Tongue Cancer - to get tongue reconstruction or not?

wpleskow · December 2023

Hi Team,

I am at 32 yr old Male and was diagnosed with Squamous Cell Carcinoma, Well Differentiated in the tongue. We think we caught it early -- I went to an ENT in September right after it got suspicious, she said everything looked ok. In November decided what the hell let's get a second opinion and biopsy this thing - turns out its cancer.

Anyways - they will need to remove the tumor and due a neck dissection to confirm lymph-nodes are negative. Everything showed up negative on the PET Scan, so fingers crossed there.

I now need to decide if I want to do the flap reconstruction or not -- my doctor says I am on the fence for needing one or not. I have my first kids due in 30 days (twins yay) and my job is 100% talking based - I am in sales.

Does anyone have any experience with talking well post partial glossectomy or after a tongue reconstruction.

Obviously I am scared shirtless but doing my best manage my emotions it could be worse. Now just trying to pick the correct path - any thought/opinions/experiences is greatly appreciated.

Thanks,

Will

wbcgaruss · December 2023

Hello Will and welcome to the CSN H&N discussion board

I had tongue cancer and had a small spot removed but never to the extent you are facing so I can't give you any advice from a personal stance.

What I usually do is give a couple of links out in this case pointing you to some amazing other personal stories and a link to a search from this site for researching forum postings and urging you to word some searches also on your own that may provide better results as per your situation.

First I would urge you to check out the Superthread at the top of the H&N page. It is loaded with info and links and you may find some help there...

https://csn.cancer.org/discussion/261072/superthread-read-only-contributed-by-sweetblood22#latest

Here is a link to a search on this site with the words "tongue flap reconstruction or not"...There are about 10 threads to click on and check out with a next button at the bottom for even more...

https://csn.cancer.org/search?domain=all_content&query=tongue%20flap%20reconstruction%20or%20not&scope=site&source=community

Here are two postings that may offer some insight Jeannie Hopper and Kate Brown...

Jeannie Hopper...

https://www.mdanderson.org/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

https://www.mdanderson.org/cancerwise/oral-cancer-survivor-s-advice-to-other-patients---focus-on-today.h00-159303045.html

Kate Brown...

https://www.ucsfhealth.org/patient-stories/kate-brown

https://www.sfexaminer.com/culture/san-francisco-resident-rebounds-from-tongue-cancer/article_63801389-5b5e-52f7-b441-ca927b1563ed.html

Our motto here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

wpleskow · December 2023

https://csn.cancer.org/discussion/comment/1711349#Comment_1711349

Hi Russ,

Thanks for your follow up - figured I’d let you know where I am at. Everything was removed on Wednesday with clean margins. Lymph’s looked good under the scope but getting confirmed at the lab.

good news they ended up not needing flap but instead used an integra graft. That means I was only in the hospital 2 days and am now back home.

the neck dissection did a number on my neck but I’ll be ok.

happy holidays Russ.

best,

will

wbcgaruss · December 2023

Hey, Will, thanks for the follow up. It sounds like everything is going well for you and your didn't need the flap and got home sooner, great.

Hopefully no bad lymph nodes.

You will be surprised how your neck will heal you will most likely not notice it.

Wishing You The Best

Take Care, God Bless

Russ

Tongue Cancer - to get tongue reconstruction or not?

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