Radical Neck Dissection, Base of Tongue Cancer

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forhutch
forhutch Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
My friend, a 53-year-old male, was diagnosed with Stage IV base of tongue cancer (left side) in August 2005. Chemo, radiation, 80 pounds, and a mouthful of teeth later, they said the cancer was gone in May 2006. He began feeling some pain on the left side again in late 2006, but doctors said they could not see anything. They finally did scans in May 2007.

Let me pause here and explain that my friend is in prison where I am a volunteer visitor. I share this because he does not have the privilege of contacting the doctor with questions or asking for a second opinion. In fact, he only has access to the prison doctor except when he is taken out for a consultation or treatment. Of course, the prison doctor is not an oncologist or surgeon.

In July, an outside doctor told him they would have to remove part of his tongue. Last week, the prison doctor told him they would have to remove part of his tongue, and that he would have to have a permanent tracheotomy and permanent PEG tube. In addition, the prison doctor told me they would do a radical neck dissection, and that he might lose part of his esophagus and larynx, if he even makes it through the surgery. When I asked about reconstructing the tongue using tissue from the arm, the prison doctor said that was not possible because the tongue is a muscle.

Most of your stories are very encouraging, and they lead me to believe the prison doctor is mistaken.

My questions are:
In your experiences, what possibility is there that he will never be able to eat again? What is the possibility that he will not be able to speak again? If he does have to have the radical neck dissection, what kind of recovery time is he looking at? Am I only hearing the good stories because you are the survivors? I have a gazillion questions, yet they are spinning so wildly that I have trouble writing them. If you were him, what would you do?

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  • jkinobay
    jkinobay Member Posts: 298 Member
    #2
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    I wish I could help but my cancer is of a different nature. I can only verify what you say about this discussion board and confirm that there are some amazing "been-there-done-that's" here who can share a wealth of experience. Try to get in touch with SOCCERFREAKS. He has really helped me and numerous others. Best of luck to you and your friend. God Bless and keep the faith...........JK
  • jkinobay
    jkinobay Member Posts: 298 Member
    #3
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    Forgot to mention, go on this board back one page to a post dated 7-09-07 by SOCCERFREAKS. Click on the email icon below the message and that may put you in touch with him. Another possibility is to enter Chat Room 1 or 2, usually in the mornings and ask how to contact him or anyone else with experience with your issue. Good luck..........JK
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    jkinobay said:

    Forgot to mention, go on this board back one page to a post dated 7-09-07 by SOCCERFREAKS. Click on the email icon below the message and that may put you in touch with him. Another possibility is to enter Chat Room 1 or 2, usually in the mornings and ask how to contact him or anyone else with experience with your issue. Good luck..........JK

    I am so sorry to hear about your friend. I can tell you from first-hand experience that the doctors CAN replace tongue tissue with tissue from the arm, since they did it for me (along with nerves!!!). It IS expensive and it DOES require a surgical team with some experience, for sure, but in the end, amazingly, the tissue from the arm actually becomes like tongue tissue, due to the reactions that go on in the mouth! It worked for me, and I have both speech and the ability to eat.

    In my case, incidentally, I also had a number of lymph nodes removed from the neck.

    Having said that, your friend, it seems, will be going through a bit more than I did, if they are also removing larynx and part of esophagus. That may change the equation entirely, re eating and speaking: I honestly can't say.

    Re the amount of time it takes to recover, that, again, depends on the particular individual and the extent of surgery and other treatment. I would advise you to expect a long surgery (15 hours or more), followed by four days of induced unconsciousness, followed by two weeks of hospital recovery time, followed by some 'at-home' recovery time, followed by about seven weeks of radiation, with chemotherapy thrown in during that time as well. THEN the recovery begins. I was up and about during this latter time, during rads and chemo, but was definitely fatigued.

    I sincerly hope that your friend is not just shuttled aside and not given the chance for survival. I am proof that the replacement surgery is not only possible but that it can lead to a relatively normal post-treatment life.

    On the other hand, to be perfectly candid, doctors may shy away from the procedures we are talking about simply because your friend is in a stage IV condition. My doctors have advised me, for example, that if the cancer has metastisized to my lungs, we will no longer be considering cures, but will instead be focusing on palliative care. There is that to consider.

    It seems your friend has some hurdles to overcome in addition to cancer, and that is too bad. I wish him well and salute you for your concern and effort on his behalf.

    Take care and do not hesitate to email me directly on this site if I can be of any help.
  • Unknown
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  • hjc1961
    hjc1961 Member Posts: 8
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    soccerfreaks said:

    I am so sorry to hear about your friend. I can tell you from first-hand experience that the doctors CAN replace tongue tissue with tissue from the arm, since they did it for me (along with nerves!!!). It IS expensive and it DOES require a surgical team with some experience, for sure, but in the end, amazingly, the tissue from the arm actually becomes like tongue tissue, due to the reactions that go on in the mouth! It worked for me, and I have both speech and the ability to eat.

    In my case, incidentally, I also had a number of lymph nodes removed from the neck.

    Having said that, your friend, it seems, will be going through a bit more than I did, if they are also removing larynx and part of esophagus. That may change the equation entirely, re eating and speaking: I honestly can't say.

    Re the amount of time it takes to recover, that, again, depends on the particular individual and the extent of surgery and other treatment. I would advise you to expect a long surgery (15 hours or more), followed by four days of induced unconsciousness, followed by two weeks of hospital recovery time, followed by some 'at-home' recovery time, followed by about seven weeks of radiation, with chemotherapy thrown in during that time as well. THEN the recovery begins. I was up and about during this latter time, during rads and chemo, but was definitely fatigued.

    I sincerly hope that your friend is not just shuttled aside and not given the chance for survival. I am proof that the replacement surgery is not only possible but that it can lead to a relatively normal post-treatment life.

    On the other hand, to be perfectly candid, doctors may shy away from the procedures we are talking about simply because your friend is in a stage IV condition. My doctors have advised me, for example, that if the cancer has metastisized to my lungs, we will no longer be considering cures, but will instead be focusing on palliative care. There is that to consider.

    It seems your friend has some hurdles to overcome in addition to cancer, and that is too bad. I wish him well and salute you for your concern and effort on his behalf.

    Take care and do not hesitate to email me directly on this site if I can be of any help.

    my husband Andrew diagnosed with stage 4 tonsil bse of touge
    Good Evening I am reading your post with interest my hsband Andrew was diagnosed with stage 4 tonsil cancer in 2009 and received chem/rads and had a reoccrence 11 months later and had a radical neck dissection at Johns Hopkins in September of 2010, had complications and they had to use muscle flap from his pectoral in the end. He had a small spot on the base on his tounge which has affected his speech somewhat, Andy had been in swallow therapy for 7 months and just swallowing nectars now,

    My question is, was tissue from your arm connnected to your tounge during the radical neck dissection as this was never mentioned to us as an option for the tounge. My husbands palate is intact andhe does have a gag reflex, any insight you can offer would be helpful.

    So glad you are doing well
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #7
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    hjc1961 said:

    my husband Andrew diagnosed with stage 4 tonsil bse of touge
    Good Evening I am reading your post with interest my hsband Andrew was diagnosed with stage 4 tonsil cancer in 2009 and received chem/rads and had a reoccrence 11 months later and had a radical neck dissection at Johns Hopkins in September of 2010, had complications and they had to use muscle flap from his pectoral in the end. He had a small spot on the base on his tounge which has affected his speech somewhat, Andy had been in swallow therapy for 7 months and just swallowing nectars now,

    My question is, was tissue from your arm connnected to your tounge during the radical neck dissection as this was never mentioned to us as an option for the tounge. My husbands palate is intact andhe does have a gag reflex, any insight you can offer would be helpful.

    So glad you are doing well

    tonge replacement
    The tongue 'resection' was performed at the same time as the radical neck dissection but I always considered it a different procedure because in addition to carving the neck, they split the lower half of my face in half, including lip, teeth, gums, chin, all the way down to the neck. They then removed a credit card-sized piece of meat from my left arm, along with nerves running back to the elbow (and down to the bone), which they used to replace much of my tongue while running the nerves down to my shoulder where they were attached to existing nerves there.

    There were two principal ENT surgeons involved with the surgery along with a nerve transplant specialist (a rare breed at the time, although that has probably changed, as this was in 2005).

    The arm stuff HAS mutated into a tongue as they predicted, but it is smaller than I would have liked, so that it is difficult to reach my molars, although I am getting better at it with usage and exercise. There continue to be limitations to eating, although I continue to overcome them regularly. Speech is not as refined as it once was (at least in my opinion :)). Suprisingly, though, were it not for the weight loss you would have to look closely to see any signs of an operation: they did a great job of putting me back together for the most part.

    You are not alone, apparently, in not being offered that option. I do not recall running into anyone here who has had the precise operation that I did, so maybe I was a guinea pig (?).

    I know of a number of stage IV head/neck cancer survivors who are living successful lives, however, one of them, my friend, SASH, now a 10 year survivor.

    If I can be of any help, please don't hesitate to ask.

    In the meantime, I wish your husband and his family the very best.

    Take care,

    Joe
  • hjc1961
    hjc1961 Member Posts: 8
    #8
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    soccerfreaks said:

    tonge replacement
    The tongue 'resection' was performed at the same time as the radical neck dissection but I always considered it a different procedure because in addition to carving the neck, they split the lower half of my face in half, including lip, teeth, gums, chin, all the way down to the neck. They then removed a credit card-sized piece of meat from my left arm, along with nerves running back to the elbow (and down to the bone), which they used to replace much of my tongue while running the nerves down to my shoulder where they were attached to existing nerves there.

    There were two principal ENT surgeons involved with the surgery along with a nerve transplant specialist (a rare breed at the time, although that has probably changed, as this was in 2005).

    The arm stuff HAS mutated into a tongue as they predicted, but it is smaller than I would have liked, so that it is difficult to reach my molars, although I am getting better at it with usage and exercise. There continue to be limitations to eating, although I continue to overcome them regularly. Speech is not as refined as it once was (at least in my opinion :)). Suprisingly, though, were it not for the weight loss you would have to look closely to see any signs of an operation: they did a great job of putting me back together for the most part.

    You are not alone, apparently, in not being offered that option. I do not recall running into anyone here who has had the precise operation that I did, so maybe I was a guinea pig (?).

    I know of a number of stage IV head/neck cancer survivors who are living successful lives, however, one of them, my friend, SASH, now a 10 year survivor.

    If I can be of any help, please don't hesitate to ask.

    In the meantime, I wish your husband and his family the very best.

    Take care,

    Joe

    radical neck dissection
    Hi Joe,

    My husband had the same exact surgery you describe in September of 2010, tissue was taken from his arm and used in his mouth also. He then developed an infection and a salivary leak which led to an emergency operation, he lost alot of blood and the flap tissue died as a result and then they had to do a third surgery in October that used tissue from his pectorial, and split his jaw to get the tissue in. He too is struggling with eating, approx. how long did it take you before you had your PEG tube removed and wwere able to get nutrition through the mouth?

    Happy you are doing well and your friend also, a ten year survivor WOW that is awesome and so encouraging! IT is hard for my husband, he struggles with eating but is still getting therapy and trying so hard. My two sons have had a tough time seeing their father change and go through so much but it does make you stronger and approach life in a different way.



    I wish you and your family well also and many more years of good living for you.

    Thanks and God Bless

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