Hello,

Sorry for making my first post here instead of the introduction forums, but I need some urgent advice please.

I'm from India. My mom has been diagnosed with Stage 2 tongue cancer. She has a tumor on the left side, that's slightly above 2 cm big, and while PET/CT did not indicate lymph node (or other) metastasis, MRI came back with a few enlarged nodes.

The oncologist has suggested removing a 4cm long, 1-2 cm wide part of the tongue and the enlarged nodes. They are also advising a radiation regimen after that. For tongue reconstruction, they have given us a choice of :

(a) wrist flap -- less impact on speech, tongue size, but more chance of rejection (?) and re-surgery. Plus possible complications at the wrist site.
(b) tongue flap -- essentially refolding the tongue I guess? Major impact on speech and tongue length/size, but less postoperative risk.

The doctor is strongly recommending the 2nd option, but I know that being the gregarious type that she is, not being able to speak will absolutely destroy her mentally. I feel like any rejection risk with the first option is worth taking if it is minor enough, considering the depression she'll sink into with second option. Also, in browsing through posts in this forum, I have not seen any cases of rejection with the wrist flap method.

My mom is 60, she has low weight and has type 2 diabetes as well.

What are your suggestions please? Also, is there an option of not doing any reconstruction at all?

Edit: Typo in title

I'm so sorry your mom is going through this awful disease.

I've never heard of a tongue flap before, so I can't comment on that. I have had a glossectomy and had a flap taken from my wrist. I do have a speech impediment but I have had more of my tongue removed than your mom is going to have. Learning to speak again can be challenging. The flap is sewn into the mouth and doesn't move. There is no sensation from it either. It can also take a while to get the strength back in the arm after surgery.

Not having a flap will cause issues for eating and drinking. The tongue goes down deeper than you realise. Once that has been removed then the reconstruction is there to fill the void to prevent food, water, medication etc for falling into the gap. If it's left there it can cause issues such as infections.

Thank you Dizz. From all my "research" so far I also have not come across the tongue flap option, so was a bit surprised when I heard that. Even more so when the doctor recommended that over the seemingly more common wrist flap option. Unfortunately, the doctor is very vague on how much speech impact there will be with this option, and we're out of time for 2nd opinions.

Maybe it is indeed because a relatively smaller part of the tongue is being removed and the wrist flap doesn't work well with the remnant tongue, not sure.

And thank you too for the info about what'd happen if there's no reconstruction. That's one option definitely off the table.

Sorry to hear about your mother. I’ve had 4 partial glossectomies with the first one being in 2005. My cancer was small and on the lateral side of my tongue and I had a recurrence in the same area, so all the surgeries removed a bit more of the same area of my tongue. I never had a flap or any reconstruction. I had some minor issues with speech and eating but doing some “exercises” did help. Another OC survivor I know did have his tongue “folded/reshaped” and is doing fine.

A doctor that is familiar with your mother’s situation would be best to advise on getting a flap or not. It all depends on what part of the tongue is impacted and how much is removed.

Hi Susan, thank you for your response. If you don't mind, can I get more details about this OC survivor you know please? i.e. which stage he was diagnosed at, and how much impact there was on his speech post surgery. I completely understand if this info cannot be shared.

Dear Son of TC Mom

I had a wrist flap in April of 2020. They took about 48% of my tongue. I was stage 4. That's a lot but my speed is good. I have a slight lisp and difficulty with some words. It's minor, everyone understands me even thru a mask. I can manipulate food pretty well. Both speech and food take months. I had 60Gy units of radiation which finished up in July of 2020. I am almost a year out from that and my speech and ability to each spicier foods is still coming back slowly.

If you make it thru the first 2-3 days after the wrist flap surgery, the chances of success increase greatly, after about a week, I was told it's essentially safe. Obviously, there are no guarantees of success, even for me after a year, but wanted to share what I knew.

Best
Nels

Very sorry to hear about your recurrences. As I am trying to decide whether to follow up with radiation after my partial glossectomy I would be curious to know if you had any radiation treatments during any of your treatments? Thanks in advance!

I had 32 rad tx after my first partial glossectomy.

I had another 30 rad tx after my 2ndpartial glossectomy.

To me (and I am no doctor) oral cancer has been aggressive and I didn’t hesitate to have radiation. I am not a fan of “wait and see”. What exactly are they waiting for?

Donna