Advice

Back on February 5, 2006 I went to the local hospital at the time I was living in New Jersey. Because I was having trouble swallowing and everytime I would eat my throat would swell up.

After doing a CT the ER doctor admitted me because there was a softball size mass behind my tongue.

I spent 15 days in the local hospital some days they ran tests other days they didn't.

I was getting worse i needed oxygen when they didnt think i needed it. After the 15 days i went to the University of Pennsylvania Hospital in Philadelphia, Pennsylvania. I saw an ENT there and I was rushed for emergency throat surgery and had to have a trake (sp) in my neck so i could breathe.

The ENT did a biospy and sent it to Mayo Clinic and the report came back stating sorry we have never seen anything like this.

Then in March of 2006 I moved down to Virginia and April of 2006 I got the trake (sp) out of my neck.

Then in March of 2007 I went to Duke University to see another ENT doctor there for a follow up because I was getting worse. Through all of this I couldnt lap flat to go to sleep i had to sit up to sleep.

Doctor did another biospy sent it to Mayo Clinic and the report came back stating the same sorry we have never seen this before.

So I went to another ENT at University of Virginia. In hopes of finding out what this could be. well this ENT reached his hand down my throat and touched my mass and said it wasnt cancerous just by touching it. But it is the size of a softball.

Needless to say I am still in the same condition i was 2 years ago when i first found out about the mass. I still cant lay down to sleep still have to sit up to sleep so i dont sleep much.

The ENT doctor that I am seeing at University of Virginia says that if i cant live with this then he will just put in another trake (sp)

I have learned what i can and cant eat so food doesnt get stuck in my throat.

I dont really want to get another trake (sp) in my throat I would like to find out what this is. and get the correct kind of treatment for it but it doesnt seem like im going to because i have gone to 3 ENT doctors and not one has an answer for me. Which really frustrates me.

Now 2 years ago I almost died because of this and I pray every day that i wont and that i can find an ENT that could help me.

I am so afraid that this will turn into some form of cancer in my throat. my paternal great grandfather died of mouth and throat cancers.

Anyone else going through this and have suggestions for me?

 Linda

My husband was diagnosed in December with Squamous Cell Carcinoma. He first noticed two lumps on each side of his neck. They took a biopsy of both of them. Came back saying that they didn't see any cancer, but said it could be hidding. So they took one of the tumors out and sent it to Stanford in Ca. It came back positive being cancer. They then stuck a tube with a light down his nose and it had a claw of a thing that pick pieces out to biopsy because they could not fine the primary where the cancer had started. So by doing that, they found the cancer started on the floor of the mouth, tongue. They won't operate because there were to much to start cutting...So he now has a Doctor for Chem 3 treatments 1 every three weeks and Raditation treatments Monday-Friday for two months. Head Neck & Throat cancer has 4 stages he is a stage 4 because his is bi-lideral which means it is on both side of the neck. The Chemo doctor said a 20% survial rate and Raditation doctor said 30 to 40%. He will be starting this week.  Now as for how he got the cancer? Well HIV causes this kind of cancer, but this is not in his case because he is in the National Guard and they check for this often regularly.  Another cause is HPV. As for HPV you can get this from ORAL SEX!  So you should be checked to see if you have HPV and gave it to him...Or he could of gotton it from someone else at some point. Or it could be from the tonsils. In my husbands case he has no tonsils. You can fine so much information on google looking up Squamous Cell Carcinoma and where his is located...I put in NECK THROAT SQUAMOUS CELL CARCINOMA IN GOOGLE.  You can find so much information using google.  Another site is the WWW.MAYOCLINIC.COM and WWW.,EDSCAPE.COM WWW.CANCER.ORG  You should not have sex when he is having the raditation because you can be effected by the raditation. I'm putting my faith in God. I wish you all the best and pray that your boyfriend and my husband is one of the lucky ones that all this Chemo and Raditation they are having will get rid of the cancer.

God Bless

Patty