Hi, my name is Debbie Im 39 years old and Im from Melbourne Australia. In July last year I was diagnosed with a "adenoid cyctic carcinoma" of the tongue base. The doctors first plan was a total glossectomy, but during surgery this was aborted as they decided that too much of my mouth would have to be removed to be successful. The next option was radiotherapy (this type of cancer does not respond to chemo Im told) I had the highest possible dose of radiotherapy over 7 weeks.

My first CT scan after 3 months showed the tumor had shrunk but not completely, the following scan another 3 months later showed the tumor had not shrunk any further as hoped but was dormant. (Had not as yet got any worse)

Since having the radiotherapy Im no longer able to eat or drink anything oraly, and am completely reliant on PEG feeding. (My diet is soley Ensure Plus, but I am going to introduce some fresh vegie juices)

My questions are, has anyone had any success in regaining their ability to swallow affectivly after radio? the speach therapists & docs etc suggest that most people who have damage to the tongue by radio' show little or no improvement. Tongue exercises seem to have helped a little, but not as yet enough to make a difference.

As Im sure a lot of you know this can be a real dampner on your social life! it seems that everything we do is centered around eating and drinking, and Im getting a little tired of going to the movies!

Also I would be interested to hear of anyone else who has had this type of cancer, I am told it is fairly rare. Or of any similar situations.

Any sugestions or thoughts would be greatly appreciated, I would be interested to hear of thoughts on diet, like what would be the best vegies with cancer fighting properties to juice.

I have only just discovered your web site and have started to read some of the messages. It has been great to see the support given and Im sure I will be a regular.

Looking forward to hearing from you, Deb

Welcome Debbie! I am not familiar with the type of cancer you mention but I am familiar with radiation. I have almost normal swallowing after radiation. Every one has different long term effects from radiation but I believe you have a reasonable chance to regain that function.

On a personal note I find it really neat that we are able to communicate across the entire globe to share our concerns.

As far as veggies go, those with the most color are the best
Take care

Thanks Mark, I hope your right and I can regain the ability to swallow effectivly again. How long did it take you after radio'?

And yes it is "neat" to communicate around the globe!

My own experience with nuclear medicine left me on the PEG for a good 11 months after end of treatment. Towards the end of that period I was eating cold canned fruits, soups and anything that was wet but not spicy. At my 14 month point it was salads, poached fish, and pasta with extra sauce. Today 5 years out, it's anything...Bring it on!!! Keep trying things, stay away from the heavily spiced for awhile, and don't be afraid to take your water bottle into the restruant to make things wetter. I am constantly squirting my bottle into my mashed potatoes, into pastas that aren't wet enough etc. You get a funny look now and again, (especially in high end restraunts) but who cares? I'm there to enjoy the food.

Thanks Brian! Its so good to hear some positive feedback. Spicey is not an issue for me, never was a favourite, at the moment I'd be happy with a cup of tea! I'll keep trying though. Thanks again.

My name is Debbie also! I'm 42 years old from Iowa. I had SCC Base of Tongue 2 years ago with rad/cisplatin/5fu, right neck nodes removed.

I wish I could say that swallowing returned, but indeed it has not for anything that's solid. I survive on juice, milks, yogurts, scandishakes, cream soups, yogurt, runny mashed potatoes. If I swallow a small piece of canned fruit, for example, it sticks on the back of my throat and produces a negative sensation. I generally hack it up (sorry for the icky description). I've had swallowing therapy and barum swallow tests. The ENT says that the area is too dry and the swallowing muscle is hard and immobile. He believes it's an unfortuate side effect of the treatment. He says most of his patients eat most things except meat and bread.

I hope things go better for you in this area than they are for me! I truly miss eating real food.

Good luck, Debbie