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

Hello @ichbindck . My father experienced these oral changes although his first biopsy was already progressed into cancer. He had a lot of the predisposing factors with oral cancer as a recovered alcoholic and 50 years of smoking. He had a rather big surgery to remove bone and soft tissue due to tumor progression under his tongue. Unfortunately despite radiation and chemotherapy it continued to recur until his death. Now 35 years later there are many new treatments and much more knowledge about Head and Neck cancer. You might find a better response from people with Leukoplakia under the Head and Neck Cancer discussion or even ENT if you search there.

What are your doctors recommending next?

@ichbindck, I'm glad that this was found in the pre-cancerous stage. What has been suggested for follow-up to monitor?

My dentist will keep an eye on it with my 6 month cleanings. They still suggested having an orthodontist remove the small remnant left after most was removed during biopsy. I do not have dental insurance and they refused to accept my insurance with Blue Cross/Blue Shield. I insisted this is not dental care but cancer care. No go so I am not doing anything but wait and observe.

Gosh, not sure this is helpful but 3 years ago my dentist saw the whitish pigmentation on my upper gum and in Sept. suggested biopsy which determined it was dysplasia. Had laser treatment in Dec. and a few months in April later it was still there and oncologist surgeon did another biopsy and it was squamous cancer. Did hemimaxilectomy immediately. I am an older woman, non smoker, they were surprised. I think catching it early helped my survival. 5 months later another developed on lower jaw and then

sorry, didn't finish message. 5 months later another, had radiation with ensuing difficulties but nothing since. My advice, be every aware.

Sorry to hear that it has progressed. I am 81 year old male and pray mine does not evolve into cancer. Just keeping an eye on it with dental exams for now. Thanks so much for your reply.

I have a friend who is really struggling with hyperplasia. She’s seen her ENT and he continues to cut the areas out of her tongue. Who do you go to in order to find a treatment plan? Thank you!

@dhueter Hello and welcome.
I hope your friend has the removed tissue biopsied each time. A consult with an oncologist wouldn’t be out of the question as well.
Going to the same ENT and getting the same results is maintenance. Finding a reason and addressing this is science. We always need to take our healthcare into our own hands if/when our current medical help fails us.
By reaching out, you have taken the first step. Your friend’s primary physician should give the referral needed if required.

@hrhwilliam Thank you. What academic center treats this disease? I can’t find one that knows how to treat this.

@dhueter Start with a state university hospital. There are also the larger cancer centers such as Johns Hopkins, Mayo Clinic, MD Anderson in Houston and so forth. I am assuming you live somewhere in the U.S. yet I have no idea. This is research you can do online. Make inquiries starting with the nearest cancer clinic.
To answer your question, I don’t know. If I needed this answered I would do the research or find a friend who can help. You must saddle the horse you ride.