Hi could anyone help?? A family member has recently had surgery for tongue cancer removing part of tongue and flap from wrist put in place. She is very accepting of the scars but finding the talking and soft diet really frustrating. I would just like to ask anyone who has had similar surgery who is further on in there recovery do you ever get back to eating a normal diet and does your Speach ever sound like it did before surgery, just everyone she asks tells her something different and hearing from people who have been through this I think would really help her xx

Hi TAH22

The best answer I can give to your questions is "it really depends". I know that's not what you and your relative want to hear, but it's true. There are a lot of variables, like her overall condition at the time of surgery, how much of her tongue and surrounding tissue was removed, and above all her attitude. Dr Joshi would probably be best able to give you better information.

I'm five and a half years post-op, and my surgery was pretty much the same as hers. For good or for ill, I have no major problem with eating (except really soft bread). My remaining tastebuds have stepped up to the task, although the storebought side of my tongue is more pressure and temperature sensitive than the manufacturer's original. Drink lots of water. I went home with a naso-gastric tube because I had a trach, but when it was finally removed I was on a liquid diet initially (broth, chai with soy milk, baby food, Boost dietary beverages). It took a few weeks to make my way through progressively thicker foods, but remember that gravy is (for now, anyway) a food group unto itself. Also, if she'd been on a weight-loss plan before surgery, there's good news: she can put on the feed bag. Calories are her friends.

I didn't talk for about the first month after surgery, but when I did grudgingly start, I was told that I sounded virtually unchanged. Folks who've known me for years tell me that they can't detect any change. When I first met my sister-in-law, she said that if my brother hadn't told her I'd had tongue cancer she wouldn't have guessed it. The only problem I have with speech now is the occasional tongue cramp if I've talked too long without a break or if I'm really tired. I've asked my doctor about this and he's pretty sure it's because the new side doesn't have the same kind of structural support and it's just muscle fatigue. If she hasn't already, she might want to see a speech therapist for an assessment and to get some pronunciation/articulation drills and range-of-motion exercises. My doctor wanted to pierce my tongue so that I could have something to hold as I stretched my tongue (he really did!). If this option is suggested to your relative, she should probably seek a second opinion.

This isn't easy, but you and your relative don't have to go it alone. If she wants to sign on, she's more than welcome. You're always free to participate, lurk, or what ever you need to do.

Julia (and Flappy)

This message has been edited. Last edited by: Julia,

Hi Julia

It's great to get someones answer who knows what it is like and it just gives us the answer to what know one else seems to tell us. It's early days for my mother in law but to hear your answer gives us encouragement. I will show her this and hope it time she may join herself. Thanks so much Tracy xx