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I too while not in my 20's feel very young to have this disease. I smoked briefly in college but really wouldn't consider myself a former smoker per se. Who knows how I got this disease - just bad luck I guess.
March 2nd I had a total glossectomy and reconstructive tongue created from my forearm and groin tissue. The surgery is considered pretty extreme but due to the location of my tumor they couldn't save my tongue unfortunately. I'm back home from the hospital and I'm progressing nicely. My speech is very garbled but my hsband can understand me and my docotor's and speech pathologist all say a prothetic will help with most letters and that eventually I'll be able to eat most things. It is just going to take lots of time, patience and practice.
I still have to get through rdiation and chemo over the next 2 months too which I'm not excited about but it couldn't be worse than recovering from the surgery.
I am very scared for the future and can't imagine how I'll relearn to eat and speak at socially functional levels. The Drs. thought that the surgery was absolutely nexccesary for a cure or they wouldn't have done it. What is done is done- I am happy that I will have a chance to live and and to have a very high chance of living disease free for the rest of my life too.
I will work my hardest to regain most of what I've lost in speech/eating/drinking. It isn't easy to accept this new existance that is for sure! Seems like most people only have to have a partial glossectomy- so I'm feeling a little overwhelmed with my new challenges.
Anyway-- I am glad to have found a board with some younger tongue cancer patients.
Appreciate any words of encouragement or similar experiences.
Welcome to the board. You will soon be a given a warm welcome from the others. You are doing well. It is a long race and things do get better but are never quite the same after treatment. Just focus on getting through the chemo and radiotherapy for now. You will find ways of adjusting as your friends here will advise you.
Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.
"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
You'll find this site really helpful.
Feel free to post any questions or worries. The people on this site really do help and support. Remember that even when you're in the thick of it and finding things hard things really do improve with time.
Good luck with the treatment to come!
-~*Great spirits have always encountered violent opposition from mediocre minds*~-
Hi there Kate,
Just wanted to say hello and let you know that I have been through some of what you are going through and there is light at the end of the tunnel. I am 27, 26 when I was diagnosed with tongue cancer last July. I only had a partial glossectomy and I can't pretend to know what it is like to have a total, but I have heard stories from my speech therapist about people who have had their whole tongue removed and who have gone on to eat normally again and recover their speech. Patience is definitely the key to getting through the next few months. There is no doubt it is tough, and I'm afraid to say I found getting over the radio and chemotherapy more difficult than getting over surgery, but I am now eating almost normally and my speech is improving all the time. I couldn't imagine being able to eat out again or go out socially and be understood by new people, but I am now doing both, so please keep going and remember things will get better. It is really important not to look too far ahead. Just take one day at a time at the moment, otherwise you risk going a bit crazy! All the best.
I to went through 3 operations in 4 weeks plus RT
I was 48 at the time.
and completed a long course with my speech therapist,and started off on baby foods.
It does get better ,i returned to work after 5.5 Months and do presentations hold meetings etc
we never stopped going out socialy for meals and drinks (it did take a little while to i enjoyed a beer)
We have taken holidays (we were in San Fransisco in2003) and travel to San Diego every year...
You have the spirt to do what ever you want to do,so go for it girl
Keep your spirits up
Dave and Sue
Hi Susana- Thanks so much for your kind words of encouragement. I definitely needed inspirational stories- That is fantastic about the total glossectomy patients that have recovered eating and speaking somewhat normally again. I'm scared about Radiation and Chemo too- Hoping I won't get too knocked out by it- but it might be rough. I've got my comfy clothes and movies lined up for that time period. Its kind of hard because I'm actually starting to feel so much better now and so then I'll be backsliding- but its the only way to ensure theses evil cancer cells have the least amount of chance of coming back.
I certainly only want to go through this hellishness once if I can help it! Yes one day at time- and just build off the small victories-- I get so impatient and frustrated at times though-- which is somewhat good because it will propell me forward. I'm going to figure out how I can eat like a semi-normal person again. I'm too young not to be able to go to dinner with friends. It might take a year or so but I am just determined not to let this awful disease dictate how my lifestyle will be.
Thanks again so much for your words of encouragement S!
Hi Kate, good luck with the rest of you treatment. I'm still here after 10 years and even though things are never quite the same life can still be very good. It's sounds a bit corny but I find that the sky does look bluer and the birds do sound better. It has made me appreciate the simpler things and be more content with my life. All the best.
16 years and still kicking it. Never give up your fight.
Hi Miss Kate!
I'm stumbled upon this site & read your story. We were about the same age @ our diagnosis I was 34 and now 35. I was suppose to had a hemi-glossectomy (left-side), a radical neck dissection (left-side) mandilectomby..may be misspelled. However, my surgery ended up performing a total glossectomy, left & right radical dissection and God only knows what else. The surgery has been the hardest that, I have ever encountered in my life.
I found hope & inspiration in reading your story. I would like to know you are doing 4 1/2 years, after your surgery. Feel free to post on here or email me.
Hello...my name is John Green. I just had my entire tongue removed on Feb 28th at Beth Israel Medical Center in New York, by Dr Mark Urken. I am healing nicely but the suffering is something I didn't see coming! My face has gone down considerably, and they put a tube in my stomach and a bunch of Glucerna 1.2 Cal to use 3 times a day to keep me alive. I have what is called a "flap" in the back of my mouth and I am waiting to be shown how to swallow, talk & drink again this Monday with a nutritionist. Please let me know how you are coping...I am trying my best...trying not to be orverwhelmed.
Hello John Green...Wow,I know that feeling all to well.I experienced this awful fate,back on 11/8/2010.Man,life has really been challenging and didn't have the rehab support at the time of surgery.I am just now getting the support & formal rehab.However,life is still challenging with swallowing,eating & talking,but I am making progress though.I hope and pray all is going well with you.Please free to contact me with a update.I look forward to hearing from you soon.God speed..
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