Hi y'all! I'm Shelby, 19 years old and was diagnosed with stage 2 or 3 tongue cancer. I'm a nursing student at UK (well was I guess, taking the semester off for treatment). They don't know the stage yet because I'm doing my PET scan tomorrow. on the 27th I have a partial glossectomy and neck dissection. I'm really nervous I won't be able to eat normally ever again. They're taking little over half my tongue and replacing it with tissue from my arm and then skin grafting my arm. How long were y'all in the hospital for after surgery and how bad was it?
Hi Shelby! So nice to see your positive attitude. I also had tongue cancer (its been one year) and my life is pretty normal right now.
I didnt had the tongue replacement, just the removal of about 2x3 cm with primmary closure.
The thing that bothered me a lot was the NG tube 1 week after surgery. The neck dissection for me was a piece of cake.
Hope everything runs ok and keep us informed!
Shelby,
I had almost the identical procedure. I was in hospital for 9 days, returned to work 3 weeks after surgery.
There was surprisingly little pain considering they cut open my neck, arm and did a skin graft from my thigh.
My speech is almost back to normal and I was eating solid food within a month of the surgery date.
The NG tube sucks, but is necessary, as is the tracheostomy tube. It's a good day when you get that out! The trach was in for 7 days, and by day 7, I had all 4 drains out, and only had the doppler wires left (they are connected to the "new" tongue to listen to the blood flow).
I was worn out, but all in all, not too bad.
Keep us posted and good luck with the surgery!
I have no experience with a glossectomy, but good luck with everything, Shelby.
Shelby, welcome to OCF! So sorry to see you are going thru so much at such a young age! Being young will help you with being able to recover much quicker. Your functioning will be different but you can overcome the new hurdles. The quicker you are healed you can begin working with a speech pathologist to help you regain your speech and eating.
Best wishes with everything!
Shelby,
Where are you located and where are you being treated?
Shelby, sorry to hear you're having to go through this at such a young age. But you sound strong in spirit and your youth will be a big plus in the recovery process. Plenty of folks here have been through what you're about to face and come through it very well.
Please don't hesitate to ask questions, PM people and just rant if you want to. You're part of our family now.
My thoughts are with you.
That sounds like you are doing great! I was expecting a longer time line but that is very helpful! Are the drains holes in the incision on your neck? or your tongue? and are the scars bad?
sorry for all the questions!
Thank you
Hey Shelby
Love your attitude, you are so young and this is going to help you. Keep us posted on your progress. I am heading to week 3 of chemo/radiation and keeping the same positive attitude. Just like you, never smoked, never chewed dip and played sports my whole life. Don't ever ask "Why me?". Let's just kick this Cancer's butt! 5-10 years from now we'll look back and be proud of ourselves for fighting it. Hang in there. Good Luck with everything and above all enjoy the heck out of Christmas!
Ron
Hi Shelby,
My husband just got home from the hospital and he had a partial glossectomy ( they took 75%) of his tiongue, neck disection, and partial pharyngectomy. He's doing okay. He looked in the mirror for the first time today when we got home. He loooks like a mac truck smacked him the face and neck but he's alive and he will get well again. The incision is healing nicely. He won't even have a scar. Anyway, just wanted to let you know that it's doable. It's tough but it's doable. Good Luck on the 27th.
Shelby,
The drains were tubes from my neck to deal with some of the swelling (there was a lot), but I couldn't see where they conneted (I assume the incision sites). My range of motion was very limited and I couldn't really tilt my head back to see. Also 2 were out before I was even getting out of bed!
No drains on the tongue, and it was very swollen after the surgery. It is almost down to normal size now.
The scars aren't bad. They start behind my ear, about halfway up, and extend down to my collarbone on both sides, and then right across my throat, but they have faded dramatically since the surgery so that parts are hardly visible. I expect they will all fade to a thin white line. The trach hole scar is barely visible to me, even though I know where it was.
When the scars were really noticable, I told people I was attacked by a bear. You should people's faces when I tell that one, it was a riot!
Keep us posted. I know the waiting is stressful, so if you need to talk, we're here.
Hi - sorry I'm late jumping In - Shelby you're very young... Sorry you're going through this. The surgery is not too bad. I had the same surgery two years ago this coming February - I too looked i'd gone a few rounds with a truck but by day 10 I was much better. The scarring has healed nicely, my tongue is almost nomal, and speech after this time 22 months post op - 19 mos post treatment - is good. Taste has come back almost completely. (sweet is still illusive) but that's radiation fall out not because of surgery. Hope everything goes well for you on the 27th. You will be surprised how little pain you'll have. You'll likely be numb particularly where they dissected you. I was off pain meds at day two but I have a high pain tolerance. How did your scan go?
The drains are usually from the neck dissection and there may be two. You'll also likely have a trache as well. - bring a notepad and pen the trache is generally not a fenestrated trache so you can't communicate for a few days. Re scars - that depends on your physican. I do have a noticeable but fairly small trache scar, and my wrist healed nicely and my neck scar is almost invisible. My dr. Did invisible stitching and I asked him to split my jaw only if absolutely necessary - he didn't have to but swore he lost a few pounds because of it!
Hugs and take care.
Shelby, I also have pics of the week after surgery and more recent on my main page if you scroll on the time line to october 2012.
Haha! I love the bear attack! I'm gonna have to steal that one from you!
Thank you for your help!
Oooo splitting the jaw... Ya I wouldn't want that either! haha Love the name of your album by the way!
The scan was good
They said it showed "abnormal activities" in my lymph nodes and will proceed with the planned surgery. At least it hasn't spread anywhere else (Thank God!) But I'm assuming the "abnormal activities" means cancer, but I guess I won't know for sure till the actual surgery. One step at a time I guess!
Yes one step at a time... Enjoy your food now and bulk up. Do ask how many nodes lit up. And the differentiation (differentiation from path not scan). I think with nodal involvement they should recommend rads and chemo particularly because of your age. Hugs!!!