2/5/2012
Dear Eva,It’s so wonderful that you’re spreading awareness for oral cancer. I had a sore on my tongue for a few months. Several ENTs denied to see me because of my age (25). After coming across your website when looking for possible causes, I immediately demanded a biopsy. You motivated me to do so! The results came back as hyperkeratosis and lichen planus, so I am very relieved. I will be sure to keep an eye on it. The knowledge and awareness you have provided will be invaluable in the future in case I do become a victim of oral cancer. Thank you so much, and keep up the wonderful work!
Carson
2/6/2012
Hi Carson,
I’m so glad you wrote! You really made my weekend by letting me know that all my hard work to raise awareness is paying off!
My sore was also diagnosed as hyperkeratosis, two years prior to my diagnosis. However, I learned it was read by a general pathologist and not an oral pathologist. The latter is VERY important. Please find out if the pathologist that read your slide has an oral specialty. If not, get the specimen retested, especially if you notice changes.
My sore went away for two years after the biopsy….I didn’t FEEL anything, but the tissue was changing in color and texture, all early signs of oral cancer. My dentist had no current education in early detection and had no idea that the ulcer on my tongue was squamous cell carcinoma. Are you seeing a dentist/hygienist who has had some education in the subject? Don’t be afraid to ASK. You may want to switch to a dentist that does.
Also, you need to know that a sore should not last for more than 14 days. That’s it! Don’t ever let it go longer without getting it checked. Keep a good eye on the area. If you see the tissue changing, (red/white or texture) TAKE A DIGITAL photo! Make note of the changes.
Don’t be afraid to get another biopsy. If it develops into cancer, it is very survivable if dealt with early.
Carson, please keep in touch with me and let me know how you do.
Eva
PS Did you ever smoke?
2/11/2012
Dear Eva,My continuing symptoms worry me a bit. This whole thing started about 4 months ago with white patches that began to appear in three spots on my tongue. They gradually spread and now cover the entire surface. I first noticed them as I became very sensitive to spicy foods. The sore began to develop a month later. More worrisome is the fact that I also developed an earache and sore throat on the same side. I didn’t even think oral cancer until I saw Six-Step Screening.
I immediately booked an appointment with an ENT. It was surprisingly difficult to get him to even look in my mouth, due to my age. He told me it was geographic tongue (without even looking) and sent me on my way. I tried a different approach by going to my dentist. He had no clue and referred me to an oral surgeon, partly to get my wisdom teeth extracted and to also take a look at the sore. The oral surgeon did the biopsy and extracted my teeth at the same time, which he said could be causing the earache.
As I said earlier the biopsy results pointed to hyperkeratosis and a lichenoid coating, which indicated it could be lichen planus. Unfortunately, the earache and sore throat don’t seem to want to go away, so I’ve been booked for another ENT appointment that I will attend in a few days. On top of all this, ANOTHER ulcer has appeared lower on my tongue just yesterday, near the floor of my mouth on the same side, GAH! It’s tiny, and I think it’s just a normal canker sore, but I will DEFINITELY be watching it for the next few days.
Do you have any suggestions on what I should bring up with the ENT? Any tests I should have done? And also, do you know anything about lichenoid eruptions? Everyone I’ve asked say it’s an autoimmune reaction, which I don’t understand very well, my oral surgeon says he sees it most commonly in people over 50, I’m the youngest he’s seen it in.
I have never smoked.
Thank you so much! Carson
2/11/2012
Dear Carson,
Ask your oral surgeon to send the tissue to an oral pathologist in your state. Here is a link to find one: hhttp://www.aaom.com/doctor-finder. Otherwise, Tufts in Boston has a program where they accept oral tissue biopsies and analyze them….a very reputable head and neck department in the dental school. Here is the link for your dentist or oral surgeon to order a biopsy kit. It’s FREE. http://dental.tufts.edu/1186234234776/TUSDM-Page-dental2w_1186331315190.html
After hearing about your ear and the sore throat….classic signs of an HPV related cancer (takes well to treatment), you need to get yourself to specialists right away in a major medical center.
Please tell me you will do it soon!
Eva
2/16/2012
Dear Eva,
Sorry, internet went down for a few days. Thank you so much! I will take this information to my oral surgeon at my appointment tomorrow!
Carson
2/16/2012
Dear Carson,
Oh, I was worried I said too much when I didn’t hear from you. I was visiting my brother tonight for dinner, and I told him about you. He said that if you need a ride to the city, since he lives in the same state that you do, he would drive down there, pick you up, and get you to a reputable group. He was serious. He is a great guy! Let me know if you want to take him up on the offer.
Sorry to be like your mom, but I will worry about you until you get up there. So let me know when you go.
Eva
2/17/2012
Dear Eva,
Hi! Wow, it was surprisingly difficult to get him to send the specimen for a second opinion. He kept trying to deter me. Sometimes I wonder about these medical professionals…Wow, your brother’s awesome. I do have my own transportation, but that’s very touching. And don’t worry about it, I wouldn’t have done any of this if I hadn’t gotten in touch with you and for that I’m thankful.
I’ll update you when I get the results back, he said it could be a long waiting time.
Until next time!
Carson

Comments 1
I’m so inispred by you. Your fortitude and strength. I barely know you and think you’re amazing. Thank you for every single step you took.