Just diagnosed with IDC

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  • Robyn57
    Robyn57 Member Posts: 19
    edited December 2018

    thx for encouraging words I’m doing masectomy I think I’m stsge 1 hormone receptor pos but haven’t seen oncologist yet . Is it standard to give everyone even stage 1 hormone therapy? Side effects look scary I’m premenopausal and my mom had blood clots in lung Tamoxifen can cause blood clots I hate not having info

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2018

    Hey Robin,

    Yes, they are giving tamoxifen even for stage 0 most of the time. I'm so sorry about your mom. Blood clots is a side effect and you should definitely talk with your medical oncologist when the time comes - there are things you can do to minimize your risk of blood clots. Or, it's also possible to do ovarian suppression plus an AI for premenopausal women if there are factors that support that (high risk tumor, maybe high blood clot risk - I don't know, medicines that counterindicate tamoxifen, etc).

    Waiting for info is very hard.

    I figured I would be having a mastectomy too, before I met my oncologist. But she made a very persuasive case for a lumpectomy+radiation in my case and I'm very happy, in the end, to be able to have done that. But it's really hard to make any kind of informed decision before you have all the info from the testing and have met with the doctors.

    When are you meeting your doctor?

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  • christina0001
    christina0001 Member Posts: 1,491
    edited December 2018

    Hello from a fellow Jersey girl, I don't live there anymore but I lived all over the state, including Brick for a while which isn't too far from you.

    This is the worst part, or at least it was for me. The initial shock, the questions, confusion, and at times flat out terror. It may be hard to believe right now but it WILL get better. And your oncologist will be a wonderful source of information.

    Everyone has a different response to tamoxifen. You can read all kinds of miserable stories but many women have mild or no side effects. There's just no way to know until you take it.

    You are not alone - there are so many of us!

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  • Robyn57
    Robyn57 Member Posts: 19
    edited December 2018

    thx for answering . I’m frustrated cause I haven’t seen oncologist yet and won’t till after surgery . I’m scared they will change my disgnosos . So far with all the tests they haven’t seen it in my nodes and it’s hormone receptor positive , I’m scared of it coming back even tho they said it’s early . This is hard but I’m trying to stay grateful . After masectomy atleast I will feel like I did something ...

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  • msphil
    msphil Member Posts: 1,536
    edited December 2018

    yes sweetie it is scaring in very begin but once treatment plan in effect things will ease up some hang in there with Hope and Positive thinking "i will get thru this" I am now a 24yr Survivor Praise God

    msphil idc stage2 0/3nodes Lmast 3mo chemo before and after Lmast got married was planning at diagnosis then 7wks rads 5 yrs on Tamoxifen.

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  • BEEPOSITIVE18
    BEEPOSITIVE18 Member Posts: 18
    edited December 2018

    Howdy Robyn57,

    I am in your shoes as of yesterday. The surgical oncologist called and said the biopsy showed a 6mm invasive breast cancer IDC. My appointment to learn next week when I see the surgical oncologist again. Hopefully they will have the genetic test results in and the hormone receptor testing as well. They told me they will have to go back in to make sure margins are clear because the cancer touched my saline implant and they will need to take sentinel/lymph nodes to make sure it hasn't spread. How are you doing? Hugs

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  • Mamasha
    Mamasha Member Posts: 104
    edited December 2018

    hi robin57 and beepositive

    I just I came here today because I got the dreaded call two years ago today. I remember what you are going through in the early days. Weekends are especially hard when you first find out because you know no appointments or scheduling can be made and it’s justwaiting and tears BUT in two years you’ll return to this website to remind other”newly diagnosed “ that they will be okay! It is true you will get to a point when it’s not all that you think of I promise. I’m so sorry you’re part of the club and sending hugs.

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  • BEEPOSITIVE18
    BEEPOSITIVE18 Member Posts: 18
    edited December 2018

    Howdy Mamasha and robin

    I met with the surgical oncologist and this is what I know so far. IDC less than 1cm ER positive, PR positive and HER2 Negative, low grade Ki-67 11%, Genetic testing came back negative and they think it was caught early. They suggest bilateral mastectomy because of the density of my breast, family history, allergies to MRI/CT scan contrast and the fact that this cancer didn't show up on any imaging. They just happened to catch it in the segmental mastectomy biopsy. The staging will be done once they remove the sentinel and lymph nodes during mastectomy surgery. I see the reconstructive surgeon Jan 9th to get details on what type of bilateral mastectomy he would recommend since I am slim and don't have a lot of extra tissue to use for a DIEP flap surgery. I will see the oncologist after the surgery and pathology comes back.

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  • nanette7fl
    nanette7fl Member Posts: 469
    edited June 2019

    Hi Beepositive... when you meet with the surgeon ask them to skin sparing BMX. I had this and it leaves most of your outer skin so there is something to work with...unless you going flat. There are a lot of success stories about this and is the preferred surgery these days.

    Good luck sweetie


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