Saying hello and a question or two or three

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.

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!

RoboLobo Update: HPV-negative, unfortunately. A bit of a mystery due to my never smoking and barely drinking. I will probably start meeting with the oncologists next week, get my PET scan, and go from there. Will probably still insist on chemoradiation upfront prior to any surgery, still can’t bring myself to that place yet. But not giving up either. Thanks for your support, it means a lot to me!

Thanks for keeping us posted. Will you still have the PET scan this week?

Waiting on insurance approval for PET scan hopefully tomorrow. If so chance of scan itself Tuesday or Wednesday (realistic? Nuclear Medicine folks say they’re not too backed up now), in time for consult with radiation oncologist on Friday. That’s the plan, at least. Assuming we go that route, can anyone enlighten me on what happens next? Some sort of prep, I assume? Also, what do you think of me continuing to work, is that a possibility? I think I read that the first two weeks aren’t so bad, then it hits you like a ton of bricks. Fortunately I learned good stuff about the FMLA and using my accrued time off, so I don’t necessarily have to work, but I am curious. Thanks!

Hi robolobo, For a PET scan, you get to drink this lovely drink of fluid which contains a bit of radioactive material. I understand occasionally the same can be administered via IV but usually it's a cocktail to enjoy. Then you get locked away for about 30 minutes whilst your body absorbs all the glowy particles. Finally the scan which takes about twenty minutes. This is followed by drinking of water at home and sleeping on the couch (away from folks) for the night. Easy-peasy-lemon-squeezy.
Now for the radiation: You first will get a CT or MRI to determine precise locations. Then you get fitted for either a mask which attaches your head to a table or in some cases a small target tattoo is marked on you for targeting. Either way, that's just the preliminary stuff.
Radiation therapy is often five days per week and takes roughly twenty minutes in the vault. There may be some waiting time prior but once you are done, you are heading back home or work unless the Oncologist wishes to chat you up for a moment. The first two or three weeks are generally tolerated quite well by most. You may get what seems like an upset stomach although in reality it is more or less radiation "poisoning", which can be controlled with mild meds if necessary - over the counter meclizine for example.
After this point it can get a bit rough. It very much depends on the patient and the exact treatment. Many folks opt for a feeding tube in the last couple weeks and for several days after you are done with treatments. When you take a roast from the oven, it continues to cook for a while if you get my drift. Best thing is to keep yourself hydrated.
As for work or not, I had one employee that didn't miss a day although I rather he would have taken a few weeks out for office decorum. Another missed two months. I myself worked half-days for a while and was out perhaps an entire month. We are all different.
Keep in mind while you are taking this trip down Radiation Road, we are here for you. You can and you will get through this. It will not be easy. It will not be impossible either. Courage!