Hello

rohini_b
rohini_b Member Posts: 3 Member
edited July 2022 in Head and Neck Cancer #1

I was recently diagnosed with tongue cancer and surgery has been recommended which I want to opt-out of . Is there anyone else here who refused surgery of the tongue and just did radiation instead?

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #2

    Hello, rohini and welcome to the forum, the place people never thought they would be. Or at least hoped not.

    So you recently were diagnosed with tongue cancer and they recommend surgery. But you do not want their treatment recommendation. I am sure you have a reason so maybe you can share it. I am assuming your doctor who found this confirmed it as cancer with a biopsy. Maybe you can share some more, has a PET scan been ordered. How did you realize you had the problem, was your tongue sore? Is it squamous cell cancer that is what many H&N cancers are? Also one last question, how large is the cancer, just a small spot or medium, or is it what the doctors consider large?

    rohini I had tongue cancer and just to share my story, it was a small spot and I had surgery and the doctor was able to obtain clear margins, and no follow-up treatment was involved, such as chemo or radiation. I would take a guess and say a tongue cancer situation could be treated with just radiation but I don't know for sure.

    Every case is different and some people have surgery and follow-up treatment to clean up any errant cancer cells from the area so no cancer is left there.

    I can say this cancer is not something to take lightly you want to get it out of your body in one treatment segment whether it be surgery, radiation, surgery and follow-up radiation for a larger tumor or any other way such as added chemo. No matter what get it once and done.

    So all that being said I think since you don't want to go with the recommended treatment it might be a good idea to get a second opinion from another cancer doctor or cancer center in your area so you have another opinion to help you be sure you are making the right choice. Don't take chances. Be sure and comfortable with your decision and treatment.

    Wishing You the Best

    Take care, God Bless-Russ

  • rohini_b
    rohini_b Member Posts: 3 Member
    #3

    Thank you for answering my query. The tumor on my tongue was very tiny and was taken out and was malignant and then another one popped up which is still there and the surgeon said he would cut as much tongue as needed once I am in surgery since they will not know till they keep cutting where the cancer is .. He is the best surgeon in CA in UCI and I do trust him but do not want to wake up with my tongue gone or a new tongue constructed from my thigh. If the surgery is major, the recovery is very long and painful and tubes are inserted for feeding .. which sounds horrific. My pet scans were all clear so it has not spread anywhere. I wanted to know if anyone in this forum opted out of surgery like me ???

  • SuzJ
    SuzJ Member Posts: 446 Member
    #4

    You have to look at it from the other side. Skin that has been radiated doesn't like to heal as well as "clean" skin.

    I went the radiation/chemo then surgery route as I am not a "wait and see " person and wanted it just gone!

  • Stronggbow
    Stronggbow Member Posts: 5 Member
    #5

    I had a small tumor on my tongue, it had also spread to the lymph nodes on the same side. While the surgery sounds horrific, I had part of my tongue removed, rebuild with a piece from my arm, and a neck dissection. I actually recovered from that pretty quickly.

    The radiation was much worse and 7 years later I am still recovering from that.

    I would get the surgery myself, followed by radiation to make sure they get it and kill the cancer.

  • rohini_b
    rohini_b Member Posts: 3 Member
    #6

    Thank you, I am really worried about such an invasive surgery .. How long did it take you to heal? Did you need feeding tubes and for how long?

  • Stronggbow
    Stronggbow Member Posts: 5 Member
    #7
    https://csn.cancer.org/discussion/comment/1697568#Comment_1697568

    I think the healing part is different for everyone. I was out of the hospital in 6 days, which my surgeon said was the 2nd fastest of his patients. I had the feeding tube already in, and a tube up my nose. The one up my nose came out at the 2 week point and I was eating pizza a month after surgery.

    What I really needed the feeding tube was for the radiation. I couldn't eat much after a couple weeks into radiation. I started radiation the end of March, ended it about May 10th, and didn't get the feeding tube out until the end of September. I had to show I could maintain my weight for a couple weeks without supplementing with the feeding tube.

    After going thru radiation and the damage that did, the surgery didn't seem as bad by comparison.

  • Robby67
    Robby67 Member Posts: 14 Member
    #8

    I had that same thing. Dr used surgery as last result. Is your Dr older? I was told I would lose my tongue. And it was tiny tumor.

  • Robby67
    Robby67 Member Posts: 14 Member
    #9

    Very true. A feeding tube maybe need. I had one too. But again the found 2 cancers tested back to back.

  • jatj
    jatj Member Posts: 4 *
    #10

    Radiation and chemo is not easy. The benefit of surgery is the possibility of clean margins. If the surgeon is able to remove the whole tumor and get clean margins then, more than likely, Rad and chemo won’t be necessary.

    I was diagnosed in 2020. Had the tumor removed from the base of my tongue and my right tonsil and 37 lymph nodes removed from the right side of my neck. Followed with 30 Rad treatments and 1 chemo.

  • Robby67
    Robby67 Member Posts: 14 Member
    #11

    Oh my. What great news

  • Robby67
    Robby67 Member Posts: 14 Member
    #12

    Meaning we all go through hell but you sound better for it.

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