Hi, I am new to this forum and found aotagandco's post on Proliferative Verrucous Leukoplakia and Squamous Cell Carcinoma. I have just been diagnosed with the same and have been told I need surgery. If you are still out there aotagandco, can you give an update on what you experienced? Or anyone else who has this diagnosis. I hope to find out as much as I can. I concur with the poster that some oral surgeons and dentists have no idea of the significance of a PVL biopsy report. I had leukoplakia for over 20 years and no one blinked when it turned to PVL 10 years ago. I went back to an expert I had seen 20 years ago who got me on the path to get this checked out.

My cancer started out with Leukoplakia. Are you being treated at a cancer facility? If not, look up the information on them on this site. If you have reason to travel to Boston, I can not say enough about Dana Farber.
I have sent you a private message.
Tom

Welcome to OCF! Im so sorry you are recently diagnosed. I know you wanted to hear from aotagandco. Im sorry to say they have not been here since Nov 2014 so its highly unlikely they will see or respond to your post.

Heres a link from the main OCF site it tells about pre-malignant conditions. There are links on the page to read more in depth info. Ive also included another relevant link for you. Hope this helps!

Regardless of the path to SCC, your treatments are likely to be surgery and or radiation with or without chemo. For that we have been thru it and will be able to help you thru treatment and recovery. Since your condition could be considered a complicated case, I would recommend going to a comprehensive cancer center (CCC) for at the very least a second opinion, possibly treatments. At a CCC, they should have the most experience with complicated cases.


OCF Main Site --- Pre-Malignant Conditions

NCBI - - - Proliferative Verrucous Leukoplakia.

Best wishes!