Do I Dare Ask?

This is pretty spot on for me too for the swallowing difficulties. I had 35 rounds (7weeks) of Photon radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 but no surgery.
Unfortunately, I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.

God bless,
Rob

Hello, @niml. I am a bit confused. If your swallowing problems just began, why have you been on a feeding tube for one year? This is the opposite of the way it usually works after throat-area radiation! The longer you stay on the tube, the more likely you will have trouble going back to normal eating. As the saying goes: "If you don't use it, you lose it." When you say you have physical therapy, are you referring to the tongue/throat exercises which are VITAL to regaining your throat functions after radiation? Have you had a swallow-study performed to determine why you are having such difficulty swallowing after one year out? These questions need answers! Best Wishes to you.

Yes. I have had a swallow study done . My epiglottitis only works partially. I have had in total 69; radiation in the last 4 years . I had nasalpharangeal cancer in 2021 and with 39; radiation and 8 chemo and 30 radiations with my tongue cancer. The first cancer go around I was never thought or told about certain exercises to do for radiation fibrosis and had no problems. It is just this last surgery that the trouble swallowing started right away. My tongue has been completely rebuild and has caused that problem even with exercises so the need to be on a feeding tube has stayed with me.. The doctor did warn me that could be the case. I have and still am trying to do my physical therapy and speech therapy a year after my surgery. I got bit of a late start on all those exercises. .

Don’t give up!
I had my feeding tube for nearly a year and could barely drink water.
I stopped the speech therapy early on because it was a waste of money and she really had no idea what was going on with my throat.
Stay focused and you’ll know when it’s time to eat by mouth, at least I did.
One day I just woke up decided to eat oatmeal and though it was still difficult I managed. After a few weeks and eating 3 oatmeal meals a day I told my oncologist I was ready to have the tube removed. He suggested I have my port removed at the same time so he got me an appointment with my surgeon and he got it done.
Best wishes
Jody

Oh thank you so much you gave me hope. I will see my GI doc on Tuesday. We are thinking of doing an upper GI as my esophagus has shrunk at least that's the thought for now. So onward I go and hope we come to some conclusion. Meanwhile I do not dare to eat or try anything. I have tried get some yogurt down with the help of water. Everything gets stuck in the back of my throat. My epiglottitis is not working on all cylinders so to speak and doesn't always open up to get the food down . Fingers crossed and maybe some relief one of these days.

Thanks,
That sounds encouraging.

Thank you.

Hi Al, I'm 4 months post-treatment. I'm still struggling a bit with swallowing, but I'm eating tacos, gorditas, burgers, and pizza... with a few modifications and patience. Right now, I'm super-sensitive to spicy and acidic foods, and of course bread/crust/tortillas are still quite challenging. For the burger (I can eat 1/2), I just did the bottom bun and added smashed avocado & mayo (not my typical burger topping, but hey! It's the first burger I've had in months and tasted amazing). I live in San Antonio (arguably the taco capital of the US) so fillings that work well are carne guisada (stewed beef in gravy), potato, egg & cheese (with really mild salsa), picadillo (mild ground beef & potato mixture), bean & cheese. I add mashed avocado/mayo to lots of foods. For pizza, thin crust and remove the outside harder crust for now. For any of the Tex-Mex, I'm also adding crema or sour cream. My speech therapist suggested making sure I smell my food before each bite, and it really does help me experience a little more taste. I haven't tried fried chicken yet, but I made chicken fried steak for dinner last night (lots of mashed potatoes, gravy, and summer squash). Fried catfish (dredged in cornmeal) with tartar sauce is tastes great and it's one of the easier things to swallow. I hope this helps you and also gives you hope. You didn't say where you are in the treatment process, but I wish you peace and good health.

They warned me to continue eating so as not to lose my ability to swallow, but I found it most difficult and probably didn't comply very well. Fortunately, they removed my feeding tube within a few months, and I was able to struggle through the early stages. I still have to be careful as I still deal with dysphagia, so I drink a lot of water, between 1-2 gallons/day. When you are first experiencing all of this, it's frightening because of the unfamiliarity. There were few answers to my many questions back in the beginning. In reality, one just needs to focus on what needs to be done to adapt, one day at a time. Sadly, incidents of head and neck cancer have more than doubled in the last two decades, but it means there is more attention paid to the aftermath. I've learned a lot just by joining this Mayo group. Good luck.