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

Ugh. I know that feeling. I had my sore on my tongue for about a year before I saw a doctor. Not a smoker, not a dipper, not a heavy drinker, healthy my whole life, eat well, runner, surfer, skier, blah, blah, blah. Never thought it could be cancer until my new dentist grabbed me by the shoulder and said "Nels, you have to promise me you will call your doctor tomorrow morning." It was the look in his eye and tone in his voice. Suddenly, I realized I was likely in for a real health challenge.

Boy do I wish I had even known what tongue cancer was. Never heard of it much less this website and forum. If I had sent a simple note on this forum after a month or two, I would have been way ahead. Good on you for reaching out and staying on top of all this.