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Joined: Apr 2021
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Joined: Apr 2021
Posts: 1
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


Sarah Haller
Joined: Aug 2020
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Joined: Aug 2020
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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.


Diagnosed Buccal SCC 5/29/20
Surgery 6/30/20
No rads/chemo recommended
Positive lymph nodes/mouth recurrance 10/20
Mandibulectomy/fibula free flap 10/28/20
33 Rads started 12/14/20
3 Cisplatin chemo started 12/15/20
Joined: Feb 2015
Posts: 133
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Joined: Feb 2015
Posts: 133
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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.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
1 member likes this: Brian Hill
Joined: Nov 2022
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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! 🙏🏻


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