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My husband has had a tongue cancer and a recurrence. He would very much appreciate knowing what has helped others to relearn clear speech and swallowing. This forum seems to be the ideal place for genuine helpful advice from people who have been there. We are delighted to find you, with the help of a dear friend.

My husband had
1. radiation 5 weeks, (Stage 1, 1 cm )right tongue base four years ago (no surgery, no chemo)

2. this year, with the recurrence, (Stage 3, 6cm), mandibulotomy, left neck dissection and removal of 34 lymph nodes (1 cancerous), partial pharyngectomy, partial glossectomy, left tongue resection 50-60% removed, crossing the mid-line near the base of the tongue, and replaced with a thigh flap. Everything healed well within a month. He has some left arm limitations, and has lost 25 pounds.

He has no flexibility in his tongue, and he has copious secretions requiring suction every waking minute. His nourishment comes from a J-tube.

His fluoroscopic swallow test shows no rise in the tongue to press food against the pharynx, and with postural change, bolus drops down and is difficult to move off the epiglottis with repeated and strong hyoid swallow action. He was told in November to "try clear fluids" by mouth, although he would also be permitted to take soft cold food, like ice cream, to retrain the swallowing mechanism. Many warnings about aspiration, of course, and a series of exercises.

Since surgery in July he has seen speech language pathologists for a total of less than one hour. (we are in a rural area, but could travel for more therapy)

He is frustrated with his lack of progress, especially in view of "success stories" which one tends to hear.

What professional services did you have, with what frequency, to recover diction and swallowing after similar procedures?

We look forward to "meeting" you all and sharing experiences with people who really understand his challenges.

Helpmeet in Canada
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Hi Helpmeet

I'm so sorry to read of your husband's difficulties. Have you spoken to any of his doctors about the situation? It's not easy to regain flexibility and range of motion in the tongue, but it IS possible. You might want to ask the speech pathologist to send you some drills he can do in the mirror.

Has he been given any kind of physio for his neck and arm?

I've seen speech therapists three times: for a swallow test the day before I went home from the hospital, the day my ng tube was taken out, and once a month or so later at my doctor's request for an official evaluation. When I showed up for the last one, the therapist asked why I was there. When I told her, she said that I'd already been evaluated and it was decided I didn't need speech therapy--apparently no one had told my doctor. I didn't talk for a month after surgery, but when I started up again, my brother-in-law said I sounded "virtually unchanged." My speech improved as the swelling went down and my tongue healed.

My treatment was surgical, with no RT or chemo. I had a left side hemiglossectomy and resection, frenulectomy, and the left floor of my mouth was rebuilt.

Welcome to the site. I hope you find what you need.

Julia
Hi Julia
Thank you so much for your reply. My husband has continuing physiotherapy assistance with the arm and shoulder.
However, for the essential human functions of eating and speaking, one hour of assistance would be a slight exaggeration. He was given exercises at the first 15-minute session, a month after the surgery, and a swallow assessment with postural advice for just over half an hour at the second session, (three months later) arranged by the surgeon at our request. Followup will be a month later.
Surely this is not assumed sufficient to restore functions so badly damaged!
His speech is indistinct, far from the precise diction he used when reading news for the blind, and certainly not acceptable for conducting business seminars. I am his voice for all purposes. He has swallowed nothing but clear liquid, choking, perhaps a dozen times, with a written sheet of suggestions.
He does hundreds of repetitions of the exercises, but without supervision or assistance.
We are trying to learn what assistance to get, and how long the healing might take, through others' successes with a reasonable frequency of proper therapy. It appears to be available to some patients here.
Thank you so much for sharing your experience.

Helpmeet
Thank you, Ken! How kind of you.
I've read some of your journey--you always provide encouraging words--much needed.

We're at a brick wall without therapeutic assistance or a clear path ahead for regaining speech and swallow, unless survivors can show the way through their own experience.

Being here, "meeting" caring people like you, gives new hope.

May you be able to sign as ten-year survivor and so on, far into the future.

Helpmeet
I had partial glossectomy of tongue with modified neck dissection oct-13 followed by radiation and chemo,which I completed by Dec-13 .I regained speech after two months.First month I did not speak and most of the time I was on feeding tube.Subsequently in second month after radiation completion in Feb-14 ,i started speaking but with difficulty.By March second week it is better.except i get dry and cannot pronounce some letters clearly.
I hope your husband will definitely improve but patience and exercise.God bless.
quote:
Originally posted by Helpmeet:
My husband has had a tongue cancer and a recurrence. He would very much appreciate knowing what has helped others to relearn clear speech and swallowing. This forum seems to be the ideal place for genuine helpful advice from people who have been there. We are delighted to find you, with the help of a dear friend.

My husband had
1. radiation 5 weeks, (Stage 1, 1 cm )right tongue base four years ago (no surgery, no chemo)

2. this year, with the recurrence, (Stage 3, 6cm), mandibulotomy, left neck dissection and removal of 34 lymph nodes (1 cancerous), partial pharyngectomy, partial glossectomy, left tongue resection 50-60% removed, crossing the mid-line near the base of the tongue, and replaced with a thigh flap. Everything healed well within a month. He has some left arm limitations, and has lost 25 pounds.

He has no flexibility in his tongue, and he has copious secretions requiring suction every waking minute. His nourishment comes from a J-tube.

His fluoroscopic swallow test shows no rise in the tongue to press food against the pharynx, and with postural change, bolus drops down and is difficult to move off the epiglottis with repeated and strong hyoid swallow action. He was told in November to "try clear fluids" by mouth, although he would also be permitted to take soft cold food, like ice cream, to retrain the swallowing mechanism. Many warnings about aspiration, of course, and a series of exercises.

Since surgery in July he has seen speech language pathologists for a total of less than one hour. (we are in a rural area, but could travel for more therapy)

He is frustrated with his lack of progress, especially in view of "success stories" which one tends to hear.

What professional services did you have, with what frequency, to recover diction and swallowing after similar procedures?

We look forward to "meeting" you all and sharing experiences with people who really understand his challenges.

Helpmeet in Canada

Connie,

It's true that recovery is different for everybody. My recovery is similar to your husband's. I had a 3 cm tumor along my lower-left gum in 2016. It was stage IV since some bone was involved. (I never smoked.) Surgery removed the tumor, teeth and half the bone; but positive margins were left and it reoccurred this year with a 3 cm tumor in my left cheek and a 1 cm tumor under my tongue. I had fibula free flap reconstruction surgery in May followed by radiation and immunotherapy. I've lost 50 pounds.

My speech is not like before - I sound like I'm hearing impaired. I had a g-tube for 6 months and have been "trying" to eat solid foods for a month. I drink a lot of smoothies which causes loose bowels, so I'm trying to add more solids. My tongue is pretty paralyzed (half of it is leg muscle) and I have to use a chopstick to push food between my teeth. It takes a long time and I drool a lot. Very frustrating! I believe my tongue needs to be untethered as it's grown attached in places. Maybe this will help.

I'm going back to speech therapy next week, per my doctor's orders, to have another swallow test and to help me with speech and eating. I still choke occasionally, especially when drinking thin liquids. I can't open my teeth more than a couple of millimeters so bites have to be very small. The joint where the tibia was joined to my mandible has been producing sharp pains when I chew.

I'm still working too and it's difficult when I have to speak on the phone, but people are very polite and understanding. I must over-enunciate to be understood. I have trouble with "g" and "ing."

The only advice I can offer is to have your husband continue to try different foods. I found that I can eat pulled pork, pasta dishes, pizza, pancakes, mashed potatoes, squash and of course, soup. Tried some pecan pie on Thanksgiving and that's when the sharp pain began - can't chew pecans!

I'm glad I found this site. Sometimes I feel so alone. My quality of life has changed, but I still have a life, so I'm grateful for that!

Kathy

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