Diagnosed with squamous cell carcinoma of the epiglottis: Anyone?

Hello . First off this a very winnable battle as Dave remarked. In particular, if this is HPV +16 cancer. 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. It was within an inch of my Epiglottis. Your team may suggest Radiation and or Chemo without surgery depending on the stage of the cancer.
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 . 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 your appetite and everything has no taste. Now the good news... As far as today 18 months 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 continue to have a throat scope and CT scan every 3 months for first 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.

Just had my PET/CT scan last Thursday, just waiting now to hear from my treatment team.

Thank you. I’m waiting to do my PET scan. I guess I’m looking for others who have gone through this and may still be in the process.

Hello . First off this a very winnable battle as Dave remarked. In particular, if this is HPV +16 cancer. 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. It was within an inch of my Epiglottis. Your team may suggest Radiation and or Chemo without surgery depending on the stage of the cancer.
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 . 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 your appetite and everything has no taste. Now the good news... As far as today 18 months 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 continue to have a throat scope and CT scan every 3 months for first 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.