SCC 1/2 of tongue removed and lymph nodes

bdsmom
bdsmom Member Posts: 1
in Head and Neck Cancer #1

I'm new here and at this stage just scared to death. My son is a "special" individual (William's Syndrome); 31 years old. He had 1/2 of his tongue and lymph nodes on both sides removed two weeks ago. Continue to deal with the trach and PEG. We have an appointment with radiation oncology week after next. They are not certain if he could handle radiation due to the nature of William's; anxiety and depression. Has anyone here said "no" to radiation; how has the outcome been? SCC was present in two spots in the lymph nodes and had started into the nerves. Thanks in advance.

 

Mary Ann

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Welcome to the H&N Group

    Welcome to the H&N Group, but also sorry you need to be here.  I never had radiation or chemo, just surgery. Radiation was not needed in my case as the tumor was just above my local cords Supraglottic SCC stage 3, and severe COPD so it was surgery to remove my larnyx and neck dissection on both sides. I don't know of any off hand that didn't do radiation unless all the margens are clear. They do often recomend chemo and Radiation, but I can see where it could be a problem. It is 30 ~35 treatments and tales about 6 or 7 weeks and after you are what is called, still cooking for a month or two. With what you have said about in going to the nerves and was already in two the lymph nodes. I'm no doctor and I don't know how to answer this other then just being blunt and honest. Odds arn't good without radiation is my guess. There are several others that have more experance with doing radiation who can answer this question.  Many that did do radiation and have to have the mask made to keep you in place so you don't move have anxiety and they take the medication first and do real good. This is a rough road you both are going down and at times it gets pretty rough. I wish you the best in your dission, and will keep you both in my prayers and thoughts.

    Bill

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #3
    Welcome Caregiver

    We all hate to see new posts from people who are heading into the storm waters like yourself.  My personal recommendation will be to go forward with the radiation and see how far or how many treatments he can take before feeling the effects.  Some take it quite well and suffer very little.  For most of us the side effects don't start until you're almost half way through.  Then the road gets rough to finish it.  But even if he got say 18 treatments out of the recommended 25-30, that would be better than not having any at all.  The less you tell him the better off he'll be.  Let his body dictate how he feels.  Don't tell him anything he doesn't need to know.

     

    Talk this through with your doctor.  Your concerns are valid and need to be addressed.  I'm very sorry for you and your son for having to walk through that door.  

     

    Tom

  • lifeisDHA
    lifeisDHA Member Posts: 64
    #4
    Radiation is tough

    but will give you a better outcome. As other said it's not that bad in the first few weeks. My boyfriend had very hard time only during the last two weeks of his 7 weeks treatment.

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    Mary Ann

    Welcome to the CSN H&N family, though we wish you didn't have need of us. Usually the standard of care includes radiation, unless the area has been radiated before...and even then, it may still be recommended. Perhaps there are some techniques or medications that can lessen the anxiety so that radiation is more plausible for your son to endure.

    It is a very difficult treatment to go through, but there are many, many survivors here on the message board to attest to the fact that it is worth it. And you will have our encouragement and support as you battle this disease with your son.

    Barbara

  • swopoe
    swopoe Member Posts: 492
    #6
    My husband has SCC of the

    My husband has SCC of the tongue too. He had part of his tongue removed, but not half. And while he has nerve involvement, it did not spread to the nodes, so he is stage 1. We decided to do radiation and chemo (6 weeks of radiation, 30 treatments total, and 1 day of chemo per week for 6 weeks of cisplatin). We are now half way done the chemo and a third of the way done the radiation.

    The radiation mask itself has not been hard on my husband, but I can see how it may be for your son with his other issues. And I am so sorry. But I do think doctors will suggest radiation or radation plus chemo. The chemo has been no big deal for my husband at all. No side effects to speak of...it just takes a whole day to do.

    I would think that there may be some medications your son could take to help him get through radiation or at least a partial course of it, and then adding the chemo would be a good idea, as it makes the radiation more effective.

    I wish you the best, and I am sorry you are starting this journey with us. You have my love and prayers.

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