Four years ago my brother had part of his tongue removed due to cancer. This morning he called to say that he has been diagnosed with what appears to be a new cancer on the interior surface of his lower jaw. He will be going for surgery on March 23. He lives alone and will be living with my husband and me while he recuperates.

The surgeon tells him that my brother's lower teeth will be removed to get to the jaw and after the cancer is removed (with clear margins) the tongue will be stitched down on the jaw as sort of a graft procedure. This is all my brother could remember because the dear man has been handling all of this on his own for the past six weeks so he doesn't worry anyone.

What do I need to know about after surgery care and liquid diets? Help me, please.

Welcome to OCF. You will find lots of help here. First off, your brother will need lots of help to get thru this. You might want to line up some friends and family to give you a hand too. Even if its just to pick up prescriptions, it will give you a break.

He will probably have a feeding tube placed in his stomach to take liquid formula feedings. It sounds difficult but it is very simple to do. He probably will also have a trach.

If at all possible, he needs you or someone to go with him to his appointments. Write down your questions and take notes. Its very hard for a patient to go this alone, Ive done it and dont know how I got thru it.

A few questions to ask might be.....
How much of the jaw is going to be removed?
What will replace the jaw? Steel or bone from his leg?
Will he need chemo and radiation?
How long of a hospital stay?
Is he being treated at a cancer center?
Is this going to be one surgery?
Will the teeth be removed at the same time as the jaw surgery?
How many of these surgeries have you done before?

Has your brother had any other opinions? Surgeons always cut. Has he already had chemo and radiation?

Im sorry if I bombarded you with info, its pretty overwhelming to be faced with this.

This is overwhelming no doubt as Christineb pointed out...however it's important to get as much information you can during this time. Recording the Dr or taking notes is awesome and that way you can aske questions here to people that can interpret the medical jargon into english.

We are here to help in anyway we can, but the more info we have, the more we can be of help.

Best Wishes,

Eric

I imagine they will take his teeth near the 1st of the month so his gums heal up some before the surgery. I had all of mine removed before after surgery and then the radiation and chemo and after those rad seed implants. Maybe he won't need the rads and chemo . Listen to Christine, She has been thru everything and is very helpful.

Thank you so much for your responses. Some of the questions I already new and some I did not. The doctor told him that my brother spotted it early and did the right thing by coming in quickly. He had a CAT scan and it is only the spot in his jaw that shows cancer. He will have his lower teeth pulled but the surgeon does not believe that a bone graft will be necessary. Nor does he expect to need radiation or chemo. The surgeon also said that they will be suturing my brother's tongue to his lower jaw to act as a skin graft. This sounds really uncomfortable to say nothing of inconvenient.

I would greatly appreciate it if you could share some stories of the step by step process. I am Stage IIb ER+ PR+ Her2+ 0node+ breast cancer. I turned down chemo because the risk of congestive heart failure from the chemo was greater than the reduction of risk for recurrence. I have just had my 2 year Cancerversary. Please don't worry about me being overwhelmed or grossed out.

Are stomach tubes always used after surgery for oral cancer? Where does one buy the cleaning solutions for the port and the tubes? Where does one buy the feeding solution?

Can you please explain your description of you cancer ratings? What is Cisplatin, PEG, trismus, HBO, ND, RT?

ChristineB,EricS,
May you be well and cancer free.

EZJim,

Our posts must have crossed in cyberspace. My DB is having surgery at the Little Rock VA Hospital which is one of the best in the nation. His surgeon will remove his teeth and go directly to the jaw. He will be 3-4 days in the hospital and then we will take him to our home and drive him back and forth for his appointments. We live in the Ozarks so it is 3 hr. each way.

The VA hospital has wonderful surgeons and his specializes in head and neck surgery. Vets are especially susceptible to soft tissue cancers of all kinds due to Agent Orange.

I have know idea what happens after surgery because my DB kept this whole thing quiet. My husband will be going with my brother for his pre-op physical and I will be there to talk to the surgeon afterward. I am one of those people who likes to know as much as possible about what the process is so any help is greatly appreciated.

I just stopped by the thread on dumb things people say and I though I was back at the breast cancer forum. We have a similar thread. Sometimes we laugh and sometimes we want to smack people. All cancer sucks.

[quote=notself]Can you please explain your description of your cancer ratings? What is Cisplatin, PEG, trismus, HBO, ND, RT?[/quote]
Welcome to OCF. You can find many of the abbreviations explained in this thread.

By "your description of your cancer ratings," I assume you mean staging -- information is here. Cisplatin is a chemo drug that is used to enhance the effectiveness of radiation -- more info here. Trismus refers to the inability to fully open the mouth, a possible side effect (due to scar tissue) of surgery or radiation -- a further description is here.

The main part of the OCF site contains many pages of information that will help you understand what's going on with your brother. You can access its search engine by going to the gold Search link at the bottom of each forum page; a link is also in the left rail of the main site.

The Search box at the upper right of each forum page searches the message boards only. They also are full of information from people who have been there and done that.

Keep asking questions, and keep coming back. (I'll leave your questions about the PEG -- percutaneous endoscopic gastrostomy -- tube, or stomach tube, to the folks who have used them.)

LeslieB,

Thanks for the links. Yes,I should have used the word Staging. Of course at this time I have no idea about my brother's cancer staging or future treatment. Doctors can think it's Stage 1 and it could end up III or IV so I will not read the main part of the OCF until we know what's what. I learned that too much information about staging and potential outcomes prior to surgery can lead to confusion. As the site says, each cancer and it's treatment in individual. We are just going to have to wait for the path report.

welcome to the forum. so sorry u have to be here but soooo glad u found it. please keep us updated.

Congrats on your 2 year anniversary of being cancer free. Its a milestone we all strive for. Wishing you many more cancer free anniversaries in the future.

Cisplatin, PEG, trismus, HBO, ND, RT...
I think you must have read my signature LOL. I will try to finish what Leslie didnt answer. HBO is hyperbaric oxygen treatments. Basically its a pressurized oxygen tank you lie in for 2 hours per day to help speed up healing. ND is neck dissection, thats where the doc cuts open your neck taking lymph nodes out to check for the spread of cancer. RT is radiation therapy or treatments.

The PEG tube is one that takes more explaining. Its a feeding tube and not all oral cancer (OC) patients use one. Most that have chemo w/ radiation and/or extensive surgeries will use one. The feeding formula is prescribed by the gastro doc who surgically places the feeding tube. It will be delivered by a medical supply company. If your brother gets a feeding tube, make sure he gets a pump too. This is used to do overnight feedings. It helps to free him up so he isnt tied to the feedings 24/7.

My cancer was in my jaw bone this last time so I was considered Stage 4. There is a big difference if its in the jaw or the jaw bone. Thats why its important to get all the info from the docs. Something that simple can mean the difference between Stage 1 and Stage 4. As far as more technical info about the Stages, please do a search on the main pages. Sorry, I may sound smart about this stuff but its only from having it that I learned all these things, Im not very technical.

A port is for chemo, also good for giving blood and getting hydration. You do not need cleaning solution for it. When the port is not used any longer, it needs to be flushed monthly by a nurse, then can be surgically removed.

Best of luck with everything. Please feel free to ask questions as they come up. Also try to add a signature line. Its easy. Located uder the "My Stuff" tab is Profile. Type what you want to write in the box on the bottom. Dont worry about being technical, put whatever you want there. A signature helps others to respond to your questions without going back to read all of yor posts.

congrats on ur cancerversary!!!!

Thank you, everyone, for all the help you have been giving me. I am learning a lot from your posts and the links you all are providing.

Christine,
As you can see, I have added a signature.

It looks like you have already gotten a lot of information. I am glad you found us. This is a great place to be for support and ranting and raving. Askk all you need. Keep you in our prayers.

Today my brother underwent an eight hour surgery. The doctor removed about half of the bone of his lower front jaw. As it stands now he has clear margins and most likely will not need reconstruction if the margins show clear on the path report.

Several of the lymph nodes in his neck were slightly larger than normal. We will have the results of the path report in about four days. He will be needing rads and chemo.

I will know more tomorrow when things have had a chance to calm down. Right now my brother is getting excellent care in the ICU.

any updates??

First let me say I will keep a good thought for you, your brother, and your family.

My husband has had a GI tube (a tube in his stomach) since he started chemo/radiation August of 2009. The nutrionist on my husbands team provided us with several options for prepared canned feeding. Unfortunately these all seemed to cause a lot of GI upset and discomfort. Ultimately we (the nutrionist and I) came up with a diet I could make at home in the blender. I actually preferred this to the canned nutrition, but I would not have taken it on without very clear guidelines from a professional. Since he has completed all of his treatments, and nausea and weakness is no longer an issue, my husband is now in charge of preparing his food. He pretty much eats whatever we (the kids and I) eat, it just goes into a blender with some organic whole milk or organic chicken broth.

Jen

What a good sister you are. As for the feeding tube, as Christine noted, not every oral cancer patient needs them. You can see from posters like EZJim that even with massive jaw surgery and teeth removal, that the key is whether or not you can still swallow.
The majority of OCF posters who did get feeding tubes only had them for what I consider a very short time. The small minority like myself and Roger Ebert who will never eat again are not representative of oral cancer outcomes. Unlike Jen's experience, we found the nutritionist and dietitian services to be totally worthless. That also seems to be the common experience of all the posters on the GI tube forum and blenderized diet Yahoo group. The hospital should set up the delivery of the liquid "food" but it's just canned corn syrup solids and maltodetrin with faux fiber. I put up it with it only until it became clear I would not regain swallowing and now use my Vitamix to eat the same meals as my wife.
Just take it one day at a time and keep coming to OCF
Keep the faith
Charm

My dear brother is sitting in my living room watching TV with my husband. He has no tubes anywhere. The doctors took 22 lymph nodes and all were clear. I will update with more detail after I read the path report.

You are for sure a good sister. Keep up with the posts. I like to read them and find them interesting like I do all posts.

Thanks EzJim, but my husband and I owe everything we have to my brother. He was the one who insisted that my husband get an Agent Orange Physical and join the Agent Orange Registry. He nagged until my husband followed up with his application for disability. If it hadn't been for my DB, we would have had inadequate insurance for all the health problems my husband has due to Agent Orange. The co-pays alone would have bankrupted us.
Now it is my husband that is helping my brother with his appeal to the VA for recognition of oral cancer as Agent Orange related.

My brother has just left our house to drive four hours to his own home in Oklahoma. He will spend several days doing minor fixes and will be putting it on the market. After his house sells, he will move here and build a small home on our property.

He had gained about 2 pounds since his stay with us. He can manage smooth foods as well as rice and beans. His main meal is breakfast which is around 800 calories. Two packages of instant oatmeal cooked in one cup of heavy cream, three scrambled eggs, cranberry juice, and a high protein Boost.

For lunch he has soup made with home made chicken stock, onions, garlic, potatoes, heavy cream all smoothed with a stick blender. He has apple sauce and Boost.

Dinner is beans and beef stock (home made). Pureed peaches in heavy syrup and Boost.

Right now he is short on green vegetables but I will correct that when his mouth is more fully healed. I am going to make some split pea soup while he is back in Oklahoma and freeze it so he can take it back with him.

He will be returning to Arkansas for his follow up visit on April 12. We will find out where he will be receiving radiation. If there is a qualified place near his home, he will have radiation there. If not, he will stay with us and have radiation here. We will also be asking for a referral to a VA dentist specializing in oral cancer before radiation begins. I will also request a TSH test for him.

This board has been so helpful to me in caring for my brother and in preparing us for what is to come.

Thank you all.