Welcome to OCF, Janey! Im very sorry to read about what you have recently experienced!!! Its never easy when someone is told they could have a serious health condition. Even worse is waiting for test results to come back. Passing the time by staying super busy helps many to avoid the "what if..." way of thinking/worrying. As I reread this reply, I noticed Ive used the little tiny word that has a GIGANTIC meaning quite often.... IF!!! . Theres so many variables and nothing so far has been confirmed so everything is just speculating what could happen which may not happen at all. Staying more to the present helps to avoid "borrowing trouble from tomorrow" which we all can do when we're worried about something unknown. Oral cancer is NOT anything Id ever wish on my worst enemy!!! Hopefully you do not have this at all and will not need our services. We're here if you do need us anytime in the future.

Hopefully your biopsy results will come back as the lesion being leukoplakia. The ONLY way to determine exactly what something is would be is to do a biopsy. Even the most brilliant and most experienced specialists can NOT identify what a spot/sore/lesion/lump/bump etc is visually. Often leukoplakia is something health professionals like to "watch and wait" as it frequently returns even after it has been surgically removed. Most patients will nervously watch the area closely after having leukoplakia removed, only to see it come back. This can be very upsetting!!!

I think what you described as "now being a solid white mass" is thrush. For patients who have other ailments affecting their health, thrush can be difficult to eliminate. Thrush requires antibiotics like nystatin or it will continue to flourish which can be very painful!!! Anyone with a compromised immune system is prone to go thru thrush from time to time. Oral cancer patients/survivors tend to fall into that category with many here reporting they've had thrush after they had oral cancer. Something else I noticed in the info you posted, "a big white mass covering a large area" is NOT normally how oral cancer presents itself. Many oral cancer patients do not have any noticeable symptoms at all. Some will have pain while others do not, some have a sore throat or intermittent earaches or other seeming mild issues so you just never know!!!

Im sure none of this is easy for you right now! Its always a terrifying experience to hear you may have a serious health condition. Unfortunately I dont know how much more help we can be to you besides what I shared above. I'll try to explain some other things to help you better understand cancer, patients, OCF, your situation, etc. At OCF, we take our members private identities and health conditions very seriously. Everything here is completely anonymous. We only know as much about a member as they are willing to disclose to us. Some people are very private people and want to remain anonymous to the hundreds maybe thousands from all over the world who read this and every post 24/7 every single day and night. Our site has members coming from countries all over the world. That said, our members do NOT normally attend other members doctors appointments or even meet up in person. Like a needle in a haystack, finding any one person that is living in your general area and also has been thru leukoplakia where it changing into oral cancer is highly unlikely! That is IF that individual would feel comfortable sharing their own private medical history with a total stranger plus they're willing to meet you in person or if that one rare individual is even available at the time/day of your appointment. Im sorry!!! I definitely do NOT want to burst your bubble of hoping to find someone thats experienced and willing to accompany you or if you actually are ok with allowing a person you do not know to sit in on your doctors appointment hearing about your private medical info. Its not going to be very easy to first find someone nearby let alone all the other requirements you're looking for. Plus.... you may not have considered if the person you want to help you actually understands enough about leukoplakia to be a positive and knowledgeable influence.

Every one of us is an individual that will experience different things than others with a similar diagnosis. Theres far too many variables involved when comparing patients who at first may seem identical. Even if on paper everything matches, comparisons still do NOT work! For example... take several people who are all the same age, height/weight, sex, have the same type stage and location of their tumor, live in the same general area the majority of their lives, have the same profession, work the same shift for the same amount of time, be exposed to all the same carcinogens at the same point in their lives, have the same allergies, vaccinations, general health histories, same family dynamics, same amount of stress in their lives, take the same medications for the same other ailments, have the same smoking/drinking histories, eat the same diet... even their food is from the same store and original locations.... all those things look as if the people are the same individual but they will still have vastly different reactions to medications and/or treatments! It could all come down to one patient having some unforeseen complication for them to have a predisposition for a specific disease. You just never know!!! Something could work great for one person but even someone who appears identical could and will likely have an opposite reaction/experience that brings us right back to a phrase we commonly use ... everybodys different.

Besides everyone being an individual, we're just a group of people with a common bond as oral cancer patients/survivors and caregivers. Our members freely share their own experiences to help each other by drawing from what we have learned first hand ourselves. We do NOT have medical backgrounds/degrees or years of medical school, clinical patient experience, the patients full medical history, or the patient right in front of us to examine (we wouldnt know what we were looking at anyway) and ask clarifying questions to help figure out their specific medical condition. Since we all have been touched by oral cancer, a very serious, potentially deadly disease that leaves many with a host of lifelong health challenges its not unusual for us to know more about cancer than many other lesser serious health conditions. Please understand, almost every OCF member has or had oral cancer which is a rare disease. Also rare is to be formally diagnosed with leukoplakia. We do have some members but not many who first had leukoplakia before it changed into oral cancer, which does NOT usually happen. Off the top of my head, when I think of leukoplakia, I instantly think of only a couple members that have remained active without their leukoplakia ever becoming cancerous. I think the link below will help to understand premalignant lesions. Im sorry we do not have more info about leukoplakia or other pre-malignant conditions!!!

Wishing you all the very best with everything!!! Hopefully your biopsy results will return with a diagnosis of what you have as only leukoplakia!!! If not, and you actually have oral cancer... we're here to help you with info and support for anything/everything to do with oral cancer. Good luck!!!

Main OCF Site, Premalignant Lesions

PS... Ive just read you had been using tobacco and alcohol. That changes almost everything Ive written... those things are likely playing a huge part in your current situation. Im VERY glad to see you stopped using those things!!! Those items could be why the PH in your mouth is thrown off so much you have thrush. By eliminating the poisons of alcohol and known cancer causing additives from tobacco use, your mouth will have a chance to heal on its own without all the unnecessary and negatively impactful influences causing further complications. Usually patients who had used alcohol and tobacco stop they will see a huge change in their mouths by 2 or 3 weeks. Please let this be your wake up call and permanently eliminate them from your life, they really are that bad for you. Its GREAT news that you have quit!!! Good luck!!!

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile