FATHER'S CANCER

JILLIANNE
JILLIANNE Member Posts: 5

My father died last June 25th at the age of 80 from IBC. He was treated over six months for pneumonia and diagnosed with IBC just weeks before his death. The shock of learning the diagnosis and not having support, and watching him suffer with this disease has left the family completely grief stricken. I want to know what I can do to help get the message out about this disease. I don't want to see other families going through what we did. Any suggestions? I am very new at this and don't know which way to turn.

Comments

  • JILLIANNE
    JILLIANNE Member Posts: 5
    edited May 2006

    Whoops, I forgot I also wanted to ask if anyone has had the experience of their breast tumor breaking open and seeping? Dad's did this about two weeks before his death. What came out was a greenish mucus substance. It was usually bandaged when we were there but I did see them change the bandages several times.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2006
    Hi Jill,

    I am sorry to hear of the loss of your father.

    Unfortunately I think most people believe men dont get breast cancer.

    I have no suggestions for educating people about this other than word of mouth. I think all physicians should have readable postings about this in the exam rooms. Other than that...........sorry no ideas.


    Again, I am sorry to hear of the loss of your father.


    gentle hugsssssssss
  • JILLIANNE
    JILLIANNE Member Posts: 5
    edited May 2006

    Thanks rhymeee! My father had suffered through several unusual health issues in the seven years before his death so we were in complete shock when we learned he had a rare form of breast cancer. And, I only learned it was inflamatory after his death and much research. I have written a book about all he went through but am now reluctant to have it published. It seems so sad and I don't want him remembered with only saddness.

  • M_J_sMoM
    M_J_sMoM Member Posts: 4
    edited May 2006

    I am so sorry for your loss. It must be so frustrating to have to deal with the grief and finding out about the disease after the fact. Have you tried looking into genetic testing for you or family memembers to see if it might be hereditary. Also, at the American Cancer Society might have some info that might help you. Good luck with your journey.

  • jgrjunque
    jgrjunque Member Posts: 47
    edited May 2006
    Quote:

    I have written a book about all he went through but am now reluctant to have it published. It seems so sad and I don't want him remembered with only saddness.



    There's no reason why you can't expand the book to be a tribute to his LIFE, as well as a record of his death. It might be healing for you to do this as well.
  • ocean
    ocean Member Posts: 11
    edited May 2006
    Jillianne
    I am sorry for your loss,I know how hard it is to watch your father die from cancer. I think that it is wonderful that you wrote a book. I agree with JGR-include how strong of a fighter he was and what a good man he was.
    You could contact Men's Health magazine about doing an article on men and breast cancer.
  • cowgirl
    cowgirl Member Posts: 777
    edited May 2006
    Jilliane,
    I am so sorry for your loss, I would do what ocean said. This needs attention as a mom of boys, it is on my mind quite often! The day I was dxed a man at my DH's work was dxed also. So it is getting more and more common from what I see.
  • lynnes
    lynnes Member Posts: 6
    edited May 2006

    I agree with prior posts, go for it. Talk with Men's Health and perhaps they can write a story and hook you up with a publisher. Sometimes it is done in the reverse, you publish the book and then the publisher helps you market the book via interviews. Good Luck! I'll bet you will help a lot of people with this information.

  • mkurtzman
    mkurtzman Member Posts: 33
    edited May 2006
    Jillianne, I am a male that has gone through the mastectomy, chemo, radiation and pain. in any event, I have tried to get the word out about male BC to no avail. Yesterday I went to the gym for the first time in 18 months. There were a few men in the locker rrom and the conversation turned to cancer. One man told of his prostate C. I told the group that i have had BC. They all looked at me in belief. When Ipicked up my t-shirt some of the men believed me.

    I have tried to get the word out on male BC. I have had only one Letter to the editor published. I have written to columnists that have wrtten articles exclusive to female BC hoping they would now write about male BC. I wrote to the Today Show and they chose not to reply. I thought maybe they would because the star of the show has a husband with some sort of cancer. I have written to ne health mag and received no reply. Well I am not ready to give up on getting the word out. Maybe you and I can somehow cooperate to get the word out.

    In any event my prayers for your father's soul and for your good recovery from grief.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2006
    Hi Jill,

    I really understand you don't want this book to reflect only the sadness surrounding this death but I really think this book will not only adress the pain, but I think it will be a book of hope also. When people read this, the message will at least to some degree begin to spread and with it the hope that more and more men will become aware of male BC and therefore lives can be saved. To me, that is whre the hope is. I sincerely hope you try and publish.


    it went " something " like this.........
    a journey of a thousand miles begins with a single step

    gentle hugssssssssss
  • JILLIANNE
    JILLIANNE Member Posts: 5
    edited May 2006

    Thanks for all your good wishes. I actually worked on the book a bit today and added some info about IBC. I am really beginning to see an importance to getting the message out about this disease. I can understand that the doctors' could not diagnose my father with the symptoms he had. I guess I will think about this a bit and see what the best way to go about it is.

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