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

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

Hi,

Can I just say I think your husband with your help is making great progress. I have read your words and I am so moved. You give me hope and strength to continue the journey.

Keep going and and I send you both hope and my very best wishes.

Best regards

Ken

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