Carlynn's Journey with Invasive Lobular Carcinoma

Survivor: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 17 years ago, Female, Age: 69, Stage IV, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Found lump in right breast

    Oh No

    I was really scared. I called the doctor and her office was undergoing a crisis, my doc was leaving and the nurses had all resigned. There were temp nurses and reception staff who did not know what to do. It took a week to get in for an exam, the another three days to get a sonogram and another three days for the office to answer my messages to get the results!

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  2. 2
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Biopsy of lump (before sentinal nodes were done here)

    Procedure or Surgery

    I was told that I had breast cancer, but not given clear follow up information and certainly not comfort or connection to any services at all.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Decision Point

    Sought more info --- went to a radiologist and had a mammogram / sonogram on left side. She said that there was a lump also on the left and if it were her breast, she would have it removed. I decided to have a double mastectomy. A devastating choice.

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  4. 4
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Double Mastectomy

    Procedure or Surgery

    Was convinced that reconstruction at the time of surgery would be the best way to go. The pain was excrutiating and the psychological pain was worst. I was still not connected to a support system, no oncologist was involved yet, not social worker was called, no support group offered, no physical therapy prescribed. I was left hanging.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Problem with doctor

    Oh No

    The surgeon did not refer me to an oncologist. My internal med doctor had left the state and no one had taken up her practice. I changed health systems and called a friend who worked in that system. She got me into a great practice for oncology.

    0 Comments
  6. 6
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Had a hard time with chemo. Took off work for four months, then back part time for two more. Also dealt with depression and family problems during that time.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  7. 7
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
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    Clinical Trial

    I was in a clinical trial for a drug that was supposed to help with red blood cell counts.

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  8. 8
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Chemo brain

    Side Effects

    Was in a fog --- could not think clearly. Hard to do math. Not a lot of mental energy.

    1 Comment
  9. 9
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Fatigue (tiredness)

    Side Effects

    Extremely tired most of the time. Slept a lot.

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  10. 10
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Hair loss (alopecia)

    Side Effects

    Lost my hair before second treatment --- it came out in handfuls in the shower. Shaved head before it all came out. Couldn't wear wigs, too scratchy and expensive. Made fun hats and put fake tattoos on head. : )

    0 Comments
  11. 11
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Taste change/loss

    Side Effects

    Metallic taste in my mouth -- nothing tasted good. Did not want to eat.

    0 Comments
  12. 12
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Body part/function

    Loss

    Lost my libido. Loss of breast sensitivity was devastating to my interest in sex. I was just married for five years and we had a very satisfying sex life. Now, even eleven years later it is not back.

    0 Comments
  13. 13
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
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    Lost loved one

    Loss

    My father passed away on the day after my last treatment. Had to leave for Texas to be with family.

    0 Comments
  14. 14
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Finished treatment

    Celebration

    Finished treatment, hair was coming back (took about six months), cancer in remission.

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  15. 15
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Cancer has spread/Metastasized

    Oh No

    April 2009 -- cancer back, mets to bones

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  16. 16
    • Carlynn
    • Experience with Invasive Lobular Carci...
    almost 6 years ago
    Carlynn's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    Placed on Faslodex (two IM shots every four weeks) Also placed on Zometa IV bone strengthener every four weeks. Treatment takes about two hours every four weeks. Feel tired for about three days, with some aching in bones. Minimal impact to daily life. It has now worked for two and a half years!

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