Tongue reconstruction with free radial forearm flap after hemiglossectomy

utfandg
utfandg Member Posts: 6
edited July 2018 in Head and Neck Cancer #1

I had 50% of my tongue removed and replaced with a radial forearm flap. The surgery is extensive. I was in ICU for 12 days due to an infection in my neck. My main question is how long did it take for the free flap swelling to go down in order to completely close your mouth therefore increasing the ability to eat. I will be at week three on 4/25/18. I am drinking water. I am feeding with a peg tube currently. I am unable to start trying to eat with the current swelling.

My background is fighting tongue cancer for 23 years and I am currently 58.

Comments

  • Alpinelife
    Alpinelife Member Posts: 12
    #2
    Similar Situation

    Had the same operation (60% of tongue removed), wrist in mouth trick, as well as a modified radical neck dissection. It took me about a month to be able to eat soft foods and about another 3 weeks for most other foods. Post chemo and radiation had much more impact on eating, but that’s another story. Just accept that you can adapt to a new normal - life can be good again, just a bit different. 

  • utfandg
    utfandg Member Posts: 6
    #3
    Alpinelife said:

    Similar Situation

    Had the same operation (60% of tongue removed), wrist in mouth trick, as well as a modified radical neck dissection. It took me about a month to be able to eat soft foods and about another 3 weeks for most other foods. Post chemo and radiation had much more impact on eating, but that’s another story. Just accept that you can adapt to a new normal - life can be good again, just a bit different. 

    Couple other questions

    Thanks. I will not have chemo and radiation at this time. I had both back in 2010. I did have to have the three bottom molars pulled for this procedure. Any issues with arm like strength and mobility? Any issues with hair growing on your new tongue? 

  • Alpinelife
    Alpinelife Member Posts: 12
    #4
    utfandg said:

    Couple other questions

    Thanks. I will not have chemo and radiation at this time. I had both back in 2010. I did have to have the three bottom molars pulled for this procedure. Any issues with arm like strength and mobility? Any issues with hair growing on your new tongue? 

    I've had no issues with arm

    I've had no issues with arm strength or mobility -- the area removed for the flap does feel stange.  I did have a hairy tongue, but radiation took care of that.  Not sure what happens long term without radiation to the hair on your tongue  -- check with your doc.  Best of luck, you can get through it... 

  • leapdaymom
    leapdaymom Member Posts: 10
    edited October 2018 #5
    In answer to the tongue question

    I am 15 years out from the surgery and I didn't have chemo or radiation either. The hair on your tongue will eventually just rub off and not grow back. It's been some months since your post so I am sure that you are noticing a difference. With the arm strength and mobility I would highly suggest some occupational therapy as well as scar therapy from the radial forearm flap. It really makes a difference!!!

  • jlew64
    jlew64 Member Posts: 2
    #6
    Was the surgery worth it?

    I am newly diagnosed Stage 3 squamous cell carcinoma of the tongue. I am scheduled for surgery next week and they are telling me they will take approximately 40% of my tongue and then recosntruct it with tissue from my left arm. My thinking is this... I will be 65 this year and have several other health issues. After reading some of the posts here of what appear to be mostly unpleasant stories about life after the surgery I am wondering if I should have the surgery or opt for less invasive treatment and take my chances. If I was 35 it would be a different story but at my age I'm wondering how long I can really expect to live... so why go through a disfiguring surgery. For what it's worth, I am scheduled for a second opinion from a non-surgeon oncologist 2-days prior to my surgery.

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #7
    jlew64 said:

    Was the surgery worth it?

    I am newly diagnosed Stage 3 squamous cell carcinoma of the tongue. I am scheduled for surgery next week and they are telling me they will take approximately 40% of my tongue and then recosntruct it with tissue from my left arm. My thinking is this... I will be 65 this year and have several other health issues. After reading some of the posts here of what appear to be mostly unpleasant stories about life after the surgery I am wondering if I should have the surgery or opt for less invasive treatment and take my chances. If I was 35 it would be a different story but at my age I'm wondering how long I can really expect to live... so why go through a disfiguring surgery. For what it's worth, I am scheduled for a second opinion from a non-surgeon oncologist 2-days prior to my surgery.

    The Big ?

    That is how long will we live? Is it just surgery or are you getting radiation and chemo follow up? How long is the recovery period and what are your docs telling you as far as how well you will feel with your new tongue. Certainly, it won't be the old you but when you are talking cancer most all of us on here had many new changes after treatment to get used to and it is called our "new normal". Many have had treatment and adapted to our new normal and got on with life and enjoyed living, you will too, things are just a little different now. You will have to work with your physicians here and get all the input you can and use your gut feeling somewhat. What are the less invasive treatments they are saying would work and what is the success rate with your kind of situation. None of us knows how long we have but if you don't address this and you live another 20-25-30 years or more you may well wish you would have and that would be one of those "woulda, coulda, shoulda" moments. As we always say on here NEGU "Never Ever Give Up".  God Bless

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