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Tongue cancer - how to prepare for post-operation

Visda
Posts: 2
Joined: Aug 2013

Three months into what looked like a canker and one month into knowing that it is tongue cancer.  I am totally blown away by its nature and force.  My mom's tongue now has a white patch.  It got larger after incisional biopsy.

Can anyone comment on the recovery of the tongue and the tongue activity, speaking, eating and tasting, after surgery?

Thank you in advance for suggestions, thoughts, stories you share.

CivilMatt's picture
CivilMatt
Posts: 2873
Joined: May 2012

Visda,

Welcome to the H&N forum, I am sorry to hear about your Mom.

For me, I had base of tongue surgery to remove the cancer, it was very easy and I healed up rather quickly.  Eating and drinking were not major problems for me after surgery.  It was the rads which played havoc for those activities.

It will just depend on how complicated your Mom's surgery is and how well she heals.  If she follows my path she will do fine, if not, then expect more difficulties.

Best of luck,

Matt

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

As Matt said, a lot will depend on any additional treatment... Surgery itself may not be the biggest obstacle as for recovery, rads has usually the biggest long term effects But chemo will also play in to it if that's in her cards as well.

Best,

John

tommyodavey's picture
tommyodavey
Posts: 353
Joined: Nov 2011

Hi Visda,

 

Sorry to hear about your mother and her tongue cancer.  Have they given her/you any information on what it is, what grade, or what to expect?

 

We all have different experiences due to our own special cancer and treatment options.  Mine was on the base of my tongue.(BOT) It might have been there for years before my ENT found it.  I had no symptoms at all.  The hardest part for me was the tongue surgery and radiation treatment.  Others don't experience that pain that I did and I don't know why.  But it didn't last long and I was glad to be rid of it.  How is her neck?  Any swelling around the glands?

 

Whatever you do, don't go do an internet search like on Google.  It always shows the worst of the worst.  This is the place to be to get information and support.

 

Tom

wellington90
Posts: 20
Joined: Sep 2013

Tom,

What kind of surgery did you have on BOT?  How much did they take?  How are you doing?

dbrimlow's picture
dbrimlow
Posts: 2
Joined: Jul 2013

Visda,

I didn't have surgery, I had tonsil cancer that spread to the tongue. I had 7 weeks of radiation and chemo. But even before treatment, right after the initial biopsy I lost a lot of my sense of taste. During treatment this got worse. She can be prepared for her taste to be unusual. The good news is that it does come back. Also, it will be easier if she didn't have radiation (which temporarily damages the salivery glands so you can't produce saliva).

She will need to find soft foods that she can eat (taste, texture and ease of swallowing). It is of the utmost impotortance that she maintain her weight and not lose weight. She will need the energy to heal.

A. The worst change for me was that I couldn't taste any "sweet" at all. Anything sweet tasted either bitter or salty.

B. Then there were certain foods that tasted downright disgusting ... like:

1. chocolate

2. cola

3. fruit - all fruit tasted like bile. Very bitter and downright disgusting.

4. anything with citric acid in the ingredients was particularly bad like jello or gatoraide. You would be surprised to see how many foods have citric acid added.

C. Things that tasted strange - not necessary bad, but unplesant and unusual:

1. Dairy - anything with milk, cream, yogurt, butter or cheese tasted strange, as if I could taste the fat itself

2. Soda - all sodas tasted wierd because of sweetners and citric acid

D. And of course, you have to avoid foods that hurt when either chewing or swallowing. Stick with soft moist foods that can be swallowed with a minimal amount of chewing.

In two months I lost 45 lbs. During treatment the only thing I could eat was Kraft Mac & Cheese and oatmeal. The Doctors were worried and kept trying to get me to drink ensure shakes 4 x daily. But it wasn't until I got home that I could drink 4 ensures per day. I slowly started to try eating other things and finally settled on small pasta stars (called stelline) mixed with Cambells cream of mushroom soup as a sauce. I was able to eat two a day. So That was 600 calaries and the 4 ensure was 1400 calaries. So I got a total of 2000 calaries a day and started to gain the weight back.

The thing to remember is that it will all be over soon and She will be back to normal - it may take 1 month or it may take a year, but it WILL come back..

Best of luck,

David

 

kpgchambers
Posts: 1
Joined: Aug 2013

I too had what I thought was a canker on the bottom tip of my tongue that turned out to be a malignant tumor.  It was the "jumping" carcinoma cancer so the doc took out my right tonsil.  All this was not nearly as bad as the radiation treatment that was to follow.  The second PET scan showed a fairly large tumor at the base of the tongue and cancer cells were now jumping into the lymph node areas.  I had 35 radiation treatments and finished 7 weeks ago.  The pain in the mouth and tongue area is unbearable at times and the dry mouth at night is unbelievable.  I have been told that the pain issue takes 2-3 months to subside and the saliva glands take 6-8 months to work properly again.  Everyone's recovery time is different so hang in there.  My doctor was amazed to learn that all my taste buds were working 6 weeks after treatment had ended; but I sure to miss the saliva.  Better to be frustrated and alive than to be d........

Bart T
Posts: 10
Joined: Mar 2013

Sorry to hear of your mom's diagnosis and hope things work out well. I had surgery for tongue cancer. Everybody seems to have had a somewhat different area of the tongue involved and somewhat different procedures, but in my case, the cancer was along the side of the mid portion of my tongue. I had a procedure called a hemi-glossectomy. Basically, one side of my tongue was removed and reconstructed in the same procedure. At the same time I also had a bath of lymph nodes removed from my neck. 

The surgery wasn’t that terrible. I was in the hospital for three days, and by time I left I was eating soft foods and was able to talk well enough to be understood. 10 days post surgery, I was back at work and comfortable enough to have detailed discussions with clients and collogues. Within about 4 or 5 weeks, I had built back up to normal diet, with very little or no discomfort, and my speech was just about completely normal. My sense of taste was not impacted by the surgery. Although I was eating a normal diet, chewing remained a strange feeling and required more effort and some conscious thought,  as the tongue didn’t move the food around the way it used to. Cosmetically, the tongue looked fairly normal in shape, just a bit shorter.

 With any luck, your mom’s treatment will end with the surgery, but in my case I needed radiation because the cancer was found in one lymph node. The radiation was much worse than the surgery, and I’d be glad to get into that if someone wants, but for now, hope the surgery will be the end of the treatment

 If you want to hear a sample of my voice, six days post surgery I had posted a video note to my friends. That video can be found at http://www.youtube.com/watch?v=5-PVrJCK01s  I did a second posting 5 weeks post surgery, and for better or worse, the second posting is my normal voice.  That video is at http://www.youtube.com/watch?v=UYAQrAbAhUw. Feel free to ignore the content, but it may ease your concerns regarding speech after tongue surgery. 

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Kind of a weird response to this posting.... Several first time posters...

I think people first get Dx with cancer, search around for various forums, post a thread or question..., then forget where they were. You'll have the initial poster, then several replies or well wishers, but the OP never returns...., and a lot of times, neither to the first time posters responding.

Welcome, and stick around for awhile to contribute your experiences..

Also, check out the SuperThread, a lot of good info there as well.. first thread on this forum.

Best,

John

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