Facing surgery

phattpig
phattpig Member Posts: 29
edited March 2014 in Head and Neck Cancer #1
HI everyone, I was told that now that I have finished the second round of chemo, I am able to have surgey to try to remove the last of the cancer. Thje doc said that I could possibly lose part or all of my tongue, my voice box, what little ability to swallow I currently have, and the ability to speak. And there is no guarantee that they will be able to get all of the cancer out. So I am looking for options, and opinions from anyone who has had this type of surgery. Based on the limited information I have at this point, I am inclined to say no to the surgery. Any input will be a great help. Thanks in advance.

John

Comments

  • ilevin
    ilevin Member Posts: 24
    #2
    I don't have any good suggestions as I've often wondered what I will decide if/when faced with these options. I will suggest a resource of writings written by a journalist who had oral cancer. Go to
    www.times-archive.co.uk/JohnDiamond/index2.html
    and read some of the articles. Unfortunately John Diamond did not ultimately survive his cancer but I found it very helpful to me to read his writings on the progression of the disease over the four years of his illness. Very often his words expressed the frustrations I was facing dealing with doctors and other aspects of the illness. Much of his writing is also in the book "Because Cowards Get Cancer Too." I highly recommend it.
    ilene
  • phattpig
    phattpig Member Posts: 29
    #3
    ilevin said:

    I don't have any good suggestions as I've often wondered what I will decide if/when faced with these options. I will suggest a resource of writings written by a journalist who had oral cancer. Go to
    www.times-archive.co.uk/JohnDiamond/index2.html
    and read some of the articles. Unfortunately John Diamond did not ultimately survive his cancer but I found it very helpful to me to read his writings on the progression of the disease over the four years of his illness. Very often his words expressed the frustrations I was facing dealing with doctors and other aspects of the illness. Much of his writing is also in the book "Because Cowards Get Cancer Too." I highly recommend it.
    ilene

    Ilene,

    Thanks for the information, I'll go and check out the articles. I know that it is hard to give someone advise on something like this, but I am just trying to get as much info, and as many opinions as I can. I am having my ENT set me up an appointment with a hospital in Houston, TX that is supposed to be the best in this area for cancer treatments.

    Again, thanks for your response.

    John
  • phattpig
    phattpig Member Posts: 29
    #4
    ilevin said:

    I don't have any good suggestions as I've often wondered what I will decide if/when faced with these options. I will suggest a resource of writings written by a journalist who had oral cancer. Go to
    www.times-archive.co.uk/JohnDiamond/index2.html
    and read some of the articles. Unfortunately John Diamond did not ultimately survive his cancer but I found it very helpful to me to read his writings on the progression of the disease over the four years of his illness. Very often his words expressed the frustrations I was facing dealing with doctors and other aspects of the illness. Much of his writing is also in the book "Because Cowards Get Cancer Too." I highly recommend it.
    ilene

    Ilene,I went to the site for John Diamond's articles. They were insightful to say the least. I notice that you said you had part of your tongue removed, I am wondering how you coped with this. Are you able to eat and swallow? My doctor has said that I would lose part of my tongue, maybe even all of it. I am still waiting to go to Houston to talk to the doctors there. I'll let you know what they say, and what I finally decide to do.
    Again, thanks for your response.

    The best to you and your family.

    John
  • ilevin
    ilevin Member Posts: 24
    #5
    phattpig said:

    Ilene,I went to the site for John Diamond's articles. They were insightful to say the least. I notice that you said you had part of your tongue removed, I am wondering how you coped with this. Are you able to eat and swallow? My doctor has said that I would lose part of my tongue, maybe even all of it. I am still waiting to go to Houston to talk to the doctors there. I'll let you know what they say, and what I finally decide to do.
    Again, thanks for your response.

    The best to you and your family.

    John

    John, I'll post a general reply here but I'm also sending an email to the address listed on your web page. Let me know if you receive it.
    After my first surgeries in 1987 I lost about 1/4 of my tongue. With some therapy and effort I was able to speak normally and eat everything except the very toughest food. Swallowing was not a problem. After two surgeries a year ago I now have about 1/2 my tongue but I was still able to eat and swallow a wide variety of food until I had radiation. Now I stick to soft foods and soups.
    Ilene
  • blitzbob`
    blitzbob` Member Posts: 17
    #6
    Hi If it was me it would be NO NO NO to surgey John diamonds life was hell after all that surgery and what for its up to you but decide whats best for you no one else

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