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4trob
4trob Member Posts: 5
edited September 2020 in Stage IV/Metastatic Breast Cancer ONLY

I’m trying to locate anyone who is BRCA1 positive and triple positive and also HER2 negative. I’ve been told my cancer is unusual but not rare. I would also like to know if there are any doctors who have treated this type. I’ve had metastasis to my lung since 2015

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2020

    4trob, maybe you would like to clarify? Triple positive would be ER+PR+Her2+. Her2+ is Her2 positive, the opposite of Her2 negative. I think BRCA1 cancers are often triple negative.

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  • 4trob
    4trob Member Posts: 5
    edited September 2020

    Sorry, I realize that being both HER2 negative and positive seems like an oxymoron but it is possible. And I am BRCA 1 triple positive. I’ve been told this is unusual but not rare

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2020

    So, do you mean you have had at least two biopsies, and one showed Her2+ and one showed Her2-?

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  • moth
    moth Member Posts: 4,800
    edited September 2020

    4trob, so you are stage 4? Where are your mets? Have you had biopsies show both her2+ and her2- from same tumor or different tumors? Same time or different times? Was the testing ihc or fish? Are you in treatment right now?

    We can point you to subforums with similar dx but need more info :)
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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2020

    Thank you, moth. All questions I was trying to formulate in my tired brain. In her OP she says lung mets. 4trob, we are asking questions to figure out how to best assist you, so please bear with us!

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  • moth
    moth Member Posts: 4,800
    edited September 2020
    Oh oops jeez I missed the lung met info. Apparently tired brain is here too. Can we blame Stage 4 lol
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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2020

    Oh, absolutely, we can blame just about anything on it.

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  • 4trob
    4trob Member Posts: 5
    edited September 2020

    the biopsy was taken from the lung lining. They took 10 cores from the pleural mass. They did both FISH and HIC. They also sent half of the biopsy to have a Tempus test done. From what I understand the HIC showed HER2 negative and the FISH HER2 positive

    I originally was diagnosed in 2003 with cancer in both the left and right breast. The left breast was ER+ PR+ HER2- the right breast was triple positive and had gone into the lymph nodes.

    I hope that helps

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2020

    Bottom line, I would expect them to treat you as triple positive, as FISH is the more sensitive test. Tumors can be heterogeneous, but an anti-estrogen For ER+ If the cancer still responds to it, and a Her2 med for the Her2+ would cover those bases. And likely chemo as well. When was the lung biopsy done? As a general rule, a new biopsy to check ER and Her2, as well as genomic testing such as Tempus, whenever there is progression can be helpful. Cancer does change, and one thing it can do is change its Her2 status. Also they can look for Any targetable mutations, and see if there are any mutations that suggest resistance to anti-estrogen or other therapies. PARP inhibitors are often employed in BRCA-associated cancers, but I don't know how triple positive plays into that.

    Edit: Oh, I see you have filled in your treatments, and the PARP inhibitor Lynparza is listed, as well as hormonal therapies and Her2 therapies, and a chemo. Have you consulted at a NCCN cancer center? Have you recently had progression?

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  • 4trob
    4trob Member Posts: 5
    edited September 2020

    the biopsy was done November 2019. There has been some progression still in the lung. I just switched to lynparza in July I have scans done at the end of this month but my tumor markers went down by 300. What is NCCN cancer center? I have been seen at Rush in Chicago by Dr Cobl

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2020

    That is great that your tumor markers went down.

    The National Comprehensive Cancer Network publishes evidence-based treatment guidelines for various types of cancer. The member institutions are centers of excellence and a great place to consult especially if things are complicated or unusual. In Illinois there is the Robert H. Lurie Comprehensive Cancer Center at Northwestern University in Chicago.

    https://www.cancer.northwestern.edu/

    Here is the map and list:

    https://www.nccn.org/members/network.aspx

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  • Hollyli1202
    Hollyli1202 Member Posts: 123
    edited September 2020

    4trob - that is great your tm are going down. I started off er+ hr2- when my cancer went to stage IV. When Ibrance stopped working after three months and spread, I switched to Lynparza. I am brca2+. The lynparza works with the brca mutation, so being hr+ or triple + should not matter. I have been on Lynparza since June 2019 and have been NEAD since my follow up scan in Sept 2019.

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  • 4trob
    4trob Member Posts: 5
    edited September 2020

    that’s good to hear

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