Just Diagnosed - Invasive Lobular Carcinoma

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pjduvall
pjduvall Member Posts: 1
edited September 2018 in Just Diagnosed

Found out a little less than a week ago. Met with the breast center yesterday. Clinical stage is 1A. Going in for genetic testing tomorrow, with an MRI in two days. I also have consultations with a radiation oncologist, and a plastic surgeon to help me decide between a lumpectomy/partial mastectomy of a full mastectomy of my right breast.

I have so much information in my head, it's not even funny, and I feel like I should be more upset, but I just feel numb at this point. We haven't told our boys yet; waiting on the MRI to know exact information.

Tips, or advice on what I can expect, or things I need to prepare for with this?

Comments

  • Dani444
    Dani444 Member Posts: 522
    edited September 2018

    pjduvall sorry you have found yourself here. It is all so overwhelming, especially in the beginning. I received so much info and support on here so you are in the right spot. One piece of advice I wish I would have taken was to take someone with me to my initial visits. They throw so much information at you it’s easy to forget what all was discussed. I made a binder and had pages for questions and notes from all of my visits. You will start to feel better when you have a better picture of your cancer and a treatment plan. There is a specific ILC section here on the boards that has some great info. Don’t hesitate to ask any questions you might have as you navigate through your treatment

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Pjduvall-

    We're so sorry your find yourself here, but you're in the right place for support as you begin down this road. The first days and weeks can be very overwhelming, but try to take it one appointment at a time, and like Dani said, ask as many questions as you can. You can find the ILC forum here: https://community.breastcancer.org/forum/71, lots of helpful information there.

    The Mods

  • beach2beach
    beach2beach Member Posts: 996
    edited September 2018

    Sorry you find yourself here, but you are not alone. It is very overwhelming. I don't think I have fully gotten past it and its been a year. I agree, if you can have someone go with you and take notes. A friend of mine came along when it went to the PS and boy did she ask questions and take notes. I stood there in a daze while they talked. I didn't tell my kids until I had everything into place and knew exactly what I was going to do. For me it was fast..within a week and half from diagnosis I had surgery.

    Best advice I think I was given is to go with your gut on what to do. I had a 7mm spot. I knew from the moment I heard it that I would do a double mastectomy even though it was tiny. That was colored by my sister having had bc, and other factors. I have not regretted my decision. So whatever you choose, chose it because it feels right to you. So much gets thrown at you, statistics etc, but it will get better when you have all your info in place and have some control back.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    Hi there pjduvall, hearing about our dx sucks big time. I sympathize and know about the shock and fear and disbelief, for sure.

    We are a fairly active group over on ILC board, so join us there; there's a lot of information regarding treatment and the nature of the ILC "beast"--it's a bit different from IDC, usually treated about the same, but it grows differently and has other characteristics that are somewhat diff from IDC. Knowing that motivated me to get my BMX since I didn't trust that scans would reveal another problem in the future.

    Yours was classified as 1A. That's very good news; many ILCs aren't caught till they are large, since this subtype grows weirdly "flat"--and hides from mammograms and self-exams a lot of times.

    bc.org was a godsend for me. I found so much help treating side effects from chemo, and just knowing I wasn't alone was huge.

    Hugs,

    Claire in AZ

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