my father is suppose to have his tongue and voice box removed next week.We are scared and are trying to find someone who has been threw this.Can anyone help me?

Hello ferrall

It must all be worrying to all the family and your dad. The patient stories will give an insight into what to expect. If the voice box is removed, speech quality will be different - the Laryngectomy Forum has some helpful links. Keep us informed , ask questions and if we can will help, even if just to hold your hand.

Best wishes
Vinod

hi my partner eddie had a laryngectomy october 2003 he allso had radical neck diesection right and left and a bit of the back of his tonge taken away as for you being scared we all understand we all are it hard at first but you will all get there eddie doing well now he not got his old vioce he got a new one and so will your dad if there is any think you would like to ask if we can help you and your dad we will
barbara/eddie

ferrall, hows it going with you dad? my father just got his tonuge surgery on wed july 13...do far so good , if you need or want to caht drop me a message, we are both going through the same things right now...

My husband tongue in Sept. of 2001n had surgery dont, took 1/4 of tongue out, and some down stem of tongue, did radiation treatments by advice of Drs. They gave him shots every day through his radiation treatments to help with sliva , had sever reactions to shots, they never took actions for this,suffered severly with the feeling of 1000 bee stings to his whole body, thrashing for hours because of pain from shot reactions. Radiation to his mouth area was ok at first then two years his theeth started turning brown, crumbling off, he can't eat food hardly only spup, and ensure drink to try to keep healthy. All his teeth are dead, but if you try to have them extracted it will have possible jaw destruction, can't find anyone who will pay for treatments to our situtations. Thhet are going to be infected,as well as jaw structure Needs Hyperbaric oxygen therapy first for over two months befor they can even take one tooth out to see if it destructs his jaw. Blue sheild will not cover this procedure, they say its dental, dental will only allow up to 1000 dollars of his teeth to be pulled. We are very frustrated, confused, and scared to try to find any help anyplace . Vetrens even denied us. We should have been better advised about the reprocussions of having radiation done to the mouth, things seem so much worse for us. What do we do? Can't find an answer yet. Good luck with you, hope your situtations turns out much better than ours. Bless you and your father

Tell me who pays for complications after radiation treatments to the mouth, tooth crumbling off, jaw will be infected, or destructed if you try to pull a tooth. We did everything we were told to do before treatment, but they never advised us his mouth would self destruct in the jaw, and teeth. Hope they find a better answer to radiation to the mouth area.
Blue Sheild won't cover it, they say it's dental problems, dental wont cover all of it because it could cost us over $30,000 by the time you need Hyperbaric oxygen therpy done for two months or better, just to try to do sugery on one tooth to make sure jaw doesn't self destruct. Very Angry over this, got cancer from second hand smoke!!! Thanks alot smokers.

It is so sad when I read posts like this. I have a very dear friend that has also had the same reaction to the radiation as you husband has had. It is so painful and awful to have to read about. It is so inhuman to me as well. If there is no quaility of life left then how is a person to continue on. If all there is, is pain, night, day, day and night...What does one do with it all...I agree with you when you say that we should be better advised...But we aren't...because the Doctors theirselves do not know...When I was diagnosed in 1989 I was the very first ORAL CANCER patient that my Doctor had had at that time.. I was terrified. he was too!!..Did he know what he was doing?? was my thoughts. His were can I help this young woman,, So I went to another Doctor that was well known with ORAL CANCER..I decided to go with the first one..Why? Because this man cared about me..I wasn't just CANCER Patient Number 345---I was Vicki, 32, mother, wife, daughter, sister,,human being..He did the best for me..Still to this very day. And I have seen a lot of Doctors over the last 16 years,,,He removed over half of my tongue, my lymph nodes on the right side and let me tell you,, I could still talk the same...I had a scar that no one could see...I knew it was there,,, but no one else ever did..It just looked like a wrinkle where it is supposed to be...He was my Doctor until this last time. This time it was out of his league..and he was man enough to say so..My friend, I spoke about earlier, he has lost all of his teeth to radition.. They all turned black and they are nothing but little pieces of bone now.. He is forever getting abcesses in them...The pain--it has to be horrible..I don't understand your insurance not covering it tho...Mine does...however I can't find a Dentist that will do it...Because of the radation factor..If it is pulled wrong or something goes wrong you could die from this... This is something that no Doctor is willing to take on...What do you do tho in the meantime...SUFFER!!!! LORD that can't be right....There has to be something that you can do.I pray that SOMETHING or SOMEONE can help you with this....No one should have to feel like this...NO oNE....AlWaYs,,,ViCkI LyNn

Vicki, you need to check on an oral surgeon for the treatment. They don't like to do it either because of complications to jaw destruction, ans infections. But we did find one who is willing to try. With hyperbaric oxygen therapy treatments first, this can go on for several months everyday for two hrs. Then he will try to pull out one tooth first to see it's reaction , then go from there. Is this called a medical treatment or dental? that is what we are fighting our insurances about. We feel it is medical because it was radiation treatment that caused this. What do you think, shouldn't American Cancer Society be helping all of us? They tell us to use radiation to cure cancer, but they don't tell you it will destroy other areas of your body. Who's at fault, who do you blame, who should pay?

tpratt, I don't need to see a oral surgeon. I don't have any problems with my teeth,,,My friend does. I have had all mine removed...on the bottom anyway. the top ones are fine. So far that is..With all the money that the American Cancer Association has collected over the years, yes I think that there is SO much more that they could do for us. The one thing is to help us with the Doctor bills and perscriptions. Lord to see a Cancer Doctor is almost 200.00 a visit. Yes this is what I would do.humm let me see!!! Let's over charge them. This is what pisses me off. For one: We have lost our income because of the CANCER. Two: Most of us are stage 4 CANCER.. I mean we get NO BREAKS no matter how you look at it. The food that we have to have for the feeding tubes is $1000.00 a month... Yes sir...$1000.00 A month.. This is what I get charged every month. My insurance only pays a part of it..I owe over 5000.00 to food!!!!!!!!!!! I have to pay monthly pyments...They didn't bother to tell me this until the bill was at $3800.00. This is not including all the med's that I have to take daily...I mean I will go to my grave in debt.. That is not right....!! That is not fair!!! I mean I get Social Security but it is not that much. NO where near what I was making. NO where!!! I also have two retirements from my last employeer..However I can only draw on one of them. I have to be 55 to collect on the othe one..Come on now --Will I ever see 55????Please.....Who gets that money if I don't--no one!!! It goes back into the hopper!!!! That really pisses me off--I worked for 20 years for that--and now I am not even going to get to collect on it...You ask me who is at fault.I don't know that anyone is at fault..I was told by a team of Doctors that we all have cancer cells in us...We are born with them..What researchers have been trying to figure out is what makes some activate and others not...It is not heriditary they say so what is the cause..My Mother passed away of CANCER..Nothing like what I have tho...You blame second hand smoke...Well I don't know about all that either..As we were never around it...There are a lot of people that were never around it. Plus people have been smoking for centuries and there has never been as many deaths from Cancer like there is today...Perhaps they just didn't know what CANCER was....who knows...I was told that the radiation would destroy other parts of my body,, Chemo too....I knew this...I just didn't know to what extreme it was going to happen. Because they say this...Now this doesn't happen to EVERYONE---why--because everyone is different...Some people experience little to no problems.. Others have extremem pain and discomfort with it..This is when you ask---have you had any patients with extreme pain and distress..THey say what---Well no I havent' seen them but I have had colleages who have...This is where you feel safe again...Because it is not something that the Doctor see's a lot of...Yeah right..Who should pay you ask...Well NOT US!!! Aren't we already PAYING!!!! WIth our lives,,,our tears...I don't know about you--BUT-- I have paid BIG TIME!!!! Thanks for listening...Always Vicki Lynn