I have a question for people who have had base of tongue cancer. Has anyone had surgery to input a flap? I don't mean to sound ignorant, my cancer was on the left side of my tongue and 1/2 of my tongue was removed with flap reconstruction. I talked with a man yesterday (3 year oral cancer survivor) who told me that he is still on a feeding tube, cannot swallow to eat because he was told base of tongue could not be reconstructed. He had his surgery at a hospital in Baltimore, he asked for my surgeon's name to talk with him about reconstruction and come off the tube. Anyone know of this? He is so upbeat through it all, he told me that he was a non smoker (I would guess his age in his 50's)had some problems with swallowing, etc. his dentist also held off on any real treatment or referral for months. Finally he saw a doctor at the hospital and she told him that there was good news and bad, he asked for the bad first. She told him he had oral cancer, the good news, she thought she could save his life. Thanks for any input, this gentleman made me feel downright blessed and lucky that I can eat and drink. Carol

Because of the problems with swallowing and (sometimes) speech after base-of-tongue surgery, neither of two top CCCs (Hopkins and Sloan-Kettering) at which we consulted do this surgery now -- instead relying on chemoradiation to reduce the tumor. However, our Hopkins ENT did discuss how BOT surgery could be done, which *does* include reconstruction and restoration of function as much as possible.

Many non-smokers with BOT or tonsillar cancer are now being found to have human papilloma virus-induced disease (but not always). While this does not affect initial treatment, it does appear to be associated with a better prognosis as these cancers seem to be more responsive to cemoradiation therapy.

Gail

Hi Carol,

Aunt Rosemary had surgery a year after her glossectomy to free up adhesions that were holding her new tongue down and the surgeon added a piece of tissue (this time from the inside of her cheek instead of from her forearm like the first time) to increase the size and mobility of the flap. It relieved her constriction until she developed more adhesions later on. There are surgeons that do this routinely for patients to make them more comfortable. The surgery is no where as complicated as the first. I remember her being in the OR for 3 1/2 hours and out of the hospital in just a few days.

I hope this helps.

Hugs,
Lisa

Thanks Gail and Lisa.....I will pass this info on to Ted. Have a wonderful day, Carol

Lisa,

You spoke about your Aunt Rosemary having adhesions removed after glossectomy. I had a near total glossectomy 31 months ago and am still on a PEG tube. My flap is "tacked down" in front and my oral cancer doctor did not offer any hope that the flap could ever have any mobility. I can swallow some things but because I have no tongue mobility my therapist has me using a syringe to "shoot" liquids and pastes to the back of my mouth for swallowing. I have no control with "regular" eating. I would give my right arm for any tongue mobility.

Question for you is did Rosemary have complete glossectomy or just a partial glossectomy?

Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Hi Jim,

I'm sorry I didn't answer right away. We have three people in my husband's family battling cancer right now and it's gotten to us lately. Aunt Rosemary had about 60% of her tongue removed. After she had the first surgery to make her tongue more mobile, she developed adhesions again and when that happened, the only way she could eat was lying down and putting her head back allowing gravity to help to get things down. So I can understand your shooting things to the back of your mouth. She also had the feeling of having her tongue tacked down.