Welcome to OCF! Im very sorry to read the situation you and your husband are going thru! You definitely have your hands full and need to tiptoe around your husbands other medical conditions which is NOT easy!!! We will do our best to help you.
Our site is made up of oral cancer (OC) patients/survivors and caregivers. We do NOT have medical degrees, years of medical schooling, patient clinical experience, the patients full medical history (not that it would help us), or the patient there to ask questions, etc. But, what we have many doctors and nurses do not. We have gained the knowledge by going thru biopsies, diagnosis, medical procedures, surgeries, recoveries etc which helps us to understand on a level most medical pro's can not. Most of our members can tell you a million things about OC but they may not fully understand biopsy reports or other ailments that are not cancer. We do have quite a few members who have had dysplasia or leukoplakia, most have not had it turn cancerous but some have.
As far as asking retired nurses, Im sure they're trying to be helpful but they probably wouldnt be the best resource. Im surprised they are telling you your husband has or will have cancer when the biopsy proved he does NOT! Unless the nurses have specifically worked with OC patients, they probably wouldnt have all the knowledge to be able to make a proper diagnosis with the limited second hand info. Also being retired from their profession they probably wouldnt be keeping up to date on the most recent medical discoveries especially when talking about things that arent very common. Leukoplakia and dysplasia lesions usually do come back after they're been removed.
The majority of people who have this do NOT have it turn into cancer. But of course every patient is different so it could happen (hopefully not!). Im sorry but I cant remember the percentage of patients who have had their leukoplakia and/or dysplasia change and become cancerous but I do know its VERY low.... maybe only 10-20%. Of course every patient is different and what works on one may not work for someone else. Trying to compare patients is like comparing apples to oranges. There are far too many variables to consider which makes it impossible to form an opinion based on other patients. Sometimes dysplasia and leukoplakia are called "pre-cancer" which isnt completely accurate considering most people who have it do NOT end up having cancer. Over the years, we have had quite a few people come to our site asking for help with dysplasia or leukoplakia. Unfortunately most of our members have no experience in this and are not able to help as its not OC which is what OCF deals with.
On our main OCF website, theres a section that will help you to learn more about non0-cancerous mouth issues. I hope your husbands condition does NOT ever change into being cancerous. Your husband may want to go for a second (or third or fourth) opinion about what he has going on. Since he doesnt have a cancer diagnosis the usual treatment facilities (comprehensive cancer centers --- CCC's) may not be available to him. An oral surgeon or ENT who specializes in treating patients with leukoplakia and/or dysplasia and OC may be your best bet. You would definitely need him to get examined by someone who has years of experience in this sort of thing. Best wishes with everything!!!
Main OCF site, Pre-malignant conditions
