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← Return to HPV P16 positive cancer
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Head & Neck Cancer | Last Active: Mar 26, 2023 | Replies (107)
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Hello,
I mirrored your experience. I had been complaining about my throat 2 years prior to being diagnosed with oropharyngeal cancer. I had been scoped many times as well with no definitive answers. What caused me to not continue to see the ENT, was that he reassured my during one of my scopes that it wasn't cancer. I would like to share with everyone, to continue to request scopes and be vigilant, even when you are comforted by good news. I too had a sore throat and was coughing up blood for months. Yet, I was given a clean bill of health. It's a mystery to me how both of us, and many others are missed. Hopefully, there can be further learning so we don't go un-diagnosed.
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Hello @ dc56
I agree, it’s unfortunate that we had to learn the hard way about oral cancer. Did they ever find the primary source of your cancer? Mine was not discovered until I was in surgery for the peg tube. When the surgeon came back she told my wife she found the primary source of my cancer, it was in back of my right tonsil. It’s hard to believe that two different ENTS did not think to look in back of my tonsils during the two year period. They numb you up to put the scope up your nose and down your throat, I’m thinking they must have some mirror with a light that would have allowed them to look in back of my tonsils. Unfortunately, it’s old news now, but if someone else has an unknown source of oral cancer, I would suggest you ask your ENT to look in the back of your tonsils. I understand there’s lots of places cancer can hide but it wouldn’t hurt to have them look there. Now that they knew where my primary source of cancer was I able to have targeted radiation to that area of my neck. It’s now 13 years post radiation & chemo, I still have my dry mouth and my taste came back slowly. After about two years I now have full taste. I had to crown what’s left of my bottom teeth and use a partial. I noticed thru the years my teeth were getting thinner & thinner between the teeth. I use lots of mash or sweet potatoes to help with the swallowing, fresh avocado works well to.
The most recent thing I deal with is this right neck gland that continues to swell up intermittently. Based on what I read it is know as Radiation Fibrosis. Apparently the neck muscles are now more rigid post treatment and don’t have the elasticity to snap back so well. It’s just something I learn to live with. Let me know if anyone else has the swollen gland issue as well, I hope this helps someone.