Caregiver/sister looking for others with triple neg/BRCA1 positive

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Hi folks, I'm new to the site and am hoping for some help for my sister.

She was diagnosed with triple negative invasive ductile breast cancer just before Thanksgiving. She had the BRCA gene test right before Christmas which came back positive for the BRCA1 mutation. She has not yet had surgery (soon, probably this month) and is very scared. She is facing bilateral mastectomy with node removal on one side, immediate reconstruction as well as ovary removal. Chemo will follow, then radiation.

She would like to connect with other women who have shared the same disgnosis and treatment. I understand this is a very rare combination, but I'm really hoping someone on this site can help. She is very afraid and I think talking to others would be beneficial for her.

Bless you and thank you for your help.

Comments

  • Klgibson
    Klgibson Member Posts: 1
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    Tnbc
    I am very sorry to hear your sister has breast cancer. I know you are very concerned about her. I am tnbc also. I recommend googling the following for more info: Triple, negative breast cancer foundation. This is an outstanding resource for info and the support from the women who post is like no other. Also google Jennifer griffins blog, no surrender and positives about negative.

    Depending on her diagnosis and her doctor's advice of course, she may want to consider neoadjuvant chemo because she will have a chance to learn whether her chemo drugs are working. There is no way to confirm if the chemo drugs work if you have surgery first. This is important. Best of luck to you sister. I will keep you all, in my prayers.
  • atiredparent
    atiredparent Member Posts: 45
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    I am triple neg meddulary
    I am triple neg meddulary but waiting for BRCA results.

    I would suggest learning all you can and not panicking. It is a rare cancer and an aggressive cancer.

    Treatments are limited for TNBC meaning that estrogen or herceptin (?spelling) are not effective in treating it. The good thing is that because it is typically a fast growing cancer it typically responds better to chemo since chemo works on fast growing cells. I am telling you this because when I was first diagnosed I panicked because I read about TNBC being aggressive and treatment limited before my oncologist told me about it responding better to chemo.

    I would suggest finding a support group to attend as well.
  • hward2007
    hward2007 Member Posts: 62
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    BRCA1 Triple Negative checking on sister

    I saw your post & hope all is going and has gone well for your sister. I share her status and I'm curious as to how they treated her and how she's doing?

  • GlowMore
    GlowMore Member Posts: 789 Member
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    hward2007 said:

    BRCA1 Triple Negative checking on sister

    I saw your post & hope all is going and has gone well for your sister. I share her status and I'm curious as to how they treated her and how she's doing?

    hward....

    She has not been back since Jan 8, 2012..........   :/