I have a mandibulectomy with modified neck dissection,removal of left floor of mouth and small amount of tongue approaching,followed by rads.
Surgeons using fibula free flap and want to leave trach in during rad tx which seems contra to most protocals. Also do not want anything in my mouth for 3 weeks, bed rest 5 days, hospital 2 weeks and pull all my perfectly good front teeth because they are making mandible cut past the canine and they tell me those front teeth will fall out. Anyone had this protocal? Also, any tips while in the hospital?

At this time I would suggest eating all your favorite foods and then eating some more. Your eating function will be compromised for quite some time and you do not want to go into this having all kinds of cravings. If your surgery is prior to Thanksgiving, consider having an early Thanksgiving dinner so you wont feel so left out.

Ask for a Possey Muir valve trach so you will be able to speak easily after the surgery. Makes it much easier for you to wake up able to talk.

Sorry to hear about you losing your teeth! Ive lost mine due to radiation damage and unfortunately I am unable to get implants. That is a good possibility for you after all this is finished, having implants of beautiful perfect teeth.

Prepare yourself for a difficult time. Always better to over prepare than to wish you had done things while you could. If I were in your position and know what I know now, I would get ready to be out of commission for 4 or 5 months. I know that sounds like a very long time but the surgery is a big one and having radiation afterwards makes for long recovery period. Since I do not know your living situation, I dont know if you have a spouse or someone who can take care of your bills. Any bill (car insurance, electric, cable, mortgage, etc) that you can set up auto pay for do it. Write and sign checks and put them in envelopes along with a list of what gets paid when. You do not want to come out of the hospital with a big mess and no internet or tv.

Arrange to have several people to take turns being with you at the hospital. Set up a schedule with as many people as you can. Have everyone select a day and mark the calendar with who gets what day. Have a couple spare friends, people from your church, club or relatives who can fill in just in case someone has a problem and cant do their day. Any patient who is going to be in the hospital for any length of time needs to have people with them to advocate for them.

Make sure to set up a phone tree with a list of everyone you want to have notified. Put 2 people in charge of notifying friends and relatives. Have the person closest to you call these 2 people and they can then go down their lists. Make sure you write down every single persons name, number, address and who they are in case someone not familiar with everyone has to make some calls. Some people set up a caring bridge page so everyone can be notified just by checking out their webpage. Dont forget to inform people about OCF so they can come here if you have a problem and need advice. Its a huge surgery (usually 10+ hours) and could have all kinds of complications.

Take several close up photos of your face and neck from every single angle. Ask your doc who is pulling your teeth if you should have molds made now so they will have a record of what your mouth looked like for dentures or implants later. Its a good possibility you may need further reconstructive surgery down the road. It will take a full year of recovering before you can have any big reconstructions done. Looks arent everything and really are not that important but you should prepare yourself that you have a chance of coming out of this looking different than you do now. The most important thing right now is not how you look or talk, its getting rid of the cancer. This can be hard for many people to accept but if you come out of this without having cancer then it was a success.

Im sure there are many other things that you can do to prepare. I probably will come up with a few more items. If you dont have a will made, you may want to consider making one. I am not saying you wont get thru this but anyone facing a major surgery or a major illness really should be prepared.

Right now besides getting ready for surgery and being out of commission for a while, go out and live life. It would even be a good idea to do your Christmas shopping (if you celebrate that holiday). You can even buy and wrap any birthday presents and write out birthday cards now for anyone who has a birthday coming up in the next 4 or 5 months. I had 2 months before my mandibulectomy and I lived it up. I went out and made all kinds of memories with my children and had a great time. I was able to select the date so I chose 2 days after my sons birthday and we had a huge party. By keeping myself and my family active and having fun, it helped keep everyone from worrying so much.

Thank you for all your input, very helpful. I am concerned about this nothing in my mouth for 3 weeks as i want to be able to swallow etc ASAP(within reason). Also do not want to leave hospital with a trach but i'm butting heads with the surgeons. Do not feel like it's a team effort.

Hmmmm. Ask them why on the trache - my surgery was different - but my surgeon put it in because of concern with swelling - it was removed three days post op. I healed and went on to have radiation etc... Now your surgery is quite extensive. So healing may take some time. Perhaps the swelling is a concern? And then during rads it will get worse... How long between surgery and rads? Usually it's 5-6 weeks. Are they putting in an NG tube or a peg right away, and yes swallowing is something you must do to maintain the reflex. I was told 8-10 days nothing by mouth - stitches were still fresh and they didn't want me to damage my graft. The three weeks seems likely because your surgery is very involved. I'm just wondering if since you are going for rads a peg might not be the best option up front, and take in soft foods and liquids when you can for as long as you can then use the peg but continue to take in water etc... I would definitely object to the trache during rads unless they can give you a solid reason. Good luck!

Ps - christine is in the know she's been through this before, also where are you being treated.. Hope it's a top notch ccc!

Great advice, Christine! I haven't had a similar operation but I was hospitalized for nearly a month with a year long recovery from my bone marrow transplant two years ago. I don't have much to add but I'll pass along some helpful advice I got from others beforehand. If you're going to be hospitalized for awhile, bring some personal comforts from home that will make the hospital feel less institutional - my favorites were my own fluffy pillow with a soft pillowcase and a soft fleece comforter. Also, my iPad was invaluable for communication, entertainment, and for storing and viewing lots of digital photos of family, friends, pets, favorite places. If you don't have or want an electronic tablet, maybe a digital photo frame. My husband tacked a string to the wall to display my cards and holiday decorations for Thanksgiving and Christmas. When you're not feeling well, it's sometimes surprising how much the smallest comforts can perk you up a bit. While you're in the hospital get up and walk, walk, walk as much as you're able. Best of luck to you! You have some hard times ahead but take each day as it comes, and you can get through it. Try to stay upbeat but don't beat yourself up over feeling angry, depressed, and defeated sometimes.

Best wishes for a speedy recovery,
Karen