Radiation after surgery- tongue cancer

Aanchal Kanodia
Aanchal Kanodia Member Posts: 20
in Head and Neck Cancer #1

Hi everyone, 

My mom was diagnosed with T2N1MZ tongue cancer on 29 janauary! It's been 5 weeks since surgery and she seems to heal well. 

 radiation starts tomorrow. Could you please help me with what you expect ? Doctors say the only side effect would be ulcers. However, the internet says 

a different story all together. Would really appreciate if people who have experienced this could give some insight.

 

Thanks, 

Aanchal

Comments

  • OKCnative
    OKCnative Member Posts: 326 Member
    #2
    Gonna depend on the number of

    Gonna depend on the number of radiations and the intensity.

    I did 35 radiations total, delivered once daily.

    Most people here will tell you the side effects of radiation go far beyond simple ulcers. Plus, some of the effects are lifelong. Some of this also depends on exactly what is being radiated. If you hit lymph-nodes then you're gonna possibly deal with lymphedema. If you hit salivary glands you're gonna deal with loss of saliva (which is a bigger deal than you'd assume). There is the tons of nasty mucous you can produce and the general uncomfortableness of it all. Sometimes it's all temporary and manageable. Other times it's really out of control and takes a toll on your overall health.

    That said, I'm coming up on 6 month post treatment SCC base of tongue with chemo and radiation and I'm 100% (minus loss of saliva).

  • kgasmart
    kgasmart Member Posts: 64 Member
    #3
    I'm just finishing up radiation

    Hi Aanchal - I had surgery for base of tongue cancer in December and tomorrow I finish my 6 weeks/30 days of radiation.

     

    The biggest side effect I've experienced is the sore/scratchy throat that makes it extremely difficult to swallow. For a while there I was on the all-smoothie diet - protein shakes, milk, had to be that type of consistency. Curiously, as I've gotten closer to the end, I've been able to eat a few other things.

     

    I lost most of my sense of taste. Things don't taste bad... I just really can't taste anything.

     

    There's been some fatigue, not a tremendous amount.

     

    Those are really the ones to write home about. Also be careful in terms of cuts, abrasions in the area where she's getting the radiation - I somehow managed to nick my neck just below the Adam's apple and it turned into a full-blown infection, huge abcess that sent me into the hospital for 2 nights.

     

    Best of luck, and all I can do is tell you/her to hang in there. The side effects really started to hit week 3, by the end of that week I was pretty miserable. But I liken it to a boxer being in the corner and getting hit; you just have to keep your gloves up and wait for the bell, the end of treatment. It's not fun - but the treatments will come to an end, and hopefully then the healing can begin.

     

    -cheers

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    edited March 2018 #4
    I had radiation post surgery for BOT...

    30 treatments...  Beard fell out, skin on neck had some "sunburn" by the end.  Lost taste about 2-3 weeks in...  Started getting dry mouth about 4 weeks in.  Got some oral ulcers/blisters at about the 4 week mark as well.  Fatigue started setting in around that 4 week mark as well.  I worked all through my treatments but there were more than a few nights where I crashed by 9pm (uncommon for me).  The 2 weeks post treatment were the worst.  Sore throat, blisters...  By 1 month post...improving.

    Today (almost 1 year out) my neck dissection gives me more trouble than the radiation did.  Some dry mouth in the morning...thick phlegm.  Nothing a good cup of coffee doesn't help remedy.  Taste is pretty much totally back (sweets aren't quite as sweet).

    Chemo with radiation makes it much harsher...  Hang in there.

  • Curlyn
    Curlyn Member Posts: 189
    #5
    Hello Aanchal, if it wasn't

    Hello Aanchal, if it wasn't doable none of us would have survived it. Listen to the advice above and remember to ask for and take medication (for your mom) as needed. It's 6 weeks out of her life, meds can help reduce the misery. Best of luck.

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    #6
    johnsonbl said:

    I had radiation post surgery for BOT...

    30 treatments...  Beard fell out, skin on neck had some "sunburn" by the end.  Lost taste about 2-3 weeks in...  Started getting dry mouth about 4 weeks in.  Got some oral ulcers/blisters at about the 4 week mark as well.  Fatigue started setting in around that 4 week mark as well.  I worked all through my treatments but there were more than a few nights where I crashed by 9pm (uncommon for me).  The 2 weeks post treatment were the worst.  Sore throat, blisters...  By 1 month post...improving.

    Today (almost 1 year out) my neck dissection gives me more trouble than the radiation did.  Some dry mouth in the morning...thick phlegm.  Nothing a good cup of coffee doesn't help remedy.  Taste is pretty much totally back (sweets aren't quite as sweet).

    Chemo with radiation makes it much harsher...  Hang in there.

    Hi Johnson,

    Hi Johnson,

    Thank you for the information. Congrats on your 1 year being cancer free. Any tip on how to manage the pain and ulcers? Also, did you require a feeding tube?

     

    Thanks!

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    #7
    Curlyn said:

    Hello Aanchal, if it wasn't

    Hello Aanchal, if it wasn't doable none of us would have survived it. Listen to the advice above and remember to ask for and take medication (for your mom) as needed. It's 6 weeks out of her life, meds can help reduce the misery. Best of luck.

    Yes, just hanging in there! 

    Yes, just hanging in there! 

    Thanks :)

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    #8
    OKCnative said:

    Gonna depend on the number of

    Gonna depend on the number of radiations and the intensity.

    I did 35 radiations total, delivered once daily.

    Most people here will tell you the side effects of radiation go far beyond simple ulcers. Plus, some of the effects are lifelong. Some of this also depends on exactly what is being radiated. If you hit lymph-nodes then you're gonna possibly deal with lymphedema. If you hit salivary glands you're gonna deal with loss of saliva (which is a bigger deal than you'd assume). There is the tons of nasty mucous you can produce and the general uncomfortableness of it all. Sometimes it's all temporary and manageable. Other times it's really out of control and takes a toll on your overall health.

    That said, I'm coming up on 6 month post treatment SCC base of tongue with chemo and radiation and I'm 100% (minus loss of saliva).

    Hello,

    Hello,

    She has to 30 radiations in total within a span of 6 weeks. The doctors say there won't be much side effect, which I highly doubt. They have recommended gargling 50 times a day with water, salt and baking soda as it might help with the ulcers.  Any tip from your end to help lessen the pain/discomfort? Any food or supplement which helped you during the treatment? She is already too weak both mentally and physically and weights about 108 pounds. its getting really tough for us to get her out of the bed.

    Also, please fill me in if you can with any advice on how to prevent it from recurring? I know that's the worst fear and no one can really tell. But some precaution is always better.  

    Thanks!

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    #9
    kgasmart said:

    I'm just finishing up radiation

    Hi Aanchal - I had surgery for base of tongue cancer in December and tomorrow I finish my 6 weeks/30 days of radiation.

     

    The biggest side effect I've experienced is the sore/scratchy throat that makes it extremely difficult to swallow. For a while there I was on the all-smoothie diet - protein shakes, milk, had to be that type of consistency. Curiously, as I've gotten closer to the end, I've been able to eat a few other things.

     

    I lost most of my sense of taste. Things don't taste bad... I just really can't taste anything.

     

    There's been some fatigue, not a tremendous amount.

     

    Those are really the ones to write home about. Also be careful in terms of cuts, abrasions in the area where she's getting the radiation - I somehow managed to nick my neck just below the Adam's apple and it turned into a full-blown infection, huge abcess that sent me into the hospital for 2 nights.

     

    Best of luck, and all I can do is tell you/her to hang in there. The side effects really started to hit week 3, by the end of that week I was pretty miserable. But I liken it to a boxer being in the corner and getting hit; you just have to keep your gloves up and wait for the bell, the end of treatment. It's not fun - but the treatments will come to an end, and hopefully then the healing can begin.

     

    -cheers

    Hi,

    Hi,

    Any advice from your end on how to make it better even if it's 0.1%? Did it darken the skin where you got radiated? Some doctors say it would others say it doesn't. I still have my doubts. What did you do about the stiffen neck if you had that? Some doctors are also saying that it decreases the opening of the mouth by 25%, is it so? Are you taking any natural products to help you heal faster?

     

    I'm sorry, i know too many questions but just can't help! :(

     

    Thanks! 

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #10
    Aanchal Kanodia said:

    Hi Johnson,

    Hi Johnson,

    Thank you for the information. Congrats on your 1 year being cancer free. Any tip on how to manage the pain and ulcers? Also, did you require a feeding tube?

     

    Thanks!

    The salt/baking soda rinse is great...

    Yes, I did this a ton...  Drink tons and tons of water too.  You just can't drink enough water honestly.  The rinse really does a pretty good job of neutralizing a lot of the oral discomfort.  I had a tupperware cup of it at work and at home...  Would drink bottled water throughout the day and then when I was down to the last quarter cup of water I'd dump in the salt/baking soda stuff and go and rinse/gargle...  Glad someone else mentioned it above.  Probably drank 4-5 bottles of water per day (which isn't a lot in the grand scheme of things but I'm not a huge water drinker anyway so it was a big deal for me).

    I did not have a feeding tube...it was my goal to NOT have to have one so I made sure to keep drinking and eating.  No reason to be afraid of it...really depends on the patient.  I'm 43 and otherwise healthy so I resisted it.  If I was older, frailer, less healthy...would probably consider it.

     

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #11
    Aanchal Kanodia said:

    Hi,

    Hi,

    Any advice from your end on how to make it better even if it's 0.1%? Did it darken the skin where you got radiated? Some doctors say it would others say it doesn't. I still have my doubts. What did you do about the stiffen neck if you had that? Some doctors are also saying that it decreases the opening of the mouth by 25%, is it so? Are you taking any natural products to help you heal faster?

     

    I'm sorry, i know too many questions but just can't help! :(

     

    Thanks! 

    All of the things above are possible...

    But not guaranteed.  It didn't discolor my skin at all except the sunburn during and shortly after treatment.  It CAN cause stiff neck and lymphedema....that can be improved with therapy.  It CAN reduce your ability to open your mouth...  It did mine by a little bit after but I'm back to where I was before all of this.  No natural products.

    Again, lots of water and try to keep eating, moving, etc....  A lot of these things are a use it or lose it situtation.  The more you baby your mouth, throat, jaw the more likely you are to have lingering issues.  Stay as active as possible.  Eat solids until you just cant and then move on to high calorie supplements like Ensure...but keep eating and drinking by mouth.

    Honestly, one of the hardest parts is a few weeks after the taste buds go nothing sounds good...so you find yourself just sort of not eating as much, cause nothing tastes good.  Keep eating!!!

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    edited March 2018 #12
    kgasmart said:

    I'm just finishing up radiation

    Hi Aanchal - I had surgery for base of tongue cancer in December and tomorrow I finish my 6 weeks/30 days of radiation.

     

    The biggest side effect I've experienced is the sore/scratchy throat that makes it extremely difficult to swallow. For a while there I was on the all-smoothie diet - protein shakes, milk, had to be that type of consistency. Curiously, as I've gotten closer to the end, I've been able to eat a few other things.

     

    I lost most of my sense of taste. Things don't taste bad... I just really can't taste anything.

     

    There's been some fatigue, not a tremendous amount.

     

    Those are really the ones to write home about. Also be careful in terms of cuts, abrasions in the area where she's getting the radiation - I somehow managed to nick my neck just below the Adam's apple and it turned into a full-blown infection, huge abcess that sent me into the hospital for 2 nights.

     

    Best of luck, and all I can do is tell you/her to hang in there. The side effects really started to hit week 3, by the end of that week I was pretty miserable. But I liken it to a boxer being in the corner and getting hit; you just have to keep your gloves up and wait for the bell, the end of treatment. It's not fun - but the treatments will come to an end, and hopefully then the healing can begin.

     

    -cheers

    Thanks, I'll keep that in

    Thanks, I'll keep that in mind. 

    Hope for your speedy recovery!

    All the best :)

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    #13
    johnsonbl said:

    The salt/baking soda rinse is great...

    Yes, I did this a ton...  Drink tons and tons of water too.  You just can't drink enough water honestly.  The rinse really does a pretty good job of neutralizing a lot of the oral discomfort.  I had a tupperware cup of it at work and at home...  Would drink bottled water throughout the day and then when I was down to the last quarter cup of water I'd dump in the salt/baking soda stuff and go and rinse/gargle...  Glad someone else mentioned it above.  Probably drank 4-5 bottles of water per day (which isn't a lot in the grand scheme of things but I'm not a huge water drinker anyway so it was a big deal for me).

    I did not have a feeding tube...it was my goal to NOT have to have one so I made sure to keep drinking and eating.  No reason to be afraid of it...really depends on the patient.  I'm 43 and otherwise healthy so I resisted it.  If I was older, frailer, less healthy...would probably consider it.

     

    The main problem for us now

    The main problem for us now is my moms sever depression. She just refuses to get out of bed. Yestreday durring a visit to the hospital for radiatio treatment she ran away! And now she has having acute stomach aches which the doctors are saying s due to tension. Dont know what to do anymore. :(

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