What now? Found out I am BRCA2 positive.

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LisbethS
LisbethS Member Posts: 145
edited July 2016 in Diagnosed and Waiting for Test Results

I have been diagnosed with two tumors in right breast both positive for IDC high grade (3) ER&PR+, HER2 negative. They were going to do a lumpectomy until they found the second tumor on an MRI. The surgeon said the second tumor, which was too far away from first one for a lumpectomy so recommended a unilateral mastectomy instead of lumpectomy.

So what now? I am supposed to get the pathology report tomorrow (2 days overdue) to tell me if the cancer has spread to the lymph nodes. What tests should I ask for if it has spread? Bone scan, PET Scan, liver, lung, brain scans?

Thanks to all who suggest I go to a teaching hospital, but there aren't any within 150 miles of my home so it's unfortunately not an option for me.

Thank you!

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Hi LisbethS:

    I don't know the answers to all your questions, but if the second tumor is clearly a separate tumor, personally, I would insist on ER, PR and HER2 testing. If they will not do it, I would seek a second opinion elsewhere and request such testing.

    Although teaching hospitals are far away, please consider at least seeking a second opinion at one, along with independent pathology review and testing of the second tumor for ER, PR and HER2 status. The second opinion place can work with you on scheduling to limit travel, and you can still obtain recommended treatments locally. If the cost of travel is an issue, the American Cancer Society has provided some members here with assistance with travel and/or lodging.

    Regarding your BRCA2 status, if you have not been referred to Genetic Counselor yet, please request a referral for a more in depth discussion of your test results and the clinical implications, appropriate actions, recommended timing of same, and recommended surveillance for other cancer types (if any). If you do decide to visit an academic center for a second opinion, I would recommend you seek Genetic Counseling there (instead of locally).

    If it is totally impossible to travel, you can still obtain a pathology review (and probably further testing) remotely:

    http://www.breastcancer.org/treatment/second_opinion/where

    Best wishes,

    BarredOwl


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