I can’t believe I’m just now discovering this support group. Back in 2019 and 2020 I had seen several doctors for feeling like I had something in my throat and an enlarged lymph node under my jaw. The doctors said they didn’t feel it was “enlarged” and couldn’t diagnose, nor wanted to investigate any further. Every time I saw a doctor they did the tongue depressor and never saw anything. I saw a new doctor on August 6, 2020 and told her my symptoms. I thought the feeling in my throat was my uvula and thought I needed it reduced. She referred me to an ENT. I had an appointment on August 11. On August 10 I was on a conference call for work and had a coughing attack. I coughed up bright red blood. I went to the ER and one CT later I was diagnosed with base of tongue cancer with mets to the lymph nodes at all levels on the left side of my neck down to my clavicle. I saw the ENT the next day. He took the tongue depressor and pressed down hard and said he could see it. He reached in with tweezers and tore off a piece for a biopsy. That was fun!! 🙁 He said he was 99.99% positive it would be HPV+ with the P16 marker. A few days later the pathology report confirmed it. 7 rounds of Cysplatin and 35 radiation treatments at 70 gray and I’m “cancer free” 2.5 years later. Although, the radiation caused osteonecrosis of my left jaw bone a few months after treatment, which I was told was extremely rare. I live in Atlanta but went up to Rochester for a second opinion how to treat. I had 2 months of hyperbaric oxygen treatments. After 3 weeks of treatment the dead piece of jaw fell off inside my mouth. This allowed the treatments to really do it’s thing. That was amazing treatment and fantastic staff and medical care. My long term issues are still extreme dry mouth and I developed Burning Mouth Syndrome. I hope no one gets this. It’s so painful, with no cure. Let’s hope some day I wake up and it’s gone. I’m super sensitive to pain medication. It’s the worst of two evils: pain or the unbelievable side effects of pain meds that could potentially help.

I know your post is from 2020. I hope your treatments went well and your recovery has been excellent. Praying for everyone in this group and everyone who experiences cancer, along with the amazing caregivers. I think it’s almost harder on them, especially when they are a fixer.

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