Newly diagnosed and scared

I am 2 years out with same diagnosis. I was treated with radiation and chemo. over a 7 week period. That radiation keeps working for another 2 months past that. You will gradually get stronger and you will begin to feel better.
I can tell you it was a tough experience yet with God’s help and He does show up in trials, family ,and a great Mayo team you will get through it.

Welcome to the group that nobody ever wants to join. Lots of great folks on here with good advice to share. I am 14 months past tongue cancer and reconstruction surgery at Mayo Rochester. My Chemo (Cysplatin) and radiation was 7 weeks and ended in January. I had a bunch of lymph nodes removed as well. The best advice I can give you is to be patient. Mostly with yourself. Set you sights on healing and give your body time to do it. Pay attention to what your docs, nurses and OT tell you about healing your skin and scars. Use all the techniques they teach you about managing your lymphedema. Let the experts do their work. Your work is healing. Show up to all your appointments, radiation and chemo. They maybe in charge of your medicine but you are in charge of healing. Eat good food and drink good clean water. Use a food tube if you can't. I healed fast and my docs and nurses were amazed but, I did the food tube early on in my treatment. Stay moving. Stretch and exercise when you can. Stay positive. I found it easier to look at it day by day. When I came home from treatment I knew all I had to do was get in the car the next day. I didn't count to treatment days. I went day by day. All this worked for me. My nature is to wallow in fear and self pity. So I knew I had to have a new mindset for cancer. Also, and this I learned from having MS for 28 years. I don't battle disease. I don't fight. I don't let the disease set a negative tone in my brain and heart. I deal with it. I set a positive course and move toward a goal of healing based on what my expert team teaches me.
I know you are going to be fine. Getting from here to there will be a challenge but you will be ready. You are stronger than cancer. And you will unlock new strengths you have inside already.
Peace and care to you this holiday season.

I was diagnosed with the exact same thing last February. I underwent 35 rounds of radiation in six weeks from May to June 2024. First couple of weeks, I didn't notice any side affects. After week 4 my mouth and tongue were feeling burnt. By the end of treatments I had pain on the roof of my mouth and tongue as well as overall fatigue. I was taking Tramadol and Gabapentin for pain. Contrary to my doctor stating the worst of the side affects would peak 2 weeks after completion of radiation treatments, my side affects peaked at about six weeks. Drinking anything (including water) felt like razor blades at the roof of my mouth. Eating was very painful. Dry mouth is prevalent - you will be figuratively tethered to a water bottle.
Initially could only tolerate Cream of Chicken Soup (no salt) and that was with "magic mouthwash" to temporarily numb the pain. It was about 12 weeks after radiation treatments that I felt I turned a corner and stopped the pain pills. I lost 40 pounds, but I refused to go on a feeding tube. Glad I didn't!
I am now six months post treatment and have gradually added different foods back to my diet. I'm eating about 80% of what I used to. I cannot tolerate anything spicy as my tongue is still sensitive. Two months ago I resumed my usual fitness routine - 3mile runs four times a week and have gained my energy and stamina back. Exercising and nutrition for me is the two most important components of recovery.
I still have dry mouth, taste is coming back but still off. I developed Lymphedema on my neck/chin, which is swelling because of fluid buildup -my lymph nodes are not draining properly due to the radiation. I do some specific head/neck therapy exercises to reduce the swelling and it has greatly reduced my post radiation "turkey neck". Excess mucus is still a problem, although it has substantially reduced. I still rinse my mouth multiple times a day with warm water mixed with salt and baking soda.
Also, take meticulous care of your teeth as they will be more prone to cavities because of the lack of saliva. I use a prescription flouride toothpaste morning and night. Additionally, I floss and rinse (with warn water/salt/baking soda) immediately after I eat anything during the day - even a small snack.
Your recovery will take time, but everything gets better with time. Above all, keep a positive attitude and follow your doctors instructions/advice. Good luck!

Thank you.

When I was diagnosed many many people offered up all sorts of help from logistical to spiritual. And when we asked people for help they were there in a heartbeat. Accept help and support from others. In addition to helping you get things done, it is so heartening!

I agree with what others say. Let your care team be experts at what they do. And control what you can control which is mindset and lifestyle, doing your lymphedema management and swallow therapy, etc. You may like the free program called Anti Cancer Lifestyle Program. I’m doing that program now. Even though I am generally familiar with the content, the reminders it gives me help me live the way I want to live to heal.

Also, live day by day. Don’t dwell on what tomorrow may bring, how long treatments are, how long they’ve been. You can always accept and manage and even embrace the current moment. Trying to deal with the whole journey all the time is too much. Mindfulness
Practices really helped me with this.

For me, it helped me to accept that this is my life now and I just need to live it the best I can.

Hello . I was diagnosed with HPV 16+cancer of base of tongue and Neck March 2023. Stage 4. The good news is you are correct it is very treatable with high success rates! With Stage 1 your Doctors may only suggest surgery to remove the cancer and that is all. Or they may elect radiation only or a combo with Chemo. Trust in your team and I am sure they will help guide you to the correct decision. If this is any help here is my story....I am 58. 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 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). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 18 months out of treatment 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. My NavDx blood work continues to show no sign of cancer.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort. I take the time now to thank God every morning when I get up. You got this. Have Faith

Oh my. I’m getting ready to begin the proton radiation and they didn’t explain the neck lymphadema to me.
Did you have radiation in your neck as well?
I have that toothpaste and will pick up the mouthwash closer to beginning.

I will be also on Cysplatin which they so far are saying they don’t want to do a Petscan, only CT scans of my head/neck. They “feel sure” it spread to there. That there’s no way microscopic cells did not spread. To me, wouldn’t those cells show up on a petscan???

Thank you.

Thank you so much for sharing your story. Because of where the tumor is, they believe chemo/radiation will be most effective and (I suppose) more humane. I just turned 60 yesterday, and hearing from someone close to my age who has beat this gives me hope.

Some people get lymphedema and some don't. I had a few affected lymph nodes. The radiation was primarily for my tongue and tonsil, but the radiation angles have both an entry and an exit which can affect the lymph nodes on your neck anyway. It made the skin on my neck very red, dry and irritated. I used CeraVe moisturizing cream for that. It was gone in 10 days.
I had a Petscan before treatment. It is more precise gives a better picture of where cancer cells are. I would insist on the PetScan prior so they can more accurately assess your treatment needs.
Also, the radiation burned my goatee off and also the hair on the back of my neck. Had a odd looking hairline. My goatee started growing back after 5 months. Crazy thing is my formerly all grey whiskers regrew mostly brown. Pretty wild!
Good luck my friend. It will be a miserable few months post treatment, but better than the alternative.