Hello,

I have had issues with "white patches" on my tongue for about 1 year. 3 doctors later and 6 months I went to well known cancer clinic in boston. Following a left partial glossectomy in July 2020 I was diagnosed with"squamous mucosa with acanthuses, parakeratosis, and mild to focally moderate dysplasia." In March I told doc it was growing, but they time they resected in July it was about 4 cm. The did not get clear margins and plan to go in with a CO2 laser to get the mild dysplasia at tip of tongue, I am 2 months post op and the left over lesions are growing and I now see other spots have formed. I have a follow up appointment Oct 19th. Doc said "mild dysplasia does extend to the tip of the tongue, however, I am not sure whether it can all be easily resected without resulting in a significant defect in her tongue." He is recommending observation till Oct.

My question is why are they moving so slowly? He asked me to take a picture of tongue and send it. These white grey patches are hard to catch with a camera. It feel like he doesn't believe me. If we know they are there, I told him they are growing and he can't resect them without "significant defect of tongue." What is he waiting for? Should I be worried? I am thinking of going to nyc for second opinion. Last time it took 6 months to get in, and in my opinion the lesions more than doubled in size. I don't want this to happen again, but it is like the doctor's office doesn't believe me. I of course am filled with anxiety.

This happened 15 years ago with lumps in my neck. 5 doctors later and 8 months later, I was diagnosed with thyroid cancer. Treated for a year, and been fine ever since. If I hadn't pushed, I would have been diagnosed so much later. I am having same fears with this tongue issue.

Thoughts? Any advice appreciated. Anyone have similar situation? Or am I filled with anxiety over nothing? I hope so and hope this is not a huge deal. The tongue surgery definitely was the hardest I experienced. My hearts go out to all of you dealing with this cancer.

Thanks in advance and sending good thoughts for all of you going through oral cancer currently.
Mrs. Karl