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Saying hello and a question or two or three

Head & Neck Cancer | Last Active: Aug 5 7:24pm | Replies (16)

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@jonesja

Hello . First off this a very winnable battle. In particular, if this is HPV +16 as William noted. Google will certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good! Most important have Faith in the Lord and It really will put your mind to easy. Yes, get a good surgeon who is experienced with Head and Neck TORS and A good cancer Oncologist. I was diagnosed with HPV 16+cancer of base of tongue March 2023.
Here is my story....I am 57. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth, Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Now the good news... As far as today one year out. I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains. You should also ask about the NavDx Blood test for HPV 16. It will become more important once he has completed his treatment to monitor any HPV 16 cancer activity in his system. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will not be a fun 6 months or so. However, You WILL make it and things in a year will be looking up. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up, go outside more, look at the clouds and stars, etc. You got this. Have Faith.

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Replies to "Hello . First off this a very winnable battle. In particular, if this is HPV +16..."

Hi again everybody, and thanks for your encouragement and support. To update: Saw my ENT yesterday, showed me the CT scan with an enlarged tongue (a "fullness" she called it after scoping me), and the nearby lymph node involvement. Did a Biopsy on the node, said she hoped for an answer by Friday. Also put in a referral for a PET scan, asked that it be done on or before August 6th. So I've got the phone glued to my hip waiting for phone calls. So we'll see. Despite your encouragement I am still freaked out about the idea of surgery, going to sleep one moment and then waking up without a tongue at all. I guess we'll see what the oncologist has to say about that, TORS, Proton radiation, etc. etc. I will leave it in the hands of the professionals and not the internet, what a weird concept 🙂 And for now I have decided to not be a whiny little bee-otch, as my stepdaughter would say, and get out of bed because there will no doubt be days ahead when I won't be able to get out of bed. I will let you know what happens, thanks again!