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DebCoz
DebCoz Member Posts: 14
edited December 2015 in Genetic Testing

Hi all, I was diagnosis with triple negative breast cancer stage 2B in June 2015. Tested positive for BRACA1. Went thru chemo and decided to have double mastectomy and hysterectomy Last week (12/2/15). Before surgery has ultrasound on uterus and blood test CA125. Everything came back good. We just got back pathology results and all is negative with my breast cancer but now I have been diagnosis with ovarian cancer. The doctors are very surprised. Very small tumors. Left ovary tumor 6mm and right ovary tumor 2mm. They said the only way to find it was under a microscope. My washing was all clear so they know that it had not spread. Now they want me to start chemo again for ovarian cancer every 3 weeks for 4-6 cycles. The doctor said this is cureable and he doesn't even know if it could be staged. Does anyone have any comments about this. I am being treated here in Phoenix AZ at MD Anderson. I asked if this was a whole new cancer and they said yes because my breast cancer had not spread. Has anyone ever had this? Thanks!! Debbie







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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    Hi Debbie:

    I am glad the neoadjuvant breast cancer treatment appears to have been successful, but I am sorry you are now dealing with a second diagnosis of ovarian cancer.

    My limited understanding is that the CA-125 antigen test is most useful for monitoring changes in CA-125 levels over time (e.g., looking for a trend up), but is not 100% reliable as a diagnostic. If it was totally reliable, the diagnosis of ovarian cancer would not be so challenging. It obviously was a very good decision to have the oophorectomy at this time.

    Do you have copies of the pathology reports for the breast cancer and the ovarian cancer? If not, you should request copies of all of those reports for your review and records. If the pathological features differ (e.g., ER-status and/or other markers), then that would be consistent with independent cancers (and not spread of the breast cancer). In any case, please ask your doctors to explain what features of the pathology of each of the ovarian cancers allow them to conclude the breast and ovarian cancers are independent.

    Are you familiar with the FORCE website? Lots of good BRCA1 information there:

    http://www.facingourrisk.org/index.php

    Did your team say why the ovarian cancer cannot be staged? Is that because of the chemotherapy regimen received, because no lymph nodes were taken during the hysterectomy, and/or the surgery was limited in some way? You may want to ask more questions about that as treatment recommendations appear to differ by stage.

    Have you consulted with a "gynecological oncologist" regarding the pathology findings, and proposed treatment plan for the ovarian disease? If not, please consider obtaining an opinion from a gynecological oncologist either within the center you are at or at another one.

    BarredOwl

    Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative; Bilateral mastectomy and SNB without reconstruction 9/2013

    Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

    Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

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  • Mominator
    Mominator Member Posts: 1,575
    edited January 2016

    Hello Debbie,

    I'm sorry about your breast cancer, being BRCA1 positive, and now ovarian cancer. That's a lot to handle over such a short time. I'm amazed at how informed you are, and how well you are handling all this.

    Did you know in about 10% of BRCA 1 and 2 patients having prophylactic surgery, that occult (hidden) cancer is found? Certainly at 2 and 6 mm, those ovarian tumors were really hidden.

    I agree with Owl's suggestions above, especially on getting a consult with a gynecological oncologist regarding explaining the pathology report, and proposed treatment plan for the ovarian cancer. Maybe the Gyn Onc was part of the treatment team and you need to have your questions answered. Perhaps the treatments for the breast cancer and the hysterectomy factor into the treatment and staging.

    I'm BRCA2 positive. Genetic Counselor and Gynecological Oncologist recommended BMx and BSO (bilateral scalpingo-oopherectomy). Both my Gynecologist and Breast Surgeon were passionate about "taking it all out" and recommended a complete hysterectomy. I asked Gyn Onc to clarify. He said only BSO is needed for BRCA2. It may be different for BRCA1.

    Wishing you all the best in your journey

    Mominator

    BRCA2+, wife, mom to 3 children of various special needs, musician, volunteer, 54 yrs young

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