Hi, I am new on here and just found out today that I need to have a total glossectomy. I am a single Mom with a young child and I would love to hear from others that have gone through the total glossectomy on how their quality of life (eating, talking) was after losing the tongue. My surgeon is at a nationally top ranked university hospital but I may still get a second opinion. He says that I will not be able to talk in a way that most people can understand after surgery. He also says that I may have to tilt head back just to drink since I will have to use gravity to make liquids to down throat instead of using tongue. I already have a feeding tube due to issues that came up during chemo radiation but I hope I don't need it forever. I have seen that some people were able to learn to talk again after total glossectomy and wonder if this is a rare occurrence?

Welcome to OCF! Im glad you have found our site to help you get thru this. We have a member Miss Kate who had this procedure and has overcome many obstacles from the glossectomy. She has not only lived thru this, she has thrived and recently had her second child.

Please do yourself a favor and go for a second opinion (preferably i at a CCC if possible) before you have surgery. Once its been removed, it can never be put back.

Best wishes!



Profile for Miss Kate (so you can read her posts and contact her if you want)

Hello, my Husband Kris had his total Glossectomy 3 and a half years ago.
He too is alive and well. It is certainly possible to talk after this surgery. Just try to talk without moving your tongue, for a rough idea of how it will sound. You will need the help of a Speech therapist after the surgery to give you some advice and help. I agree with your surgeon that you may need to tip your head back to aid swallowing. This is how Kris swallows, gravity helps. He stopped using his PEG, about 6 weeks post surgery. He only swallows liquids . I think that this is because he doesn't like the sensation of food coating his oral mouth without being able to clear it up with a tongue. He does swallow all his prescribed pills and our Speech therapist says he should be able to swallow meat!. But he's stubborn and refuses to try.
Kris also had his entire voice box removed during his surgery and he talks. You too will be able to talk. Practice, practice, practice.
Have hope and be positive. You will get through this and life will continue to be great.
Tammy

Hi Tammy,
Can others understand Kris when he talks? Or is it just those that are close to him that can understand him? Also, can he taste the liquids that he drinks? Does he still get enjoyment from the taste of things?
Thanks so much for your response!
Cathy

Hi Cathy, Kris had a total Laryngectomy too, so he has no voice box. This makes speech much more difficult. But he does talk. his family and close friend understand him, but for strangers it is like listening to a very thick accent and they don't get it . Many don't even try.
With only a total Glossectomy speech is much more understandable as you still have your voice box.
Yes, he tastes, and this has developed more as time has passed. Does he enjoy food? Not especially, but he has never been a foodie like me. But, yes, he does enjoy tasting . Different drinks, soups, blended foods. As he has no voice box he has no sense of smell either, which doesn't help. You will be able to smell.
You will get through this,
Tammy

Hi there... there are a few people here who've had total glossectomies. One of them in particular has a great quality of life. She is cancer free, and back at work as a tech - apparently she can eat and taste (there are tastebuds all over your mouth) and be understood enough to talk on the phone as well as in person. Sadly she's not around here as much anymore... I guess she's off living her life which is very much what we're hoping will be your situation as well a few years from now.

That said - I think your outcome depends a lot on the surgeon - and your plastic surgeon. I agree with Christine if you aren't at a CCC definitely seek a second opinion. Not about having the surgery... if you've had rads and chemo and the tumor is still there then surgery is a given and not something that should be NOT considered (this disease can be deadly - ). However, you want to make sure your dr. and reconstructive surgeon are the BEST. This will give you optimum quality of life post treatment.

I know people who've had the same type of surgery as me (hemi glossectomy) and have trouble swallowing and speaking.

I personally have minimal trouble swallowing which is easily dealt with by taking a gulp of liquid (usually only dry BIG things are a problem). And my speech is clear. I have a small lisp when I'm tired or cold. That's it. I am an actor so speech is super important, so I wouldn't fudge this. Your surgeon - is important.

Do your homework. This is a big surgery with major impact - done properly you can lessen the fall out.

hugs and best of luck

Thanks for the feedback Cheryl and Tammy and Christine!
I am very scared and this is so new so feedback really means a lot and is very helpful.

I have an appointment next week at Johns Hopkins. I hope they can tell me something to give me more hope than what my doctors here said (even though I do think my current doctors are very good).

It seems that the quality of life for those that have this surgery can vary greatly and while I am sure some of that is due to each individual patient, I am hoping that there may be some surgical techniques that yield a better chance for better speech, etc.

Cathy, I think your Drs are being honest with you and giving you the worst case scenario. You will be able to talk after this surgery without doubt. How clear that is will be up to you. You will need to work with a good Speech therapist, hopefully someone with experience with patients like you ( not that there are many who have this surgery). You will have to work at it and practice, practice, practice. It will take some time to get the best speech you can. Stay positive over this, you can do it.
There are many taste buds situated all over the mouth , oropharynx and the nose. Your sense of smell helps with this too. Despite also having a partial phatyngectomy and with no sense of smell, Kris does taste. Not as strongly as he did prior to the surgery, but he does taste.
Do get your 2nd opinion and then go with the most experienced Head&Neck surgeon team.
I am of the opinion that attitude of the patient also plays a large part in recovery. I hope that you have extended Family support to help with child care and to assist you with the recovery process. Keep active and get out for walks. Interact with Family and friends. I also think that a "happy" pill in the early months is not a bad idea. Having to cope with a depression doesn't help the recovery process. Do whatever you need to keep yourself on that upwards cycle.
Stay positive, you will get through this and you will continue to enjoy life.
Tammy