If I may join the chorus of encouragement as you start your treatments, hope things go as well as they can. I had similar timing and ramp up to diagnosis, a bit different situation: a tonsil tumor and involvement with soft palate and one adjacent lymph node. Initial NAVDx through the roof. Straight into chemo and radiation. I’m three months out and am returning to life as it was, a step at a time. Past the pain, appetite and ability to eat and swallow pretty well restored. Ability to taste has been slow to recover, but there’s enough to make food interesting and optimism for recovery. Taste went away two weeks into treatment, mouth and throat pain followed shortly thereafter. I lived on high calorie Boost, six a day, thinned with coffee (decaf after noon). The thick liquid coated my throat and sustained me, though it was love-hate. I did not need a feeding tube and lost 10-15 pounds. I think recovery has been easier as a result, but I was sure down and out as the cumulative impact of chemo and radiation made themselves felt. My heart soared with a clear follow up NAVDx, looking forward to PET retake in a week or so. Now settled into swallow and neck muscle exercises, feeling pretty good about life. Hang in there.

My journey started in January 2017 with nodes removed (41) with 2 being cancerous. Radiation only for 35 sessions and a feeding tube for 7 months. Lost 55 lbs but needed to lose some weight but not that much. My diagnosis was cancer of "an unknown site" but the doctors figured it was under my tongue in the back so they concentrated the radiation to that location. The first 5 weeks of radiation was simple but the last 3 is when the side effects kicked in. I live only and needed help so hospitalized for last 2 weeks. The feeding tube was the best decision I made. I needed the nutrition it provided. The journey has its ups and downs BUT you will make it. Just listen to your medical team they have the knowledge to make you well again. I am 9 years out and I still do 6 month check ups. Also, this website helped me survive the tough times so I suggest you continue to be on the site. God bless you and hang in there.

First off please know that it may be a rough journey, but YOU CAN DO THIS!!!! My journey started October of 2023 with what I thought was a swollen gland on the left side of my neck. First trip to regular doctor, then to ENT for biopsy and it came back cancer, SCC caused by HPV 16+. It was in the base of my tongue and several lymph nodes but only stage 1.
Met with Doctors at Mayo in Rochester and they recommended 35 radiation sessions and 7 chemo sessions. Good news out of a bad situation is the treatments had a pretty good record of a cure. That was the most important part for me to remember to be able to get through the treatments, therapies, and side effects.
I had a great team on my side and they certainly helped me get through this. On your journey if you have any concerns at all let your team members know so they can help you.
What ever you have to go through just remember to play your long game and focus on getting this behind you and getting better.
I kept a daily journal that makes interesting reading now, more so as proof of how tough you can be when going through the roughest parts of treatment and realize I CAN DO THIS!!!
Here is wishing you the best outcome!
I just had my 2 year post treatment PET scan and so far I am cancer free!

I'm 2 years out from h and n cancer. You'll be looking back someday very soon. You made a good choice on getting the food tube. I did and I never regretted it. If you get mouth sores from radiation you will be glad you can "eat" without antagonizing your mouth. I say "if" because I only had one and it lasted 2 days and healed. I had dry mouth and used baking soda rinses often. They have various mouthwash formulas to deal with pain. Watch for lymphedema as a result of having the lymph nodes removed. The lymph needs to circulate under the skin....without its nodes it doesn't know where to go and can cause swelling and discomfort. Simple self massage works great. Mine would get bad and my surgeon prescribed professional face lymphedema massage. I also wore a face compression wrap given to me by my OT. My point is, if you have any swelling in your face or neck ask for help to manage it. Cancer care staff are amazing problem solvers. And of course here on "Connect" well, we've been right where you are. Take care. Sleep more during radiation.

Reading from this corner everyday gives me courage. But I want to hear from those that are out of treatment for some years and they are cancer free. What is it that you’re doing to keep yourself safe from recurrence? I need the tips please

Hello Kent . First off this a very winnable battle. In particular with HPV +16. Google can certainly take you down the rabbit hole with negative outcomes. Your odds are extremely good especially with a negative NavDX already! I was diagnosed with Stage 3 HPV 16+cancer of Base of tongue and Neck March 2023.
If this is any help 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. 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 . NO 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 2.5 years out. I can eat and drink about anything I want. My taste buds are about 95% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 95% . I will continue to have a throat scope and CT scan every 6 months for two years. So far no evidence of cancer remains. 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 but you will be alive. You got this!

I’m 73 and went through this two years ago. What helped my weight more than anything was to freeE high calorie Boost and eat it like soft serve ice cream. I was determined to not look sick so my job was to eat 6 times a day. Small meals with good protein. I was exhausted at the end of the radiation period and my mouth was raw. Lidocaine magic mouthwash (Rx) will help numb your mouth. My taste buds have changed but I am slowly gaining a little of the weight back.

@kent8692 I'm so sorry you are going through this. As many above have commented, it's survivable and it's hard. Here's a post I did about the importance of palliative care throughout your journey. I sure hope it helps. I'm about a year post treatment. I feel great. The healing process took about a year for me - and while there are a couple of things that I won't/can't eat, everything else is great. It did feel like losing a entire year of my life (or really, putting it on pause), but I am grateful everyday that I've healed, I am emotionally and spiritually well, and I can enjoy life again. This forum is a gift. Use the search feature when you have questions - you will likely find someone who has been there/done that and lived to write about it. Peace be with you. Julie
https://connect.mayoclinic.org/discussion/the-importance-of-comfort-care-palliative-care/