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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.

mah
Posts: 29
Joined: Mar 2003

My husband had sqamous cell carcinoma of the tonsil that had spread to the tongue, soft pallet, the jaw bond and the lympfnodes in the neck. That was 4 years ago. He had the very radical surgery including a neck resection, but they used chest muscle to rebuild his throat. It took him about 5 months to recover from the surgery. He received 6 weeks of radiation but he turned down the chemo. He was fine for 2 years and it came back in his lungs. He is now dying and probably does not have long to live. In the last 2 years he has had radiation and chemo but it was too late to be cured. Don't be afraid to take treatments to be sure that nothing is left in your body. He now wishes he had taken chemo the first time. Maybe it wouldn't have made a difference but we always wonder what if. If the other parts of your mouth were clear and you neck was clear you should be ok. But I cannot stress enough, do not be afraid of treatments if there is even the slightest chance there could more in your body. I send my best wishes to you for a speedy recovery and congratulations on your new baby. I have 6 grandchildren and 2 of them are babies. The best medicine in the world is to hold them close. Good luck. Mary Ann

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

thanks so much Mary Ann. My thoughts and prayers are with you and your husband during this time. Like you said the best thing to do is be around family and hug and love them now.
Julie

hilllaguna
Posts: 11
Joined: Sep 2001

You have been through a lot...but stay positive, as there are many of us out here that are long term survivors of oral cancers. I too had none of the risk factors for oral cancer. It was determined that most likely a virus, HPV 16, was the instigator of my oral cancer. It turns out that this is the virus that causes 95% of cervical cancers in women, and now they have determined that it is in those oral cancers which are found in the non smoking population of patients. There is a bunch of info on HPV and oral cancer at www.oralcancer.org. I wish you a quick recovery. Brian

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

thanks for the post and the webiste! Best of luck to you also! Julie

luvmykat
Posts: 8
Joined: Mar 2003

God bless you, leapdaymom. My mom is dealing with squamous cell carcinoma of the tongue right now. Her first clue that anything was wrong was in August after having a crown put in. Her doctor then felt that it was irritation from the dental work, but told her if it didnt clear up to see an oral surgeon. Unfortunately, other things got in the way and she put it off because it did seem to improve to her. In January, it flared up with a vengeance and we went to the oral surgeon and got the bad news. She had her surgery on February 12. 1/2 her tongue on the left side, floor of mouth and a radical left sided neck dissection along with removing a piece of her jugular vein. Like you, they also reconstructed with a muscle flap from her forearm and used skin from her thigh to cover that. Mom has a PEG tube in her stomach for feeding, and had just been cleared a few weeks ago to start liquids and some very soft food like ice cream and applesauce. She was supposed to have chemo and radiation, unfortunately, she got sick from it and it got put off. She now has a recurrence and it is such a fast growing cancer that she has, that they cant do anymore surgery on her. She must now decide what she wants to do with her remaining time. I am not telling you this to scare you, but to let you know that you must do whatever treatments they need you to. The doctors have the knowledge from patient's like my mom to do what they can to make sure you do not have a recurrence. I have found out in the last couple of months just how common this type of cancer is. And like you, my mom did not smoke, drink, or chew tobacco either. Good luck to you and your new little one. God Bless. Sue

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

Sue..best of luck to your mom!! I went to the dr last week and all the pathology tests came back clear! No Chemo nor radiation!!!!
Julie

luvmykat
Posts: 8
Joined: Mar 2003

leapday, that is great. I am so glad to hear your pathology came back good. The best of luck to you and your family and God Bless.

Sue

lisaann65
Posts: 3
Joined: Jul 2003

Dear Mom, I'm at work and just have a brief second, but. . .I just wanted you to know that I was only 22 and had a 9 month old baby when I was diagnosed with the exact same cancer, and that was 15 years ago! Keep the faith and good luck--I may try to tell you more of my story later. . . take care, Lisa

squishysands
Posts: 3
Joined: Sep 2003

were you happy with the results and advice at penn? Any doctor you recommend?

mdmurphy
Posts: 5
Joined: Jul 2004

Dear leapdaymom,
On May 3, 2004 I had the exact same operation that you described. I am now going through Chemo and Radiation therapy. I would love to tell you that the hardest part is over--and we both know the toll that operation had on both of us, but we still have work, suffering, and anxiousness to bear. One good thing is that we have all found a place where we can feel a little less like freaks. Hang in there and keep asking questions! I'll be looking for your posts.
Michael

shieldsj
Posts: 1
Joined: Apr 2005

Did you say they rebuilt your tongue? How much of it did you have removed? My brother had 5/6th of his removed and they told him they could not rebuild tongues yet. I will be looking forward to hearing from you.
Julie

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