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Invasive ductal carcinoma AND Brca-2 gene mutation

tinacap77 Member Posts: 6

I was scheduled for a lumpectomy next Friday for my ER/PR + and HR- breast cancer but today the genetic counselor called me with some devastating news and that is I have the BRCA-2 gene mutation. I haven’t spoken to the surgeon yet but I’m assuming I will have to have a double mastectomy and I have been crying we unite a bit. Please help me with any info, support etc


  • moderators
    moderators Posts: 7,679

    tinacap77, we're so sorry to hear this, we know it can be so overwhelming and a lot to process. We're all here to support you through this! There is a lot of helpful information in our Genetic Testing forum, it's a great place to start reading and connecting with others in your shoes as you figure out how to navigate this all.

  • dsc
    dsc Member Posts: 50

    Hi Tinacap, I’m also ER/PR+ and HER2- However I didn’t have genetic testing, I don’t think. Is this something that’s done with the biopsy sample?

    I’m not the most positive person but I have to say thank goodness they have all the information now that they need to make the best treatment plan for you. So that’s a positive take away.

    The emotional part of this I get too. This is so hard. I’ve been through quite a lot in my life and I have to say, this has knocked me down more than anything. I’m terrified, anxious, sad, mad…..the list goes on. So what we are feeling must be to be expected. Just try to live in the moment, and worry less about what you can’t control.

    Please keep us informed once you speak to you surgeon. Thinking of you. 💕

  • tinacap77
    tinacap77 Member Posts: 6

    I asked for the genetic counseling but ironically had to pay out of pocket $250 as insurance said I didn’t meet the criteria. I’m glad I spent the money. I have lots of aunts/uncles and all have passed away and I don’t know how all died.

  • dsc
    dsc Member Posts: 50

    Definitely worth it! I’m in Canada so I wouldn’t pay for it I don’t think, but like I said, I’m not sure I’ve been tested for it. Is it bloodwork or is the test performed on the biopsy tissue?

  • moderators
    moderators Posts: 7,679

    Hi @tinacap77 and @dsc,

    The following article includes an explanation of how genetic tests are performed:

    "The actual test is either a blood test, a saliva sample, or a swab of cells taken from the inside of your cheek. Tests can take from a few seconds to a few minutes depending on the type of test you have. Your doctor or genetic counselor sends the sample to a laboratory so they can test for gene mutations. It can take several weeks to receive your results."

    You might also find the following article helpful on the types of genetic tests.

  • salamandra
    salamandra Member Posts: 723


    I had a really good experience with this organization: Sharsheret.

    They offer free genetic counseling, social work, and connections with other women dealing with similar situations. Since they are a Jewish organization, they have a lot of knowledge and experience with the BRCA mutations (which are more common among Ashkenazi Jews), but they are open to everybody from every background/religion/absence of religion.

    It was really helpful to feel like I had a social worker in my corner, even if I ended up only speaking with her a couple of times (my choice).

    Good for you for advocating for yourself and your health. However devastating this is, it is better to know. You will find your way through - just keep showing up.

  • katg
    katg Member Posts: 206

    I was one day from starting my AC chemo and got the call from my Medical oncologist.

    At City of Hope, i was offered genetic counseling. My MO said I was found to be carrying the Brca2 mutation. I went to my first chemo 2 days later with 2 different chemos. Carboplatin/Taxol for 12 weeks.

    I was confident in the hospital and the team of doctors i had. I am ER+/PR-/HER2 +/Stage 2

    Double mastectomy? I was 60 at diagnosis. I had my fallopian tubes and ovaries removed. It was right for me.

    I know the treatments i got were based on all the stats i had and what has worked or been know to work on a case like mine. My cancer is one 2% of the population gets. I did not have radiation as the doctor said it would not help enough to go through it.

    Talk to the surgeon. Talk to us. Walk it a day at a time and please talk it out. To a Dr/nurse/friend/family.


  • umiaks
    umiaks Member Posts: 1

    In November I had lumpectomy in left breast for Stage 1 before the genetics testing. In the process, I had genetics testing (lots of cancer on both sides of family, but was told probably had nothing to worry about since my Mom did not have breast cancer, have no sisters). Voila turned out I had BRCA 2. Unusual for it to turn up so late I was told (I am 72). Or as my friend said, I got to get old before I had breast cancer. After BRACA diagnosis, I could not think straight for about five days. Breathe. Discussion with oncologist and surgeon, did not want to have more surgery for double mastectomy as I had just gone through lumpectomy. So proceeded with whole radiation to left breast, tamoxifen, and about to go into surgery for oophorectomy. MRI and Mammogram yearly. Very difficult decision making involved. But that's the plan I am on and that's a lot of the battle, making those decisions. Mad, sad as someone said. I try to stay positive!