Well the other day he kept talking about biting his tongue, now I thought it was weird because: he does not complain and also being that your mouth is one of the fastest areas to heal I found it peculiar he was talking about it for days. In fact when I was cleaning on Sunday he came up to me and told me he was very troubled over it which was just so out of character. Usually he is the first person to tell everyone that things are nothing and to have faith but this time he was acting so different.

He then came down Monday morning still talking about it and how he called the nurse to see his doctor and they could not get him in until Tuesday, so finally I asked him what was up and he should me on the side of his tongue there is like an extra growth of skin that is sort of flat and twisted not red but a bit white but not like a canker sore white or ulcerated just solid. I honestly did not notice any white color until this morning but anyway it freaked me out and then I started Googling which he already did and mouth cancer, tongue cancer is so deadly with a horrible survival rate. He does not smoke, drink or chew tobacco but he did smoke like over 22 years ago. Also after biting his tongue about 2 weeks ago our 3 year old accidentally was playing below him horsing around and my husband had his jaw loose and the little guy smashed right up into his chin smashing his teeth and making my husband bite his tongue until it bled. A few times after that he was biting his tongue and tasting blood which is odd.

So anyway he got an appt today at the same time as me which was really bad because he had to rush back for Luke to pick him from preschool. He has also for the past few months been clearing his throat a lot, now yes, our little ones have had some colds and he go them too as well as having allergies so it was attributed to that but I kept asking him to get that checked out because it seemed to go on for a couple of months. So the doctor saw him and it was so rushed, but he did not think much but there is apparently a hard spot or something in the area that hurts a lot so he said that he should go to an ENT. Now, they could not get him in until Monday in that practice so we booked that appt and made one for tomorrow with another ENT. He never got to tell the doc about the clearing of the throat or anything and the doctor did not feel his glands etc. What he has looks just like the pics I am seeing and where my husband is normally cheery and have faith kind of guy, this morning he was preparing me for the worst and life alone. He thinks it is too and that is what is freaking me out really bad. It is like in one day our life has been turned upside down.

Caroline,

First, take a deep breath. Now, look at my signature. My husband was diagnosed with Stage IV cancer and he is here today, 5 years later with no evidence of disease. People with dire diagnoses do survive this disease all the time.

The fact that you have an appointment with an ENT on Monday is good news given that we see people who are put off for a month or two. I know it is scary but your ENT should suggest a biopsy if the area in his mouth indicates it. Get those results and then we will guide you to the best places for treatment. One day at a time here and know that it is not cancer until the biopsy says it is.

Hugs, Deb

Thanks Deb we actually go to one of the ENTs tomorrow at 1:30 pm, everything I have read on the internet had me so depressed and my normally upbeat husband was preparing me for the fact that if it indeed was the rate of reoccurrance was so great that it was basically a death sentence. I have not stopped crying everytime I think about things.

All of us who have been thru this know that feeling of being overwhelmed and reeling with all the decisions that accompany even a chance of a cancer diagnosis. Because of that, we can empathize with how you feel right now.

See what happens tomorrow, and if it looks like you are headed down this path, keep coming back to this site and read as much as you can. I think you will find that the statistics are just that and that there are plenty of people here that have successful outcomes.

Good luck tomorrow,

Deb

Here are links to what it looks like, to me it looks so bad.

http://i647.photobucket.com/albums/uu199/JandC06/tongue.jpg

http://i647.photobucket.com/albums/uu199/JandC06/tongue2.jpg

http://i647.photobucket.com/albums/uu199/JandC06/tongue3.jpg

Caroline,

This might not sound like a really good outsome kind of thing, but listen as I explain what my husband Reggie has been through.

In Dec. 2006 the dentist found a troubling spot in the back of Reggie's throat. 1 month later after some scopes and an MRI it was determined he had SCC of the soft palate. Stage II. After months of rad and chemo the doctors told us no more cancer. 2 years later to the month, his voice went hoarse and he could hardly breath. Scopes and MRI's later he was diagnosed again. This time it was SCC of the larynx. Total laryngectomy and 2 nodes removed in 2010. This past October, with a soar spot on his tongue for a week back to D. Scopes and another biopsy and he now has SCC of BOT stage III. Surgery is scheduled for Dec. 5th. Partial glossectomy and opharyngectomy and reconstrucvtive surgery and he will be cancer free once again.

I know it is the most devastating news you will get. But I am proof as wife that you and your husband can and will get through this and survive. It won't be an easy journey, but you must be strong and your must be informed and you must fight!!!

You will look cancer in the eye and fight back. Life is too precious. The worst part is not knowing and thousands of thoughts racing through your mind constantly. You are here and I have found it's a very informative and supporttive place to be.

Keep posting and letting us know of your husband's situation.

I just want to say that I have been talked down from the ledge lately here at this sight. I handled the first two go rounds with no problem, but this time I'm thinking the worst. Everyone is right when they say take a deep breath and quit thinking the worst until you have some sort of evidence. Treatment as advancwed tremendously in this field.

Stay in touch

Caroline,

Everyone here would dispute the death sentence.

If it makes you feel any better, the pictures don't look bad at all.

Mine looked like the first picture except about 8x the size (the ridges ran from the tip of my tongue all along the left side, to the back where my throat is). I had the surgery, and found out today that I will not be required to do raditation.

I have been back at work since since 3 weeks after the surgery, talking and eating solid food.

If it is bad news, you will deal with it, and we will help.

Good luck tomorrow!

Thank you all so much I am so glad to have found this. It is just so hard not knowing, you are right about that. Then the holidays and I can't help thinking what will happen. I find myself bargaining with God and begging for him to let this be okay and just nothing. With five kids and the youngest 3 and 5 it is so hard for us, we are going all the time and I cannot even imagine doing it alone. We don't have any family around, and I am so scared. Thanks again. Tina, how long did yours take to get as big as it was?

Caroline, please do yourself a favor and calm down. I know its very scary right now when you dont know whats going on. It could be nothing so preparing you for a life without having your husband is going to the extremes. Its always upsetting when there is the possibility of having something serious wrong.

With the ENT tomorrow, a diagnosis will still be unlikely. A biopsy would need to be done to determine exactly what the sore is if anything besides scar tissue. Since you wont know for at least a week or two, try to stay busy going about your usual life style. With having 5 children it should be pretty easy to stay busy. The ENT your husband is seeing should specialize in oral cancer. Some practice mainly in the field of putting tubes in childrens ears.

Hope it turns out to be nothing! Best wishes!!!

Hey Caroline!

Oh my gosh... Its OK. Just hang in there until you get a definative answer - that only a biopsy will tell you. I have no idea from your pictures if its just an abcess or what,

Just try and be calm. I know its terrifying - belive me I know...
but you don't know what this is and until you do for sure there is not reason to go into panic mode and even then its totally and completely counterproductive to go into panic mode thinking that if he does in fact have cancer its a death sentence and its over. I am proof that it doesn't happen that way all the time.

I was diagnosed with stage 4 tongue cancer and I'm still here tell you about it.

Whatever it is - you are going to deal with it as it comes because you can't afford to fall apart. You need to be strong and tough for your husband and your family.

Hang in there and I'm thinking about you. any questions don't hesitate to ask!!!! Feel free to contact me directly!

KATE

Caroline,

Please let us know what the ENT says.

Caroline,

I just want to say that coming to this site often and reading every post has really helped me with encouragement. It has also helped me to stay focused on the disease in a positive way. It is a learning experience here. Lot's of good info. It really helps the not knowing part. Trust me when I say this comes from my own experience.

Hi there... good luck with the ENT... they may want to biopsy the area in the first picture. It's scary as hell. It could very well be healing from where he bit his tongue. But better safe than sorry! Hugs... and hope he gets an all clear. If he does do keep a close eye on the area.

Thanks everyone we are on our way there now. Will update when we get home. Thanks for the support.

Okay sorry for the delay it has been a crazy day. We saw the ENT and she did a very thourough workup on him. She felt his lymph nodes and found nothing and she put a scope through his nose and down his throat and all looked good, vocal chords looked good, his ears, nose all good. She said he has the acid reflux which is causing the throat clearing and then she said the two spots on the back of the tongue were not anything but the one of the side she just wants to take completely off and send to pathology. It is small so she feels doing a biopsy is kind of pointless and to just take it all off and find out what pathology says. She said at this point we should not worry unless there is something to worry about. She said the only thing a bit concerning is that it has some dimpling but that still does not mean it is cancer. So that is where we are, he is also getting an upper GI series done for the acid and he will go in at 7:30 am on Tuesday to have this removed. She felt it with her hands and she did not feel anything that would make her think it was not just on the surface, so we are going to try and take her advice and enjoy life and not worry.

Good news so far! Let us know when the path results come back. I know you are feeling better now and can relax a little and maybe enjoy Thanksgiving.

So glad the ENT was able to see you so soon.

Gobble Gobble,

Deb

That is great news!

My tumour started at the back of my tongue and worked it's way forward. I noticed something wrong in Feb, and finally went to my doctor in April. She couldn't see anything (I could feel something but sisn't know what). It finally became visible neer the back in July, so probably about 8 months to get from your hubby's size to the size when it was removed.

Even if the pathology comes back with something, it is early.

Enjoy your turkey, and you have something to be really thankful for!

Great news... Hopefully if it is anything she'll get it all the first time out. best of luck.

Breath easy!!!

Hi everyone, he had the surgery today and he did well. She told me that she took it out with margins and then went back in and took out two more cuts. We go back in 9 days and she should have the results by then.

I have a question, let's say it is something but the pathology shows she got it all and the margins are clear. Is that the end, like with a basal cell carcinoma or does he still need to go through treatment?

Congrats on a successful surgery! Wishing a speedy, pain free recovery.

Most members here have squamous cell carcinoma. Thats what I had and am most familiar with. Im not familiar with basal cell carcinoma type of cancer. Some only will get surgery while others with more advanced cases or margins not so clear or with a suspected spread will need radiation as a clean up tool. At this point try not to worry too much about 'what if' the future holds. If its deemed necessary then the doctor will let you know what the next step will be.

Best wishes!

Mines was also squamous cell. My margins came back clear and my nodes were negative for cancer on the pathology.

My oncologist said because the recurrence rate is so high (30-40%), and there was some peri-neural invasion, and the tumour was relatively deep, I should still give consideration to radiation (although not chemo) as a preventative measure, but it was my choice.

He indicated there was no "wrong" answer, and it really is dependant on everyone's individual circumstances. I have decided to hold off on radiation for the moment, and keep a very close on eye on everything.

Good luck with the pathology results. Not saying this is cancer, and about 95 percent of H&N Cancer is Squamous Cell Carcinoma, the clear margins during surgery can come back postive from the frozen section sent out for further study. Basal Cell Carcinoma occurs in he skin. Not much you can do, other than worry, until the final findings are in, and have some faith that the doctor thinks it's not cancer.

Hi there.. if it's in the tongue I imagine it would be squamous cell carcinoma... but hopefully it's not. If the margins come back clear chances are they will not do anything after unless there is spread to nodes, or perineural involvement (usually if the tumor is deep it hits a nerve) At this point there is a better chance of microscopic spread. This may lead them to recommend rads (possibly chemo)

If they do not then definitely keep an eye out for swollen lymph nodes in the neck, and or unhealing sores in his mouth. If either happen then have him back in the office ASAP.

One of the mistakes some of the drs make is assuming they got it all but microscopic cancer can sit in the nodes and flare up later. This is why this cancer has to be monitored carefully. My dr. already knowing it was cancer removed a chunk of my tongue and despite knowing I had no node involvement also took out 40 lymph nodes... at the end of it he said in my opinion you are cured but still sent me for rads because between the biopsy, and CTs and MRIs a node popped up and by the time they did the surgery it had leaked some of its cells... this cancer can move quickly so hopefully they have nipped it in the bud... assuming it's cancer at all... I hope and pray it isn't... best of luck with the results.

I would encourage two things at this stage if by chance they are not already in progress: First, get a second opinion (including a review of the operative and pathology reports) by an oncologist specializing in oral cancer. The reason I recommend this is that the current doctor may or may not have specific expertise relative to his type of cancer, and if the doctor is a surgeon, a medical oncologist brings another, non-surgical perspective that can be somewhat different.

Second, be sure to have regular follow-up exams and scans, so that if by chance there is a later reoccurrence it will be caught as early as possible. The follow-up could be detailed oral exams by an ENT that involve a repeat scoping of the throat and possibly CT scans (detailed high-resolution x-rays) and/or PET scans (which highlight areas where there is more metabolic activity, as might occur from cancer or inflammation).

Think of both of the above as taking out an insurance policy to reduce risk. Good luck!

[quote=Caroline1972]I have a question, let's say it is something but the pathology shows she got it all and the margins are clear. Is that the end, like with a basal cell carcinoma or does he still need to go through treatment? [/quote]
Short answer: It depends.

In my husband's case (see my signature), what had initially been diagnosed as dysplasia (abnormal cells, but not cancer) did turn out to be squamous cell carcinoma when the whole white patch was taken out -- but it was removed at such an early stage, and with clear margins, that the cancer specialist ENT he saw after he got the SCC diagnosis said no further treatment was necessary. That said, he did go back to that ENT for checkups on a regular basis; the appointments lengthened out over time, and now he gets checked annually. (His dentist also checks him with a VELscope and refers him to an oral surgeon whenever she sees anything out of the ordinary; no problems so far, knock on wood.)

Others here have had clear margins, but because of concerns about possible spread, or the size of the tumor, or nerve involvement, or the staging that was determined from the biopsy and other tests, they've gone through radiation/chemo.

Here's hoping you don't have to be concerned about any of this -- but if it turns out that you do, you're in the right place for information and advice.

Hi everyone, we got great news, it is not cancer and no suspicious cells Thank God. She actually had the report a couple days after surgery but we got the official report on Monday. It said it was negative for neoplasia on all three pieces that were sent. I wanted to copy the report but my husband scanned it in and it will not let me copy and paste. But basically that it was mild acanthosis and subjacent parakeratosis but negative for neoplasia. Also the portion was squamous mucosa, submucosa and skeletal muscle showing ulcer with granulation tissue and showing mild to moderate acute and chronic irritation and negative for neoplasia.

I thank you all for your support and I pray for everyone's health here, you really helped us through a scary time and I am very grateful to all of you. Thank you so much you will never know what your support meant to us. God bless you all.

Caroline, that is just fantastic! Have a wonderful Christmas !

Congrats Caroline!!!! Always love seeing members come back with good news. Best wishes with continued good health!!!

Great news!

That's terrific. Now relax and enjoy the holidays!

So happy do you!

Congrats!