Help please!

Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in IBC (Inflammatory Breast Cancer)

A church sister of mine has IBC and she is starting treatments .Her doctor has told her chemo, rad, and no mastectomy? Is this right? He has given her such little hope ( 3 to 6 months ) .I have never heard of this is ,in this day in age with such great medications. I am a stage lll'er and I know the advances has  given hope to everyone. Has anyone heard of no mastectomy ? Any help would be so appreciated .  Thank you. Benita

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  • itslisalouwho
    itslisalouwho Member Posts: 74
    edited October 2007

    I was reading in Susan Love's book just today about IBC.  Mast. doesn't really do anything, since so much of the cancer is on and in  the skin.  Best hope for IBC starts with rads, chemo and then, maybe a mast.

    with that said....the book I have is now 5 yrs old.  maybe things have changed.  I'ld check the Susan Love site if I were you.

    Best of luck.

    Lisa

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  • shrink
    shrink Member Posts: 936
    edited October 2007

    I'm an IBCer too.  I have surgery (MRM) scheduled for the end of November.  I'm Stage IIIb, have a grade 3, 6cm tumor.  But I also have ILC, IDC, and DCIS.  The way it was explained to me is that although the tumor has shrunk a lot with chemo first, the original tumor could have spun off cancer cells in the rest of my breast so it's best to have it removed.  The question about the cancer cells being on and in the skin is something I'm concerned about and plan to discuss with my bs at my next appt. Perhaps the radiation in January and February will kill off any remaining cells.

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  • shrink
    shrink Member Posts: 936
    edited October 2007

    Benita:  It may be that your friend is Stage IV and that there has been metastisis in which case, I don't think mastectomy is an option. I was also told that I would have 6-9 months to live unless I had treatment.  Of course, I chose to have the treatment which inproves my odds of surviving to about 40% at five years.  I plan on doing better than that! I hope your friend does too.

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  • Squeaker
    Squeaker Member Posts: 87
    edited October 2007

    Benita - In such a frenzied time as dx, it's hard to keep track of "what's happening when". Your friend is lucky that she has you to maybe help her thru this. (I just did the same thing for a good IBC friend this past yr. She graduated from rads last week!) You're right on track w/ the std IBC protocol, surgery is the pref third step. Her staging and hormone status may make her further along, but that should not preclude her MD & the two of you doing everything you can to make sure her tx is all inclusive!  Listen & help her realize the fight must go on in every possible way.  Good Luck!! 

    PS I love that grinning avatar of yours!!

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  • kimmie39
    kimmie39 Member Posts: 319
    edited October 2007

    Sounds a little fishy to me.

    Maybe your friend didnt take in the whole conversation with her Dr. I know the first time I was diagnosed all I heard was about the first three sentences and then I just shut down. Do you think she would allow you or a family member to go in with her and talk some more? Any decent Dr. should completely understand and the helper could bring along a list of questions and pen and paper to take notes of exactly whats going on.

    With that said a second opinion is ALWAYS a good option. No shame its her body and life.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Thank you to everyone for your help, I will ask her if I can accompany her to her next doctor visit. I know she is in stage IV, mets in liver , bones and lungs and she is doing chemo now rads next,I will take notes and get back . Thank you all again. God bless you and may Heaven smile upon you. Benita 

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