I'm a healthy female (age 53). Non-smoker, rare glass of wine. Plus, active mom to two kids (ages 11 and 13). I'm a patient at Johns Hopkins in Maryland, so one of the top otolaryngology centers in the world.

My first appt (not at Johns Hopkins) was with an oral surgeon who thought the spot on tongue was an injury caused by rubbing on back tooth. Since I had no pain, and wanted to believe him - I left it at that. A few months later it started feeling slightly painful. This time I went to an ENT surgeon at John's Hopkins. He performed a biopsy which came back positive for squamous cell carcinoma. Three weeks later I'm in surgery to remove pea-size section of tongue and level 1 lymph nodes (just an added safety net, he said). All post-surgery pathology was negative for cancer. No radiation or chemo recommended.

Now, 2 years later a sore lymph node has been biopsied and found to be cancerous. Why was it even there!! Told that they don't always find every lymph node. I am scheduled for a PetScan on Friday, Dec 9, and surgeon and separate radiation oncologist appt on Monday. Surgeon is currently recommending 2nd - possibly more extensive neck dissection - followed by radiation. No chemo at this point.

Knowing what I know now I would have opted for radiation after the 1st surgery, but I guess my low risk and test results from first surgery didn't place me in that category. Second surgery is deemed riskier due to scar tissue from first, so nerve damage may be more of an issue. The first surgery was minor nerve damage with only some residual numbness under jaw.


Kathy