Hi,
I'm new to this support group but not new to HPV Negative Oral Tongue Cancer. I was 36 when I was first diagnosed April 20, 2018. I'm a non-drinker, non-smoker, Organic eating, Ultra runner. I live a beautiful life with my husband and 2 great girls 12 & 14.

I've been SO FRUSTRATED on this cancer journey where no one has taken me seriously. Doctors and dentists said I had burning mouth syndrome. After I lost my hearing I was finally sent to an ENT.

Anyways finally a biopsy revealed Invasive SCC, tongue and floor of mouth, 2nd reoccurrence July 2018. Celebrated 2 years Cancer Free this summer only to have it coming back for Round 3.

I'm being sent on to MD Anderson. I guess I'm on here seeking Hope. My end goal is to get my girls raised to graduate High School. Are there any younger 3+ Reoccurrence long term survivors willing to share their experiences? Advice? Thoughts? Inspiration?
Thanks in Advance,
Sarah Haller

Hi Sarah

Just wanted to say I am sorry you are going through this. Mine (initially inner cheek) is just as aggressive. Came back at 3 months, then surgery, rads/chemo. Two months later, in lymph nodes. Waiting on next steps now. Just thought it might help for you to know I am in the same boat. Best of luck and write amytime.

You're in the right hands now so 3rd time will hopefully be a charm.

My first surgery was 2003 and last 2015. I've seen my grandkids graduate from high school, the oldest one college and hopefully you'll be able to do the same.

Sarah,
So sorry you’re going through this at your age. I was diagnosed in February 2016; surgery in April 2016; chemo & radiation. Mine came back in January 2019. My doctor gave me <20% chance so I went to MD Anderson in Jacksonville, FL. They are phenomenal! You’re in good hands now! They told me they would CURE me. Imagine hearing that! I’m 2 1/2 years cancer free & there are many people on this forum who are 12-year survivors. Best of luck to you! 🙏🏻