Topazcat's Journey:

Survivor: Breast Cancer > Inflammatory Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 65, Stage IIIB, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • Topazcat
    • Experience with Inflammatory Breast C...
    about 5 years ago
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    Diagnosed

    Oh No

    Woke up after biopsy long enough for the Doctor to tell me I had Inflammatory Breast Cancer. I saw my husband crying. I said, XXX and went back to sleep.

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  2. 2
    • Topazcat
    • Experience with Inflammatory Breast C...
    about 5 years ago
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    Where to go for initial treatment and info.

    Decision Point

    I decided to go to Mayo Clinic as my type of cancer was not a common cancer where I live.

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  3. 3
    • Topazcat
    • Experience with Inflammatory Breast C...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Had many side effects but continued to work and live my life as usual. Was not going to allow cancer to change my routine.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • Topazcat
    • Experience with Inflammatory Breast C...
    over 4 years ago
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    Double Mastectomy

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Topazcat
    • Experience with Inflammatory Breast C...
    over 4 years ago
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    Radiation

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

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    • Topazcat
    • Experience with Inflammatory Breast C...
    about 5 years ago
    Topazcat's Avatar

    Eating problems (anorexia)

    Side Effects

    Can't answer the above question with only eating problems! Also had confusion, tiredness, chemo brain, muscle and joint aches, mouth sores. But it could have been worse!

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  7. 7
    • Topazcat
    • Experience with Inflammatory Breast C...
    about 5 years ago
    Topazcat's Avatar

    hair

    Loss

    My hair fell out about 2 weeks after I started chemo. Didn't bother me as much as I thought it would. It grew back a year later.

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  8. 8
    • Topazcat
    • Experience with Inflammatory Breast C...
    about 5 years ago
    Topazcat's Avatar

    Breakthrough

    Celebration

    After my first chemo, I decided I would not give anything up because of cancer. I continued to work and do volunteer work as usual. I got pretty tired but continued on as my way of fighting back. I attended all family get together and hosted the ones I usually did. Great fun!

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  9. 9
    • Topazcat
    • Experience with Inflammatory Breast C...
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    In October 2011 I was told there was know evidence of cancer. I continued to get PET SCANS every 6 months. In October 2012 I started getting hip pain and low back pain. My onc had an X-Ray done and said it was mild arthritis. In January I had another PET SCAN and it showed some uptake in low back and hip consistent with mild arthritis. By April the pain in my hip was so bad that I could not sleep until I was exhausted. The onc put me on oxycodone and said he would do PET SCAN in July. On may 28th I went to my primary doctor's CNP and she scheduled an MRI with contrast for the next day. It showed numerous lesions in the spine. I just came back from Mayo Clinic in Rochester. They did a biopsy and it is cancer metastasized from The Inflammatory, Lobular Breast Cancer I was diagnosed with in Nov 2010. Mayo also did Ct Scans and found lesions in the pelvic bones, possible lesions in the abdomen and multiple lesions in the discs of the lumber, sacrum, and thoracic spine. They told me that not all cancer shows up on PET SCANS and that the mets has been there for months. Plan is to do monthly IV infusion, take me off the Armidex and put me on med like Arimadex and give me something to strengthen bones. Also had cortisone injected into hip area and will be getting it also in lower back. They said more Chemo would be saved for later. I will be doing my infusions in the small city I live in but following up with the onc at Mayo Clinic. I am confused, scared, and so angry that my onc did not listen to me in Oct, Jan, or April! Anyone have any advice as to what I should do? What has worked for others? How long can I lives with mets to the spine and pelvis? Help, please.

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  10. 10
    • Topazcat
    • Experience with Inflammatory Breast C...
    over 4 years ago
    Topazcat's Avatar

    I will be on Arimidex for at least 5 years

    Other Care

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

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