I've read many of your comments on this site and I'm finding suddenly that I'm not the only one. I've had two surgeries for tongue cancer and now wrestling with the notion of a third surgery that will require a flap (I read that some in this group have managed to find the humor in it).... looking forward to getting past my current mood about the thought of the flap and also finding the humor....just not there yet.

So any additional reasons the "flap" and surgery was taken over chemo? Or is it the thought in this group that Oral tongue is a surgery first thing? I've only found one supportive Dr saying he could support the chemo route, but in general all others say surgery, get the flap and move on to healing.

Would appreciate feedback from the veterans.

FYI - been off an on with this cancer since Jul 2003, first surgery Jan 2006, then Jan 2008 and now this occurence.

thanks for your comments.

pembo

Welcome to the site Pembo and thanks for your encourging words - I just need to be told what I am going through is "normal".

Sorry I can't advise you on the flap.

Love Chloex

Hi Pembo,dont know much about the flap thing but welcome to the site. Hagg.

Hi Pembo

I am decidedly pro-flap!

I was diagnosed with Stage 2 N0M0 of the tongue in January 2005; surgery was the next month. I had a hemiglossectomy and free flap resection using part of my right forearm. Radiation and chemo were only presented as remote possibilities because my particular cancer was still pretty well encapsulated. My neck dissection showed that it hadn't spread, and the pathologist's report even said that radiation and chemo were "not indicated." Surgery was the only treatment I've had, and there are two distinct flaps. One is "to the floor", which is what it sounds like--the rebuilt tongue is attached to the floor of your mouth, making speaking and--presumably--eating more difficult. The other is "to the roof"--like my beloved Flappy--it has movement more like the natural tongue, and I've found talking to be almost unchanged. With the exception of taste, eating is pretty much as it was before.

I couldn't be more pleased with the way it's turned out.

However you decide, I hope it turns out for the best!

Julia

This message has been edited. Last edited by: Julia,

thanks Julia, you are the first I've spoken/contacted that has had this experience.. so very thankful for your candid report...

thank you , thank you, thank you.

bob

Hello Bob!.... Welcome! My hubby was diagnosed with base of tongue cancer in Nov '07, went through chemo/radiation, but no surgery so I have little to offer in that regard,but am interested that you are in Florida as we are! Where are you?

Hi Kickersmom,... I'm a kickersdad!!!

located in Brandon, Fl and use Moffitt Cancer center as my provider.

hope your hubby is getting along ok after his treatments...

Go Bucs!!

bob

Small world! We are right across the street at the VA for our treatment! ~~~ Kickersdad... Take care!
Nancy

Hi Bob

One thing I forgot to ask yesterday--how much of your tongue are they going to replace? (How often do you ask a question like that?) My flap is on the left side, from tip to first molar. They also replaced the floor of my mouth on the left side. The amount of tongue that needs to be replaced can really make a difference in how well the flap functions.

One thing I've found surprising, nearly three and a half years later, is that the nerves seem to get confused. A week or so, I bit the back end of my flap--not all that hard, either--and the tip felt thick and tingly.

Julia

hmmmmm..... good question....how much!?!? is the question....the reply is always "until they get clean margins"... so viewing the PET of two days ago it can be 30 -40 % of the front as it looks really "hot" the brightest colors you can imagine.

No tumor in March via PET to about 1.5 inch this month also PET. The section that falls mainly in the front half of the tongue.... so I suspect we'll have different experiences (I won't have floor of mouth), but I'm hopeful that I'll be chewing like you in no time....

where there is breath there is hope! I used to say that more casually....but now have more emotional connection to it.. :-)

thanks for checking in... I told me dentist about the "tongue hair cut" I read here (which is hilarious).... he said he'd include a "haircut with each visit" :-)

bob (pembo)

Hi Bob (Pembo),
I have been reading all your posts and am really glad to see the positive attitude added with humor, you have. I am sure you will make a lot of people laugh and make them feel lighter when they smile at your sense of humor, through all that you are going through.
Take care,
Ananth