On 1/6/2010 I had a biopsy that showed that I once again had SCC on the right lateral side of my tongue. The tumor was small (<2 CM) and was removed, but the margins were not very wide. My prior treatment is listed in my signature line.

I already had a PET scan which showed two things besides the obvious activity in my tongue: 1) Activity on the left side of my thyroid which is a know problem for me since at least 2005 – Hashimoto's thyroiditis (the most common thyroid disease in the US). 2) Small, but hypermetabolic left level 2 and level 3 cervical hypermetabolic lymphadenopathy, suspicious for regional metastatic disease. No evidence of right cervical hypermetabolic lymphadenopathy.

I then had a FNA of the lymph node which showed “negative for malignancy” and was termed “consistent with reactive lymph node”. The FNA of the thyroid was also “negative for malignancy” and was “consistent with Hashimoto's thyroiditis”. This is the 3rd FNA of the thyroid since 2005 with the same results and no treatment is recommended at this time.

I’ve had two opinions so far regarding treatment. I am considering going for a 3rd opinion.

The first was from my ENT who has treated me since 2005. His recommendation is to remove the right half of the mobile tongue with no reconstruction. He would also do a modified neck dissection on the left side, but leave the ride side alone. If the left nodes did shows signs of cancer after the neck dissection, they he would recommend RT on the left side.

I went for a second opinion at Fox Chase Cancer Center in Philadelphia, PA. I meet briefly with the RO and basically RT is out of the question for me since I’ve already had the max dose to the right side plus I’ve had such a bad reaction to it to begin with. I didn’t meet at all the MO since chemo is not at option at this time. The surgeon also wants to remove the right half of my tongue (possibly more), but also wants to remove into the floor of my mouth and do reconstruction (free flap). He also wants to do a bilateral neck dissection. Additional treatment would be determined after the biopsy of the removed lymph nodes from the neck. He also felt I could get by with a naso-gastric tube while in the hospital (1 week) and would not need a trach. I’ll be meeting with the reconstruction doctor and speech therapist on Monday.

I’ve read about many of the problems OCF members have had with the free flaps, and to be honest this part of option #2 really scares me. Also, based on my test results, I’m not sure a neck dissection is warranted (again concerned about the LT problems).

I have many questions, and here are a few to start:

Has anyone had half their tongue removed without reconstruction? If so, what problems do you have with speech and eating?

Has anyone had free flap surgery and did so without getting a peg tube?

If you had a free flap, how is your speech and eating now? How long did it take to relearn these functions?

Also, what additional questions should I ask my medical team?

Thanks!

Also, I want to publicly thank ChristineB, wilckdds (Jerry), Ray1971, Susan Lauria, suzanne98, mhupe (Margaret), and suemarie who have giving me moral support and guidance so far. Jerry even went above and beyond the call of duty and went with my husband and me to Fox Chase to meet with the surgeon.

Thank you all!

Susan

I'm so sorry that you have to deal with this again. My experience is totally different from yours, so I can't assist with your questions.

Wishing you all the best with your appointments

Karen

I had about 1/3 - 1/2 of my tongue removed without reconstruction in Oct 2008. I had issues with talking and eating for a while, but my tongue adjusted in a few weeks - months.

The 2nd surgery in Nov 2009 involved a cranial nerve which controls the movement of the back left of my tongue. This has caused more issues with talking and eating than the first surgery. Right now I'm still in treatment, so I am still having issues with tongue movement.

Overall though, I was told as long as they removed less than half of my tongue, it would be able to function normally without reconstruction. When I went into surgery in 2008 I was prepped for reconstruction, just in case the cancer had spread further than they thought. Luckily the reconstruction was not needed for me and my tongue went back to functioning pretty normally.

What a difficult decision. My experience of both tongue surgery without reconstruction and flap surgery is that the former is far easier than the latter. After my laser surgery in 2007 my tongue scarred down and was tethered but it didn't worry me much as long as I didn't look at it:) When the cancer recurred in scar tissue I had a much wider excision and a flap from my wrist. I had a trach and nose tube and neck dissection.

The various things combined made for a miserable 18 day hospital stay but at 63 I have bounced back amazingly well. I could speak intelligibly almost as soon as the trach was out. My speech is slightly slurred only because after 3 1/2 months the flap is still swollen. I can eat whatever I like but it's a bit of a struggle at times. As far as overall well-being goes, I feel very well - my scars have faded nicely.

All this is made easier for me because my previously operated on tongue was a bit of an obstacle too so I was used to a certain level of discomfort.

I was told it takes about 3 1/2 - 4 months to recover from the op. Because my flap is still swollen I'm behind schedule but if I get speech therapy soon I think I could go back to my relief (sub) teaching sometime in April ...

Sorry this has taken so long to express - less is more!

I meet with the reconstruction doctor on Tuesday, and he described the reconstruction aspect of the surgery and answered all my questions.

He has me almost convinced that the free flap is a good thing for me, but still not 100% convinced. They would use my forearm for the donor site. Traditionally they then cover the donor site with a graft from the thigh, so you have 3 areas that have to heal. He told me about a new procedure they use which involves cadaver skin (yes, donated from the deceased). This method involves two surgeries. The first is to implant the donated skin in my forearm to allow it to develop a blood supply, etc. This takes place 2 weeks before the main surgery. There are a number of advantages to this method, including fewer problems for the donor site. However, he has to check with my surgeon to see if waiting 2 weeks is OK and also if there would be enough tissue under this method.

Has anyone else had a free flap using cadaver skin? If so, did you have any problems with either the free flap or donor site?

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Jen, thanks for your reply. I wish you the best with your treatment. It isn’t an easy road that we travel.

Alpaca, you certainly have been through a lot also. Thanks for sharing your experiences.

Karen Rose, I’m glad you aren’t facing what I am now, as you’ve had to face a lot more than I have.

I will keep you all in my prayers.

Susan

I'm not sure whether this would apply to you, but because the floor of the mouth is involved will they be anchoring the tongue flap down to act as the floor of the mouth and tongue? Quite often when they say free flap it is really misleading because it is not actually free, it is stuck down. That is what I have and so do a few other OCF members. Alot of surgeons don't seem to be very clear about that when they are giving their treatment plans.

My original flap was taken from my thigh.

Karen

Karen,

I will definitely add that to my list of questions for my doctor(s). I still have a lot to learn about free flaps, and I'm sure the whole process is very costly also! Thank God I have good insurance, but I still have to pay a portion of my treatment.

Thank you again for your input!

Karen,

A free flap is called that because it is not a flap that is slid over from an adjacent area and therefore maintains it's blood supply and nerve supply. This is called a sliding flap. As you know, a free flap is taken from another area of the body.

The name is misleading, but it has nothing to do with the area of the flap having the freedom to move.

Good luck tomorrow at JH, Susan.

Thanks Jerry.