At last, a website that offers information, support and encouragement. I was diagnosed with squamous cell carcinoma in September of 2001. I found a tumor under my tounge the size of a fifty cent peice and a lump on my neck every time I ate something. I underwent surgery in October that consisted of removing the tumor and using a skin graft from my thigh. The surgeon thought Id be back to work in a couple of months.... wrong. Part of my tounge had to be removed; the cancer had metastisized to lymph nodes on both sides of my neck and disection was done to remove two nodes. Infection set in the day after I was released from the hospital. Radiation was performed twice a day for six weeks beginning in November. My taste buds have not returned and they had to pull what teeth I had on the bottom which makes eating all but impossible. I can, however, tolerate Boost (six cans a day). I am beginning to eat soft foods like scrambled eggs and soups, but very little per day (about 4 Tablespoons). It has been a long rough road but I feel God has given me a second chance at life. I have found, like so many of you, that a positive attitude is essential for a speedy recovery and healing. I have not yet returned to work. Part of me wants to but another part of me is very much afraid of how others will perceive me. As shallow as it sounds, I am self conscious of my appearance and speech. Has anyone out there had cosmetic surgery for minimizing scar tissue? My doctor's say there is nothing that can be done and future surgery would probably make things worse. I have begun massage therapy to help move the fluids and break down the scar tissue on my neck. It seems to be helping.
I have more questions but I'll stop here. Since I'm a new member, I hope to correspond with some new found friends. Hopefully I can answer some questions that others might have or at least lend some support to another. Thanks for listening. Lorraine

Lorraine, I can so relate the concerns about appearance. I was never one who fussed much about looks but when I saw that neck dissection incision plus the scar from the trach I was very self-conscious. I was only 32 at the time. Right after the surgery some people tended to look at me as if they were trying to figure out what happened but either that went away as the scar faded or my attitude changed so that I didn't notice. I wore scarves for a while and then decided they were more trouble than they were work. I wasn't too concerned with my speech then as it came back fairly quickly. However a second surgery and radiation have greatly changed my voice and I am uncomfortable with the raspy voice and my difficulty pronouncing some words. My current job doesn't require much speech but I was a university professor for several years and was always proud of my ability to speak in front of large groups. I think others are less bothered about my voice than I am.
My local ENT also does some plastic surgery and really discouraged me from that route saying he didn't think it would make much difference but we could explore it further if I felt strongly about it.
Keep asking questions!

Iawill...........IIrene is right, keep asking questions and you'll find the answers here. There is always someone here who has "been there, done that" and we are more than willing to share our experiences.

As for your physical appearance, I don't think there is a person on this forum who didn't at some point wear turttlenecks or scarfs to try and cover up the scars and the trach hole.....well, maybe I should just speak for us women, I don't know about the guys. LOL However, at some point you will just become comfortable with yourself and your appearance and slowly the scarfs and turttlenecks will disappear. I don't know when that is gonna happen for you, but I can almost guarentee it will happen....when you're ready. I rarely think about the way I look or sound anymore. I think it was Popeye who said it so eloquantly......"I am what I am what Iam what I am" and right now at the age of 47 I pretty much take those words to heart.

Your taste buds will come back too. It seems like everything just takes forever....and I guess it does. Slowly but surely you will regain some of your losses and the eating will just continue to get easier and easier. Five years after losing over two-thirds of my tongue I can and do eat almost anything; alot of it depends on how badly I want to eat a certain food too. And yet sometimes eating is still just plain work. Now that summer is here, somedays I might stuggle with a grilled hamburger because I want to taste a bit of summer pleasure, other times I won't waste my time with a hamburger because it is simply too much work. I do find peace of mind knowing that I can eat a hamburger if I want to though. Five years ago when my speech therapist told me I would be able to eat a hamburger I almost laughed in her face! I thought she was either nuts, or just flat out lying to me. She was right, I was wrong.

Along with all the eating, swallowing and speech issues I think it also just takes time for us to adjust to our new rebuilt mouths/tongues. If I lost a leg, it would take a certain amount of time before I was up and walking again and even a longer time before I was able to run. Losing a good portion of tongue isn't much different, it does take a long time before our speech is where we would like it to be, our taste buds working again, swallowing with ease.....all those things take time and energy! Look forward to chatting with you Lorraine, and keep the questions coming! Sincerely, Donna

Lorraine, I agee with all that has been said above by Donna and Ilene. I went to a plastic surgeon about six months after my initial neck dissection. I was having a terrible time with mobility, particularly when driving. We tried this tape thing, even forgot the name now and it didn't work. Next he shot steriods directly into my scars. The worst scar he did twice and the other one under my chin once. This helped breakdown the scar tissue and was wonderful improvement. By the way this was early 2001. I went to another plastic surgeon and was scheduled to go through plastic surgery November 2001. One day I got my head on straight, accepted the scars and cancelled the surgery. At the same time, I gave up the turtle necks and scrafs also. Of course I still wear them since I went hog wild buying them. I too thought my speech was different, but I went back to public speaking and presentations almost immediately. This was about 12 weeks after my surgery. I found the more I talked the more it came back. Today, almost everyone says I sound the same as before. I however in my head don't think so, but I don't let it stop me. I have trouble when I try to talk to fast or I get tired. So I just have to be aware of that. I did not have RAD, but I still had a very hard time eating, as they took part of my tongue, the bottom of my mouth, part of my jaw bone and four of my teeth on the same side. They rebuilt the bottom of my mouth with skin taken from the radical neck disection site. Now my tongue is sewn down to the bottom of my mouth. Sorry for the tangent, but anyway eating normally came back slowly. Today, I can eat most anything, but when Im out with clients or out for dinner, I'm very selective about what I eat. Like knife and fork food. See my tongue being sewn down doesn't have a whole lot of mobility. Anyway, hope this wasn't overload. Take care Anne.

Thanks to all of you for such quick and sensitive responses. I too have gone overboard with buying the scarfs (which I never wear) and the turtlenecks (which are too hot for Georgia weather). I don't think the scar itself bothers me as much as all the swelling and hardness around the scar from what they say is lymph fluid. I have been told that what i am left with after one year from surgery and rad is what I'll be stuck with. My 1 year aniversary is right around the corner so I guess I'm getting antsy.

My voice I can live with too, but pronouncing certain sounds with no teeth becomes a problem. I have started to wear my top dentures, which improves my pronounciation abilities, but the loss of my bottom teeth and tounge tip creates language that sounds like someone who has gotten her tounge frozen to the freezer wall with brand new false teeth! Another dilema I found was eating with my dentures in is impossible. The dentures cover my feelings in the top of my mouth so I can not feel where the food is because the rest of my mouth is numb. I find that any food I have will just lay on the roof of my mouth. Well, thanks to your encouragement, I won't give up. I'll keep on hanging in there and practicing.

Speaking of steroids, while half way through my radiation, I was about to give up the battle and go home. The Dr. gave me some oral steroids that turned me into Wonder Woman. Has any one else experienced these "happy pills"? I have tried them again but they never gave me the same results.

Thanks again Yall Your support and encouragement is like sunshine on a dark day. Lorraine

Lorrain,
With your wonderful outlook, there is no doubt that you will not only survive, but thrive! Good luck as you continue the journey, and no matter what, keep the great attitude!
Brooke

This is my first time I've written on this oral board but I think Donna is the person I have sent emails to when I first had my surgery Dec.10.2001. Things have been coming along fairly well until I had my pap smear and it came back atypical squamous cells of undetermined signifance I will have another repeated in a few weeks and if it comes back abnormal again I will be sent to a OBGYN. Has this ever happened to any one after being treated for oral cancer? In December I had half my tongue removed because of
squamous cell carcinoma. Even now I sometimes fell like I've been hit by a train! Please write back I would love to here from you

Vicky: So sorry to hear of your new development. When I was first diagnosed with oral cancer, I wanted to be tested for all other type cancers, i.e breast, colon, lung... the whole gambit. The doc said "Dont worry, if oral cancer comes back it will usually come back in the same place (oral or throat). I did, however go have my pap test and mamogram and I am so glad that you did. Please don't think the worse. I will pray for you. Lorraine

Hi Vickie.............Yes, it was me you talked to back when you first had your surgery in December of 2001. I can't remember if you had RAD or Chemo though.

How did your pap smear turn out? Let us know how everything turned out! Look forward to hearing from you again. Sincerely, Donna

My sister had cancer of tonsils that metasticized to one lymph on right side. She had surgery in Feb 2002 to remove one tonsil and some of the lymphnodes. Her ent told her it was highly unlikely that the cancer would come back in the other tonsil. But after reading messages on this board there seems to be a high reaccurrence. Should she get the other tonsil removed?