Hello TK

That is a tough diagnosis, but the TX does make sense. I am not a Dr. and do not have this type of cancer.

I have however read a great deal on this site and others. The one thing that "jumps out" at me is something I read about this awhile ago. He should be very careful about what he eats and try not to bite down or chew to hard. I think his jaw bone may be very brittle and it would lead to dire straights if it broke while masticating (chew) his food. Ask your Dr. about this.

Also, make sure he gets sufficient pain medication. And maybe one or both of you could use something for anxiety?

Keep posting. This forum will give you all the tools and strength you need to fight this beast. Ask anything, rant, and vent your frustrations, whatever.

Everyone here is either afflicted or is a caregiver. We will help you see the light, and help you emerge from this dark and terrifying situation.

My prayers go out to you and your family. Petey

In laymans terms it looks as if his disease is in the jaw bone an has spread quite extensively into the surrounding muscles and tissue.It makes sense that the tissue and muscle invasion will need to be treated with radiotherapy as they dont seem to have a clear margin of healthy tissue to measure against.The word fossa indicates a hole or space and infratemporal is the indentation at the side. of the hinge of the jaw. So my understanding would be invasive carcinoma of the mandible.The affected areas are to do with jaw clenching and chewing and the pterygoid bit is at the junction of the jaw bone just below the ear.I am not a Doctor but i am a registered nurse and this is only my limited view i am sure your Doctors will be able to explain it in full when you see them.

does anyone know about lueoplaskia i had a biopsy

Lolita -

I assume you mean leukoplakia. As you can see from my signature, my husband's dentist noticed a small leukoplakia -- basically, it's a white patch -- on his tongue and sent him to an oral surgeon for a biopsy.

Here's how the founder and executive director of OCF, Brian Hill, replied when I first asked about leukoplakia a year ago:
[quote] Leukoplakia is a PRE-cancerous condition that does not always move completely into malignancy. Dysplasia are those cells which are no longer normal, but they are not really malignant yet...an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction... and having them removed, or watched very regularly is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever. [/quote]In my husband's case, that initial biopsy showed moderate dysplasia (abnormal cells, but not yet cancerous), though a more thorough excisional biopsy (which removed it all) a month later showed it had moved into very early stage cancer. He has been checked regularly by an ENT at a top cancer center since then, as well as by the ENT who did the excisional biopsy.

Just a suggestion: So that your posting doesn't get lost under someone else's topic, start a new topic to ask a new question. It's easy -- just click on New Topic at the top of the page.

You'll also learn a lot by using the two search engines. The one at the top of each of these pages (in the center) searches the message boards; be choose to "Search All Open Forums" to get the greatest number of results. At the bottom of each page, toward the right in the dark gray area, is a Search button that links to the search engine for the main part of the Oral Cancer Foundation website. The information there includes a good overview of oral cancer, along with the latest news articles, scientific papers, treatment options, etc.

Please let us know the biopsy results. There are many people here who have been where you are now.

All the best,
Leslie

TK,
Liz had a lot of good information for you. I too had signifcant mandibular involvement, however surgery was performed in my case since the tumor had not migrated into facial soft tissue structures too extensively.

the tempormandibular joint is the hinge joint on either sides of the jaw. Trismus refers to the inability to open ones mouth. that's a very common thing for many oral cancer patients.

To restate what others have said..keep coming back here. There is a vast amount of first hand experience to draw strength from. You're both in for a tough journey, but it is not hopeless. Statistics will drive you crazy and really don't mean anything to you individually. concentrate your efforts on getting treatment underway as quickly as you possibly can, and get ready for a fight; you've got one on your hands
Wayne

Thank all for the info and support. Off now to start making more phone calls. We were treated like we were dirt when applying for Tenncare today. Took all of our info, made copies, no questions asked, said would recieve a "denial" letter in the mail. WTF!! Didn't even enter info in system and telling us he is denied (since he is still working). Said would finish our case in 4-5 days. I guess both us need to quit our jobs and just start losing everything, I told them I guess he needs to be half dead to get any help here. God please forgive me, I am so MAD and feel helpless against a system that is supposed to be there for help.

Tnkay,
I had a very large tumor in my lower jaw and I had sucessful surgery and radiation four years ago. Concerning Petey's comment on his jawbone being brittle and not eating anything hard.......my doctors never told me anything like that so make sure to ask your doctor before you start limiting your husbands diet.
Minnie

WTF! Is the correct response! I just went through this with the State of Florida. Here we go again! It's Petey II. You need to find what county hospital the Health Dept. runs and go to the emergency room and tell them he can't breath! Fall down and don't get up! Say he's dizzy and seeing double vision. I can not believe this BS!
WTF!

You need to make the sign I was gonna make and parade around the county courthouse. The sign should read:

AT WHAT STAGE OF DEATH DOES CANCER BECOME AN EMERGENCY!

Call a TV station and tell them what is going on. That is how I GOT MY HELP!

I will call my station here and tell them there is a repeat going on. Maybe they will pick it up.
tnkay2001 call me. I will help find a way. 561-667-3631 Petey

The Lord Works in Mysterious ways.

I just check my E-mail and WPTV News 5 left this message. I will call them at 8:00 am tomorrow.


From : Malloy, Timothy <[email protected]>
Sent : Monday, June 4, 2007 4:58 PM
To : <[email protected]>



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Peter..lots of people asking about your progress..is there any way we could make a brief visir tonight Mon? Tim 693 8753

WPTV | News Channel 5


Malloy, Timothy <[email protected]>
Sent : Monday, June 4, 2007 8:25 PM
To : "Peter Billias" <[email protected]>
Subject : RE:



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OK don't want to crowd you,,but would be great to do a short
interview....doc told me youre in great shape.

-----Original Message-----
From: Peter Billias [mailto:[email protected]]
Sent: Monday, June 04, 2007 8:21 PM
To: Malloy, Timothy
Subject: RE:

Hey Tim.
I just got home 7:30. pm
I had appnt. with Dr. Ellis, then Dr. Dass at Wellington Cancer Center .

Tomorrow Dr. Thenappan for chemo. Tomorrow is fine. I'll call. Petey
561-667-3631


>From: "Malloy, Timothy" <[email protected]>
>To: <[email protected]>
>Date: Mon, 4 Jun 2007 16:58:59 -0400
>
>Peter..lots of people asking about your progress..is there any way we
>could make a brief visir tonight Mon? Tim 693 8753
>
>WPTV | News Channel 5


I'm going to have him read this thread. Maybe they will call a sister station in Tennessee NBC network. They might bite.

Petey, you are wonderful, thank you so much for your advice, kind words, and continued support of our situation. Why aren't there more people out there like you??