My husband has oral cancer in jaw and cheek. Have gone thru radiation and chemo. No surgery-not an option. Keeps getting infections in area of bone loss and cheek. We were told as long as drainage was on inside we were okay. Drainage has been on outside of month now for a month. No one will tell us what this means. Has been on antibiotics(helps some). I can see hole the size of pencil lead. I think cancer is eating thru cheek but doctors say no. They don't seem concerned. They say put nothing on it and we don't have to cover it up. Don't understand, what about germs. Does the hole keep getting bigger until he has no cheek. Has someone gone thru this.
I NEED TO KNOW. I'M A PERSON WHO NEEDS ALL FACTS SO I CAN DEAL WITH WHATEVER COMES. PLEASE REPLY.

Ann,

Where is he being treated? Why was surgery not an option? How long has treatment ended? Please tell us more.

Ann,

My dad is currently going through radiation and chemo for cancer that has now spread to his neck. The tumor was huge before they started radiation and after the treatments started the outside of his neck kind of opened up and started draining. The "hole" is about the size of a nickel and from time to time will scab over and then open up and drain. The doctors seem pleased with the drainage as it makes the tumor shrink.

While this is the case with my dad, it may not be normal for everyone.

Have you asked them why it's now ok for it to be draining on the outside?

Joy

Ann,
I wish I had some answers for you. My husbands cancer is base of tongue and we have not had the problem your husband has but I know exactly how you feel about noone telling you anything. We are dealing with a pegtube, trach tube, clipped caroid artery, tons of mucus, and breathing difficulty and the only thing they are telling me is everything looks good to the naked eye, come back in a month. This has been going on seems like forever. I feel like my entire life is on hold. I can deal with anything but I just want to know what is happening and what to expect and when. Sorry I didn't mean to ramble but sometimes that helps. Will ad you all to my prayer list.

b arnstuff,

It helps us all if you post kinda a summary of Dx and Tx, etc under your Signature Line which you can access thru your Profile. Look at mine as an example.

We are at UAMS in Arkansas. Surgery is not an option because he could bleed to death on operating table. He doesn't have enough jaw bone left to attach anything to. The tumor was from the middle of his chin in the bone all the way up his cheek almost to his cheek bone. I didn't see the swelling for about 3 months because he had a very full beard. Six weeks of radiation ended Sept. 7th and last chemo Sept. 27th. After treatment our surgeon said as long as the drainage stayed inside that was good, it would not be good for it to drain on the outside. When it started draining on the outside again the doctor just skipped over our question about it. They tell him he should be eating again now but he says his jaw hurts to much. We will be going to a swallowing specialist in March. He doesn't have a problem swallowing it is getting it to the back of his mouth to swallow.

Well i guess you want good and bad scenario,so i will tell you ours.Rob developed a drip under his chin where the secondary tumour was removed from,about 5 weeks post rads.He was treated with antibiotics for a week,and the drip became a hole which over two weeks grew to the size of a golf ball and drained an offensive discharge.After two and a half weeks,his face started to swell all over,and the hole got bigger and bigger.
In robs case it was recurrance and his neck was being destroyed by the tumour,but saying that i know a girl on the english mouth cancer site who has been in and out of hospital for reconstruction of her jaw which has collapsed,and it just won't take,but they are adament she has no sign of recurrance.
Why a swallow specialist if he can swallow,thats just plain weird.Robs problem was not being able to open his mouth because of the pain in his jaw,but he was still swallowing a beer the day before he died.
Sometimes it is well worth getting a different point of view on these things,because the worst enemy of this disease is delay and complacency,and if the you are at all worried about the doctors attitude see if you can see another one.

This is very hard to watch,i know just how scary it all is,but dont be fobbed off if you think it is something to worry about.

love liz

So easy answer? there isn't one,but be very vigilant,and don't stop badgering the doctors.

We went to Rad Doctor he said he could see bone. The hole is about the size of a pencil eraser. He said only way to do anything is have graft surgery. If my husband can't have surgery to replace jaw because of bleeding issues WHAT NOW! When he tries to sip water it just comes out of the hole. How long will I have my husband? How long can he live with his cheek missing?