Hello Cancer Survivor Spouse,

Welcome to OCF forum and congrats on finishing surgery and radiation. Both difficult steps. I am sorry to hear of the continuing issues. Everyone responds differently and no cancer path is the same. But, here is what i can offer. I was stage 4 and had the right half of my tongue removed, rebuilt my tongue with flesh and artery from my arm, all nodes on the right side of my neck removed, cancer in one node, and follow-on 60Gy of radiation over 6 weeks about 3 years ago.

I had to use kids toothpaste for quite awhile and find flavors that didn't sting/burn. It still hurts to use regular toothpaste but I can handle it now. I really can not use anything mint or mouthwash, etc. Your husband's situation sounds worse than this. But, curious if has gotten any better. I had to learn to judge improvement in weeks and months after radiation treatment. Recovery is long and slow. I have also had lots of cavities, gum recession, crowns, and root canals as a result of radiation.

My tongue is definitely different but generally no real pain there. I do notice my speech changes and that the shape of my old and new tongue is changing slowly over time. It seems my old tongue is trying to compensate for the lack of muscle in my new one.

Glad to hear they are analyzing this further. Wish I could offer more insight maybe others here can help with some of the other issues. Stay safe and keep the faith.

Nels