Lola,
Many thoughts and prayers headed your way for strength, insight and peace tomorrow. Been there, done that and the waiting for test results is always the hardest. Please keep us posted. Love, Kris

Lola... I didn't have braces one of our other members had chronic irritation from braces. I have been concerned with the side I chew on as well. I had two molars there that were irritating my tongue so I had them filed down a bit and that has solved the problem. if I'm a little irritated there (crackers and such and chewing hard stuff can cause this - also spicy acidic foods as you may know) anyway when I'm a little irritated there is switch to soft non irritating foods for a few days until its gone.

This is considered a new primary for you - best of luck with everything thankfully they've caught it early hugs!

Dear Lola,

I am crushed to hear of your recurrence. It's frustrating to be so young, with no known risk factors, getting 7 years out, and then the rug gets pulled out from under you.

With my first battle with the beast, I was lucky that I had no nodal spread and didn't need rads/chemo. I enjoyed a little over a year of being "cancer free" and then the get the bad news of having it in my tonsil. The doctor was not expecting cancer at all because it would have been considered to be a totally different type of cancer. It's still a mystery, but the tumour was HPV negative!

Well, I went through the hellish rads and chemo...had everything thrown at me. It sucked, but I'm grateful to say that my first post-treatment scan showed NED! So, there is plenty of hope for treatment of recurrences. You are still young, so they can treat you aggressively. It seems like what you have here is very treatable, with a high cure rate, even though you don't know the staging.

Best wishes on getting rolling with an effective battle plan so you can look forward to life again.

One question, and I apologize if it's too personal. With the loss of your mother, do the doctors think there is any genetic link, especially since you seem to have no risk factors? Did you mom have risk factors. I'm very sorry you lost her to this disease, especially at such a young age.

With great care,
Kerri

Kerri to me it sounds like a spread to your tonsil ( a recurrence ) normally if tonsil is your first primary it's likely HPV, but sometimes it's just a spread from the initial site. And thankfully you are NED!!!!!

Kerri-
Yes, my doctors believe there is a genetic link. He even said "angry genes" because I have this new tongue tumor. My mom had no risk factors like me. She died at 33 and I was first diagnosed at 33. I will say the main thing that her doctors did wrong when she first noticed it was dismiss it. She had a cold sore/canker sore that didn't heal and the doctors kept telling her it was just a sore and it will go away. By the time tests were confirmed, the cancer had spread too too much. Back then, doctors couldn't fathom that tongue cancer could occur to women who didn't smoke or chew.

Thank you for your thoughts Kerri.

They still have a difficult time believing that people with no precursors for this disease can get it. I know because as you may not by my signature. I am a healthy fool. Most of the drs. and people I met during the treatment and dx process couldn't believe it when I matched none of the standard demographics for this disease, and YET there are a bunch of us here.

Hugs... I responded to your other post...

PS... genetics? NOPE. Mom died of lung cancer but other than that (she was a 3 + pack a day smoker from the age of 14) I have NO history of cancer in my family.

Thanks for sharing, Lola. We're here for you!