Originally posted March 31, 2003 10:22 AM, by Harry (member 669), moved and edited by OCF same date.

Dear Harry

My Mum was diagnosed with Cancer of the Tongue in November 2002. The tumour was about 2.5cm big. In January 2003 she had nearly all her tongue removed except for a very small bit at the front. My Mum's tongue was re-built using tissue, muscle and vein from her left arm. She has had a few sessions of speech therapy and now she is able to speak quite well. She does however have a speech impediment but with each passing day her speech gets better. We can even understand what she is saying on the telephone!

The only thing my Mum is finding really frustrating at present is eating. My Mum can just about manage soft solids but it takes ages to eat anything and she is slowly getting bored with soup, yogurt, mash, gravy, icecream etc.
We have been told that it is still early days yet and the speech therapist is going to help her with swallowing skills soon, so hopefully things will get better.

Please tell your friend to try not to worry. Lots of other people on this OCF board have been through the same thing or like me are care givers to someone who has been through it and will do their best to answer questions if they can and be there for you and your friend.

Take Care


Kathleen

Harry,

I had over 60% of my tongue removed and reconstructed this past July and I can speak and eat just fine. It took a little adjustment time, but now people can't even believe what I went through. I am even back singing with my church choir and sound just the same. Sometimes my new tongue does get a little tired, and that's when I revert into the language that my husband and I refer to as "Englisp".
I also am involved in a support group at my hospital and know a man who had a complete tongue removal. He speaks and eats well. In fact, he works as a salesman. His speech is altered, but still understandable.
Let your friend know that his first priority should be doing what it takes to keep on living. This surgery may be a little challenging, and it may take some time to get the speech and eating part back, but at least he'll be alive to see another day.

Jeanette,

My husband also had 60% of his tounge removed. He is just finishing up radiation (3 more). He hasnt really beem able to swallow yet. They told him not to swallow unless he is with the therapist. What kind of reconstruction did you have done? I know survial is the most important thing. I am just feeling really bad because he hasnt had and food since surgery. ( Febuary 3rd.) I also know every person is different I was just wondering what you had done so I could ask? The Doc did say the other day he might do a graft again (did it day of surgery but it didnt take) but he said it would be a while. He wants to see how he heals and what his swallowing is like at that time.

Thanks,
Cheryl

I have been reading your message boards for several days and applaud all of you brave people! My best friend in this whole world just had a complete tongue removal yesterday. Along with lymph nodes on one side and jaw bone. We were all hoping that reconstruction could have been possible but the surgeons said none of the tongue was useable (the tumor was the size of a large lemon). Surgeons said they "relined" it with pectoral muscle. Is there a chance she will ever talk or eat again? The surgoens said they were able to save the voice box and felt they "got all" of the tumor.

And help me here, how is the best way for me to help her?

Patients with no tongue do indeed learn to speak again. It obviously will not ever be the same, but it is intelligible and is not the end of the world of conversation with friends and co-workers. It does however take significant practice. There are also surgical reconstructions possible with muscle from other areas of the body, if there is any of the base of the old tongue left from which to obtain blood supply, nerves, and provide and attachment point. I am always somewhat concerned when a surgeon says that they got it all, and there appears to be no continuing treatment with either radiation or chemo. A tumor the size that you are describing likely has had time to put out metastasis to other locations such as the cervical nodes. These may be too small to see in a CT scan or MRI today. Hence the "wash" of radiation or chemo to pick up these micro metastasis. Only patients with carcinomas in situ, or very early stage ones in my opinion get to miss out on the wonderful world of nuclear medicine or chemotherapy. When you hear of oral cancer patients being in recurrence, much of the time this is actually a remaining micrometastasis that was not gotten at the first go around, that has had a year or more to prosper unnoticed in other areas. Having a clean surgical margin is not the same as getting it all in my book.

Cheryl,

They used a flap from my forearm to reconstruct my tongue. The reason the doctor didn't choose a pectoral flap for me was because I am a newly married young woman. I haven't had any kids yet and they didn't want to mess with my chest for fear it could cause problems with breast feeding.

It took me a while to be able to swallow everything. For a few months after the surgery it was boost, pudding, and mashed potatoes only. After I got the OK to try other foods, I had to take it very slowly.....I would try a little bit of something to see how things went. Sometimes it was a horrible outcome, and sometimes it went down fine. I relied on a lot of water with meals to help swallow, and it took hours for me to eat a small plate of food. With time and practice, I can now eat up to normal speed.

It's good to keep in mind that the tongue is a muscle, and it needs to be built back up just like any other muscle that has sat around doing nothing. I wasn't able to do everything until a little wile after radiation was over because my treatments really knocked me out. Giving your husband another graft will make a big difference, but they will have to wait a while until the effects of the radiation are done. Remember....even though the treatments are over, the radiation is still working havoc on your body for a while.
I wish you and your husband well, and remind you that recovering from this occurs in "baby steps" not in leaps and bounds. It takes hard work and dedication, but if he sticks to it he'll find things can get better.

Jeanette,

Thanks for the info. I am going to let my husband read your posts. (he is really not into using the computer) I think it will help him, he thinks everything should be fine already. He thinks he is never going to be able to eat again. He is really down, I keep trying to tell him to take it slow. Maybe coming from someone who has "been there" will help.

Thanks again!
Cheryl