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This is my first time posting in here. I was diagnosed with tongue cancer back in late June.
im 36 years old, never smoked, dont chew tobacco and am not a heavy drinker. I had surgery on July 9th. The doctor took about 1/4 of tongue out, maybe smaller, didnt need a graft. also, he did a neck dissection from my ear to middle of my jaw. They took out 8 lymph nodes which turned out negative. The doctor released from the hospital only 2 days after surgery. We'll i had to go back to hospital cause i had an abcess in my neck, a pretty bad abcess. I was in hospital an extra 5 days while draining it. After being released from hospital, i had to go to the clinic to get more drainage with the needle (twice). We'll its been a tough recovery. these are the symptoms i have had.
1. VEry tight neck, feels like someone choking me and i can eat ok but still feels constricted
2. Still have numbness on my neck and part of my cheek and when i laugh my lip is crooked so i look kind of wierd laughing. right now im in my 10 week since surgery.
3. When i do strenous excercise or working, it feels like my tongue gets more numb and harder to talk and side of neck feels puffier, dont know why?
4. Sometimes i get the feeling they(doctor) did
not get it all. It sometimes feels like i have another lump on my tongue.
5. Theres a small bump under my tongue, maybe size of a beanie baby bean in my tongue but not visible on the outside (Doctor says its probably scar tissue?)
Has anyone dealt with this? How long before i can some feeling in my neck and part of cheek?
Swelling seems to go up and down, mostly up when im working or excercising.
ive been doing bio oil thing and that works a ilttle bit and neck excercises. i have never done the lymphatic massage, has anyone done this?
Sometimes i get the feeling my tooth is abcessed and the part around my cheek is still
numb adjacent to that tooth. doctor looked at it
and said there was no abcess.
I just want to say thanks to all for reading this and responding and hopefully other readers
can relate to what im talking about
These things all improve with time, you'll find lots here have the problems you describe and time really is the greatest healer! How much time - who can say?! We all repair at different speeds.
You new tongue is stregnthening and learning how to deal with its new state. & the puffyness - i'd expect wil be because your ymph gand were removed the fuid isn't draining as freey as before (thats speculation obviously get it checked to be sure).
When you finnish your treatment, it can be hard to move on and accept your cancer free as that fear is so fresh.
For a good yr after treatment i doubted whether it was really gone and out of my life. & every small thing had me worrying. Even now when i notice something different i worry a itte. But 2 years out i can say i don't think about it EVERY day. & i can let things go easier than before.
If this bean shaped lump is reay getting to you, then persevere in getting your mind put at ease by your doctor.
Honestly, it is perfecty normal to be paranoid and sceptical and scared.
But the further you get from treatment the easier it wil be!
-~*Great spirits have always encountered violent opposition from mediocre minds*~-
Hi Jerry, cant help much with your symptoms as I had different cancer and treatment but Chelle's right. The paranoia does get easier with time but it can be a bit of a slow process. Hang in there and you'll start picking up as your symptoms ease. Hagg.
16 years and still kicking it. Never give up your fight.
Welcome to the club no one wants to join.
I have the same background as you, and had pretty much the same operation in February '05; the only difference is that I had a "free flap resection". My doctors took out 50 lymph nodes (like yours, all negative. yay!), but I was kept inpatient for a week--initially it was supposed to be a stay of 10 days to 2 weeks. Did they have you on any kind of antibiotic post-op? Did they treat the abcesses with anything? I had drainage "grenades" sewn into my chest for the first few days; they really helped prevent swelling.
Have they determined whether you need rt or chemo?
Even though I'm more than three years out, I still experience some of the strange side effects that you have. My neck often feels tight--especially when I'm cold. You might want to try yoga or other stretching exercises to alleviate this. But, these are early days.
Yes, I still have numbness--nerves don't ususally regenerate well, if at all. Heck, I'm still getting a strange sensation on my flap (the left side of my tongue; it started out life as my right forearm) when I touch the left side of my lower lip.
Scar tissue can feel lumpy, but you might want to ask your docs to do a biopsy. Yeah, they hurt like a son of a mother, but it could put your mind at ease. If there's a bump under your tongue, it's definitely something you should discuss with your doctor.
Please let us know how things turn out. I think you'll find that this group of people are fantastically helpful and tremendously supportive.
Howdilly doodilly, survivorinos!
Thanks julia, hagg and michelle for responding and giving me your explanations.
Ive discussed the bump (nod) with the doctor
about 3 weeks ago, he looked at it but didnt
think it was any thing to worry about. he says
its scar tissue. I see him again next Friday.
Sometimes it just feels like a lump on the tongue but when i check i dont see anything.
Maybe its the way the tongue is shaped after
surgery and the indentation from the stitches.
I didnt need any rad or chemo. I had blood
drawin last week for white cell and red cell count and thyroid check and all came back normal.
It still feels wierd when i do excercises or
lift weights. Feels like it gets bigger but like chelle said it is strenthening. I believe
the fluid is having a hard time draining.
Can that fluid become infected over time??
When i had the abcess, they had to take the metal staples out and put in a drainage tube in
my neck. Can't understand why they didnt do that
right away. Anyway the abcess was pretty bad and had a tough time draining even with the tube in. I was on antibiotics when they sent me home the first time but they didnt work at all. I heard that the antibiotic cant work its
way in the neck where lymph nodes removed because theres no blood flow. anyway i was in
hospital for 5 more days getting antibiotics
inttravenously. Then after getting released
from hospital, had to go to clinic next day to get drained by the doctors needle. 3 weeks after
that i started feeling a bit better but scared.
thanks again for responding,
I had my tongue surgery on Sept 27, 2008... I go back to Moffitt for a consiltation, better pain management and stitches removed with the bolster that has been holding the graft in place.. 4 1/2 years ago, I had this done and I can tell you, the end of my tongue was still numb when I had this second surgery and now the end of my tongue is burning.. Why? Do not know but hope for answers today.. I only had the surgery inside my mouth.. 7 days after the surgery, I developed a bacteria infection in a gland, so they tell me as they did not see me, just sent me out for antibiotic and more pain meds which were not as strong and I had a very bad weekend!
Actually my first goround with this were white patches on the tongue and I just had them taken off by oral surgeon locally, they were pre-cancerous, so they said.. This was back in the early 90's, I cannot remember the date and they didnt have my records from that far back... But it was slowly coming back.. I thought I had some scar tissue left behind and was too afraid to to back as the pain was unreal.. But March of 2004, I had to go back and got a biopsy and was sent off to Moffitt in Tampa, FL for surgery.. They found a few cancer cells but said they got it all...
In May of 2007, I went to local oral surgeon to get a few rough patches removed and was told to watch this... I did...
My mother 88, got very ill and was in the hospital this last march when I notcied smooth patch coming on.. So much was going on, I didnt bother with it as my husband died in nursing home April 21 and then my Mother died april 28 and I was a mess... I did make appt with Moffitt hospital in late May as it was getting bad fast... My Dad was putting a lot of stress on me too being in an asst living and losing his wife of 62 years.... So, here I am now... Still in pain after almost two weeks.. Wondering what will happen next... Scared it will come back... I am almost 60 and just don't feel much like spending the next 20 years fighting this...
I was probably 43 when this started, very ignorant of the situation... Let you know what happens today at my 3pm appt...
I hope the carer has a carer. You sure have been doing it tough and all the while having to 'be there' for others. I can't imagine how you are coping.
Please be sure you have a support group, not just to help you through the stress of what might be happening in your mouth, but with everything else that is going on around you. A cancer battle (or the possibility of one)is tough enough, you must feel overwhelmed.
I feel very deeply for your loss and will be sending you love and every positive vibe I can rustle up. Please let us know how you progress.
Love from Down Under
Hello Deborah 51... Thank YOU so much!! Your kind words have brought tears to my eyes and chills... Bless your heart... I am doing wonderful... Yesterday my surgeon says he is "sure" he got it all but he thought so 4 1/2 years ago too and since he had to cut into the "spit" gland and that it what swelled up so bad, he doesnt want to take a chance that one tiny little cell could have gotten in the gland and wants me to have 7 weeks of radiation.. I'm actually happy about that as I do not want to go through this again... If he had said I was not going to need anything, I would have insisted... And, He won't let me have it done here in my city... I have to do a little traveling to get the best... Love and Hugs, Patty in Florida
Sorry to hear about your losses. I cant imagine
what your going through. The stress of it all takes its toll on the mind and body. I certaintly hope your doctors got all the cancer out. Theres nothing worse then having a tongue slashed so many times. The infection i had was an abcess and i had to be inthe hospital. Im surprised they didnt send you back into the hospital for IV antibiotics and drainage.
You mentioned something about a spit gland. Where is that located? Did you have to get a neck dissection too?
Youve had alot of deal with this year and im sure that was realy tough! but i believe this radiation will be a piece of cake for you compared to what youve had to go through earlier this year. You will get through this and you will be a stronger person then ever.
Keep us informed patty. well be praying for you
Everything is going good so far, went to doctor
last week and he said everything is going
well. He did recommend me to see a lymphadema
massage therapist. they are supposed to
move fluid out of area and into different channels. Has anyone had this done?
Did it work? What all did they do?
Im also getting this twitch in back/side of my neck,
not sure what it is, it doesnt hurt, just twitches once in awhile. anyone get that symptom?
Hi Jerry. I didn't get those symptoms bt I'm glad it's going well. Hagg.
16 years and still kicking it. Never give up your fight.
hi to all,
WE'll its been 6 months now and i still have
numbness in under my chin and part of neck.
Swelling got worse over xmas, im thinking its
lymphadema swelling. its very tight now and hard under my chin close to my trachea. i did not get a chance to get laymphadema massage over the last 3 weeks due to my job being so busy. being outside in 5 degree temp doesn't help much either. So i need to go back to doctor to make sure its not infected and also get back to the therapapists. Im just wondering, how long does this last? and why aren't doctors giving us much post surgery sysmptom information on this type of surgery.
There has to be better technology out there then ripping our lymph nodes out to check them for cancer because this swelling and numbness never seems to go away. Does anyone know why they cant take biopsy's of our lymph nodes while they are still in our neck? i just feel oral cancer research has a long way to go.
thanks for reading
I'm nearly 4 years out and I still have numbness on the left side of my neck, the "York Peppermint Pattie" sensation on my flap when I touch the left side of my lower lip (a cool, tingly sensation), and the feeling that there's a cold, wet silver dollar on my right arm beside the scar whence my flap came. Yes, they're annoying but--excuse me for sounding like Pollyanna--I'm extremely happy to be able to complain about them. The numbness is what it is, unfortunately; sometimes disrupted nerves heal, sometimes they don't.
I agree with you wholeheartedly that oral cancer research has a long way to go. Until a significant-enough celebrity develops some form of oral cancer (think of Betty Ford and the subsequent advances in the treatment of and research on breast cancer) it's simply not going to happen. Besides, this group of cancers is perceived by those mercifully unfamiliar with them to be behavior related (tobacco use, heavy alcohol consumption). The first question
I'm asked when I introduce myself as a tongue cancer survivor is about smoking or drinking. I don't smoke or use any other form of tobacco (nor do I smoke anything else) and I rarely imbibe (I think I've had 4 drinks in 4 years)
Your doctor would probably be better able to answer the questions you have about lymph node removal.
Howdilly doodilly, survivorinos!
Its been awhile since ive last responded on here. Hope everyone is doing better. I'm doing fine. I keep seeing my ENT every month and he checks my tongue and all around and says the tongue looks better but i still feel the scar tissue rubbing against my tooth in the back of my mouth on the right side and i always say to myself, "is it cancer" again. But the doctor insists everything looks good and that its just scar tissue. I still feel the same whenever i excercise, my tongue feels biggger and its tougher to talk normal. Is this normal?
Also, i had parital neck dissection on right side and my lower right lip does not move very much and i still have some numbness even 8 months after surgery. Is that normal?
When should i get a pet scan on my neck and head? At first my doctor mentioned around the 8th month but now he says the 12th month which would be July.
Ive had numerous little things that ive gone in to get checked out. I was having bad stomach pains and could not breathe. i had an endoscopy done and said it was gastritis so the doc put me on aciphex.
Then i came down with flu that turned it bronchitus, i could not exhale. i had x-rays done and showed no pneumonia or cancer but did
show a minimally enlarged heart. So after the
bronchitus went away and i had a cat scan done on my chest to actually find out about the heart.We'll, everything was fine just some high
cholesterol from a blood test done previously.
Anyway, thats whats been going on lately. EVery little problem i get it checked right away.
One more thing, ive noticed that at night i have been bitng my tongue on the right side, what can i do to stop this?
Thanks again for responding.
Its about 18 months since my op. I still find that my tongue seems to feel bigger whenever I exercise - strangely I have never heard anyone else mention it! I also wake up some mornings and find I am biting the back of my tongue on the side where I had my operation. I have tended to think of these as minor irritations and have not been too concerned about them. May mention them to the doctor next time I go for my two-monthly check-up.
We don't tend to get offered PET scans on the NHS unless there are more symptoms to be checked out, so I don't know what the optimum time would be.
Glad to hear you are doing well.