Hi all,

I’m pretty new to this oral cancer journey, although I started it a long time ago. I’m only 36 but have been monitoring patches of leukoplakia on my tongue for about 9 years with my dentist and oral surgeon and I’ve been biopsied 3 times. My prior biopsies came back all mild dysplasia & hyperkeratosis but benign. My latest biopsy however in November 21 showed carcinoma in situ, technically stage 0 oral cancer. I’m lucky it’s nowhere else right now, and my stage is early compared to when many find themselves with cancer.

I was referred to an ENT who specialized in oncology and on February 28th, I had a partial glossectomy. I had about a 5cm spot removed from my right side of my tongue and they used alloderm as an allograft instead of taking a graft elsewhere in my body. Surgery went great, no complications and all the CIS got removed, but I will probably have another procedure to remove the rest of leukoplakia that isn’t cancerous yet that is more toward the floor of my mouth.

I’m doing okay on healing, thankful for pain meds and liquid food and my support system around me.

But I’m wondering a few questions:

1) Anyone else have experience like this out there? I feel so alone and like grateful it’s not more advanced cancer but it’s still cancer and I feel lonely and am trying to find someone who understands and has been here before.

2) Has anyone else had an alloderm allograft before? What was your experience with it? Did yours begin to taste disgusting as the swelling goes down? Does it fall off eventually? I’m thankful for the option of using this instead of needing my body to heal elsewhere.

3) Anyone else think their oral cancer came from HPV? My surgeon is testing the tissue they removed, but it wouldn’t change my course of treatment. I’ve never used tobacco and very rarely drink, so HPV is likely the culprit. But I’m vaccinated against HPV and get regular Pap smears, so I am unsure how when and how I would have got it. Interested in hearing other stories out there.

Thanks all for sharing and wishing everyone who reads this the best.
- Sara