External Beam Radiation

zipperneck2012
zipperneck2012 Member Posts: 27
in Head and Neck Cancer #1
I'm about to receive External Beam Radiation for Papillary Thyroid Cancer, 5 days a week for 6.5 weeks, and was wondering if anyone had any advice. Not many thyroid cancer patients have to get XRT (EBR) so I've been advised to check out some of the other head/neck cancer threads. Any info or experiences would be helpful! I begin at the end of the month and am trying to mentally prepare myself.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Is a feeding tube planned?
    Hi, I went over and read your extensive post on the thyroid forum. I'm sorry you are so young, 26 y/o. I'm grateful you are so young because you will benefit from youth. I had base of the tongue cancer and my radiation was concentrated respectively. You have already had a rather complicated neck dissection and your radiation is going to be concentrated in the neck/esophagus area. I think you will have a difficult time swallowing if not impossible. There are many threads here on feeding tubes and I recommend you spend some time reading them. The radiation is effective and will more than likely save your life just as long as your nutrition remains sustainable. Welcome to the head and neck board and I'm sure someone with radiation more related to your circumstance will be along shortly.
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #3
    ratface said:

    Is a feeding tube planned?
    Hi, I went over and read your extensive post on the thyroid forum. I'm sorry you are so young, 26 y/o. I'm grateful you are so young because you will benefit from youth. I had base of the tongue cancer and my radiation was concentrated respectively. You have already had a rather complicated neck dissection and your radiation is going to be concentrated in the neck/esophagus area. I think you will have a difficult time swallowing if not impossible. There are many threads here on feeding tubes and I recommend you spend some time reading them. The radiation is effective and will more than likely save your life just as long as your nutrition remains sustainable. Welcome to the head and neck board and I'm sure someone with radiation more related to your circumstance will be along shortly.

    Thanks! My Radiation Therapist is thinking that because I am young and otherwise healthy, I may be able to scrape by without the feeding tube--but I am not so stubborn that I won't tell them if I can no longer bear eating/drinking. I'm worried about the radiation in such close proximity to my surgery as well... I have lots of nutritious liquid meal replacements planned out in case solids become too difficult- ensure, fruit and veggie smoothies with added protein, some pureed soups that can be served warm or cold.....I'm hoping that with so many options I'll be able to get enough down each day to prevent the tube!
  • Hal61
    Hal61 Member Posts: 655
    #4
    Hi Zipperneck, welcome to
    Hi Zipperneck, welcome to H&N, may your stay be swift and painless. Get the peg tube, as the Rat man says. I could swallow and probably eat though my 35 IMRT sessions, but if it temporarily silences the taste buds, and saliva, then the food everyone serves is pretty bad stuff. So I was glad I didn't have to eat it.

    Our best resource here is linked below. It was compiled of former threads on all issues of head and neck treatment from what to gargle to who to call.

    Best of luck in your treatment,
    Hal



    SuperThread
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #5
    Hal61 said:

    Hi Zipperneck, welcome to
    Hi Zipperneck, welcome to H&N, may your stay be swift and painless. Get the peg tube, as the Rat man says. I could swallow and probably eat though my 35 IMRT sessions, but if it temporarily silences the taste buds, and saliva, then the food everyone serves is pretty bad stuff. So I was glad I didn't have to eat it.

    Our best resource here is linked below. It was compiled of former threads on all issues of head and neck treatment from what to gargle to who to call.

    Best of luck in your treatment,
    Hal



    SuperThread

    Wow...thanks. I'm checking
    Wow...thanks. I'm checking it out now :)
  • ratface
    ratface Member Posts: 1,337 Member
    #6
    zipperneck2012 said:

    Thanks! My Radiation Therapist is thinking that because I am young and otherwise healthy, I may be able to scrape by without the feeding tube--but I am not so stubborn that I won't tell them if I can no longer bear eating/drinking. I'm worried about the radiation in such close proximity to my surgery as well... I have lots of nutritious liquid meal replacements planned out in case solids become too difficult- ensure, fruit and veggie smoothies with added protein, some pureed soups that can be served warm or cold.....I'm hoping that with so many options I'll be able to get enough down each day to prevent the tube!

    even water can be impossible
    We have some heated discussions here about the tube and I only brought it up because of where your radiation will be concentrated following an involved neck dissection. Please realize that the pain can get to levels where just swallowing water is pure agony. I only make the point so you realize that cut up veggies and smoothies may not go down. My experience was very much like Hals, as it was around the 35th radiation session where I would scream if anything touched my tonsils. Your radiation field is planned further down so I am guessing it will be worse for you. Read the threads and rely heavily on your medical team for guidance and be prepared for not be able to swallow for at least a brief period.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #7
    zipperneck2012 said:

    Wow...thanks. I'm checking
    Wow...thanks. I'm checking it out now :)

    Also be aware ...
    I was able to have a successful PEG installation surgery after my third week of radiation, but a fellow patient in my area tried to have it done four or five weeks into his radiation and they were unable to intubate him. As he had a port installed, they had to supply nutrition through that; a more complicated and expensive process.

    Deb
  • jtl
    jtl Member Posts: 456
    #8
    I am in the camp that says
    I am in the camp that says wait until you see if you need it because there are a few of us that could get by without it. Obviously everyone is different and some tolerate pain more than others. I will say this my ENT is against using a PEG until it is absolutely necessary. He can document how much better the recovery process is if you can tough it out and keep using the swallowing muscles. You be the judge but put your health first and if you have difficulty getting nutrition let someone know asap.
    John
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #9
    jtl said:

    I am in the camp that says
    I am in the camp that says wait until you see if you need it because there are a few of us that could get by without it. Obviously everyone is different and some tolerate pain more than others. I will say this my ENT is against using a PEG until it is absolutely necessary. He can document how much better the recovery process is if you can tough it out and keep using the swallowing muscles. You be the judge but put your health first and if you have difficulty getting nutrition let someone know asap.
    John

    hmmm....I think a lot of it
    hmmm....I think a lot of it will also have to do with how much/little my swallowing imporves between now and when the radiation gets to be painful, right now I still have a little difficulty, but my doctors are aware of it. I'm assuming that I will need a feeding tube at some point during the process, but I'm trying to hold the attitude of being able to get through it on my own so that I keep up my resolve. I can certainly see where lack of saliva, lack of taste, and intense pain upon even drinking would lead one to lose their ability/will to eat. So basically, I'm going to try my da*ndest to avoid a feeding tube, but if I'm in too much pain I'll definitely tell them so that they can install one.

    I've pretty much heard only horrible things about XRT so far, but it's cancer, it's not gonna be fun right? :p
  • osmotar
    osmotar Member Posts: 1,006
    #10
    zipperneck2012 said:

    hmmm....I think a lot of it
    hmmm....I think a lot of it will also have to do with how much/little my swallowing imporves between now and when the radiation gets to be painful, right now I still have a little difficulty, but my doctors are aware of it. I'm assuming that I will need a feeding tube at some point during the process, but I'm trying to hold the attitude of being able to get through it on my own so that I keep up my resolve. I can certainly see where lack of saliva, lack of taste, and intense pain upon even drinking would lead one to lose their ability/will to eat. So basically, I'm going to try my da*ndest to avoid a feeding tube, but if I'm in too much pain I'll definitely tell them so that they can install one.

    I've pretty much heard only horrible things about XRT so far, but it's cancer, it's not gonna be fun right? :p

    Hmmmmmmmmmmm...fun?
    Fun not so much but certainly doable. I finished my last rad treatments on Dec 30, 2011. Fortunately I didn't have to have a feeding tube, I went into this journey with the mind set that it wasn't going to happen, that being said there are a lot of folks here who will tell you that it was the only source to take in nutrition that they had. I lost my taste around week 4 , there were some things I could still taste really well ; most veggies raw or cooked,chicken and egg drop soup; red meats, sweets and all fruits were out. I wasn't affected by sore throat, mouth sores, or swallowing issues so i continued to eat whether I could taste or not, I just didn't eat enough calories at first so my rad doc told me I could only loose 2 lbs per week or else it was a tube for me, he suggested 2500+ calories a day, I tried to stick to that with real food and supplemented with boost or ensure. Today a little over 2 months later my taste is slowly returning to normal, or what ever normal may be , I still have not gotten all my saliva back, and there are some days my mouth is dryer than others...but all in all I was fortunate to have had little or minimal issues during treatment. Listen to your body, listen to your doctors and before you realize the treatments will be over.

    Best whishes,

    Linda
  • zipperneck2012
    zipperneck2012 Member Posts: 27
    #11
    osmotar said:

    Hmmmmmmmmmmm...fun?
    Fun not so much but certainly doable. I finished my last rad treatments on Dec 30, 2011. Fortunately I didn't have to have a feeding tube, I went into this journey with the mind set that it wasn't going to happen, that being said there are a lot of folks here who will tell you that it was the only source to take in nutrition that they had. I lost my taste around week 4 , there were some things I could still taste really well ; most veggies raw or cooked,chicken and egg drop soup; red meats, sweets and all fruits were out. I wasn't affected by sore throat, mouth sores, or swallowing issues so i continued to eat whether I could taste or not, I just didn't eat enough calories at first so my rad doc told me I could only loose 2 lbs per week or else it was a tube for me, he suggested 2500+ calories a day, I tried to stick to that with real food and supplemented with boost or ensure. Today a little over 2 months later my taste is slowly returning to normal, or what ever normal may be , I still have not gotten all my saliva back, and there are some days my mouth is dryer than others...but all in all I was fortunate to have had little or minimal issues during treatment. Listen to your body, listen to your doctors and before you realize the treatments will be over.

    Best whishes,

    Linda

    You guys have all been
    You guys have all been incredibly helpful! Especially the super list of resources. :) It's been hard finding people with thyroid cancer who have been through the external beam radiation, though have found a few, so you all have been wonderful :)

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