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ConcernedSister10
ConcernedSister10 Member Posts: 3
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi Everyone,

My sister-in-law was just diagnosed last week.  She said that she does not want to look up IBC on the internet because she is just too scared, so she is relying on her doctor's information.  I have a lot of questions though.  She heard that her IBC is "not terminal," so I assume that it is stage 3 (one breast, some nearby lymphnodes, and the other breast looks "questionable").  She was told that she is ER- PR- and HER2/neu +.  She reports, however, that the HER2/neu + status is a good thing, according to her doctor, because there are good drugs for that.  

The more I read though, the more confused I am.  1.) Should she be more concerned/informed about her receptor status?  I'm not sure it sounds like such a good thing.  2.) Most importantly, when she beats this awful disease, how likely is it that that will be the end of it?  Is IBC really more like a chronic illness?  Will she be on drugs the rest of her life to ward it off?  

I just don't think I understand all of this, and no site just comes right out and discusses the reality of this cancer.  I'd like to know what she might be up against.  And also, do you think my sister-in-law needs to know these realities?  Should I encourage her to see another doctor if she is not getting right information?  Should I let her know "the right information" since she does not want to go online and face what must be a terrifying and overwhelming volume of stuff?

 Thanks for your input.  You all are so strong.  Keep fighting!

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  • ConcernedSister10
    ConcernedSister10 Member Posts: 3
    edited November 2010

    Also, what are the nodes and grades that people post?  And does the illness ever get below stage 3? 

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  • leisaparis
    leisaparis Member Posts: 587
    edited August 2013

    Hi there, I'm no expert, but was just dx this year. Well actually last year if you want to get technical,so have just gone through all the treatment myself. I also am ER-/PR- and HER2+. This means no hormone therapy. Herceptin worked great for me. That is most likely what they will put her on. IBC is an automatic Stage 3 dx. Depending on what all else is involved, depends on the final dx. Stage, grade, lymph node involvement, etc. I have a book somewhere that asks all kinds of questions about what all is involved so you can figure out most of this for yourself, before you have confirmation from the dr. If I can find it I'll post the questions, maybe that will help. Sorry for your sister-in-laws dx. Feel free to come back here and ask anything. These women are very informative and a great support system. Good luck to you and her. God bless. (((HUGS)))  Leisa

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  • chester2010
    chester2010 Member Posts: 101
    edited November 2010

    Sometimes the internet is very threatening and sometimes it is 'too much information' and too much doom and gloom.  It is all very overwhelming when you get the diagnosis of IBC. You are a very good support for your sister-in-law and she will certainly need that.  The treatment is rough but there are many women who live a long and healthy life afterwards.  IBCsupport.org is a good resource for encouragement and for answering any individual questions you may have.  Also ask your doctor/oncologist what local support services are available for all of you to help with the treatment options.  I have heard very good reports about Herceptin for HER2/neu+ but that will be after she's finished other treatments.  Good luck and God bless.

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  • leisaparis
    leisaparis Member Posts: 587
    edited November 2010

    I had Herceptin from start to finish with my treatment. It wasn't seperate. From my 1st chemo treatment for a full year. It is what I ended my treatment with. Everyone is different and all dr.'s treat differently. Your SIL's dr. will follow the protacall for your area. Good luck to her and your family.

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  • ConcernedSister10
    ConcernedSister10 Member Posts: 3
    edited November 2010

    Thank you for your input Ladies.  IBCsupport.org is great site, btw.

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