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squamous cell carcinoma of the tongue

leapdaymom's picture
leapdaymom
Posts: 9
Joined: Apr 2003

I am 27 years old and I was diagnosed with squamous cell carcinoma of the tongue on Feb.6,2003. At the time I was 8 1/2 months pregnant with my second daughter. I have never smoked. chewed tobacco, etc.. I wasn't a risk candidate. This all started out as an ulcer under my tongue 3 months before! My ENT dr. decided to wait until I delivered to do a partial glossectomy. I delivered two weeks early to a healthy girl on 2/15 and on 2/21 I went back to the hospital for the surgery. He removed 1/4 front left portion of my tongue. The dr also took 8 frozen sections to check for a clear margin. I was in ICU for 2 days and then on the oncology floor for 3 days. I was able to get down liquids, broths, shakes and some cream soups. The resulst of the frozen margins came back from the lab clear of cancer. After about 2 weeks I progressed to soft foods and did very well.

I then went to the Univ of Pennsylvania (in Phila., PA) for a second opinion with the director of Head and Neck Surgery. He felt that the 1st surgery wasn't enough to make sure there was a clear margin plus needed to do a neck dissection to remove the salivary gland and lymphnodes. They would also reconstruct my tongue using the muscle and arteries from my forearm and then take a skin graft from my thigh to cover my forearm.

Needless to say this was very overwhelming! I just gave birth three weeks before and he was telling me that I would need more surgery in two weeks. I knew that I had to do it and the chances of me needing radiation were slim to none. He wanted to save radiation as a last resort due to my age. So 3/31 I went back into the hospital. I had the hemi-gloseectomy, graft, flap reconstruction, tracheostomy, and radial neck dissection.

I was in the ICU for 3 days and oncology floor for 4 days. I left the hospital with the trach and with a feeding tube down my nose to my stomache. I wasn't tolerating the tube feeds very well. They kept expecting me to be taking in much more than I was and I kept getting sick. What they failed to realize was that I haven't eaten normally since Oct. so my stomache wasn't used to having a lot in it! The good side effect has been the weight loss! I went for my check up two days ago and they took the trach and the feedong tube out! I was sooooo excited!! I am now on a liquid diet of broths, shakes, and cream soups. I have dropped 50 lbs since having my daughter 2 months ago but no harm done! I start to see the speech therapist this week and am on the road to recovery. I just try to keep it positive and light at all times. I am recooperating at my parent's house an hour away. The hard thing is being away from my girls.

yikes
Posts: 2
Joined: Jul 2001

I am 2 1/2 years after surgery and radiation-can be contacted directly at jeri@yikessalon.com--don't check the site often.

SGK
Posts: 1
Joined: Jul 2003

Hi leapdaymom,

I was diagnosed om May 21, 2003 with the same thing, but after reading your story really feel lucky. My EENT told me he figured radiation would best treat me, but sent me to the BC Cancer Agency to meet with an onologist. When I met with him four days later, he said he thought radiation was too radical and told me he thought the reconstructive surgery would be best and sent me to see a mouth and neck surgeon. Four days later the neck surgeon thought the reconstructive surgery was too radical before we saw the results of the CT scan. Another four days passed and my lymph nodes were clear so I had a partial glosectomy of the left side of my tongue.

I was out of the hospital one day later and flew home to recover. I had a lot of pain and then a lot of morhine. Then with the morohine on board I had a lot of clouded and foggy days. Naps and not much else and two weeks flew by.

Now post op 19 days, I am five days off the morphine, and three days into solid food. Like yourself (but certainly not to the same degree) my stomach shrank and I have lost weight. That is not a loss at all! I'm lacking energy but I think that's mainly due to lack of nutrition.

My speech is a bit disabled but I figure it should be okay when I get back to school in September - I teach senior high school.

My life wrinkle was the best case scenario of a bad case scenario. So sometimes this diagnosis can be less invasive.

I too meet the rare odds of getting this cancer. I am young, a non smoker, not a chronic drinker and don't chew tobacco or becal nuts. I don't think we will ever know the cause. I hope this is the end of the stry for me.

I also hope you are felling stronger and stronger and able to be with your kids. Good luck!

otis
Posts: 3
Joined: May 2003

Can you tell me more about the reconstruction of your tongue?I had the same type cancer surgery,20 yrs ago I had this on the left side.I never has any reconstruction .They did remove half my tongue,all my teeth and part of the lower left jaw bone at that time.
Sincerely, Edna

cindycg
Posts: 2
Joined: May 2004

WELL I HAVE ONE THING TO SAY GOD BLESS YU!!!! I THOUGHT I WAS YOUNG AT 40 TO HAVE IT. I ON THE OTHER HAND DIDNT WANT SURGERY FOR FEAR OF THE TUBE FEED AND TRAKE, AND SPEECH PROBLENS, I HAD 36 WEEKS OF 4 HRS OF CHEMO & RADIATION 5 DAYS A WEEK , LOST MY HAIR ,VOICE, AND WAS DOWN TO 88 BLS. IT WAS TUFF WITHOUT NO OUT SIDE HELP JUST ME AND MY 11 YR. OLD SON , GOD BLESS YU AND GIVE YOUR PARENTS A BIG KISS EVERY DAY, I'M GLAD YU HAVE SOME SUPORT I GOTTA TELL YA I REALLY NEVER FELT SO ALONE IN MY LIFE, MY SON WAS GOOD BUT HES NOT ONLY A SPECIAL NEEDS CHILD HIMSELF, SO I HADDA BE STRONGER FOR HIM, BUT VERY ALONE EXCEPT FOR THE HIGHER POWER, I WILL SAY A PRAYER FOR YU, TAKE CARE! FEEL FREE TO E-MAIL ME ANYTIME, ONEFOXYLADYCG@AOL.COM .

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