My 18y/o niece was dx two yrs ago with(EHE)in the gums she had excessive growth of the gums covering her teeth this had been going on for five yrs before she was actually dx with EHE they could never detect it on the biopsys finally Baylor at dallas gave us the dx and we went to MD Anderson in houston in 2005 Dr Weber told us this type of ca doesnt respond to chemo we have to surgically remove it. We went into sx thinking we were only going to lose four teeth when she came out she had lost eight teeth, palate, partial sinus cavity and lymph. this was extremly hard to explain to a beautiful 16y/o when she woke up. Well this month she was going for what we thought would be her last 6 month checkup and then we would go to annual ones but to dismay the ca. had come back in both sides of neck in lymph and behind her left cheek. Our surgeon said we needed to remove asap we did the Pet scan and lymph and cheek needle biopsy which was positive he referred us over to the sarcoma dr. Ludiweg who recommended us try AVASTIN first before sx her panel of 25 drs. met and agreed to try this before sx in hopes the tumors would shrink or stay the same. This week has been a crazy roller coaster she is getting married March 3rd and we didnt send out invites until today due to we didnt know exactly what the plan was one day this the next day is a waiting game and then the next day is sit and look at the phone waiting for the drs. to call us. I am asking if anyone has ever heard of this type of ca due to rarity and especially in the oral cavity i am trying despartly to talk to someone who might give her a word of encouragment. We are terrified to leave the ca in there to see if this avastin works due we are afraid it will spread else where. They have told us that they will monitor after we start the med. 6 wks after to see if there is change in the tumors.I pray you will put us on your pray list I know there are alot of people out there who needs our prayers as well and we do pray for the Lord to allow our drs. and tech. to wipe out this terrible disease process. May God Bless Each and Everyone of You. Darla

Hi Darla,

Sorry to hear about your niece. Cancer is never friendly or fair. I did not have any risk factors but still got cancer in my tongue.

From my diagnosis I had to wait a month before surgery, so the doctors usualy know what they are doing as far as the timing of the treatment. As always, if you have a question about waiting, ask the doctors. I did and got a reassuring answer in my case.

You have found the right website for support and question answering, so ask away.

Take care and fight hard.
Jim

Darla,

Is she still being treated at MD Anderson?

Darla - it sounds like your niece is with a good group of doctors and they must have a good reason for the decisions they make but I agree with Jim - if you have any question about waiting or why, then you should ask the doctors. Just wondering and thinking the worst can be a crazy-maker but if you let them know what you are worried about they are better able to reassure you. It helps to do your own research, too and learn everything you can so that you can feel more in control. Besides, the more you know, the more questions you can ask. There are lots of knowledgeable people here that help you, too. So stay in touch and let us know what's happening.

Hey guys thanks for the quick respones that i received and i agree i am at the right site for info.AMEN!!! Yes she is still at MD Anderson and i do have confident in the drs. there but that ole devil puts the doubts and worries in your head. One question do yall know anyone that has had this type of ca before and if so can i talk to them i would love for her to be able to talk to someone that has been in her shoes we cant tell her that other people have survived lymph ca to tell there stories and we personally know people but her come back to us is that my ca so rare and they dont understand my situation because chemo will not respond to mine I understand what she is saying right know is such a bad time due to the wedding her age I know there is never a good time we are trying to keep her busy to keep her mind off as much as possible though we should hear from the drs today concerning if the ins. is going to pay for the avastin. Have any of you taken that med before and if so what were your side effects next question have any of you have plastic facial sx there and if so are you happy with the outcome and what was the drs. name. I may have told you that they will have to take her cheek bone out even though they say it isnt in the bone they need to remove it to get to the tumor. I was wondering way they couldnt keep her bone and replace her own bone on final reconstruction sx. that will be one of my questions to them when we go back down there. I appreciate any feedback God Bless You All darla