Newly Diagnosed -- What questions should I ask?

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pattie_jo
pattie_jo Member Posts: 7
edited February 2018 in Just Diagnosed

Hello everyone. My name is Pattie, I'm 51 and was recently diagnosed with DCIS in my left breast. There are also some "atypical cells" near that site so they are recommending a lumpectomy and radiation. The area removed will be about 4cm and will cause some asymmetry of my breasts. I met with my oncologist and surgeon - feel very comfortable with the team thus far. I'm meeting the plastic surgeon tomorrow and also having my pre-admission testing done tomorrow. I do not have a surgery date yet, which, as I know you all know, is killing me. I also had the genetic test done and everything was negative except for a small mutation on the BRCA2 gene - they are calling it VUS (variance of unspecified significance) and are telling me not to worry about it, but have made an appointment with the geneticist for me to discuss it. That appointment is the day after tomorrow.

I need help with what questions I should ask the plastic surgeon and the geneticist. I've tried reading up on things here but it gets overwhelming. I really have no idea what to ask as far as either goes, especially the plastic surgeon. Any and all input is appreciated.

Blessings to all of you as we walk this journey together.

Pattie

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2018

    The following thread from the DCIS forum might be helpful to you:

    A layperson’s guide to DCIS https://community.breastcancer.org/forum/68/topics/790992

    After a lumpectomy, your breast tends to fill itself in. So until some time passes, you won’t know how much asymmetry you’ll have and whether or not it even bothers you. I’m surprised therefore that you are being sent to a PS at this time. If it were me, my question to a PS would be “how long after surgery will it take for my breast to settle to how it will look long term?”

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  • pattie_jo
    pattie_jo Member Posts: 7
    edited February 2018

    Hi Bessie. My surgeon said that because of the location and amount removed, it will cause my nipple to point way off to the left and definitely cause asymmetry. She said in clothes it won't be noticable, but naked will be very obvious. I'm just going by what she said.

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  • Sara536
    Sara536 Member Posts: 7,032
    edited February 2018

    Hi, I’m sorry that you find yourself in this situation. Many of us here feel that we were not given much information about what our real alternatives were at this point. We also did not know what to ask and ended up being steered toward the proceedure that our PS was most comfortable with. I think that, if possible, get a second opinion now even if you like your PS. Explore the various topics here and you will get a pretty good idea of what’s out there. If I were starting over, I would want the cancer removed with the minimal amount of surgery and then be able to consider the various reconstruction possibilities when I wasn’t feeling pressured by fear. I had an immediate lift of the opposite breast to match the lumpectomy and lift on the side with cancer. It doesn’t match anyway because the radiated side did not shrink as much as expected. Now I do not have enough tissue to do the “Goldilocks” procedure which I would have been a perfect candidate for. It’s new and some PS’s have never heard of it. I’m not saying it would be right for you - it’s just an example of why you might want imput from more than one PS. Good luck to you:)

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  • Flnative
    Flnative Member Posts: 10
    edited February 2018

    I am a newbie as well. Diagnosed just last week and will meet my surgeon next week. DCIS on left, intermediate grade with central necrosis, mucocele-like changes, ER+ and PR+. There was mention of focus suspicious of micro invasion. As I read this, I am not sure if this means it’s DCIS, or if there is a component of invasive here. The other tissue sample clearly stated DCIS. There is no mention of staging, I assume that may come after surgery.

    I have read a number of posts and am amazed at the knowledge of women in this forum. I imagine I will learn a great deal as I begin this journey.

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  • Flnative
    Flnative Member Posts: 10
    edited February 2018

    Just read Beesie's guide, very informative and helpful. Thank you

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  • pattie_jo
    pattie_jo Member Posts: 7
    edited February 2018

    Thank you everyone. This site is so helpful. God's blessings to you all.

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