TNIBC's Journey with Inflammatory Breast Cancer

Survivor: Breast Cancer > Inflammatory Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 54, Stage III, HER2 Positive: No, ER Positive: No, PR Positive: No

  1. 1
    • TNIBC
    • Experience with Inflammatory Breast Cancer
    over 5 years ago
    TNIBC's Avatar

    Diagnosed

    Oh No

    On Monday Aug 2, 2010 I found swelling in my left armpit, about the size of an orange. I saw my primary care doc the following day, he sent me for an immediate mammogram. I was in denial through that part of the process. I was then 'squeezed in' for an immediate ultrasound, I can still see the computer monitor with that big dark spot. After that was done the radiologist came in and said "I'm 99% sure it's cancer." That's how my roller coaster ride began. I was again 'squeezed in' for a needle biopsy on the following day. And of course, it was positive. A week later, when I met the surgeon, he did a skin biopsy which confirmed inflammatory breast cancer.

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  2. 2
    • TNIBC
    • Experience with Inflammatory Breast Cancer
    over 5 years ago
    TNIBC's Avatar

    Decision Point

    Inflammatory breast cancer is such a nasty aggressive form of breast cancer, and I'm triple negative also. That makes my cancer about as aggressive and nasty as it gets. In every case where I had a decision, I chose the more aggressive route. I wanted to be nasty and aggressive right back.

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  3. 3
    • TNIBC
    • Experience with Inflammatory Breast Cancer
    over 5 years ago
    TNIBC's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I completed 6 rounds of TAC (taxotere, adriamyacin, cytoxan) at three week intervals. My last infusion was on Dec. 9, 2010. My oncologist was very proactive in treating side effects. I had more prescriptions for nausea than I used, but I was very happy to have them (and several OTC helpers) on hand. I dealt with bone pain, heartburn, diarrhea, nausea, and what I call the chemo fog. I also lost my hair, suffer from peripheral neuropathy, and the effects of chemo brain. The best advice I have for chemo? Drink lots of water, and ask your docs about all side effects. They have ways to help you manage anything that might come up.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • TNIBC
    • Experience with Inflammatory Breast Cancer
    over 5 years ago
    TNIBC's Avatar

    Double Mastectomy

    Procedure or Surgery

    The surgery and initial recovery period went as expected. Although I was told about the possibility of lymphedema, I was not prepared for the reality of it. I also was not prepared for the adhesions in my left axilla. Both lymphedema and the adhesions impact my range of motion.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • TNIBC
    • Experience with Inflammatory Breast Cancer
    over 5 years ago
    TNIBC's Avatar

    External radiation

    Radiation

    Because of my diagnosis, I had a very aggressive radiation protocol. I went to treatments twice a day for 22 days, or 44 treatments. The treatments had to be at least 6 hours apart, so I was driving at least two and half to three hours a day just to get to and from treatments. My best advice for radiation treatments? Drink lots of water and use your ointments liberally and frequently.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • TNIBC
    • Experience with Inflammatory Breast Cancer
    over 5 years ago
    TNIBC's Avatar

    Remission

    Celebration

    It has now been a year since my initial diagnosis. Yes, I still worry that every little cough or headache means that the cancer has metastasized. But I work every day to find the normal...and more important I focus on the little joys to be found in each day.

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