Hi I'm Nancy. I first had tongue cancer in 2001. It was on the tip. It was removed and I had radiation just on my neck for the lymph nodes. In 2016, I had two lumpectomies for breast cancer. Life pretty much went back to normal after those two events. Then in 2018 I had a reoccurrence of tongue cancer near the first one. That time I had a partial glossectomy and heavy radiation to my mouth and neck., This left my mouth severely burned so that even years later I could not eat many foods without the burn. Early this year I had my lower teeth removed (I already had a denture on top) because of the receding gums and constant infections. I knew the risk and yes, I did have a lot of bone loss. I found a denture maker who was able to work with me and although it was going to be at a great expense, I was looking forward to it. Just when my gums were healed enough to start on the dentures, I discovered something at the base of my tongue. It was cancerous and on July 22nd, I had a Free-flap surgery where they took a graft from my arm to replace tissue in my mouth and then another graft from my thigh to cover the exposed area on my arm. I was in the hospital for 19 days with a feeding tube in my nose and a tracheotomy. I am now struggling with the fact that I was not prepared for how life changing this has been. I did not know that the flap would go over my whole tongue and affect my speech and swallowing. My speech and swallow doctor says this is probably my life from now on. At this point I have no teeth in my mouth, and it seems the doctors are discouraging me from getting even an upper denture. The lower is not possible as they had to cut the cancer out through the gums to the bones. I will be on a liquid diet for the rest of my life it seems. I would really like to hear from anyone who may be going through something similar as I really need some encouraging support right now.

Things moved so fast.

Told it was cancer on 7/30, biopsy confirmed on 8/7.
Initial oncology discussion 8/14.
Surgery scheduled for 9/22. Removal of 4 teeth, part of hard palate, reconstruction with skin flap from forearm.

It goes without saying, I'm worried/scared.

Hello Goodpn,

Welcome to OCF and I am sorry to hear of your challenges. My experience was the tongue took a long time, many months, to come down to a manageable size. It was weeks before I could even touch my teeth back together. Everyone is different but I was able to get off my nasal feeding tube before radiation. But, eating was hard. I ate soft foods, like you have listed, for months and it would take me a long time to just manipulate and chew a bite of anything with structure. Radiation added a whole new challenge - some swelling, sores and funky flavors. Flavors were the hardest. By the end of rads, most foods tasted horrible. I focused hard on the ones that I could still stomach. Some tasted fairly normal like scrambled eggs and green beans (say whaaat? I know, green beans!). Sounds like you have a vitamix (or similar). I would blend all kinds of simple stuff together in there. Found adding avocados to almost anything, like vanilla ice cream, worked in the blender to add some healthier calories. Flavors come back after rads over the months and years. I am five years out now and still notice some improvement in spice levels. Spicy food ended up being the hardest/longest to come back. Today I order the least spiciest on the menu and still sometimes cannot manage it. Liquids were a different challenge. I just kept practicing in small sips all the time. Eventually, I learned how to drink fairly well. But, I still can not do a milkshake through a straw. I can do water or liquid through a straw now. That took awhile.

Upshot, I had to learn to be much more patient with myself than ever before in my life from an injury/physical challenge. I suggest journaling - both written and video. I would get frustrated thinking why hadn't I come further with my speech? food?. Then, I would go to my journal, watch an old video of myself speaking, etc. and realize I had improved more than I thought.

Please keep us up to date on your progress.

Blessings and peace,
Nels