Hey all. First time post here, I just registered (and, yes, I read the rules!). I was diagnosed at the end of February with tongue cancer. CT is clear and oncologist thinks it's T1N0 but we'll see after surgery. We have a fantastic cancer center less than 10 miles from my home and I really like my doctor. I feel very blessed with this and what seems to be an early diagnosis.

Thursday I'll have the tumor and white patches removed from my tongue and a Sentinel Lymph Node Biopsy to see if cancer has spread. I'm hopefully optimistic I won't need radiation/chemo but trying to stay realistic. So, I won't be devastated if I do need treatment.

I don't smoke/use tobacco, have rarely drank alcohol at all in my life, and am HPV-. However, I do have lichen planus which is likely why I have cancer. I don't know, though, I don't understand all of this.

I'm so grateful to have found this forum to read other's experiences and support each other.

Oral Lichen Planus is also how I got tongue cancer. It started as a white patch on the bottom right side of my tongue that I did not even know was there until it was spotted during a routine dentist appointment back in 2017. I saw an ENT then who diagnosed it by looking at it (no biopsy). He said it wasn't cancer and not to worry. So, I didn't worry.

Fast forward two years later when a large bump (tumor) grew in the same spot. My dentist referred me to an ENT again who thought it appeared malignant. I had a biopsy last November (2019), which confirmed it as Squamous Cell Carcinoma (SCC). The ENT referred me to the University of Michigan because they specialize in head and neck cancers.

I had surgery on December 19, 2019 to remove a third of my tongue and they reconstructed it with a flap (taken from forearm). I also had a neck dissection to remove 10 lymph nodes from my jaw (one of which tested positive for cancer - putting me at stage 4).

As of today, I am 5 weeks into radiation & chemo treatment, with 2 weeks remaining. Including 1 final round of chemo (of a scheduled 3).

I can't help but wonder what could have been different had I monitored the lichen planus more closely.

"Silence like a cancer grows."

It's good that you are getting this taken care of before it gets really aggressive and spreads. Good luck with your upcoming surgery. Stay positive. Otherwise, the cancer wins.

I have posted the information below on the General Board and I believe it will apply to you.

Your problem with white patches and lichen planus may be somewhat rare so getting an expert second opinion can be very important (and I know personally that Dana Farber has specific expertise in that area)..



Leading cancer hospitals often offer the ability to get a second opinion by submitting your information electronically.

If you have any question about how your cancer is being treated, get a second opinion from a leading cancer center. You may want to link to a center close to you in the event you decide to go to that facility. Search that center name and "electronic second opinion".

Here's information from Dana Farber Cancer Institute. https://www.dana-farber.org/appointments-and-second-opinions/online-second-opinion-program/