Hi..I'm new to this forum

MrsMB2
MrsMB2 Member Posts: 8
in Head and Neck Cancer #1
I thought I will give you all my story. I was first diagnose with tongue cancer in 1995. I have no known risks factors but I guess that does not matter. I had my first surgery in January of 1995 and had to go back in in February because the margins were still not clear. I was cancer free until 2009, since then I have had 5 surgeries. In July of 2009 I had a new cancer on the other side of my tongue which was removed, then again in June of 2010, followed by November 2010, march 2011 and the most recent may 2011. Needless to say going through a very difficult time.

The last 2 surgeries were done by the doctor I went for a second opinion. I thought that maybe a cancer specialist, not just an ENT, could give me an alternate course of treatment. However, he is of the same opinion as my previous doctor, continue to remove the lesions as they appear. Both the doctors advise me not to have radiation treatment because of the devastating side effects. I just wished there was something I could do to try an prevent it from reoccurring.

Yesterday was two weeks from my surgery. I still have lots of pain, I suppose is because they also remove a part of the bone. I have dental implants and I'm unable to wear the prosthesis and that has me pretty depressed. Specially since I'm in the middle of the final details of my daughters wedding.

Anyways, just wanted to tell someone of my situation and maybe feel a little less lonely.

Comments

  • Dav1965
    Dav1965 Member Posts: 132
    #2
    I understand
    I have had 95% of my tongue removed and replaced with my thigh. I also have had chemo and radiation. I dont understand why you did not get chemo and radiation treatment. I am sorry you are having a tough time now. I am glad you have found this website because there is plenty of good information. Did they replace your tongue with your arm or thigh?
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Mrs. MB2
    We are glad to have you as part of our family here on CSN, sounds like you have lived through a lot of pain and sorrow. I also had my cancer come back three times two of them I did Radiation and only one chemo and yes the long term side effects of the rad treatment is sometime worse then the cancer to live with, but just glad I am still here to tell the story.

    Take care and please keep posting.
    Hondo
  • MrsMB2
    MrsMB2 Member Posts: 8
    #4
    Dav1965 said:

    I understand
    I have had 95% of my tongue removed and replaced with my thigh. I also have had chemo and radiation. I dont understand why you did not get chemo and radiation treatment. I am sorry you are having a tough time now. I am glad you have found this website because there is plenty of good information. Did they replace your tongue with your arm or thigh?

    Radiation side effects
    I've been treated by 3 doctors for my cancer and they all agree that the course of treatment is to continue to have surgeries as the lesions appear. I had a chance to read through some of the posts and realize some of the terrible side effects the doctors were telling me about. My current doctor also indicated that some of the side effects will not ever go away. Some of the posts also convey this, such as dry mouth, which I already have without the rad. Also, a little terrified of the possibility of feeding tube,

    I also don't know how much more tongue can be removed. Amazingly enough, after 7 surgeries, I have a lot left, I suppose - lol. I also realized through the posts that the tongue can be reconstructed. It just sounds a little weird to me. Don't want to think about that at this point. Still praying to God that this is the last of my surgeries.....
  • Scambuster
    Scambuster Member Posts: 973
    #5
    What have you done since 1995
    Hi Mrs MB2,

    Sorry to hear you are back getting more surgery. Everybody's lurking fear.

    You have survived 16 years before your cancer returned or raised it ugly head. I am very curious what else you did since 1995 regarding change of lifestyle, Diet, exercise, other treatments or therapies ???

    Our Doctors seem to neglect to advocate a change in lifestyle to increase the possibilities of a better outcome after we get through the wretched Surgery, Chemo and Rads. While diet and lifestyle may not save 100% or us, the improvement on the numbers far outweighs most 'improved chances' offered by Chemo. Your 16 years Cancer free with no Chemo or Radiation is reassuring. Rushing out to get Chemo and Rads now certainly would require some serious consideration beforehand.

    You are valuable asset to us MrsMB2 as you are one of the earliest people we have encountered online who had this Cancer. I trust we will hear more from you and also exchange ideas and experience.

    Regds
    Scambuster

    God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference.
  • MrsMB2
    MrsMB2 Member Posts: 8
    #6
    Scambuster said:

    What have you done since 1995
    Hi Mrs MB2,

    Sorry to hear you are back getting more surgery. Everybody's lurking fear.

    You have survived 16 years before your cancer returned or raised it ugly head. I am very curious what else you did since 1995 regarding change of lifestyle, Diet, exercise, other treatments or therapies ???

    Our Doctors seem to neglect to advocate a change in lifestyle to increase the possibilities of a better outcome after we get through the wretched Surgery, Chemo and Rads. While diet and lifestyle may not save 100% or us, the improvement on the numbers far outweighs most 'improved chances' offered by Chemo. Your 16 years Cancer free with no Chemo or Radiation is reassuring. Rushing out to get Chemo and Rads now certainly would require some serious consideration beforehand.

    You are valuable asset to us MrsMB2 as you are one of the earliest people we have encountered online who had this Cancer. I trust we will hear more from you and also exchange ideas and experience.

    Regds
    Scambuster

    God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference.

    ...I'm ashamed to say...
    I really din't make any lifestyle changes when I was first diagnosed. I guess I was lucky to be cancer free for almost 15 years. As a matter of fact, although not consistent, I think i was eating more fruits and vegetables on the last two years than ever before. I really don't know what that means. I suppose I can say I do not follow the norm with anything.
  • hawk711
    hawk711 Member Posts: 566
    #7
    MrsMB2 said:

    ...I'm ashamed to say...
    I really din't make any lifestyle changes when I was first diagnosed. I guess I was lucky to be cancer free for almost 15 years. As a matter of fact, although not consistent, I think i was eating more fruits and vegetables on the last two years than ever before. I really don't know what that means. I suppose I can say I do not follow the norm with anything.

    MrsMB
    I never had surgery, but had chemo and rads. Yes the side affects are great, but I am glad to be cancer free, even with the hassle of what to eat and how. I wish you the best as you go through this crap. Keep posting, alot of good people here to help,
    Good luck and may you now and forever be cancer free!!!
    Steve
  • Pam M
    Pam M Member Posts: 2,196
    #8
    MrsMB2 said:

    Radiation side effects
    I've been treated by 3 doctors for my cancer and they all agree that the course of treatment is to continue to have surgeries as the lesions appear. I had a chance to read through some of the posts and realize some of the terrible side effects the doctors were telling me about. My current doctor also indicated that some of the side effects will not ever go away. Some of the posts also convey this, such as dry mouth, which I already have without the rad. Also, a little terrified of the possibility of feeding tube,

    I also don't know how much more tongue can be removed. Amazingly enough, after 7 surgeries, I have a lot left, I suppose - lol. I also realized through the posts that the tongue can be reconstructed. It just sounds a little weird to me. Don't want to think about that at this point. Still praying to God that this is the last of my surgeries.....

    Hello
    I'm hoping this is the last surgery you need, too.

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