My tumor board was held today. Due to some close margins after my first tongue resection, they recommended that I have a second resection with a tissue graft from my thigh. The surgeon said that the graft would keep my tongue from being fused to the floor of my mouth. I am really nervous about this procedure. I'm not sure exactly what bothers me about it. I would love to hear from anyone who has had a similar operation. I'm wondering what the recovery is like (I will be having a bilateral neck dissection at the same time) and if it always feels like there is something foreign in the mouth.

I also owe all of the members who encouraged me to get a second opinion at a CCC a big thank you. Not only did the pathologists determine that the margins from my original tongue resection were smaller than reported, they also found that there was no perineural invasion (the original pathology report said there was). It scares me to think that I could have gone forward with a treatment plan that was based on faulty information. I am so grateful for this forum and that people took the time to nudge me in the right direction.

Good for you. All good news and thrilled to hear that they are taking the additional precautions. One just can't be too careful with this disease.

I'm not sure about your resection or whether my info will be helpful but here goes. When I had my first surgery my thigh was used rather than my arm to create the free flap. Then, on my second surgery, they used the skin from my right thigh to create the graft to replace the part of the tongue they removed. I had no trouble with either donor site and all graphs took well. Healing of the graph site was an interesting process as it was open to the air and basically healed through a "cheesecloth" like substance. Was interesting and for those who love to pick at things it was a wonderful way to pass the time!

You will get used to all the funny feelings in your mouth. Right after my 2nd surgery I swore they had left enough surgical string in their to braid, but eventually it got trimmed and as things healed we moved on.

Good for you - we look forward to hearing more from you as your next treatment takes place.

Donna

Thanks, Donna. It's nice to hear that you didn't have trouble with your grafts. Hopefully mine will heal up nicely, too. It seems so odd to have part of my leg in my mouth. Last night I dreamed that I had to shave my tongue when I was shaving my legs! The doctor said it will help a lot with the quality of my speech, so all in all I think it's going to end up being a very good thing.

Actually depending on how hairy you are you may have hair - not joking - did you ask them why not the wrist? It's an ugly scar but apparently because it's the thinnest skin on the human body it does well as a graft - and there's no hair on the inside of your wrist traditionally. The only down side is they shave a few layers from your thigh to cover he wrist so two areas to heal - mine was from my wrist and so far so good.

It's not a bad operation - does take a but to recover. I am so glad you are having a bilateral done too - good luck!

My left leg corresponds to the left side of my tongue free flap, and my right leg corresponds to the right side graft. I have, in their honour - renamed the left "2004" and the right "2007".

I don't/didn't have alot of hair on the upper parts of my thighs which is where they took the tissue/grafts from so I was lucky there. Also, being larger than the average bear gave them choices!

I'm sure it will go well.

Hugs

Donna

Oh goodness! Well, I guess I can live with a hairy tongue. It sounds like it's well worth it to preserve the mobility. Cheryl - I'm not sure why they chose the thigh and not the wrist. I will ask my surgeon when I call him today.

I am a little concerned still, though. I saw my oral medicine specialist at the cancer center yesterday. Of all my doctors, he is the one I trust the most and feel the most comfortable talking to. We had a long talk about what was said at the tumor board and he mentioned that the downside of the graft was that it would cover the area where my cancer would be most likely to recur (I've had problems in the same area for almost 12 years, he thinks it's a genetic issue). He said they would be following me closely and using MRI, etc. to monitor me so they would be able to catch a tumor even if they couldn't see it. I'm not too sure about that. My original tumor wasn't visible on my MRI and it was 15 mm long and 4.5 mm in depth. I would hate to have a hidden recurrence and wait until it was really big for it to show up on scans. I know these are questions for my surgeon and I plan to call him today. Just trying to get my thoughts straight and make sure I ask all the right questions.

Tracy,
I am so impressed with you! You show a lot of courage and maturity in handling the hand you have been dealt, and you are an eloquent writer besides. I am so glad you are getting excellent care now as well. In addition to your doctor watching over your situation with the graft possibly hiding future problems, you will find that you will need to continue to advocate for yourself.
That never seems to end. But I think you will do a good job of that too.
Best,
Anne

Yes ask your surgeon the questions. I'm not too concerned about the graft - I could probably done without it but I guess there would have been functional difficulties with it if i hadn't had it.

It's very surprising the MRI didn't pick up your tumor - especially one that size - mine was 1.4 x 2.4 cm and was readily visible on both MRI & CT I would love to have someone else read it - the results might be different... usually they can find it even if it's under the graft - either by CT or you will likely feel it - pain - and the graft could fail depending.

My problem was similar to yours - I'd had an ongoing issue for years.
My surgeon said the wrist graft tends to take better because sometimes he thigh tissue is too thick!

Anyway good luck - see your surgeon says! And take care!