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!