Anyone have verrucous hyperplasia (oral leukoplakia) pre-cancer?

I have proliferative verrucous leukoplakia - I believe it’s what caused the SCC of my buccal mucosa in 2024. It’s
now closely monitored by an oral medicine specialist - I highly recommend trying to find one in your area. It’s a pretty rare subspecialty so you might have to travel. Good luck!

I just had my 4th tongue surgery which involved neck node removal and a graft taken from my thigh. What started 7 years ago as a lesion evolved into proliferative verrucous leukoplakia. I’ve been followed at a major teaching hospital the entire time. Frequent biopsies are needed in addition to physical observation. I am grateful that this cancer has not metastasized.

I too have had ongoing leukoplakia for many years and 4 instances of oral cancer since 2014, 3 in my tongue and 1 in my buccal mucosa. The first time involved surgery, chemo and radiation. My last tongue surgery was in February of this year, involving a partial glossectomy removing 1/3 of my tongue with reconstruction using a freeflap from my forearm. I also had a graft from my thigh to patch up my forearm, as well as a neck dissection to remove lymph nodes on the right side. I spent a week in ICU, then 3 weeks in rehab nursing a feeding tube, tracheostomy and wound care. Doing well now although some foods are difficult to eat and my speech is impaired, although intelligible. My tongue flap is still very large, but I can electively have it trimmed down if I want to after a few more months. I too will have close monitoring at a teaching hospital. Tongue cancer is one of the hardest cancers to treat - you don't realize how much function depends on your tongue - eating, swallowing, and speaking. My cancer has never spread either, fortunately - it just kept coming back. Best of luck to you!