Starting radiation soon seeking advice

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Texan96
Texan96 Member Posts: 2
in Head and Neck Cancer #1

My fiancé was diagnosed with stage 2 tongue cancer she has a pre existing conditio, fanconi anemia that puts her more at risk of infection and cancers she is currently 24 and has had a 3/4 of her tongue removed her surgery was rough on her because her tongue began to clot so she had to go into surgery 3 times she is now about 4 weeks post op and is recovering slowly but definitely a lot better than before she can talk and drink liquids but the doctor suggests not eating until her tongue is fully healed so she is connected to a g tube and only gets nurtition through liquids she has good and bad days but like I said has gotten a lot better we are starting radiation next week and are scared out of our minds the doctors downplayed the surgery made it seem like it would be easy and recovery time would be about 2 weeks and we ended up 1 month in hospital and another in rehab since the surgery was tough on her we are wary on what to believe when the doctors tell us about radiation, they say that it's only gonna be on the tongue and neck area 30 sessions 5times during a 6 week period we should be home by thanksgiving we really just want to hear from your experiences how did you handle radiation? any young survivors out there? what can we expect! anyone out there with fanconi anemia with similar cases? anything helps! 

PS anytype of support is greatly appreciated we are very new to this but she has a fighting spirit!

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  • stevenpepe
    stevenpepe Member Posts: 234
    #2
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    Radiation is a double-edged

    Radiation is a double-edged sword when it comes to cancer. It's highly effective in destroying cancer cells but it creates issues of its own.

    I had tongue cancer that spread to both sides of my neck. They removed about a quarter of my tongue and gave me 33 rounds of radiation on my tongue and neck. As is typical, the short term effects consisted of severe burning and discomfort.

    Then, two months later the cancer returned on the other side of my neck, so I had to repeat the process of surgery, radiation and chemo. This time, instead of IMRT radiation which sounds like the type your fiance will have, I went through 35 rounds of Proton radiation, which is more targeted to a specific area of the body. In my case, the lymph nodes just below my jaw on the right side.

    Most people don't go through it twice and as a result, I am heavily scarred, my neck is excruciatingly tight and the massetter muscle in my right jaw is damaged to the point I need Botox injections every 4 months to control the painful contractions and spasms. Without the Botox, my quality of life is heavily affected.

    Hopefully, your fiance will only need it once and be done with it.

    Overall, I question if I should have gone through with it but I always remind myself that I'm alive in spite of the difficulties. There are no guarantees in this life.

    To directly answer your question, the radiation will change things. Taste will change and there will be soreness in the tongue and neck. Your fiance has had more tongue removed than me so hopefully the radiation won't be as bad. It's important to remember the radiation is designed to kill cancer cells surgery may have missed. So while it can be debilitating, it puts you in a much better position to be cured.

    I am now 54 and was diagnosed at 49. Good luck with everything!

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited November 2020 #3
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    Radiation

    Very very tiring - i made the mistake of doing it early in the day (8 am) because I figured I could go to work after... wrong!

    Radiation is the gift that keeps on giving.

    Up the calorie intake - I think we had worked out a milkshake - Boost or Ensure, a few scoops of ice cream, and carnation instant breakfast - blend wekk, about 900 cals

    ok Radiation - the Drs nurse will be your best friend, take care of the skin, really, take care of it, after she is done, she WILL have a mess on the area, it'll be horrible - and she'll think she is scarred for life. BUT I am here to tell you that with the help of The Onc Nurses, her skin can look as good as new.

    Mine had me clean with UltraKlenze, then apply a cream (she gave it to me - my chemo brain cant remember, sorry), I know I use Aloe Gel every day now. - but going back - clean the area, apply the lotion, apply dressing over the top, and add a piece of tube dressing to bring out the mummy effect, (to keep it all in place - took 2 ish weeks to heal up

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