Wow..Thank you all for all your help!!Your honesty with everything is very appreciated! You are all strong, brave people, and should be commended! I need to tell my mother in law about this site. She was just diagnosed in October with stage 2 breast cancer. ( Yes, I have been thrown both of these curve balls within a couple short months from each other..EMOTIONAL OVERLOAD!!! LOL)...But anyways, I have been telling my dad about all of you and your words of wisdom, and I think that it makes him much more confident within himself..He's VERY stubborn and is still in denial(& scared) I think..He won't tell friends/family/coworkers that he has cancer..Instead he just tells them that he just keeps getting tests and sees different doctors. I know that he is scared, but I wish that he would just be honest with people..He has a large group of friends that would be sooo supportive, but I don't think that he wants to tell them because he thinks of it as a burden..If anyone has any advice on how to handle it from my perspective..please feel free..lol
Thanks again and again and again..lol
Amber

Amber,

He will feel much better with help from his friends, he needs to tell them. I have always been, and continue to be, a do it for my self kind of guy. Im not one of those warm and fuzzy kind of guys but it really helps to have someone to talk to that is close, but not too close. Please remember, as Gary points out, inoperable is not always bad news with this type of cancer and even that can change after he completes his other treatments.

Glenn

Hello Amber,

Welcome to "The Oral Cancer Foundation". My name is Dan Bogan, aka. (danny boy) and I also had a stage four tumor on my right tonsil. Mine was operable. They split my jaw midline down my throat curving around to my right ear. That was followed up about eight weeks later with 33 IMRT radiation trearments. My treatment ended in early November 03. My tumor was roughly 6cm and poory differentated. After surgery they told me the radiation would kill any remaining cancer.

Do you know what type of radiation he will be receiving? There are usually two types given.
One is called field radiation and the other is called IMRT. Field radiation covers a larger area
and can have more side effects than IMRT. IMRT is kind of like a sniper rifle, more exact in where they direct the beam. The radiation itself is not painful with IMRT. I'm told with field radiation you tend to get mouth sores, lose some salivary glands, get a burned neck etc.

I had a reoccurance in my lungs and in the original surgical bed (throat) in June of 04. I have been receiving chemo three times a month since June/04. My last chest x-ray ten days ago came back clear. The last mri from June/04 showed a slight increase of activity in my throat. I feel fine and feel the advice you have been given is sound. After all "Who better to ask than one who has traveled this journey ahead of you"???

I wanted you to know you are not alone in dealing with this bastard of a diaease. Post any question you can think of and someone will answer. Your now part of a huge international cyber family.
Write down all the questions you have before you see his doctors. You will never remember them all during the appointment.

Go on the search part of this website and read some of the older postings. Knowledge about the treatment and options will empower you. It sounds like you might be his primary caregiver. It is one tough job. We tend to vent at those close to us. Ignore it We still Love You!!!!

Hoping for the best of treatment for your Father.
Please keep us posted as he starts his journey.
Enjoy the Holiday's as best you can!! Your Father will want you to!!

Danny Boy

Hi Amber,

You need to get your Dad to log onto this site. I'm certain it would help assuage some of his fears. Scared is the emotion we all felt at dx. For me, not of dying, but of the unknown. It is difficult to discess with friends and family when you have no idea what is going to happen. Having this cyber family from around the world who have already been down this path and are willing to support him and answer any question we can should take some of the fear out of him. At the time I was dx, there were no support groups and no web sites and I can tell you, going down this path without them is really scary.

The other thing I would like to mention is I do hope he is getting his treatment at a comprehensive cancer center. He should have a whole team of drs, dietician etc. that are explaining these things to him. Make certain someone goes with him to all his appts and writes down hte answers to all the questions. It is just too much info to process and remember all at once.

Take care,
Eileen

Hi Amber,

I am a new member to this site too and I think you will find it extremely helpful. My husband just finished 7 weeks of radiation treatments on his throat 3 weeks ago. He did not have a feeding tube and he lost about 35 lbs. which he did not need to lose. The radiation was brutal on him. The doctor's told us it would be, but I didn't believe them. My husband is in good shape, strong, really healthy, I thought he would show "the radiation" a thing or two. Boy was I wrong...What I noticed most was he got fatigued easily and his throat was so painful. He was pretty much on a liquid diet but even that was difficult sometimes. Certain protein drinks would burn his throat, so we did and are still doing a lot of trial and error where food is concerned. If your Dad doesn't get a feeding tube, make sure he keeps eating. Lot's of small meals throughout the day. And keep on top of the pain meds, we learned to make sure the pain meds never wore off, even if it meant setting the alarm at night. Good luck and just remember you are not alone in this fight! You are in my prayers.

Take care,

Shelley

Thanks again to everyone..You have all helped me tremendously!! I have about 3 pages of questions to ask to all his doctors..lol..Right now, I am just trying to keep him positive..He has cabin fever pretty bad because he has dizzy spells and we told him not to drive, so I go see him everyday even if its just to take my son up to his house so he can play with him for a bit and I have been keeping him stocked up on soups, I even made some French onion soup for him this morning(his favorite)..He is normally at work and now for the past almost 2 months, he hasn't been able to work because he can't stand on his feet too long, not to mention the pain..
His newest dilemma is dental..He has to go to the dentist and have an exam, which I know that he needs some work done, but he doesn't have dental ins., and we all know that its not cheap..So he wants to find out if his health insurance will cover it somehow, considering that he has to have it done before he can start his treatments..He goes back to the doctor next week(ENT) and we are setting up the appt. to speak to the radiation dr. I guess we just have to be patient until the ball starts rolling...Once again..Thanks to all!!! Best wishes and you all are in my prayers!!
Amber

Hi Amber,

You still haven't indicated whether your Dad is getting treated at a major cancer center. When you see this dentist, you may be surprised to find that he recommends pulling some or even all of the teeth. Sometimes they pull anything that is in the field of radiation. This is not always necessary and depending on what you feel the condition of your father's teeth is, I would seek a second opinion from another maxillofacial prosthodontist that treats cancer patients.

As to payment, I needed a letter of medical necessity to have the teeth pulled in the hospital and to have it covered. However, medical would not cover the partials I needed which cost over $15000. Unless there is some major problems with decay that can't be repaired or the roots, I would try to keep the teeth. It is hard enough to eat after radiation without not having any teeth to chew it with.

Take care,
Eileen

Hi Amber,
Call your fathers medical insurance company and explain the situation to them about his dental. I had close to $7000 worth of work done before my radiation began and it was all paid for through my medical insurance and I DO have dental. Medical picked it up because the work being done was necessary to save some of my teeth. My dentist did what they called a "peer review" with one of the insurance companies MD's and it was approved. It's worth a try!
Good luck
Minnie

Amber, welcome to the site. Sorry you had to find us, we will help you and your dad as much as possible. I had tonsil cancer as well which moved to my lymph nodes as well. That's how I first found the cancer, while shaving. My lymph node was only 3.1 cm, though, so your dad is a little ahead of me. My treatment plan was to have radiation with chemo first, then surgery after that in the hopes that rad/chemo would shrink the tumor enough to make the surgery much easier due to the reduced size of the tumor. This was after a tonsilectomy in which the primary cancer site was found by the pathologist who examined the tonsils after removal. This treatment plan worked well for me as after the radical neck dissection, I was found to be free of cancer, even the tumor in my lymph node. Cancer free is a good feeling, and your dad could get the same result.

During the treatments, I had the feeding tube, also known as a peg, inserted. I don't think rad should be administered without the peg. I lost 50 pounds, 25% of my body weight, even with a tube. It got so I couldn't swallow my own saliva due to the rad treatment, so a peg was absolutely essential for me.

I also was not interested in learning anything about the treatment for this disease. I felt I could get through anything I had to, but the anticipation of knowing what to expect would cause me to deal worse with what was coming as I would anticipate the worst. So I didn't even let my saintly wife tell me anything about the treatment and didn't start looking at this site until after the treatments ended. That was before surgery, but I had had other surgeries and knew what was coming, so I didn't worry about knowing what was coming.

As far as insurance and dental goes, my medical insurance paid for all of my dental that was needed for the treatments, including periodontal cleaning, two extractions, iodine trays for after treatment issues, and they have authorized over $11,000 for dental bridges which I will start on after Christmas. So talk with your insurance and they may help you out.

Will pray for your dad, you, your mom and the rest of your family. Tell dad that he can get through this. Its a major pain in the back, or lower, but just keep a good attitude and he can beat it.

Thanks again to all of you!! Actually I got some good news today about his dental care..a friend of the family has a son in law that is a dentist and he told us that he would do all of his dental work for FREE!!!! That kind of gift doesn't come along too often, its been an absolute blessing!! We go to the cancer center on Monday to meet with his team and go over his therapy plan and to do a "Simulation"? I'm not sure what that means but I know that they told me to plan on being there for atleast 2-3 hours..So the ball is finally starting to roll, but I will keep you all posted on our progress!!
I hope you all have a wonderful holiday!!
Amber