Posted By: jc really a rookie here - 05-08-2006 11:52 PM
I hope I'm doing this right. My brother has been diagnosed with squamous cell cancer of the right tonsil. He's late stage three. Friday he has all his teeth pulled. In two weeks he begins chemo and radiation. He's so scared and so are we.
Posted By: Mark Re: really a rookie here - 05-09-2006 12:23 AM
Welcome JC,
Please have him ask if the teeth really need to come out. I went through radiation and still have all my teeth. It makes eating with less saliva easier.

I understand the fears you have and you can feel at ease coming here to ask for help.

Take care
Posted By: Daniel Bogan Re: really a rookie here - 05-09-2006 04:03 AM
Welcome to the Oral Cancer Foundation jc.

It's very normal to be scared about this diaease. We all are at the point he is at. I was a stage 4, right tonsil also. Going thru treatment is no picnic but many of of have and survived. I see no reason why he can't to.

If you go to the search engine at the top of the page you can read many postings about treatment and it's side effects. The more knowledge you have the better questions you will have to make sound decisions about his treatment.

Like Mark says many of us went thru without getting our teeth pulled. Has he had a second opinion on his condition? Is he being treated at a Comprensive Cancer Center?
You want someone who sees alot of what he has treating him. A team of disiplines that come to a mutual decision on how best to treat him. Again welcome and let us know how he's doing.

All my best, Danny Boy
Posted By: Gary Re: really a rookie here - 05-09-2006 06:54 AM
JC,
I'm also a 3+ year right tonsil, stage III/IV survivor and I also kept my teeth. Unless his dental hygiene is bad or he has gum disease, these is no good reason to pull teeth. Tell us more about his recommended treatment plan.

Oh, and yes I was scared sh*tless for some time. They have some great antianxiety drugs out there for that.
Posted By: jc Re: really a rookie here - 05-09-2006 08:44 AM
They're going to pull the teeth Friday. He had a meeting Monday and they're going ahead with it.I don't know what shape his teeth are in. I always thought ok. They're also cutting away a growth on his jaw but not that its cancer from what I understand. This is hard because he doesn't have a computer and doesn't know how to use one. He's 59. Are some of you that age? He's going to the VA in Ann Arbor Michigan for his treatment. Some of the Drs. there also work at Ann Arbor Medical school. I would think a VA would see alot of oral cancers. He only has VA and Medicare for insurance. I was wondering if any of you had a salivary gland removed ahead of time and then had it replaced after all treatment was done?

I wonder how much I should pursue this teeth thing with him. He's been agonizing over it and now has made the decision. I hate to keep him freaked out with more questions. I think they're arguement is they don't want down the road to have cancer go into the jawbone.
I'll have so many questions. Thanks for your help.
Oh yeah, what is IMRT?
Could someone who did have their teeth pulled tell me what the reasons were?
Posted By: jc Re: really a rookie here - 05-09-2006 09:02 AM
Another thing I thought of. Having the teeth pulled delays treatment another two to three weeks. That's scarey too.
You all have to go through so much. I admire you so very much.
Posted By: Mark Re: really a rookie here - 05-09-2006 03:07 PM
JC, The usual reason teeth are removed is because radiation can cause poor teeth to become worse. Radiated tissue heals more slowly and can result in serious complications in the bone, if teeth need to be pulled after radiation. Removing teeth is "Old School" unless he has poor dental health. It is worth the time to be seen by a dentist that is familiar with radiation.

Asking questions of his doctors is the only way to get the answers you need. The patient is usually so fear-struck that they often do not listen well and do not ask enough questions. Does he have a family member that can go with and take notes?

IMRT is a radiation delivery system. It is generally considered to be the better system to accurately deliver the radiation therapy. If he can get it, it will probably mean less long term side effects. I don't know of anyone here that has had the salivary gland relocation procedure. It is very new and I do not know where it is being done. If they are offering it to him, he must be at a pretty good hospital.

You can search this forum to get answers more quickly by clocking on the "search" word at the top of the page.

Take care
Posted By: Rainey Re: really a rookie here - 05-09-2006 03:51 PM
I was diagnosed with stage 4 cancer of the right tonsil in April 05. I had my tonsils taken out, then a radical neck dissection then radiation and chemo. No one ever said anything about having any teeth pulled. My dentist says my teeth are looking good now. I was terrified of the radiation treatments and they were bad but I got through them pretty well all things considered. Something that helped me was a book a friend gave me called Getting Well Again by O. Carl Simonton. It made me look at the treatments as something to be thankful for rather than something to dread. The treatments are what kills the cancer and that's a good thing. I finished my treatments in early September 05 and I am back to what I call the "new" normal. I can do everything I did before, work out at the gym, play with my daughter, volunteer. I was given a drug called Amofostine which helped preserve some of my salivary glands but I did lose some so my mouth does get dry and I can't eat a lot of things I used to and what I can eat I can't taste. But I am grateful for the good things. Your brother is lucky to have you to support him. I wish you luck and blessings.
Posted By: Cathy G Re: really a rookie here - 05-09-2006 06:20 PM
jc,

You may be right that your brother's hospital sees a lot of oral cancers. My oral surgeon told me he had done his residency in a VA hospital and saw plenty of them while he was there.

However, I'm with those who think you should get a full explanation of the reasons why they want to pull all of your brother's teeth. I had conventional field radiation 17 years ago and have never had a single tooth pulled in my life. (I was 39 when I was diagnosed and am 56 now.) My teeth were in pretty good shape back then and, while I've had to deal with some dry mouth issues, I haven't had to have too much in the way of major dental work in recent years.

Cathy
Posted By: aussieh Re: really a rookie here - 05-09-2006 06:44 PM
Hello jc

Sorry your family has to go through this journey. Like others I had radiation to both sides of my neck and throat for rh tonsil cancer.

An oral surgeon oncology specialist assessed my teeth prior to any treatment and decided that a couple of 'dodgy' back teeth should be removed. This was because they would leave 'holes' in the jaw if they caused problems and needed extraction later in life. The radiated jaw bone does not heal normally and infections etc can easily occur.

The removal of the teeth had nothing to do with the actual radiation process.

Like Rainey I welcomed every treatment and visualised a clean healthy throat as I received the ray. It helped me.

Love to you and your brother from Helen
Posted By: jc Re: really a rookie here - 05-09-2006 08:51 PM
This is very tough. He's having the teeth pulled Friday. He is also going to have a piece of jaw bone removed. Its not cancer but he couldn't remember what it was called but they said it should come off. The VA didn't suggest the removal of salivary gland and add it later I had read about that procedure. I wish I knew why they're suggesting all the teeth go. At first they suggested 12 teeth in the back but said it would be best to do them all. What can I do now?
Posted By: jc Re: really a rookie here - 05-09-2006 09:11 PM
Is the IMRT radiation system like the mask that my brother told me he was going to have done? My brother lives in Michigan and I live in Minnesota. His wife went with him to the meetings at the VA but it seems like they both were so shell shocked I can't get alot of specific treatment out of them. They know generally what is going to happen just not the names of the drugs etc.
Posted By: lenny polizzi Re: really a rookie here - 05-09-2006 09:34 PM
Hello JC,
I have recently finished 33IMRT and 3 chemo, as well as a neck dissection. This was all for SCC of the right tonsil with mets to one lymph node, all of this was done between 11/05- 01/06, so not that far ahead of you. I did not have any teeth pulled but now am having some problems in fact I will be starting Hyberbaric Oxygen treatments this thursday for osteradioncrosis (ORN) as a result of radiation, this does not happen to all of us , in fact not many, you just don't want to deal with this on top of everything else, dental care is essential with this treatment. They remove teeth to prevent problems down the line. JC just remember we are all here to help and support you. Find out and gather as much info as you can , become an "expert". This is very doable, a pain in the ass but it can be done. It is scary, man I still am scared out of my wits at times, but you guys can do this many of us have, so will you and your husband. by the way most of us are in the same age group, relativly speaking, I am 48 for a few more days. Oh yeah one last thing if your hubby smokes he has to drop them yesterday, I was a heavy smoker for 35 years and it was not that hard to quit if you are scared like I was.
You will do this.
Always lenny
Posted By: michele Re: really a rookie here - 05-10-2006 06:32 PM
JC - My husband's radiation oncologist (RO) recommended that he have his lower teeth only pulled. His teeth were not in the greatest of shape - no active cavities or anything, but he had had a lot of dental work earlier in his life and had splints in his lower jaw area holding his teeth in. Anyway, the reason the RO said the lower teeth only, was because he said the upper teeth are fed by a separate blood supply than the lower ones, and that having future dental work on the upper teeth does not usually pose a problem as far as the bone not healing. So my husband did have his remaining lower teeth removed. You may want to have your brother ask them to spare his upper teeth if they are in decent shape and if in fact his doctors agree with what was told to us. Upper teeth are better than no teeth. My husband survived his radiation and chemo treatments and a radical neck dissection following that, and is recuperating now. Wish I could say that he is eating, but he hasn't regained the desire to eat yet and is still using a feeding tube. Has some problems with nausea on and off as well, but overall, he is much better. best of luck to your brother.
Michele
Posted By: upstatesteve Re: really a rookie here - 05-16-2006 03:07 PM
hello all, reading all these letters is bringing a tear to my eye. had all my teeth removed. 39 imrt's 3 chemo's, i'm not sure of the number of amofoststien's but i do remember they were everyday. spent 5 months living in the cancer ward. had numberous infections from port's that after a while just went bad. what i tried to forget about is all coming back reading this forum. i was released from the hospital to go home and heal. i thought for sure i was going to meet my maker. day by day went by slowly, but i began to feel better. better than the last 6 month's, that's for sure. began speech pathology for speaking and swollowing. got fitted for dentures, now i have a smile i never had in my lifetime, ear to ear. graduated from speech path after 53 week's, nothing more they could do for me i was healed. 2 day's after graduation my cancer was back 3 week's after that my larynx was removed.this operation was 6 week's ago. still getting used to not being able to talk, but i still have a beautiful smile, and i'm still here, which if i was a betting man i wouldn't have taken that bet.what i'm trying to say is, having your teeth pulled (although it sucks) really isn't that bad as long as you are still here! you will learn to live a little differently, live being the main word. god bless all of us
Posted By: JAM Re: really a rookie here - 05-16-2006 06:59 PM
Dear Upstatesteve, you sound like a very courageous person. Good Luck. Amy
Posted By: outdoortexan Re: really a rookie here - 05-18-2006 12:13 PM
Hello jc. The fears y'all have are normal. Without fear, we would not question. Be sure there are people out there for moral support. Just drop a note. Sorry you had to join us, but glad you found us. ake care and God bless, Curtis
Posted By: outdoortexan Re: really a rookie here - 05-18-2006 12:15 PM
I cannot begin to imagine the trials you are going through,upstatesteve. God bless and best wishes, Curtis
Posted By: Gary Re: really a rookie here - 05-20-2006 08:33 AM
JC,
I'll be 59 in June, I was originally Dx'd when I was 55.

All H&N rad treatmenets are done with a mask to imobilize the head and present an accurate and repeatable target. It's not as big a deal as it seems. You get used to it really quickly.

They don't actually remove the salivary gland, they just relocate out of the radiation beam field. It;s a pretty new concept.
Posted By: upstatesteve Re: really a rookie here - 05-21-2006 10:44 AM
i still have my mask. don't know why, i guess i really do. when my imrt's first started i think they were 43 minutes long. at first i was scared too. after a few, it was a nice time of day to take a nap. your not going anywhere. i can recall my siliva not producing after. sure i had salagen just like everybody else. i went to the supermarket in the gardening section i found a little spritz bottle for watering plant's. this worked great, carried it everywhere. once i finally was fitted for dentures, the siliva problem went away. i guess your body respond's to a foreign matter in the mouth. my siliva glands began to work normal again, thank god. i dont know if glands stop working and then restart again. but i have a full bottle of salagen, haven't taken one in month's. now that i'm a laryngectomee, i can't smell or taste. this suck's alot. does anybody out there have a home cure for this? i'd love to hear it i'm starting to get teary, going upstairs to get out that mask, write to ya later. god bless us all
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