just got the expected (but dreaded) call

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windingshores
windingshores Member Posts: 704
edited February 2015 in Just Diagnosed

My biopsy, as expected, showed invasive ductal cancer, progesterone and estrogen positive, HER2 pending. I thought I was ready but my insides went icy cold as I stood in the hallway of my mother's rehab, with cheery nurses smiling at me on my cell phone.

I had the mammogram, ultrasound and biopsy at a hospital I don't want to use, though surgery would be quicker there perhaps. I am meeting with the surgeon on Friday for her to go over everything but wonder if I should call Dana Farber today.

My breast hurts and I feel a little fluish from the biopsy last Friday. I need to get reports, images and slides and get them over to DF if that is where I want to go. I don't want to stay where I am just because I don't feel well.

Any advice on this? I just want a double mastectomy so not sure if I should do that at DF or go to DF after surgery.

Thanks!




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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2015

    Eh, your case may be more complicated than you think if you are HER2+. Many who are HER2+ end up with targeted therapy (Herceptin, maybe Perjeta) and chemo, and that might be delivered prior to surgery (neoadjuvant). If the HER2 results are in by Friday, you may be referred to a medical oncologist (MO), and then you would have to decide about where you want to seek treatment.

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  • windingshores
    windingshores Member Posts: 704
    edited February 2015

    First they said the HER2 was pending and then apparently it was inconclusive so they are redoing. I have to look up FISH because that was mentioned.

    For some reason I am not expecting this to be simple, but I have autoimmune illness and am concerned about what I can handle. I will need to get other specialists' opinions. Even surgical lights may make me sicker, so I have to investigate filters. If I can have a double mastectomy and hormonal treatment that would be great, but I don't expect things to be that easy.

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  • windingshores
    windingshores Member Posts: 704
    edited February 2015

    Thanks I didn't want to research anything tonight. Needed to watch a movie or something. I appreciate the explanation.

    I wasn't sure if it was okay to mention specific hospitals but I made two appts. at Dana Farber earlier today- surgeon on the 25th and oncologist on 3/4.

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  • Newgirls
    Newgirls Member Posts: 81
    edited February 2015

    I feel your indecision about where to go for surgery/treatment. I am one month out from double mastectomy and recon with tissue expanders at Dana Farber in Boston (surgery done at Brigham &Womens). I feel I received excellent care and so far have had excellent results. When deciding on where to get my procedure done I called my local hospital. I asked some questions about how often they do double recons with tissue expanders. The response of "about two per month" was all I needed to hear. I hung up and called Dana Farber with whom I had previously had care. It is a hassle getting in and out of Boston, but the team on the 9th floor does bc diagnosis and surgery all day long. I knew I had to go there and then let go of what I knew would be a nagging question of "did I do all I could to give myself the best possible outcome?" Complications can happen anywhere but knowing that my surgeon at DF/BWH just performs bc surgery gave me peace of mind. Take the time to get yourself the best care you can find. It's a big surgery that has lifelong implications. You want the best. Call them tomorrow! Best wishes.

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  • windingshores
    windingshores Member Posts: 704
    edited February 2015

    I'm not really indecisive. Just looking for info on people's experiences and not sure whether specifics are allowed.

    MGH is also in Boston :)

    I made appts. at Dana Farber one hour after I got the biopsy results (actually before I first posted). Am also seeing the surgeon at the hospital where the biopsy was done, tomorrow, to get more info.

    Hoping for a negative HER2 but won't be surprised if it isn't. That will change things too I guess.

    Trying to move forward without focusing on this all the time. It's tricky isn't it......I guess we have to get good at it over time. Back to Netflix.


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited February 2015

    Oh so sorry you got the dreaded diagnosis.  I am very glad you are going to Dana Farber.  And a  breast surgeon is

    extremely important.  Go to the best first, that is my philosophy.  And Mass General is certainly great as well.  You are fortunate to have GOOD choices!

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