Newly diagnosed and scared: How did you cope?

Posted by Julie H @jkhagen1, Dec 20, 2024

Hi folx, my "Thanksgiving Eve" tongue biopsy revealed stage 1 HPV squamous cell carcinoma. I understand it's treatable and the 7 weeks of chemo/radiation sounds really scary. How did you cope? I am confident I have a great care team, just want to hear from real people who might have some wisdom to share. Peace be with you.

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sandy8043 | @sandy8043 | Dec 21, 2024

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.

davehutsell | @davehutsell | Dec 21, 2024

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.