Hi, I have been reading your posts for months now and finally decided to join you. I have found much informative information here that it was time for me to seek your wise advise on the next step of my treatment. I had surgery for oral cancer on 11/29/11. SCC floor of mouth, 2/3 of my tongue, 2 lymph nodes removed, teeth removed, and tracheostomy.I went 6 weeks of radiation. After all that I was informed that my insurance was all messed up so I could not seek any other treatment until I straighten everything out, which I did in June.My question now is that I want reconstructive surgery to build me a flap and get some more teeth. Righ now, whats left of my tongue is sewen down to the bottom of my mouth and my doctor is worried that he might do more harm than good. What would be my best choice in this matter. Thank You Sherry

Go to a ccc and hopefully they have an ENT that specializes in plastic surgery they can likely do the job. My ENT is awesome but he had another surgeon with him - a plastics guy who did a great job rebuilding my tongue. Welcome and good luck.

Sherry, welcome to OCF! So glad you have made yourself known so we can help you. For reconstructive surgeries after radiation, they may want you to wait for a full year before any surgery will be preformed. My doc said it takes a full year to recover from a major surgery and with having rads it is necessary. Any doc who jumps the gun on this may not be a wise choice. Also, many docs dont like to take over a case midway.

I would suggest finding a competent oral surgeon or ENT who does surgeries for oral cancer patients. Your best chance for this would be a cancer center.

Best wishes!!!

Hello and thank you for all your advise. I am currently going to Emory University Hospital in Atlanta.The surgeon that performed my initial surgery is in the same medical practice of my reconstruction surgeon, They have an excellent Otolaryngology center that specializises in cancer. I still have my peg tube and I try to relate to them that I need my teeth to really eat again. I'm 52 and weigh 105 lbs at 5,8. Its really hard to put on weight when all you can drink is ensure.I.m trying to be patient but its really hard.

Thank You
Sherry

Sherry, if you have been reading the forum for a while you probably know what I am about to tell you. Nutrition is very important and will help you with your recovery. You must get a minimum of 2500 calories and 48 oz of water every single day. Since you are so small, it would be a good idea to push yourself to get in at least 3000 calories a day. Adding some high protein powder will help with healing too. The better your nutrition, the faster you will recover.

I have no teeth at all. Dentures are not an option for me. This is something you will adapt to. I am able to eat a few items like yogurt, cream of wheat, cheesecake (only the very creamy kind), soup broth and a couple other things. Chocolate peanut butter milk shakes are high in calories about 2000 calories per shake. While I was recovering from chemo/rads I would drink 2 or sometimes even 3 of them and didnt gain an ounce. Thats due to my body working so hard to rebuild itself it burned up extra calories like crazy.

Choc-peanut butter milkshake recipe....
(all measurements are estimates as I dont measure when I make things)

3 or 4 cups chocolate ice cream
2 cups whole milk or half and half
1/3 cup peanut butter (smooth)
1/3 cup chocolate syrup
a scoop of high protein whey powder
a scoop of dry carnation chocolate breakfast drink

Hi Sherry

I suggest you see another Plastic Surgeon and Oral/Maxillofacial surgeon experienced with oral cancer patients. Depending on how much of your tongue and floor of your mouth is removed, depends on what can be rebuilt. After the floor of my mouth was removed, the reconstructed tongue flap acts as the tongue and floor of my mouth. Unlike those treated with a hemiglossectomy and/or partial glossectomy we no longer have a mobile tongue. The tongue flap is sewn down permanently. Back in 2008 a plastic surgeon and oral/maxillofacial surgeon rebuilt and reconstructed my lower mandible jaw. They removed 13 lower teeth. Since then they have rebuilt lower gums and inserted implants into my reconstruced lower jaw. The implants hold a titanium plate for a denture to clip on.

Please send me a PM is you have any questions.

Karen

Hello to All, Thanks Christine for your recipe. I have tried it and its quite tasty. I didn't know that plastic surgery was an option. I will call my dr. after the holidays and find out what he quite meant about more harm than good. I had a swallow test done last week and they say that I did excellent considering everything. I will let you know what he says.

Sherry

I sure agree with Christine. I have no teeth either along with not much tongue . They also took my lower jawbone and I amd not a candidate for a replacement. So I live on whatever is in Isource. I drink much more than 48 oz pf water a day and it helps your body it seems. I have a lot of energy but a lot of pain too. Keep after whoever with questions . Good luck. My life line is a feedin tube like some others in the forums.