Zephyr75's Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: almost 4 years ago, Female, Age: 41, Stage II, HER2 Positive: No, ER Positive: Yes, PR Positive: Don't Know

  1. 1
    • Zephyr75
    • Experience with Invasive Lobular Carc...
    almost 4 years ago
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    Timing

    Oh No

    I was diagnosed with breast cancer on March 14th. Given the family history of breast (and other) cancer, I've always known I was in the waiting room, so it didn't come as a complete surprise. I had expected it in my mid-40's, not at age 37, though. I felt as if Time hadn't stuck to our Contract. I kept thinking: "Hey, this is not what we agreed on, Fate! I'm not even 40 yet!" But then I realised there was never a contract in the first place. Obviously, there's never a good time to get cancer, but especially not 2 months before my wedding. It's all up in the air at the moment, since I don't know what's awaiting me. I'm having a double mastectomy on April 15th. They'll only know if the cancer has spread to the lymph nodes after the surgery. Depending on the results of that and the biopsy of all the lumps in both breasts post-surgery, they'll decide whether or not I need chemo. Am I naive to think that we can go ahead with the wedding? Should I just cancel the whole thing? I don't know, because there are too many unknown factors at the moment.

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  2. 2
    • Zephyr75
    • Experience with Invasive Lobular Carc...
    almost 4 years ago
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    Double mastectomy or not?

    Decision Point

    When they found several carcinoma's in my left breast, a mastectomy seemed like the best option. Upon examination of the right breast, it turned out it was full of calcifications, cysts and other small lumps that seemed benign for now. There was no immediate need to get rid of this breast as well. However, with there being a higher risk of developing cancer in it at a later stage, I knew right away that I wanted a double mastectomy. I don't want to have to live with fear again for the next number of years. 20 years of living with the shadow of breast cancer hanging over me is enough. No more. My partner tried to dissuade me from having both breasts removed, but I am absolutely sure that this is the best option for me. I'd rather be completely flat-chested than having 1 breast that would feel like a time bomb to me anyway.

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  3. 3
    • Zephyr75
    • Experience with Invasive Lobular Carc...
    almost 4 years ago
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    Double Mastectomy

    Procedure or Surgery

    I had my bilateral mastectomy on April 15th. Post-op analysis of the breast showed changes in cells in the "good" breast as well, so it was definitely the right decision to have them both removed at the same time. The operation went as planned, but I am still extremely tired due to low blood pressure. Mentally, I'm quite ok, I must say. Seeing myself without boobs for the first time was not as scary as I had expected. Yesterday I was told that the lypmph nodes are clear, so I am over the moon! I probably won't even need chemo now.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Zephyr75
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    No chemo!

    Celebration

    21st of May: got told by my oncologist that I won't need chemo! Woohoo! I'm over the moon! I was convinced I'd be having chemo, given the size of the tumour and the family history of BC.

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  5. 5
    • Zephyr75
    • Experience with Invasive Lobular Carc...
    over 3 years ago
    Zephyr75's Avatar

    Wedding

    Celebration

    24th of May: I got married, 5 weeks after my double mastectomy. It was an amazing day and I'm so happy we decided to go ahead with it, despite the cancer diagnosis.

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  6. 6
    • Zephyr75
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    Hormone therapy

    Drug or Chemo Therapy

    Started taking the Tamoxifen tablets. So far, so good.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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