Meet others living with Head & Neck Cancer: Introduce yourself

Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery on July 31st to remove the tumor. The surgeon also removed my right toncil. The surgery was quite successful and I was givin the option to simply go home, as the surgeon felt very confident that he got it all with good margins. Of course, then I got the "insurance" discussion and did opt for 2 weeks (2x/day) of low intensity radiation with one low dose Chemo/week.
My last treatment was on September 8th 2023. I could never have imagined how difficult the first 3 weeks of recovery would be. I was so sick and in so much pain that I just wanted the end, however that was to come. Week 4 started with a little bit of hope. Weeks 5 and 6 were getting better and i started to feel physically better. Then, was the worst emotional and mental crash/attack. Anxiety way off the charts with panic every single day for about a month. I found myself in another very dark version of hell again. Thankfully, Mayo came through and prescribed some medications that has taken a huge edge off. My very 1st 3-month check-up in 3 days!

Hi Jon @zeip8288 and welcome to this Head and Neck group. Your story strikes a chord with not only myself but many of us who have had the misfortune of cancer treatments. So I guess the surgery was just too easy so you may as well have a little Chemo and Radiation? Just kidding of course. Glad to hear you are on the uptake and doing better with time. I would suspect you will have issues for a few months to perhaps a couple of years but we learn to live with them and then they seem to go away eventually.
The effects from radiation enlightens us to contemplate what survivors of nuclear bombs or bomb tests must have experienced back in the day. Physically ill as well as pain, taste, digestion, etc all seem to be issues for most.
I'm sure the check-ups will give you pause but try not to think the worst as most likely the news will be good. This will go on for years for most of us and any malady or pain you will for years think the worst, only to find out you have an illness like anyone else and it goes away. I wish you well. Keep in touch on this feed and your input to others will be greatly appreciated.

Thanks so much for the response. I now realize that there’s just nothing that can prepare one for what I'm experiencing. Physically, emotionally, mentally and spiritually. All aspects of my life have been significantly impacted. Of course, I'm singing to the choir. Physically, I really didn't think I would survive the other worldly pain and sickness while recovering. After about 4 weeks in, I started to feel a little bit better physically. Then, I crashed so hard emotionally and mentally. Intense anxiety and panic off the charts! Everyday, 24/7. Damn close to debilitating and incapacitating. This went on for a month. Everyday and every second feeling like I was going to completely lose control, flip out, go insane. It was basically one second at a time. I've never been so scared almost every waking moment.
Anyone else experience off the charts anxiety and panic during your recovery? Mayo, thankfully, prescribed some medications that relieved most of the anxiety and panic and is allowing me to sleep.
This has been like a horrible, pain ridden nightmare. It's a damn good thing that I never completely lost all hope!

I don’t want to sound preachy, but I don’t think I ever lost hope because I started praying. I always thought in my head that I would fight until my last breath, but I am also certain that God gave me that strength. Now that I’m cured I say thank you for that every night. Try praying. It can’t hurt right?

I also had SCC at the base of my tongue, and was treated with chemo and radiation, completing treatment in December 2020. In most cases, the lack of taste buds is temporary in nature. When I was being treated Mayo's dietician kept me focused on protein (120 grams per day) and calories ( 2500 per day).

I understand how hard it is but I am not sure recipes are the issue. I believe you just need to grind through these few weeks and wait for your taste to return. Keep focused on the protein and calories and most importantly, getting rid of the cancer. For me, my taste never returned and I have come to realize that while food has a huge social aspect, but eating, at it's basic level, it is really to sustain life. The good news is I can eat anything I can swallow!

Good luck in your treatment.

Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery on July 31st to remove the tumor. The surgeon also removed my right toncil. The surgery was quite successful and I was givin the option to simply go home, as the surgeon felt very confident that he got it all with good margins. Of course, then I got the "insurance" discussion and did opt for 2 weeks (2x/day) of low intensity radiation with one low dose Chemo/week.
My last treatment was on September 8th 2023. I could never have imagined how difficult the first 3 weeks of recovery would be. I was so sick and in so much pain that I just wanted the end, however that was to come. Week 4 started with a little bit of hope. Weeks 5 and 6 were getting better and i started to feel physically better. Then, was the worst emotional and mental crash/attack. Anxiety way off the charts with panic every single day for about a month. I found myself in another very dark version of hell again. Thankfully, Mayo came through and prescribed some medications that has taken a huge edge off. My very 1st 3-month check-up in 3 days!

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don't forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

Squamous cell oral cavity head & neck cancer