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Feeding Tube after Oral Cancer Surgery Necessary?


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

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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!

Comments 2

  1. 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

  2. Post
    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

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