has anyone had more than 70% of your tongue removed and reconstructed?

wishformiracle
wishformiracle Member Posts: 5
in Head and Neck Cancer #1
Hi, has anyone had more than 70% of your tongue removed and reconstructed? My hubby is going for the surgery very soon. A huge portion of his tongue will be removed and reconstructed. We were told speech will be badly affected and taste bud gone forever as well as swallowing problem. however, there will be speech and swallowing therapies prepared for him after surgery.

As the surgery date is getting closer and closer, I'm getting more and more worried and scared. it is so painful to see him going through such major surgery. I'm sure there will be a lot of frustrations and struggling through the recovery period, am I right? has anyone had such experience to share?

How I wish there will be an alternative treatment to this.
Thanks in advance.

Comments

  • Irishgypsie
    Irishgypsie Member Posts: 333
    #2
    2nd opinion!!
    Mine was tonsil; but as others would agree on this board, I hope your husband got 2nd and 3rd opinions. There are alot of options to help with tongue cancer (Davinci, Cyber knife, some don't have any surgery and just use chemo and rads! Good luck!!

    Charles
  • Sam999
    Sam999 Member Posts: 319 Member
    #3
    Irishgypsie said:

    2nd opinion!!
    Mine was tonsil; but as others would agree on this board, I hope your husband got 2nd and 3rd opinions. There are alot of options to help with tongue cancer (Davinci, Cyber knife, some don't have any surgery and just use chemo and rads! Good luck!!

    Charles

    I agree, you definately need
    I agree, you definately need to go for 2nd and 3rd opinion, losing taste buds for ever is an extreme thing and should be rersorted as last option.

    I know someone whose tongue was more than half cut and is doing okay after about one and half year.

    If you are from area closer to NYC, you could send me email and I can give info on my doc. He is the head of HNC at MKSCC and has 30 years or exp in toungue surgery.

    One of my friends husband went to UPenn medical hospital and got themselves into a trial of a very unique surgery done by robot for the base of the tongue tumor. He is back to work and doing really well. Look for trials in good medical school hospitals in your area. I know you must be overwhelmed, if you like you could post the area you are in and anyone on this board who has time could lookup and help you out.

    Stay strong, this is a tough road but medical science has come a long way and i am sure something could be done. Also this is one of the best bunch of folks here on this board to help you out thru this.

    Sam
  • Ingrid K
    Ingrid K Member Posts: 813
    #4
    Hi wishfor... I just sent
    Hi wishfor... I just sent you a private message also. I had 75% of my tongue removed and I am doing fine. My tongue was rebuilt with tissue, muscle and artery from my forearm and my new tongue works remarkably well. I did lose all my taste buds for about 6 months total, but they have mostly come back and every week I can eat/taste additional foods.

    As for speech, everyone tells me I talk fine. They can understand me...a little harder on the telephone, but I have had no major problems. Did not need any speech therapy but it was available to me. I was only in the hospital for one week. I recovered quicker from the surgery than from the radiation.

    If they get the entire tumor with clean margins, they may not recommend radiation at all and he will be done and on his way to recovery.

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