19 years ago I was first diagnosed with cancer of the tongue. It was treated with surgery and radiation. I was 24 years old. My biggest problems in the following years were "radiation fallout" dry mouth, sensitivity to flavors (like mint and pepper), keeping my teeth (I have a great dentist), reoccuring excessive scar tissue, and a very soft voice.

I am now 43, this past March I was informed I had cancer of the tongue again. I had surgery on April 23. I had a fiblua flap performed, my right leg was the donor site. I have encountered many new problems that I did not go through the first time (Thick mucous, swelling, speech, swallowing, learning to walk again) Perhaps it is because I am older. I have been taking my time recovering as my medical team reminds me that an 11 hour surgery is not a minor surgery. I am still having problems with swallowing and my nutriton needs are met mostly on Boost and liquids. I just had my second swallow study and will see a dental specialist for an appliance to lower the roof of my mouth. I am hoping it will work for both speech and eating -- the K's and G's are very difficult to pronounce now.

A very good friend found this group for me. I look forward to being of any help that I can, as well as learning from others.

Katie.......I am from Mpls/St.Paul too. I was diagnosed with cancer first time in 1989 at the age of 34 and then had a recurrence in 1997 where I lost over two thirds of my tongue. My donor site was skin and a vein from my right arm. I then endured both chemo and Rad. Where were you treated? Who is your ENT, oncologist? Would love to talk with you, maybe we could meet sometime since we're both from the cities. Please feel free to email me at [email protected]. I can then give you my home phone number if your interested. Nice meeting someone from my area...Sincerely Donna

HI, I am an ENT patient who had cancer 2 years ago.They took out a lot from the floor of my mouth and some of my jaw bone. I also had a flap ,bone taken from my leg . Mine failed, I spent a month in the hospital while they debreeded my mouth, then they put a football helmet bar on for a month to hold my bones in place then I went back in and got a bar inside and flesh was taken from my shoulder to make this work. That was a year ago and now I have an infection that will not heal so, new bar and flesh from my arm to line my mouth! So far cancer has not been my problem, reconstruction is. any advice? gnelson

Gnelson, Sorry you are having so many problems. They removed the floor of my mouth and part of my jaw bone in addition to part of my tongue. They rebuilt the floor of my mouth with skin taken from my neck at the dissection sight. I am now in the process of trying to get some more jaw bone for implants since I had to have all of my back teeth removed from one side. Three weeks ago, I had a major bone graft done on my jaw, with bone taken from other parts of my mouth. Tomorrow I'm going back to have a large portion of it removed. Reason being is that when I talk or chew, it keeps pulling apart due to the fact that my tongue is sewn to the floor of my mouth. Right now I have exposed bone and can see the screw where they put the graft on top of the remaining jaw bone.

Anyway, welcome to the site, we are all here to learn from one another and vent at times. Please feel free to email me direct at [email protected].

By the way where are you in Pennsylvania? I live in Landenberg, Pa. but I was born, raised amd work in Wilmington, De. so I still consider that my home.

Take care.

Anne.

Katie, I am also a Minnesota cancer survivor who has dealt with 2 bouts of tongue cancer. I was 32 the first time (surgery only) and 46 the second time (sugery and radiation). The treatment was more involved this time but I also think that being older has contributed to my not recovering as quickly as the first time. This site has been a wonderful place to meet people and share information.

Ilene thanks for the support. I am frustrated at times as I am having trouble with walking due to the fibula being removed from my right leg. I am getting a little bit more persistent at trying to do more. My family, friends and health care professionals keep reminding me it has only been two months. I have had many appointments this week and will be receiving a brace for my leg this Monday it should help with walking and hopefully it will allow me to drive again. I also will be seeing a dental specialist for the possibility of having an appliance made to lower my palate so that I will be able to speak better and eat. My speech pathologist asked the nutritionist to call me and I found out I am probably not getting enough protein which may be causing fatigue she recommended a protein powder that I will try to order next week. All in all I keep reminding myself it could have been much worse....

Thanks again, I'm trying to not think of myself as being older just wiser and needing to learn to enjoy a little R & R (relax and recover).

Katie