I've only made a couple of posts on this forum before...a couple of years ago, when I was first diagnosed with SCC of the tongue. Luckily I survived and I'm now about a year and a half cancer free.

Obviously it's been a long road and I'm still having troubles related to my illness, even after the cancer is gone. I've never met anyone else in real life who had this particular disease, and though I've known of people who had cancer, I've never known anyone my own age who has. (I'm 27 now, was 25 when I first got sick.)

I started seeing a therapist and a psychiatrist for help dealing with the depression I've been suffering as a result of all of this, and the therapist suggested I try to find people online who might be able to relate. One of my biggest struggles is eating. I no longer have a PEG tube, and I'm within a healthy weight range, but my diet is extremely limited. My taste buds have been incredibly sensitive since I went through radiation, and since I had half of my tongue out, I have limited control with regards to manipulating food in my mouth and swallowing without choking.

I was just wondering if anyone could suggest foods that have worked for them, just so I can get an idea of what other people with similar difficulties typically eat. I'm very careful and try to take a multivitamin daily as well as at least 1 nutritional shake (though I dislike them), but I'd really like a way to introduce vegetables back into my diet.

OC is not one of the most common diseases, especially in patients who are under 30. At OCF events, I have met many survivors who have been diagnosed young, before they turned 30. I also know of several who were under 20 when they first got sick.

Check out the link below for the list of Easy to Eat Foods. This has many options for patients who are relearning how to eat.

Best wishes with your continued recovery.


Easy to Eat Foods

Hello Kazy. I have met only one young person who had this cancer. She found it very difficult until she found another young person online who had been through the process and could understand and advise her. There have been a few on this site.
I find eating hard too. Liquids and shakes are fine but chewing and manipulating is very hard. I eat a lot of ice cream and custard (not so good for me) but also enjoy vegetables. I mash them up with a potato masher and cover them with gravy or white sauce. I'm not a great cook, I buy packets of gravy. I'm not too fond of porridge but I soak oatmeal overnight with some raisins and fruit, then microwave it briefly, it tastes really good, like a sort of muesli.
Smoothies are an opportunity to experiment. Nut and soya milks are cheap here at the moment and I love coconut milk. I did read however that these milks are not very nutritious. Not sure of this. I have finally acquired a powerful blender and make sure I add Brazil nuts (selenium) as well as adding the odd spinach and kale leaves. Every couple of days I force myself to down a spinach smoothie.
Meat is hard. I don't like purees. But frozen pasta meals have very fine ground meat that I can swallow. My favourite is Weight Watcher's Beef Cannelloni. Eggs? I just don't like them now but try to have a few a week.
How does the taste bud sensitivity manifest itself? Do spicy things burn?
Good luck. We are here to support you:)

Hi Kazy - So glad you found this great place to be. My son also had SCC - his was Stage 2 and he's been cancer-free for 8+ years. Just recently he told me he had seen more improvement in his taste buds and they had already been around 90% improvement for a long time. Everybody is different in their recovery so you never know when you will see some unexpected and happy change. Right now, he likes spicy stuff and has to add more hot sauce to things than he used to to enjoy them like before his SCC. Sounds like you are doing some good things in getting some therapy help and making good diet choices. Sharing your recovery concerns makes it a lot easier to accept what you need to do to get to feeling better. After my son's surgery to remove part of his tongue, his doctor told him the tongue would spread out eventually to fit the space but it did take a while of practice before he could maneuver food around and swallow without choking but it does get better. Stay with us, Kazy - there are lots of knowledgeable and compassionate people here who understand what you are going through.

Thank you, I'll check the link out.

I've never been picky in my life until now, so it's kind of a weird thing for me to be SO picky. But I am. Anything remotely spicy is agonizing. Even tomato sauce is too much. Anything really sweet or salty is overwhelming and makes my mouth burn.

I was eating mashed potatoes and grits for about six months, and then got to where I could eat rice if I mixed it with water, refried beans, and a special homemade salsa with NO added spices, combined with sour cream to take away the acid of the tomatoes. One of my problems is that I'm not a good cook (never have been) so when I find something I like, I stick with it for EVERY meal and burn out on it. Can't eat any of those things I listed any more without gagging because I ate them SO much.

Right now I primarily eat alfredo (has to be a certain kind--not all preparations work; I really like the Zatarain's frozen ones even though they taste kinda spicy to me, and this one kind a restaurant in a nearby city makes), and Cheez-Its (I can chew them with water and sort of...let them melt in my mouth, if that makes sense). Oh, and lots of ice cream, haha. No meat at all--I wasn't a big meat eater before and now the taste/smell throws me off, as well as having trouble getting it down without choking. Bleh.

Gonna try to work in some spinach, though. I used to really like it and it's pretty soft. Thank you for the tips!

It's very encouraging to hear about your son's progress. One of my primary fears is of the cancer returning. So that gives me a lot of hope.

Sorry to hear that you're still having trouble eating. I was lucky in comparison and can eat almost anything once again, although I occasionally have trouble swallowing and I eat slower than I did before the surgery.

I use a masticating juicer to juice vegetables and supplement my diet that way. It was something I bought even before I was diagnosed & eventually had my subtotal glossectomy, because I needed to find a way to add more vegetables to my diet. Drinking a nice green juice occasionally, makes me feel a lot better. I am not one to advocate using this for a full on diet change or to go on a juice cleanse, but I have found it helpful to improve my diet.

Kazy, I totally identify with burning out on certain foods. I used to love pumpkin soup but after a few months I was so sick of soup I couldn't look at ANY soup. Now I'm going back to it. Pumpkin soup with buttered wholemeal toast soaking in it is quite satisfying. Sometimes I go super-healthy and actually put a bit of finely chopped parsley in it. The Weight-Watchers cannelloni with sour cream is surprisingly gentle on the mouth. I suppose they artificially sweeten the tomato sauce but whatever evil things they do to it, it's one thing in the world that tastes delicious to me. (I buy wholesome looking soup in those plastic bags when it is on special. If I make soup I end up throwing half of it away.)

There are a couple of things that I have used that I didn't see mentioned. I don't know if you like fish, but even just a week or two after surgery I was making poached salmon and it is so soft and moist, it was so easy to eat. It is also super healthy with lots of protein. I prefer the thicker pieces rather than the long thing ones. They poach better. Just put a bit of water and OJ into a small frying pan, let it get real hot, place the filet in the liquid, cover, lower heat and give it about 10-15 mins for one filet. You can cut it down the center to be sure it is cooked thru, but if you catch it right when it is done, it is really good. I put some soft butter or olive oil on it,finely chopped cilantro and garlic powder prior to putting it in the pan. That is one of my favorite things.
The other thing is something I learned to make here in Kentucky. We didn't have it in Brooklyn. They just get a bag of dried pinto bean, boil, then turn down heat...throw in a piece of a ham hock or some bacon (it's gotta have SOME flavor) and let it cook slow all day. Don't put too much water to start, you can always add as needed. When it is done, I put about 75% of the beans in the food processor and mash them up, then put them back in the pot. You can puree all of them. You can add a bit of salt if you need to. It tastes great and it is lots of protein.
My last suggestion for now is french toast. I would make it with really soft white bread. It was great a few days after surgery cause it was really soft, warm and sweet. I would spin some soft butter and jelly together in the processor and put that on it with a bit of pancake syrup.
I use my index finger to push food to the right side of my mouth as needed. Hope this gives you something to try! Good luck with everything! Denise

Hi Kazy, It looks like you are also more than a year out of treatment. I still have the same problems with the burning. Added protein powder & milk to my Boost. Scrambled eggs if not dry can work while drinking water which I can finally do without it burning. This is a plus because my saliva glands are shot. Oikos triple 0 Greek yogurt, vanilla with a little honey. Kozy shack rice pudding. One problem with a diet like this my cholesterol is now up. I think it will take awhile to get used to tastes and textures again. Having any problems opening mouth wide?

Hi Kazy, II hope I am not talking out of school, but I know of a brave young person whose name and username I will not divulge who had a total Glossectomy. This person was 33 when tongue cancer was detected. This person has successfully fought hard to regain a normal life as possible. This person is working, is a parent, and has trained hard to eat as well as possible with no operable tongue. This person has a kick-ass attitude who has overcome so much at such a young age. This person has helped and supported many, many people in this forum including myself for which I will always be grateful. I had similar surgery nearly 12 years ago but I was 68 when diagnosed. I am truly sorry you are so young to have gone through this. I was on a peg tube from 04 thru 07. I was able to swallow liquids from 07 thru 13. Got aspiration pneumonia in Feb 14. Should have gotten a barium swallow test (MBS) when I started losing weight a year earlier. I strongly advise anyone who hs compromised swallowing to obtain a MBS when any symptoms such as weight loss and shortness of breath occur. The other folks in this post have given good helpful advice. I pray and hope for you to have a great life and don't give up. Things do get better!
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Jim Haucke
Tongue ca dx 9/03. Two surgeries 11/03 and near total Glossectomy 2/04. 36 radiation treatments 3/04 thru 5/04. Peg from 2/04 to 10/07. taste buds intact with liquid oral feeding with flavored nutritional drink, nutren 2.0. Wt loss 2013 with pneumonia 2/14. Peg inserted. Hope to get swallow therapy, get a MBS, and if passed, carefully resume oral feeding.