Dodie posted on 23 September 2009 06:20 PM

quote:

Hi Joel,
You have an interesting story,and I now I understand why my surgeon is recomending radiation therapt,becauseh says the mri ect.tests do not always show the cancer cells lurking.I also had 40% ofmy tongue removed and h
havet "flap" frm my left arm.it was stage 2 and
thank GOD it didn hit my lymph glnds,but I am having such a hardtime trying o eat.they did'nt tell me all the gruesome details ofwhat my life would be like afterwards! will I ever bite into a cheesburger again? i was not a smoker or drinker...go figure...I need someone outthere to give me some insight or share their
experiences!!!

Note:this thread has been created for Dodie

Moved Reply:

Hi Joel,
You have an interesting story,and I now I understand why my surgeon is recomending radiation therapt,becauseh says the mri ect.tests do not always show the cancer cells lurking.I also had 40% ofmy tongue removed and h
havet "flap" frm my left arm.it was stage 2 and
thank GOD it didn hit my lymph glnds,but I am having such a hardtime trying o eat.they did'nt tell me all the gruesome details ofwhat my life would be like afterwards! will I ever bite into a cheesburger again? i was not a smoker or drinker...go figure...I need someone outthere to give me some insight or share their
experiences!!!

Moved Reply:

Hi Dodie

Eating will be difficult for a while, but it will get better. I was on an NG tube for a few weeks, and after it was removed I was told to work my way up from liquids to normal food over time. Be patient--you're only two months post op.

I had about the same amount of tongue removed (what an odd thing to say) with no lymph involvement, and a flap and left-side mouth floor were built from my left arm. So far, everything is working well, with nothing further needed--no radiation, no chemo.

I hope everything turns out well for you.

Julia

Moved Reply:

Hi Julia
I appreciate your reply! I hve'nt had much luck
with these forums.I had my surgry on aug.14th
I first had symptoms way back on may 1st woke
up with a big canker on my right sideof my tongue after 2 weeks ofno relief I went to my
Pcp,ad upon exam he said "no worry it's noting
more ta a mean canker and they can sometms last
for months.Ifelt relieved,but it got worse so
on the 4t of july when was miserable,my husband
vowed to gtme t an er asap...andt rest is history.I thank GOD ABOVE that itwas stage 2,but as I readalongI disovred it does'nt really
matter all that much...I went into this fighting
and had a very strong family behind me.I was one of the few patients to g home without that awful feeding tube..and now I am able to eat puddings,softboile eggs,my frustration is I
am dying to Bite into something,itis so dead
inside my mouth.yestrday i began speech therapy
and today it seem s my tongue is swollen,is tis to b expected since i was moving it around so much?
thaks for your good wishes
dodie

Hi, Dodie,

I am more or less undergoing the same processes... I had 30% of my tongue removed, no flap. My limphatic nodes were clean, so I am quite happy. The surgeon has recommended no radiation. However, the cicatrization pocess is low, and eating has become a painful process. The secondary advantage: I have lost 8 pounds!
I am full of questions: which is the normal term for a tongue to heal? When will I be able to eat more or less normally (a beefsteack, some lettuce....). Would it be advisable to consult an oncologist, or should I remain seeing my surgeon? Would it be convenient to have radiation? My surgeon does not provide much information....
Have a nice weekend

Shoshana

Hi Shoshona

The best answer I can give about how it will take for your tongue to heal is that it will take as long as it will take. (Yeah, and it depends on what your definition of "is" is.) It's equally hard to say when you'll be able to go back to "big people" food again (it took me a few weeks to graduate from nothing but liquids to stuff that had to be chewed.

I didn't have radiation, and from what I understand even if I needed it, I don't think I'd want it. You'd really be best talking with your doctors about that. I'm just puzzled by whether or not it would be "convenient".

Between onset and the time I went back to normal eating, I lost a lot of weight. Unfortunately it has come back--and each pound lost brought a friend with it.

Sorry I couldn't give you a better answer.

Julia