Is There a Set Protocol for Treating IBC Stage 4

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lovemyfriend
lovemyfriend Member Posts: 35
edited June 2014 in IBC (Inflammatory Breast Cancer)

Can somebody help me understand please?  My friend, BJ, was diagnosed with Stage IV IBC with mets to brain, lungs, and bones about 7 weeks ago (after a lot of wasted time on misdiagnoses).  Her only treatment so far has been 3 weeks of brain radiation at the start with a few "chemo" pills taken for 2 weeks.

She did have another CT scan Tuesday of this week with no results given yet.  Her next appointment is in about 10 days with a surgeon to discuss a double mastectomy.  Chemo will be decided on around that same time as well.  Isn't this backwards?

BJ will not discuss much and has had many huge obstacles put in her path to cause her not to question how her treatment is being handled.  You see, her husband passed away a little over a week ago as well.  Her despair is indescribable. 

I'm just a friend helping (or trying to help) her get the care she needs for herself.  Hopefully some of what I've said makes sense.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited May 2009

    I'm with Gg08 your friend should not have surgery.  Please do not let them do this to her. There is no need to take the breast with so much disease.

    I hate to come right out and say this to you but you need to be prepared and also start preparing your dear friend for why these things are happening. And I'm sad to say your friends doctor's are only treating her in areas of quality of life.  They are not treating to even stop progression. I so sorry BJ has had this happen but this disease is so aggressive and with her mets her doctor's do not think she has long. If she had one or two mets I think she could have months/year but with so much disease it is very hard for the doctor's to treat so many places.  The pill is probably Xeloda and is like taking a baby aspirin for so much cancer. 

    Your dear friend has gone through so much...You may want to get a advocate involved in her care and hopefully they will also get her some emotion help with dealing with this diagnoses.

    God Bless you both and I've added you to my prayer list

    Flalady

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  • lovemyfriend
    lovemyfriend Member Posts: 35
    edited May 2009

    Gg08 & FloridaLady,

    Thank you for your replies.  I appreciate your honesty.  Treatments for BJ just seemed all wrong when reading some of these other posts.  A lot of what you have said was probably known somewhere in the deep sad places of my heart.   Why her doctors would put her through a double mastectomy is appaling to me.  But...maybe she has closed her ears to the truth and is insisting on this? 

    Yes, she probably needs a professional to help her deal with this.  I'll try suggesting this but it's a VERY delicate situation.   Even though I am not the one who should be posting here (BJ won't), the support felt at these posts is amazing.  You have helped me to help BJ.  Thanks you so much.  God blessings to all of you wonderful women.

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