I had the repeat PET scan on 3/16 - the 'active' lymph nodes from the PET scan in January have quieted down, so neither my local doctor nor the doctor at Johns Hopkins feel a neck dissection is warranted at this time yippie! They definitely recommend careful monitoring of the lymph nodes in my neck via PET scan and physical exams to ensure nothing develops in the future, but for now they will leave my neck alone.

My surgery at Johns Hopkins is scheduled for 4/6. He will be doing frozen sections during surgery to ensure that all suspect tissue is removed, but he feels the surgery on my tongue will be minimal. He does not anticipate that I would need reconstruction, so no free flap (a big sigh of relief!). Although he said there is a small possibility I made need a graft (using my thigh as the donor site). The surgery will be 2 to 3 hours, and I would stay overnight.

This is a far cry from the surgery that was recommended at Fox Chase! The surgery they recommended would have taken 8-12 hours, 24 to 36 hours in ICU, 7 to 10 in the hospital, and 8 weeks recovery time. Plus I would need speech and swallow therapy and physical therapy afterwards. Not to mention the LT consequences and QOL issues caused by the surgery.

It sure seems like I got off lucky!

Thank you to all who responded with their experiences with a free flap.