Hello. I had 75% tongue removal with a forearm flap resection. This was almost four months ago. I had had radiation and chemo PRIOR to the surgery.

I'm wondering about people's experiences with eating. I'm having trouble getting beyond the liquid stage for several reasons. First, there's no sensation in the flap. It's very hard to move things around in there. Chewing almost seems futile because the "tongue" is not big enough to reach the food on the teeth. Swallowing is fine for liquids but still feels difficult with anything besides that. Trouble getting it into position, getting it down, etc.

What do people do to help with this? I have pretty good taste quality considering how much of my tongue was cut out and I would like to eat real food again, although I could live with a liquid diet if I had to. But not being able to eat when going out for meals with people is pretty uncomfortable - more for them perhaps!?

Hello, I had a little more than 1/2 of my tongue removed and have the flap, which I have had surgery on since the initial time. It seems to want to lift up a bit, but the docs say that is okay, shows I am using it more. I eat anything I want, except for real hot spicy foods. I chew mostly on the side that still has the original tongue, I have tried to manuever food to the other side and use that side more but it is a chore to remember. In time, it will get better, I am still very aware of eating food out, being especially careful to take small bites and chew as much as I can, sometimes I still have a choking incident. But all in all, things are fine. I guess I didn't help you much, but just wanted to share. Take Care, Carol

Xynobix, just keep working at it & don't get discouraged. Think about it. Look how long it takes little babies to learn how to eat successfully. In a sense we have to relearn all over again how to eat. All the rules have changed. I find that I have developed a sort of suction action to maneuver food around in my mouth & sort of use suction from my throat to get the food into position to swallow sometimes. Carol, I love anything spicy & eat hot sauce, salsa, jalapenos, etc. all the time. I think it helps me eat a lot of different foods by causing mucous which lubes the throat. It's my theory & I'm stickin' to it! I can not do black pepper though. Black pepper burns the hell out of my throat.

Xynobix,

You are doing AMAZINGLY well for someone having 75% of tongue removed. I had (I'm guessing) about 85-90% of mine removed (subtotal glossectomy) in Feb 04 with radiation AFTER surgery. Had forearm flap like you + a PEG tube which I still have and use for the major part of my nourishment. Due to slow healing of the neck area due to rad and several subsequent cellulitis infection in the neck, didn't start therapy until December 04. After a year of swallowing therapy, two endoscopies with dilation to stretch the esophagus, daily massage and stretching of the mouth, I am able to swallow with a 2 ounce syringe. I have a sense of taste so there must be some portion of a workable tongue because I can make it wiggle ever so slightly.

I understand the discomfort about eating out because I have to sit there while everyone else eats. I have to use a syringe at the urging of my therapist because my "tongue" is sewn to the floor of my mouth in the front so it doesn't move. I am assuming you have some degree of motion in yours. So I'm further assuming that your flap is not tethered (sewn) like mine is. 10-15% shouldn't make that much difference. My ENT gives me the impression that my flap will always have to be "tied down" so this limits my ability to speak as one might imagine and I can't control any food in my mouth to swallow it even though my swallowing mechanism is working fairly well now.

I posted to Brian Hill in the General Board (SUBJECT "Getting Through It") about putting a section for people who have had major tongue surgeries regarding flaps, mobility, speech and eating issues. I have search Amazon and the AMA jounals and find precious LITTLE on the subject of how "glossectomites" like us cope with issues. The tongue is such an integral part to everyday living that I feel there should be more attention given by the medical and theraputic communities to the special issues - oral hygiene peculiarities, speech, eating, types of surgery for flaps (drgree of mobility), psychological coping in social activities, etc.

I apologize for rambling and getting "preachy" but I'm really happy to see someone who had so much tongue removed doing so well. Keep up the good work and watch the oral hygiene. I use a tongue cleaner after each oral intake which I try to get in 15 ounces daily.

Jim Haucke

Thanks for the tips everyone. My name is Dave by the way.

I guess I'll just need to practice at it. Right now my goal is to have my tube removed (it's a J Tube, not a PEG so feedings are much slower). I had a bowel obstruction after surgery resulting in what they called Superior Mesenteric Artery Syndrome. Basically nothing in the stomach gets through to the intestines. Hence the J-tube. It results from rapid weight loss (in my case about 50 pounds over 6 months).

I've gained about 15 pounds back so things in my stomach are starting to correct themselves. I get about 2 cans down orally a day now, and will just gradually keep increasing.

Does anyone have the experience that the throat feels like there's a lot less space then there once was. I swallow something small but it feels quite large. What can be done about that?

Jim - yeah there is not much information out there for those in our situation - it's really quite a rare thing it seems. My mom is working to get more attention paid to this actually. I'm 28 years old by the way.

I do have movement of my tongue thanks to the part that remains and it is not sewn down for whatever reasons. But movement doesn't help much when you can't feel anything anyway. That's my biggest problem. Speech-wise I'd say I'm about 75-80% of what I used to be. Certain sounds/words are very difficult but a lot of the time I sound as I did before - I suppose I'm lucky in that regard.

They've suggested that I might get this prosthetic thing that would lower the roof of my mouth (like a retainer) which make for less space for food to "get lost". Does anyone have that?

I agree a section devoted to those of us with this problem would be great.

Dave,

I am so sorry to hear you have had this terrible disease at such a young age. I was 68 two years ago when I had my cancer. I'm reading a lot of posts from young (to me, anyone under 60) people who have had major tongue surgery. I'm glad your mother is so caring to try to expand awareness of this form of cancer. I for one never heard of or was conscious of oral cancer until I got it. Since this is a less frequent cancer in the general population, it does not get the attention or research resources from the medical community.

However, the after effects are extremely debilitating as those on this forum can readily attest to. Problem is that these effects are not as outwardly visible to the public and many folks cannot fathom how that little oral cavity can make you feel after major surgery.

Gary, my heart goes out to you as you adjust to this "new" way of life. I can only thank good fortune that I was old enough when I contacted cancer to have the option to leave the work force (albeit unwillingly) without major disruption to that portion of my life. By the way, I joined the Support for People with Head & Neck Cancer (SPOHNC). For $25/year, I get a monthly newsletter. The March 06 edition had an extensive article by a NY otolaryngologist concerning tongue reconstruction. I'm thinking about writing him to get thoughts on what can be done with tongue flaps. This is because my otolaryngologist, while a fine surgeon, isn't very forthcoming about why my flap is sewn. Maybe its because I had pharynx and floor of mouth involvement but I'm guessing.

The prosthesis is OK but it only helps marginally in my opinion. Maybe I'm not using it right.

Carol L - I'm interested in what you had to say about having surgery on your flap. First time I ever heard of that. Its good you have enough real tongue left to control the flap somwewhat. Maybe there is some way to free up my flap (that NY doctor may have some ideas). Some movement would be better than none since one of the effects of this nonmobility is the need to carry many kleenex to get rid of moisture than build sup in my mouth frequently. If I don't, I tend to drool while starting to speak (embarassing to say the least).
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SCC rt lat tongue dx 9/03,surg 11/03 (T2N0M0);recur BOT &floor of mouth dx 1/04,surg 2/04 subtotal glossectomy, pharngectomy, forearm free flap,neck dissection, trach & PEG 12 hrs surg (T4N0M0), 36 rads 3-5/04; cellulitis infection 6/04 and 10/04, start therapy Nov 04 complete 12/05