomy only higher up. I hope it feels better tomorrow.

Mine still feels horrible, Can you take a shower with the port? I was told I could not shower for ten to 14 days or until the stitches came out. Got your PM.

Angelina,
10-14 days seems long. I do not recall waiting more than maybe 4 days. Also, you can protect the port with a plastic bag or tape. (check with our team though.)

M

She said I could shower and I do. I don't know that there are any stitches in mine. The doctor said something about using super glue - I think she was serious. There's just some plastic on my skin. It is now a week since my PEG placement though and it still hurts. I have an appt. Tuesday. I'm hoping she says it's okay. I think it is, but I just wasn't prepared for the pain.

Please hang in there. i'm with you in my thoughts and added you as a prayer person tonight. did you dentis just find this on your floor of mouth? i got a biopsy for the same today. i'm dumb founded and scared to death. you will do fine! i'm a survivor of soft palate. 5/2008. i got my one year good to go in 7/2009. now this new diagnosis. it really sucks. but i was told and i'm sure yo have been too. God never hands us more than we can take." Bless you and your recovery!

I'm trying hard to hang in there. I had my first radiation today and tomorrow I have my first chemo-radiation day. I had an appt. with the chemo nurse to explain all the side effects before I go tomorrow and some rules to follow. I am certain I can make it through one time, but oh I would just be a mental case if it recurred after all this. I was already told once when they removed the thing under my tongue that I was "cured". Next thing you know it's in my lymph nodes. I know they are radiating both sides of my neck and under my chin, so I hope it doesn't go anywhere else but when I read about cancer that has spread to the lymph nodes I don't see much good news. I had a neck dissection but the lymph nodes that were cancerous were poorly differentiated so I guess anything can happen if they don't get it all killed.

I found it helpful to go to the chemo drug's website to get all the info on side effects. My husband had some that were deemed "not" effects of the chemo but when I checked it out they were listed on the website. It's important to be well informed so you don't panic if you have unexpected issues. Best of luck to you!

Bloop,

I was Dx'ed a Stage IV and had nodal involvement and I'm alive and kicking 3 plus years post Tx so have confidence in your doctors and your Tx and you too can beat this crap.

Bloop,
You will get through this. I now have fours days behind me and each days gets easier laying on that tables. I have gotten to where I know the sounds and when it is over. I also listen to music while am in there and think of happy places I would like to visit and visualize them in my head. YOU WILL GET THROUGH THIS!