Dear Eva,
After your surgery did you feel like you would never be normal again? I’m really struggling with that part. I have to go back in tomorrow to remove a small part in the back of my tongue to make margins clean. I’m starting 37 days of radiation after the holidays. The feeding tube I have is the most painful part of everything. I’m demanding it out! But they say I will be unable to swallow during radiation. Did you have that problem ? Everything is so scary, now more than before. They say the type of cancer I have, if it comes back, will do so during the next two years. I hate to live scared but I’m afraid this is what my life has become. I just want to get back to being me.
Roberta
Dear Roberta,
Do what is best for you, not them. No feeding tube is perfectly possible. Yes, you have to force yourself to eat, and it hurts like you can’t imagine, like the worst sore throat you have ever had in your life, but it is possible. In fact, I have met several survivors who relied on the feeding tube too much and they needed months of swallowing therapy to learn how to swallow again. So, there is a negative to having the feeding tube, too.
They are right that if it comes back it will most likely come back in the next two years, but guess what, with the radiation….you are doing everything possible to prevent that from happening.
You WILL get back to yourself, but you need to give yourself 5 months….at least 6 weeks post radiation. But when you look at the length your life will be (like mine) the 6 months or so to deal with this will be a blip of nothingness.
Balance the pain you are experiencing with the joys that life gives you. They are harder to see with the pain, but they are there if you look hard enough.
Sending you a hug,
Eva
Dear Eva,
You just made my day…. Thank you.
Dear Eva,
I did not get the tube out but they did take out little bolts around it which were so painful. The past week has been extra painful because they went back in and sliced the back of my tongue.How long after you stopped radiation did you feel better than decent? I’m planning a big vacation with my family and am thinking end of March or April. I finish radiation mid to end of March. The last thing I want to do is go on vacation and feel bad.
Thank God for you… You have been an inspiration for me through all of this.
Roberta,
You need two weeks after radiation just for the symptoms to subside. Then, you need a couple of weeks to feel more normal. So, look into late April instead of late March. I, too, planned a vacation 2 months after treatment, and it really helped to have something to look forward to – great idea on your part!
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Roberta,
I was diagnosed with tongue cancer back on March 1st 2013. Had section of tongue removed with a flap to replace tissue removed plus a neck dissection to remove 40 Lymph Nodes.After a month of the surgery I was starting to eat normal foods again. ALL BUT, HOT AND SPICY AND HARD TO CHEW plus supplemented my meals with Glucerna 1.5 by Abbott.
A Month and a half later, I had 30 days of Radiation from nose down to collarbone. I was fine till about half way thru my treatment. My Salivary Glands were greatly effected and I experienced dry mouth and still to this day.
I have to be honest and say that the radiation treatment was more debilitating to me than the surgery.The last week of Radiation Treatment and the next 3-4 weeks were the worst for me. I was living on 1 to 2 cans of Glucerna 1.5 each day for a week and was losing 1 lb. each day. Before my operation I weighed in at 325 lbs. After surgery I had dropped to 280 LBS and after radiation I had dropped to to 255lbs.
I only had a feeding tube for 2-3 weeks after surgery. I had no feeding tube during radiation but was eating pureed foods, pudding, ice cream and such. After radiation I could not eat any of the above let alone the can or 2 of Glucerna. After a week of losing a pound a day I was feeling weak and knew I had to do something to increase my calorie intake or they were going to put a feeding tube back in me. I finally found that by adding 4 ounces of water to every 4 ounces of glucerna that I was able to swallow better with less pain and consume more 4 to 6 8oz. cans gradually the 2nd week.
Radiation effects every individual slightly differently and all I can say is it is a day to day month to month progress. Fatigue can play a big factor. Rest and eating well and walking were my best personal remedies. Plus experimenting with different food to find the easiest to eat. I started with Creme of Broccoli soup and Creme of Wheat.
The months have passed and my current weight is 266 lbs. I am eating just about everything normal but still no HOT and Spicy. I attribute my good recovery to a positive attitude, patience, and my hobby of playing guitar. It really helps to pass the time.
You are not alone.
My Best Wishes to you Roberta,
Frank R
Author
Frank, Thank you for responding to Roberta. I was just thinking about her today, and going to send her a quick email, when your post came in. Now, I will write to her and have the additional support for her from you. I’m really proud of you for keeping your weight up and staying positive and finding solutions that work for you. Keep walking and playing the guitar and experimenting with food. You are an inspiration.
Eva
Is it mandatory to get radiation done after tongue surgery. I had tongue cancer in 2007 and now again in 2017. Earlier also they told that taking radiation would be extra precautions, but i did not opt for it. And every thing was fine. This time they say it was not reoccurrence but the fresh development for which surgery is done. Pls guide whether i can avoid radiation if they recommend.
Thanks
Vikas
Author
Radiation after surgery for oral cancer is very common because most of the time the cancer is caught late. Even if the tumor is removed with clean margins, microscopic cells can still be present. When the cancer is caught in a very early stage, sometimes the recommendation by doctors is to watch for change…diligently! Sounds like you got lucky the first time, that 10 years ago, when radiation was protocol, you obviously didn’t need it. Now that you have a new primary, you have to make the decision again whether to have it. I would ask, how old are you? Do you have a good support system? Is it worth it to you to take a chance on your life and deal with the challenging side effects of radiation?
My husband was diagnosed with mouth cancer last week. We caught it early, but I am so scared , his age is 76 . I hate for him to be uncomfortable, or in pain. What can I do to make this more comfortable for him.
Author
JoAnne, Life is bittersweet. Even though it won’t be comfortable for your husband, focus on the many opportunities that will emerge from this challenging experience. You will learn who your very best friends really are. You will recognize the value of being a part of a community. You will have an opportunity to teach family and friends what it means to be supportive, what it means to care what it means to be a partner.
Through this journey, you need to take care of yourself so you are in the best shape to be his primary caregiver. You will make him ‘comfortable’ or happier by showing him you can both still live and enjoy life. Make an effort to laugh everyday together. Do things that bring you both joy. And, find gratitude in all the support that will come your way.
Hi all, just diagnosed with base tongue cancer caused by HPV 16. Going to have 7 weeks of radiation (the new pencil beam Proton Thrapy) and chemo. They said tumor is too big for surgery, would loose speech & posible swallowing function. Doc was pushing for me to have a feeding tube put in, but I refused for now to see if I’ll need it. He said 33-50% if his patients end up with it. Going for mask & Pet Scan Monday. All advise welcome, thanks, Bill D
Author
Be sure to get on the Oral Cancer Foundation Patient Forum. It’s a great place to get information from reliable sources/experts. Where are you being treated?
Recently I noticed a lump under my ear and after biopsy was told it was HPV but came back negative for the 16 and it mastic. Oncology doctor thinks it is 16, because I never smoked, and after a pet scan found a couple places in my mouth, one under my tongue and my ENT is to do a biopsy on the new spots. The Oncology doc wants a feeding tube put in at same time, however, doctor who was to do the feeding tube, declined because he was afraid of transferring cancer down in my stomach. Said something about a Radiologists having to do the procedure. I am totally confused. I am concerned about my physical health during the radiation treatments. I am very active at my church and a church board member. Everyone thinks I really have it together facing the future but do not know I am very scared and concerned. I am 73 and live in Fort Worth.
Author
Chuck, There are at least 6 strains of HPV that cause cancer. The good news is HPV positive cancer has a greater cure rate than non-HPV. It’s important to find the primary before treatment, if possible, so they can direct the radiation and limit it to other glands and tissues. I survived treatment without a feeding tube. They can always give you a feeding tube down the road if you need it. Receiving more radiation than necessary isn’t uncommon with HPV. Have you been to MD Anderson for a second opinion? the delay to get an appointment will have far greater benefits than the risks of waiting a couple of weeks. Please keep in touch.
Hi Bill, how did you do with treatment , did you have to get the feeding tube?
my boyfriend is having tongue cancer surgery in a few weeks.. i am scared because he has liver problems… he doesnt want a feeding tube or a trach… thank you for the info
Author
Wendy, I never had a feeding tube or trach. Actually, it’s important to continue to swallow throughout the process. Where is he getting treated? Did you get a second opinion? Your boyfriend needs your strength and fortitude. Cry when he isn’t looking. Talk to friends to get the support you need, then be there for him fully with confidence for a great outcome.
hi Eva we go on tuesday dec 10 the dartmouth medical center.. he is in so much pain…
my best friend is flying up to be with me.. thank you so much..xo
Author
Wendy, You are lucky to have a friend to support you. Everyone who knows you will understand the value of friends through times like these. Nourish friendships with those who can be with you in the hard times. How is he doing now?
My Mom just got diagnosis’s with tongue cancer on the rt side middle tongue she only weighs 100 pounds and also is a diabetic so tell me about radiation treatment and 7 weeks of that is treatment and they want a feeding tube placed into her stomach…so does this hurt and why they doing this?
Author
Angela, I went through radiation without a feeding tube, but eating was a challenge because radiation causes a lot of sores in the mouth making even swallowing saliva painful. However, my treatment was 20 years ago. Equipment is more targeted now and they may be able to limit side effects. Know that eery cancer is different and everyone responds differently to treatment. Perhaps, it would be good to ask, ‘how old or new is the IMRT (radiation) equipment? If the treatment is too rough for her, can the amount of radiation be reduced? Does she have to have a feeding tube?’ About the feeding tube, some people rely on it so much the muscles forget how to swallow and it’s something that needs to be relearned. Others have no problem with it. It can be comfortable for some and very uncomfortable for others. Cleaning it properly can be difficult. How close is your mom to the hospital? How old is she? How positive is she? There are a lot of factors that may help you make a decision that is best for your mother.
I am so worried. My mother had tongue cancer surgery and she’s so tired of her feeding tube. I need to know, is she going to talk again? Will the pain in her throat go away? Will she be able to swallow easily? Is there any hope to go back to normal life again?
Author
Yes, there is hope! The treatment is so difficult to endure, yet two weeks after treatment is over, the first glimmer of hope appears. Worrying isn’t helpful or productive. Your job is to be as positive as possible. Continually focus on your blessings. Find jokes, movies, cards that will make her laugh. Build her up. Easier said than done, but a goal to strive toward. In this new year, focus on ‘an attitude of gratitude.’
My father hasn’t eaten in 5 days and barely drinks water. He continues to refuse a feeding tube even though his weight dropped from 158 to 120. He doesn’t complain but his health is going downhill fast. Radiation for his oropharyngeal cancer ended almost 3 months ago! Our whole family is begging him to save himself. As a warrior in the Vietnam war, he drove a tank and set traps in the jungle single-handedly He cares about his country but doesn’t care about himself. I want him to rediscover the fight and save himself. What can I do?
from Billy
Author
Dear Billy,
Your father is making a very personal decision by refusing a feeding tube. He fought for his country at the expense of his own life. Maybe now, for the first time, he is the Lieutenant/General and making his own executive decision.
Respect your dad and support his decisions. Believe in your heart he is doing what is best for him (and ‘his country.’) Continue to tell him what you love about him. Tell him WHY you want him to fight instead of barking orders, even if those demands come from a place of love. How has he impacted your life and infused it with wisdom? Be specific. The more intimate you are with him, the more open and honest he will be with you. Speak to him from a place of love instead of anger or judgement. This can foster communication on a deep level. Perhaps, your dad will share intimate details of his experience and why he is making the choices you can’t understand. People who haven’t been through this disease can’t understand what it’s like to lose the ability to swallow, speak and taste which most of us take for granted.
Your love of your father is admirable and I wish you courage,
Eva
Sounds similar to mine. I did it without feeding tube. I had thrush the whole time which compounded things. 33 radiation and 8 chemo. I did take narcotics and they may or may not help with swallowing pain. I had 1 opening in my throat that I could get things through. Had to get angle right and drink water behind . With all the blisters and swelling every day brought a new experience. Pills might show back up next day cause of hanging on ablister and can’t tell it’s there. Had one get loss in swelling under my tongue. Took me week before it dissolved. Food was very limited with pain. Cut exercise out because I couldn’t get enough calories. 210 to 160 in weight but feel better with weight loss. I’m 5’11”. Never got sick but did wear a mask and stayed out of public as much as possible. Magic mouthwash was a little strange trying to eat solid foods because it numbed throat and couldn’t tell if getting things down responsibly. Just used to help with sleeping and nagging cough because of swelling near gag reflex is my best guess. I recommend getting tube if you don’t have gag reflex because you will have to regurgitate a lot to get things completely down. It’s not like acid reflux, it’s just mushy food you have to work at. Good luck
Author
Dennis, Thank you for your advice. I myself did not have a feeding tube, so i can’t give personal advice. however, like you, I had a lot of swelling at the back of my throat and gagged a lot. Glad you are well now and reaching out to help others.
Some surgeries for oral cancer can be difficult and hard to recover from. It is important to be as healthy as possible before you have surgery. You may have blood tests, such as a complete blood count (CBC) or blood chemistry, blood clotting and liver function tests. You may also have heart and lung function tests to make sure you are healthy enough to have surgery. You will also have a nutritional assessment to check your weight and food intake.
I am so happy I found you. Please, what if the average length of time to keep a g-tube in place after radiation? My husband completed treatment almost 2 months ago. He is cancer-free and is supposed to be working to regain strength. He’s not. He will not let go of the g-tube. Bloating that alternates with episodes of emesis define his days. His muscle mass is gone. He’s lost nearly 15% of he body weight since completing radiation/chemotherapy; appears cachexic. I am very concerned. He is persistently dehydrated; and hypotensive– about 90/55. He complains of malaise, sleeps nearly 18 hours at a time; complains of light-headedness. It’s obvious from how unsteady he is upon rising that he has orthostatic hypotension. I dread and anticipate that if he continues on this path, syncope is practically a given. I have M.S.A.–lose consciousness frequently. He has picked me up in a heap and rushed me to the hospital all too often with brain bleeds, broken bones, severe spinal injuries, and more–he knows the dangers of syncope. I do not understand what he is doing.
His body is crying out for protein, calories, and proper nutrition. At the same time that he says he cannot eat solid food, he has cravings for “junk food”, which he easily, satisfies. I’ve seen him eat a McRib, a Whopper, and a huge burrito– in one sitting, with no problem. I’ve seen him eat hot dogs, a loaded baked potato, pizza, and very spicy Chinese food; yet he insists he cannot eat solid food. I am at a loss, as is his nutritionist. As for his physician: they’ve been having telemedicine f/u appointments–he tells her he is fine.
Can you offer advice?
Author
Patty, When a person is denied the ability to eat food, it steals more than nutrition. It takes away a purpose to live, a sense of dignity, a piece of his humanity. No one can understand what it’s like if you haven’t gone through it. I try to encourage all G-Tube users to exercise those swallowing muscles, but it’s frightening. Coughing. Choking.
Here is what I recommend: Buy (or make) that whopper or hot dog. Allow him to smell it. It will trigger a memory of how much he likes it. Then, put it in a blender and into his G-tube. Entice him with foods he enjoys. You will become a pro. Dealing with a clogged G-tube will happen but you will get better at knowing which foods work and don’t. There is pleasure in the smell of good food.
It’s only been two months. Be patient and gentle with him. Try not to tell him what to do. Simply entice him and let him tell you what he may be ready for trying.
As far as the falling down, for both of you, it may be time to get a system to wear around your neck. What if he is sleeping when you fall?
I would love to hear your response to this advice.
Glad to have found your site. I’m at a loss. I have had surgery and just finished radiation treatment (33 treatments) on my throat for HPV stage 1 cancer. Tonsils were removed also. Resection done. Now I can’t eat. There is so much mucous in my throat and my throat is very, very sore. Nothing tastes good and that makes me want to vomit which makes my throat worse. I have lost 30 lbs. At the beginning a feeding tube was mentioned, which I said we’ll see. Didn’t think I was going to need one, but now I’m wondering if I had ought to. I have very little strength most days. I have trouble getting to sleep because of the mucous. I was done with radiation on the 16th of April. Should I wait a while yet to see what happens or talk to my doctor about having the tube inserted? Thank you.
Author
Paula, if your are supplementing your diet with Ensure or some other drink, the high fat content is extremely mucous-producing. I switched to Citrical, which was more acidy, and burned, but it was a better option than the mucous. Coughing and throwing up is very debilitating to the raw and marginalized radiated tissue. The two weeks after radiation are usually the worst. Now that it’s almost a month after radiation for you, and you have not started to regain strength, perhaps, now is the time to start the discussion about a feeding tube. Hopefully, you will continue to eat by mouth, too, to retain the muscle memory. Relying solely on the feeding tube will lead to swallowing therapy down the road. Feel free to use me for support, advice, or a listening ear anytime. Eva