Hi. I had squamous cell cancer removed from the floor of my mouth in November 2019. I also had 10 lower teeth removed. After surgery I had 30 days of radiation. In June they discovered one of the brackets they had put in to hold the fibula bone in my mouth had a crack in it it They had to replace it on July 10th. I am back on soft food diet It has pushed back teeth replacement. The good news is desire to eat regular food is finally returning. The bad news is I can’t eat it. How do teeth impact eating and swallowing? How long can I expect What I will have for taste buds to come all the way back? I only have 4 teeth on the bottom. 3 on one side 1 on the other.

Hi Andy,

Loosing teeth shouldn't affect your ability to swallow, you just need to be careful with firmer foods as they may be tricky to chew into smaller pieces. My ex bf, who lost most of his teeth, could eat well, he just struggled with corn on the cob, tough meats, nuts etc
It might be worth eating soups, mashed vegetables ( with lots of butter and some cream), steamed fish etc for now, just to get used to your new mouth. I don't have a tongue but have some more teeth, but yesterday I managed to have a slice of very buttery toast to go with my soup. I dunked a small slice of toast in the soup, bit that piece off, chewed it and moved it to my teeth with my finger (and to check that it was mushed up) and then had some more soup to swallow it down. I couldn't have done that 4 months ago. It all takes time and experimentation.

Tastebuds returning varies from person to person. I could taste some strong foods (cheese, coffee, lemon, orange and chocolate) 2 weeks finishing RT, the rest are slowly returning over 9 months later. Some people's buds return quicker, some slower, some not at all.

Good luck on your food exploration

Welcome to OCF, Andy! Congrats on finishing your treatments and the return of your appetite!!!

One of the very first things you will learn about OC (it actually applies to all medical conditions), is that everybodys different!. No matter how much patients appear on paper to be similar, no two patients will ever be exactly the same due to soooo many variables... its impossible. What one patient struggles with may barely affect another patient even when the two patients seems to be very similar. Every patient will respond to medications, treatments, procedures, recovery, etc in their own unique way. So many variables within a rare type of cancer diagnosis makes it difficult to compare or predict what could happen especially when talking about post surgical recovery.

Have you considered pureeing food? I know its not the most appealing way to eat but you have the flavor of things and it should be smooth where you can eat some things you previously thought you couldnt. I suggest talking to a nutritionist (as well as your doc) alternative eating for people like us who have had cancer making eating normally difficult or impossible. Since you just had surgery 2 weeks ago you are just recovering so you may surprise yourself and do better than you expect.

Even though all patients are different, most patients who went thru rads will begin to notice a slow improvement in their sense of taste around 4-8 weeks after finishing rads. This may come and go for a long time with you only getting the first bite or 2 being tasty then its back to the taste of cardboard. It can be a long road with the sense of taste being very slow to return plus either having an abundance of thick ropey gunky phlegm or an extremely dry mouth so bad that your tongue sticks to the roof of your mouth and is pretty much immobile until you take a couple sips of water. I dont know if its easier having only a couple random teeth or not having any at all. Im certain either way is quite a challenge when attempting to eat after rads.

I just finished writing a long reply to another member who also recently finished rads which you should find has helpful info that applies to your situation as well. Instead of reposting the same thing, Ill give you the link to that thread... Im also including the list of easy to eat foods. These foods should be a smoother texture, a little more bland and are easier to swallow so should be something you may want to try.

Best wishes with your recovery!!!


Link to New to Forum thread for other helpful info

List of Easy to Eat Foods

Thank you so much. This is one of the first honest assessments of what to expect for recovery. My Doctor is very positive ( which is great) but somewhat unrealistic in what she has told me about recovery the past 8 months.

Getting the daily calories in has been a struggle. Having a goal of 3000 seems to work for me.

Have a great day.

Your 3000 daily calorie minimum is a GREAT goal!!! Thats a wise plan many patients do not pay enough attention to. Some patients can take in even more (like 4000 or more a day) and still struggle to keep their weight on. No matter what a patient weighs doctors always like to see the patient maintain that weight while going thru cancer treatments and the long recovery phase. I too struggled during rads and wasnt the best example of what patients should and should not do. I quickly discovered all the kind and wise people here who already went thru the things I struggled with, they really were telling me what was in my best interest to do. During recovery your body burns up calories at a significantly higher rate making extra calories a necessity to help patients recovery phase easier.

Something I made almost daily to help maintain the higher intake was a chocolate/peanut butter milkshake which had a ton of calories per shake. I'll repost my recipe below so you can give it a try. When I cook I dont measure or always go exactly by recipes so the shake is very adaptable and can easily be customized to what each person likes best so they will drink the whole thing.


PS....
Here is a recipe for something I used to make and drink when I went thru treatments and recovery. The shake has anywhere from 1200-2000+ calories depending on how you make it.

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (as with all new or different products used ... check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, let the shake sit for a half hour so it melts a little or add more milk to thin it down to what works for your own personal preferences. Ive also recently discovered something new... powdered peanut butter which can be used instead of the usual big jar kind. Most OC patients lose their taste for chocolate right away and it takes them a little while to get it back after finishing... for some strange reason I could still taste it a little especially in the giant shakes or when drinking ice cold yoo-hoo which helped soothe my very sore throat. Maybe try drinking things that are ice cold, (this always worked for me) it should help with any swelling you may still have?


Best wishes with your continued recovery!!!

Thank you. I tried the chocolate peanut butter shake. Delicious!

I am hoping to be able to try other foods soon.

So many here suffer with so much more but I am really sick of smoothies.

Check with your dietitian that can eat jello. It's a great food to practise chewing and swallowing. You can make it up by replacing the cold water with ensure. Even better if you can get hold of ensure juice plus.

I treated learning to eat like being a small child. At first we are reliant on liquids only, and then ,with time tears and practise, we gradually move to foods. Everything is in little steps. It's frustrating at times, but you'll find a place that works for you.

How are you at making soups and sauces? You can control thickness, add small lumps of cooked potato or sweet potato, soft cheese or even soft boiled/poached egg at the bottom of the bowl to give you texture and a challenge. I'm happy to share recipes with you and guide you through how to cook them to give you maximum flavour. I am in the UK, so will do my best to source similar ingredients for you.

Thank you. I am really just starting back to solid foods. I was on a soft diet since my second surgery to replace the the Bracket holding the bone In my mouth. I go Monday August 10th to meet with my surgeon. I hope to get cleared for regular food though I’ll still be operating with limited teeth on the bottom for quite a while.

Any soup recipes would be helpful. I don’t have much of an appetite or sense of smell. Taste buds are there for something’s not for others

I love the UK! Went to London in 2006 with my daughter. We went to Ireland 🇮🇪 in 2013. (Not all yours 😀). And in 2018 I went to Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 with friends on a golf trip. Stayed in a castle 🏰!

Thank you for reaching out. This forum has been great.

I'm happy to help out.
The UK is great isn't it! I live on the outskirts of North London. It's so lovely being able to be in London (via train) within 30 minutes.

I'll post the recipes in different posts per recipe. I've chosen ones that have a huge flavours, as your tastebuds aren't great.

Pepperoni Pizza soup

Ingredients
2 medium onions sliced
2 red peppers cut into quarters
6 large tomatoes cut in half
6 cloves of garlic cut in half lengthways
2 tbsp butter
1 pack sliced pepperoni
800g chopped tomatoes (2 tins)
3 tbsp mild tomato salsa
500 ml chicken stock
1 ball mozzarella ripped up
150g brie or soft cheese of your choice, cut into chunks
Soy sauce to taste
Black pepper to taste

Method
Preheat the oven to 180c.
Place the tomato halves on the baking tray, cut side facing up. Push half of a clove of garlic into each half of the tomato until it’s covered by the flesh of the tomato. Season with pepper.
Put the quartered peppers, flesh side down, onto the same tray as the tomatoes. Place into the oven. Cook until the tomatoes are soft and slightly shriveled and the skin of the peppers are blistering.


Whilst the peppers and tomatoes are in the oven, melt the butter in a large saucepan. Once the butter has melted add the onions and put on a low heat to caramelise. Stir until the onions are coated in the butter.
Once the onions have caramelised, add in the pepperoni slices to release the oil.
By this time your tomatoes and peppers should be ready, so take them out of the oven to cool a bit.


Add the salsa into the pepperoni and onion mix and stir to coat everything in salsa.
Tip the garlic tomatoes and peppers, plus any juices on the tray, into the saucepan. Stir everything together and turn up the heat to medium.
Once everything has been mixed through, add in the tinned tomatoes. Bring to the boil and allow to simmer for 10 minutes with the lid on the pan.
After 10 minutes, give the soup a good stir and add in the chicken stock. Stir it through and add the chunks of brie, a little at a time stirring through each addition, then add the mozzarella the same way.
Once the 2 cheeses have melted into the soup, take it off the heat and and blitz in a blender or with a stick blender, whichever you have. Blitz until the soup is your desired consistency. If the soup is too thick then add some more water or milk to thin it out.
Season to taste with soy sauce and black pepper. Serve with a lovely dollop of sour cream, or plain yogurt.

Garlic Roast Potato soup

Ingredients
2kg roasting potatoes, peeled and cut into similar sizes
2 large onions cut in half, leaving the outlet skin on and the root
1 large bulb garlic
5 tbsp of duck or goose fat
300ml single cream
2tbsp butter
1 litre chicken stock
2 tsp Marmite/Vegemite/Yeast Extract Spread (not necessary, but tastes nice)
Salt and Pepper to taste

Method
Place the potatoes in a pan of salty water and bring to the boil. Reduce to a simmer and cook until the potatoes are nearly falling apart. Drain, give a shake to fluff up the edges and leave to cool. As they cool down, cracks appear in the potatoes. These cracks will allow more oil to be absorbed and create those glorious roasted bits that taste so good.

As they are cooling down, preheat the oven to 200 centigrade and put the fat into a roasting tray. Put the tray in the oven to heat the oil.
Put the onions, cut side down, onto a baking tray and drizzle with oil or duck/goose fat. Wrap the bulb of garlic in foil, but drizzle with a drop of fat before scrunching the foil shut and place on the same tray as the onions. Put the tray on the lower shelf in the oven.
Take the tray of hot fat out of the oven, be careful as it will be incredibly hot. Pour the potatoes into the fat.It will sizzle. Using a spoon and a fork, roll the potatoes into the fat until they are fully coated. Pop the tray on the top shelf in the oven.

They should take about an hour to roast. If they take longer, then they take longer, if it’s less time, then so be it. You want the potatoes to be golden brown and crunchy and ever so inviting.
The onions should be really soft, the petals will be coming apart when you try to pick them up. Wait until they are cool before you do anything though.

When they have cooled a little, pull the cooked onion away from the root and the skin, you might have to cut them but usually they will pull away. Put into a large saucepan. Add the potatoes and any oil left in the pan. Unwrap the foil from around the garlic. Take the garlic out and cut in half. Squeeze the soft garlic paste into the pan with the onions and roasties and add the butter.

Add the marmite into the stock, then pour the stock and cream over the contents of the pan. Leave to soak in for at least 3 hour, or overnight. This will allow the flavours of the vegetables to flavour the stock and cream.
After waiting for however long you chose, blitz until your desired consistency. If you are learning to eat solid foods, keep back a couple of the roast potatoes but cut them into chunks. Add them into the soup after you've blitzed it. If you need the soup to be a thinner consistency just add more cream or milk.

To serve, place either a lump of soft cheese or a soft boiled egg (out of it's shell) in the bottom of your bowl, pour the warm soup over the top.

When you get a little bit more experienced with solid food, this soup works ever so well with pieces of cooked sausage or chunks of ham mixed through it after blitzing.

Peanut Butter Chicken soup

500ml chicken stock, heated
8 chicken thighs, bone and skin on
340g jar smooth peanut butter
2 onions halved and thinly sliced
3 tbsp sunflower oil
3 tbsp finely chopped ginger
2 bay leaves
400g can chopped tomato
2 tablespoon tomato paste
5 fresh tomatoes, roughly chopped
3 sweet potatoes cut into chunks
200g green beans sliced
2 red bell/salad peppers, de-seeded and cut into chunks
Salt and pepper to season

Method

Heat a large pan and brown the chicken thighs. Once brown, remove from the pan and put to one side.
In the same pan add the onions. Fry until soft, then add the ginger tomato paste and fresh tomatoes. Cook for 5/7 minutes. Slowly add the stock, scraping up any bits stuck to the bottom of the pan as they will add extra flavour.
Add in the bay leaves, canned tomatoes and the peanut butter. Add some warm water to the jar, put the lid on and give it a good shake to get every little bit out of the jar. Pour into the pan.
Gently add in the chicken pieces and season with salt and pepper. Put the lid on the pan and simmer for 30 minutes.
Take the lid off and give the soup a stir. Add in the sweet potatoes, peppers and green beans, stir through and simmer for another 30 minutes.
When the 30 minutes is up, take the lid off and give it a stir. The chicken should be really tender. Take the pan off the heat.
Using a slotted spoon or some tongs, remove bay leaves, the chicken thighs and a few of the chunks of sweet potato. Leave to cool.
When the chicken is cool enough to handle, pull the chicken and skin from off the bone. Leave the meat from 2 of the thighs to one side with the sweet potato, and add the rest of the meat and skin to the pan. Blitz with a stick blender until smooth.
Shred the remaining chicken and cut the cooked sweet potato into smaller pieces. Add to the pan and stir through.

Serve with a a topping of crispy onions, sour cream or a soft boiled egg, or even on it's own as it's so tasty. You can even mix in some cooked rice.

Hey guys,

I wanted to follow this thread because my partner has the same issues. He has no bottom teeth left at all.

He is actually just doing a liquid diet now.

Hey Dizzy, glad to see you're doing so well. Do you normally blend these recipes or have you found any techniques on eating things like pepperoni, chicken, etc. without blending?
I havent been on here in awhile but we spoke before about you and he having very similar surgeries. If you have any tips on maneuvering food, could you pm me?

Best wishes to everyone.

Thanks,

Pam

Hi Pam,

Lovely to hear from you. I blended most things to start with, but slowly introduced boiled/steamed vegetables, poached egg or a lump of soft cheese/pate (at the bottom of the bowl) into soups without blending them. They are a bit like a stew/casserole with more sauce.

I found it easier to use a finger periodically, to move food to my teeth and check everything is in one location before taking a sip of water, shake my head to combine the food and water, and then swallow. Sometimes I quickly tip my head back, in like a reverse nod, as it helps the food and water to go down together. For me, it's been the most effective way to eat. I've eaten in front of friends and they've been OK with me doing that.
I keep a serviette/napkin to wipe my mouth and finger on, and I try to wear one down my front as I have a tendency to dribble food occasionally. The soup with chunky bits really helped me.

Today I made a dish of slightly overcooked pasta in mayonnaise, tartar sauce, tuna, sweetcorn, diced cucumber, grated cheese and pepper. Using the finger in the mouth technique, I was able to consume it. I still needed 750ml water to help, and it took me about an hour to consume, but it was a tasty achievement

Hi there, I am new here and glad I found this site.

This Monday will be 4 weeks since having half my tongue removed. They replaced it with a forearm flap. They also did the split mandible thing and I still have LOTS of stitches in my mouth. Probably just in the last week have I been able to start eating oatmeal, cream of wheat, things like that, but it definitely is a chore and not that enjoyable. I find more food in my mouth, is easy that trying to swallow little bits.
My questions are:
1. How long before I can kind of eat like normal? Do you eventually get to eat normally without having to use your finger to push food around? Will I eat pizza again?
2. Will I be able to speak fairly well without slobbering all over and spitting?
3. How long before the dissolvable stitches disappear from my mouth?

Also I just developed 2 little blister like bumps on the tip of my tongue (my real tongue) that sting like crazy. I live about 6 hours away from my doctor. Any ideas?

Thanks for any and all advise, I appreciate it!

Hi Mouthy One,
I'm sorry to hear about your surgery, you are in the right place for support.
With eating, it's like your mouth has gone back to being a toddlers mouth. You need to slowly introduce small bits of soft food at a time. My first 'meal' was a spoonful of mashed potato with a lot of gravy. It took me over 30 minutes to consume.
13 months on I'm not doing too badly with food, it just takes time and practise. At the moment your mouth is full of stitches and will still be swollen in places, so you've got to take it easy. You've been through a lot.
Answer to your questions:

1) It's up to you with how much you try, how long it takes you to recover, and how patient you are. Give yourself a break with trying to eat solid foods every so often. It's exhausting trying to eat solid foods. Extra sauces and drinks help, but smaller mouthfuls work much better too. You need to re-train your brain and mouth to find a way to eat that's comfortable to you.

2) The slobbering and spitting is your mouths way of protecting itself after trauma. It does ease over time, it just depends on each person on how long it takes.

3) Those stitches are annoying aren't they! I think mine finally disappeared after 10 weeks, but I can't remember exactly.

Get on the phone to your doctor and talk about the blisters. We're not professionals, we're just like you. Get yourself checked out for your own peace of mind .Even suggest having a meeting via zoom/video call, if you're able to show the blisters on there.

Thank you so much. I guess I was thinking 4 to 6 weeks I would be pretty well. I'l have to learn to be more patient.. hard to do for me!

It can take up to 2 years to fully recover and rehabilitate from OC. Are you having any other treatments (chemo, radiotherapy)?

No, they wanted to do 6 weeks of radiation, but to be honest, I just can't do it. The surgery, trachea, the pain, all that was enough for me. My quality of life is more important. 41 lymph nodes removed, all negative. Close margin on one side, but I feel OK about it. So I am wondering, just from the surgery, how long to be fairly normal again? Or will I ever be fairly normal?

I absolutely understand where you are coming from. Radiotherapy is gruelling.
There's no set time on when you'll feel 'normal'. As the weeks and months go by you'll notice little changes, such as feeling a bit better or feeling confident in trying something challenging to eat. You will have a few set backs, when your body doesn't want to do anything except sit or sleep, and it doesn't want to eat any solid foods, but that's OK. As long as you are drinking plenty of water (2 litres) and getting 2500 calories (with around 90g of protein as it helps the body heal), you'll be grand. Try to do a little exercise every day, even if it's a 30 minute walk or going up and down the stairs 10 times in a row, it'll help massively.

13 months from my surgery I'm feeling well, but I still have days/hours where I'm tired or I just don't want to eat solid food, or I just feel down. What we've gone through is traumatic. The surgery is brutal, and we all need to accept that there isn't a time limit on recovery, including that of the mind as well as the body.

Your recovery will depend on you, one day at a time.

TMO

Great advice already given here. Just want to add a few comments. I think eating solids after 4 weeks is good progress. As Dizz said, we all move at our own pace. I too had the sores on the tip of my old tongue. I noticed the old tongue does all the work. As the new tongue shrinks and heals, the old tongue continues to gain control. I think that forces it to rub on the teeth and other areas in your mouth. Good advice to check with your docs.

I am 5 months since surgery and still learning to manipulate some of the more difficult items (think solid/dry/spicy). But, I have been able to eat pizza for awhile now! The sauce has to be on the blander side and cooked softer or with lots of cheese. Radiation is what made me sensative to spices/acids.

BTW, if you have not already, I suggest you talk to your oncologist about the odds of cancer coming back. In my situation (Stage IV SCC on side of my tongue, 18 nodes removed, 1 node with SCC but it was still inside the node), the odds of cancer coming back dropped from roughly 40% without radiation to 20% with radiation. I had to specifically ask for these odds. Not sure why they wouldn't talk about it up front. Maybe most people follow their recommendations without it. Radiation does suck but its a different kind of challenge than surgery. The process is slower and not as intense. In your surgery, you wake up suddenly with over a dozen tubes and sensors hanging off you and you can barely breath, eat, speak, sleep. With radiation, it's pain and difficult but drawn out over weeks/months. You can sleep at home, eat (limited stuff), speak, breath, etc.

So glad you are improving. Please keep us up to date on your progress.

Nels

Got to agree with NELS about the radiotherapy. It's hard going but, IMO, it's worth having those reoccurrence stats dropped. My SCC was in a lot of my tongue and 2 nodes. I had 79 removed, some of which had pre-cancerous cells forming. The RT blasts the hell out of those microscopic cells that we can't see.

A great book to read is the story of Chef Grant Achatz. He had stage iv SCC in his tongue but had a ridiculous amount of RT to get rid of it. He's been clear for nearly 10 years now.

Big thumbs up on that book. The first pages are a real shocker but it goes to show the whole process. An inspiring story for those of us with OC. Another book I recommend is "Anticancer." Being an engineer, I loved the hard science behind it. But, it also put some real research to the softer and probably more important side to our health and recovery - mindset, food, exercise, relaxation, reducing stress, friends, faith, etc. The items that traditional Western medicine barely touches.

Cheers Nels. I'll look out for "Anticancer".