slgrib's Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Female, Age: 52, Stage IIB, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Sentinel lymph node biopsy

    Procedure or Surgery

    Results were unexpected: 3 pos nodes after MRI said nodes were normal. Was surprised at pain and numbness in my arm. Took many months to regain feeling.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  2. 2
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Problem with doctor

    Oh No

    Hated first surgeon, had second and third opinions. Finally found Dr I trusted.

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  3. 3
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Problem with doctor

    Oh No

    Hated first oncologist. He refused neoadjuctive chemo without giving a reason. Had to find another.

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  4. 4
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    Hate my port. I feel it all the time.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    A&C were easy although losing my hair was a bit traumatic. Only real side effect was weight loss and dry mouth. Taxotere was rough, but side effects were manageable. Worst was neuropathy and loss of sense of taste.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Relationship

    Loss

    2nd chemo treatment, boyfriend insisted on coming & took a day off work. One hour in, started complaining and finally said "I can't believe I wasted a personal day for this". He moved out. 3rd chemo treatment: cousin who was my right hand had a breakdown and texted me terrible things about not ever caring about her or her family. Her son sent me horrible texts accusing me of being a user, breaking promises & owing his mother money...all because I forgot a birthday (chemo fog). I was devastated.

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  7. 7
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Problem with doctor

    Oh No

    Saw surgical onc after chemo. Mammogram & ultrasound showed tumors almost disappeared. Needed to see Plastic who refused to perform procedure. Then surgeon referred me to another surgical onc. Felt like an orphan.

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  8. 8
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Mastectomy

    Procedure or Surgery

    Religious post-op physical therapy aided range of motion recovery time. Side effects of mastectomy are extensive numbness, pain, loss of upper body strength and unsatisfactory body image. Every single day I am reminded of my loss.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Breast Reconstruction (Flap)

    Procedure or Surgery

    Physical therapy aided range of motion recovery but side effects are extensive: numbness at incisions, abdominal swelling and very imperfect breast reconstruction (not enough tissue). It may be my own skin, but it doesn't feel like my own body.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Side Effects

    This person has yet to add any details about this experience.

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  11. 11
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Loss

    This person has yet to add any details about this experience.

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  12. 12
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    Other Care

    This person has yet to add any details about this experience.

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  13. 13
    • slgrib
    • Experience with Invasive Lobular Carcin...
    over 4 years ago
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    whether to have mastectomy or not

    Decision Point

    Met with referred breast surgeon who reluctantly agreed to perform the procedure I wanted: a nipple sparing mastectomy. Plastic surgeon who previously refused to perform DIEP immediate recon with the NAC sparing mast reluctantly consented to do reconstruction.

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