Hi
My name is Doreen and my husband is Lee. He has stage IV SCC base of tongue and epiglottis. He had a radical neck, total glossectomy, and partial laryngectomy on April 12, and is currently undergoing chemo and rad. He hAD to have surgery(not the treatment of choice) because 10 years ago he had chemo and high dose rad for tonsillar non-hodgkin's lymphoma and could not receive enough rad this time to kill the new cancer. I guess my first question is if there is anyone out there who had total tongue and partial larynx who can swallow anything? We're told this combo of surgery is rare and they don't have many statistics. He currently hs a peg tube and a trach, both of which were not sure are permanent. He is so sick right now and I was hopuing to share some info with him. at 42 years old, he can't fathom never eating again!
Thank you and God Bless us all.

Hi Doreen,

I see you had no replies. I posted on June 16 for the first time in both "After Treatment Issues" and "Introduce Yourself". No replies yet so I don't want you to have the same frustration. I had a subtotal glossectomy, forearm free flap, and pharyngoplasty for recurrent anterior, base of tongue and pharyngeal cancer in Feb 04 plus 36 rads finished in May 04. PEG tube in Feb 04 which I still have. Larynx was not involved. Complications included cellulitis infections in June and Oct 04 which held up swallowing and speech therapy until Dec 04. Plus good old mucous and tight mouth which must be constantly stretched to get suppleness. Finally passed modified Barium swallow test in late Feb 04 but am confined to liquids through a syringe that "squirts" to back of tongue. My "new" tongue is sutured to floor of mouth, therefore its immobility, according to the therapist, accounts for having the syringe and lack of good speech. Therapist showed me a book that seemed to suggest the possibility of freeing the tongue surgically. I am going to see my ENT June 22 and I will ask him. Failing a satisfactory answer, I will try to contact the book's author for more details. Did your husband have a free flap reconstruction and if so, is it mobile or sutured?
My point of all this is that I have read where total glossectomy patients have returned to eating by mouth. I was always tired after rad so I fully understand. I am not giving up, nor should you.
God Bless you and your husband as you struggle with this dread disease. Even though I have great home support, believe me, no one understands that hasn't been there. I'll pass on information as I get it. Feel free to ask questions.

Sorry Guys
I for one cannot help either of you , I wish I had the information you need.
The only support I can offer at present is a ready "ear" for listening and positive best wishes sent your way.
Take care
Marica

I can't answer your questions either - no tongue involvement - but would like to welcome you Doreen, Lee and James to the site. I agree that we need to have 'been there' to fully appreciate the impact of oral cancer and its after-effects on our lives. Although my taste is minimal, I am able to eat and talk normally and I am very thankful for that.

I send you best wishes for your recovery and hope, James, that your ENT will be able to free your tongue surgically.

Love from Helen

Hey people!! Happy Fathers Day!! Wer'e still here! Doreen, tell Lee hello & to keep his chin up! That goes for you too. I did not have laryngectomy, but I did have 40% right ressection & forearm free flap which for a long time I thought had very limited mobility because it was sutured down tight to floor of mouth, but I've either adjusted or the tissue has stretched from use or both. I never stopped trying to eat orally through the whole thing, even when just a sip of water would make me cough a lung out! I only had the trach for a couple of weeks. I do know that so much of how I function now is just "normal" for me. As in I always eat with a pile of napkins, I can't lick my lips, I can't clean food from my teeth so I always carry floss, I almost always drink milk with everything I eat to get it down, etc. I still occasionally find I've eaten something that just won't go down & is just stuck there in the back of my throat in a wad that I have to run to the sink & hack out! But I have come a long ways for sure. My kids reminded me of that today! Where Lee is at right now is bad for sure, but unfortunately is the new reality & he will adapt & be better, feel better, & get better. It just takes time & effort. Most of us here have gone through our own grueling, hellish treatments, struggles & despair. Those same folks will tell you it does get better, but takes some time. Take care, Erik

Hi Doreen and Lee,

In July 2003 I had a total glossectomy, right/left neck dissection, trach, and peg tube surgery (no larynx involvement). After 8 1/2 months I was able to have the trach and feeding tube removed which was a BIG milestone! Today I am able to eat just about anything I want (rare steak, chicken, pasta, seafood, veggies, etc.) except for most if not all bread-type foods including the "good stuff" (cookies, chips, crackers!). For the most part I've found that if I can pickup the food up with my small fork, then I can eat it. Needless to say mealtime consists of hugh amounts of water needed to help move it along and wash it down, but hey, I hear water is good for you, too!! I must say that eating is not as enjoyable as it use to be (sense of taste is very limited) and does require a lot of concentration and determination, BUT it can be done! And occasionally the food does get hung up in my throat but nothing that a cough and spitting food out can't solve (sorry to sound gross). Anyway, hang in there, Lee. By the way with the help of a speech therapist and using a palatal drop mouth prosthesis, my speech is pretty darn good.

I hope this helps as far as some encouragement that you'll be able to eat again.

Hugs, Nancy

Thank you for responding. My husband had a flap constructed from his thigh (knee to hip due to needing total tongue) It is sutured. They don't feel he'll be able to do the syringe push back method for fear of aspiration since his epiglottis was also removed. They have only really given him about a 10% chance of any swallowing. This whole thing is so horrible-I wish I could wake up and it was over. We have a 6 year old little boy that I am also so worried about. Thanks for listening.

Hi Doreen and Lee,

I hope that you are finding the suggestions of the members helpful. Although I have not experienced any of the treatment that Lee, did, I want to offer my support and prayers. I am a dentist and a neighbor, living in Yardley. If there is anything I can, please let me know.

I assume that Lee's surgery was done locally. All the cancer centers in our area are great. I had mine done at Fox Chase. Where was Lee's done?

Jerry

To All,
Just got a post from cnilson in "After Treatment Issues" under "Immobile Tongue" where she said her husband has his tongue "tethered" to floor of his mouth and their ENT said it could be feed up with a small outpatient surgery. I don't know to what extent his surgery differs from all of ours but this is certainly encouraging. I will see my ENT this week and I will ask about it.
Just wanted to pass this along as there is always hope.
Doreen, my heart goes out to you and your family. At least I was 67 when I was struck by cancer with a grown family. I should count my blessings and not complain. One thing I learned is to start therapy as soon as possible after rad and chemo. This is so important and it will help your husband regain hope and strength.
God Bless.
Jim

Dear Doreen and James, Don't know that John's situation will be of much help to yall, but his surgery involved removing a chunk[that's a medical term-don't ya know]which shortened his tongue 1 to 2 inches we think. It will no longer lift so we are guessing that it is sutured down also. John is finally getting up his nerve to ask the surgeon just exactly what he did, so maybe we will know more next week. Swallowing was easier for him a week after surgery than it is now after rad #18. Now he is having a difficult time. We'll just have to wait and see. I encourage you to stay in touch with this forum. It is the place to be for encouragement and support. Amy

Doreen,

My surgery was a lot different from your husband's, but I can certainly relate to the issue with your 6-year old. I am also 42 and have two children, a 7-year old and a 6-month old.

I have found the best thing with my 7-year old was honesty. We just always discussed with her what was happening. Not sure how well your 6-year old can read yet, but writing to her before I could talk again really helped. Also, if it's any consolation at all, I can see her "healing" as I heal. It's like, the more she sees me return to the Mom I was before the surgery, the better.

Kids are so flexible. Just keep the lines of communication open and encourage him to ask anything he wants. Also, if you don't see that working and he seems to be withdrawing, there are counselors who specialize in dealing with the family members of cancer patients.

So sorry your family is dealing with this.

Jennifer

Helo Doreen and James, I am not able to add any advice to your questions, however I will say I'm sorry that no one replied to your posts James. Once and a while a post will go "under the radar" and get over-lapped by other posts. It was by no means personal. Generally we are a pretty fun group. (well, as fun as a life threatning illness can be)

HI jerry and all,
We live in Harleysville. Lee's surgery was done at U of Pa. We are also doing all of his treatment there as well( chemo, rad, speech, PT,dental). He also treated there for his lymphoma 9 years ago. We got a second opinion at Sloan which concurred with Penn.
Thank you all for responding. It's nice to talk to people who have gone thru the same things as us.
Doreen
Doreen

Hello All,

As mentioned in a previous post, I saw my ENT today and asked regarding unsuturing my restructured tongue. His opinion was that (1) I'm still healing and he doesn't want to do anything orally with me for the time being -- I had floor of mouth and pharynx involvement as well as Stage 4 tongue SCC so that accounts for his reluctance I'm sure; (2) most (80-90%) of my tongue was removed and replaced with skin, vessels, and tendons from my forearm to form what he called a "neotongue". He said it looks like a tongue but isn't a tongue in the functional sense since the original muscles that control movement of the tongue are gone. Meaning that even if it were freed up from floor of mouth, it would not funtion like a normal tongue where a person has control over its movements. What little wiggle I have at the back of my tongue is due to the small stump that was left after subtotal glossectomy. So I'm guessing that I would need a heck of a lot more than an outpatient procedure.
He encouraged me to keep trying to swallow as much as possible to build up those muscles plus keep doing the therapy exercises which I will certainly do.
I will continue to pursue options. No one ENT has all the answers.

My best to all,
Jim

Nancy,

In your post you said you had a palatal drop mouth prosthesis that helped with speech. What is that? My husband had 2/3 of his tongue removed and speech is ok, but most people have a hard time understanding him. This is really effecting him he really is a completly differernt person, so I research everthing I hear or read about.
Thanks!
Cheryl

Hi James, If i may ask where are u being treated at? I live near Dayton.

Hello Nancy,

My speech was terrible for about a year after treatment. It started to improve after that. People I haven't talked with in a long time tell me how much better I sound. I have to remember to slow down and look directly at whom I'm speakin to.
I never go anywhere without a bottle of water. Being outdie the wind tends to dry my mouth out.

All my Best, Danny Boy

Hi Cheryl,

I'll try my best to describe my palatal drop prosthesis but I'm sure I won't do it justice. My prosthesis was "designed" specifically for me by a maxillofacial prosthetics prosthodontist (a genius in my book!). It attaches to the roof of my mouth much like a retainer does if you've ever had braces. The mouthpiece "drops" down and consumes a large portion of the space that would normally be between my tongue and the roof of my mouth closing up the empty space left after my glossectomy.

Although people can understand me when I'm not wearing it, the clarity of my speech is 100% better when I do have it in. Believe me my speech isn't perfect by any means but it's better than I could have ever imagined considering the amount / type of surgery that I had.

I know I'm not doing this mouthpiece justice in trying to describe it but maybe Brian (or somebody else) can better describe it.

Nancy

Nancy,

Thanks for the info. I am going to see if I can find a Dr.that knows about this in our area.

Thanks again,
Cheryl