Reader21's Journey:

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 5 years ago, Female, Age: 56, Stage IIIA, HER2 Positive: Yes, ER Positive: Don't Know, PR Positive: Don't Know

  1. 1
    • Reader21
    • Experience with Invasive Lobular Carc...
    about 5 years ago
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    Diagnosed

    Oh No

    I had a rutine mammogram in February of 2012and it was very painful, I had a hysterectomy in 2009 so I don't have periods so there was no reason to be tender. The results came back negative. Everything look normal. After the mammogram my right breast was hurting and when the pain didn't go away I went to see my gynecologist, I saw a nurse practitioner and she noticed that my right nipple was inverted so she sent me to get a sonogram. The sonogram also came back normal and they told me to just keep and eye on it. A few days later the nurse called me back and when I told her everything was fine she said no. She did not like what she saw and she then sent me to see a surgeon. The surgeon sent me to get an MRI because he said that it did not look normal. The MRI came back with a large area under my nipple and also two areas on my left breast. The next step was to get a biopsy. That procedure was very painful, they actually did five biopsies for every area so 15 total. A few days later a nurse called me, and said all test came back positive for cancer.

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  2. 2
    • Reader21
    • Experience with Invasive Lobular Carc...
    about 5 years ago
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    Double Mastectomy

    Procedure or Surgery

    The double Mastectomy was done in June, it is a big impact, not so much the fact that you loose your breast, but the trouble finding clothes that open up in the front since I could not raise my arms because I had 4 drains, two on each side. I lived in my poncho for a couple of weeks. It was very hard finding clothes that fit with all the drains going underneath. I also had to learn to sleep on my back which was hard. Then the bra is very uncomfortable and the prostesis are very heavy. since they found cancer on my sentinel nodes I needed more surgery (lymph node dissection)

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Reader21
    • Experience with Invasive Lobular Carc...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Went to a chemo class which was very helpful, but until you start with treatment you understand everything they are talking about. I needed 6 months of chemo, first 3 months every 3 weeks then last 3 months every week. At first I joked about the color looking like Hawaiian punch. But after a couple of chemos, just looking at any red drinks made me nauseous. There was a lot of side effects, specially nausea. It was very hard to get rid of. I lost a lot of weight during the first 3 months, then I gained them back during the last 3 months since the drugs didn't cause any more nausea. neurophaty of my arms and leg were the main side effect that was hard.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Reader21
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    External radiation

    Radiation

    It was painless at first, the more times you get radiation, your skin starts to burn and towards the end my skin was so burned it cracked and bled, I had to use Domoboro which was very helpful and leave the area open. The impact on your daily life is that you have to take at least one hour of your day every day for 6 weeks which is not an easy thing to do

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Reader21
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    This side effect was right after I finished treatment. Both my arms and leg would get completely numb and it was painful, like when you try to move your leg when is asleep. This happened for about 2 months maybe more. I could not sleep since it got worst every time I lie down. I had to sleep in a sitting position and even then I had to get up every couple of hours and shake my limbs until the pain went away. Vitamin B helped eventually

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  6. 6
    • Reader21
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    Anniversary

    Celebration

    It's been two years since my first operation and it feels that it's been longer but it's something to celebrate since I feel good and healthy

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  7. 7
    • Reader21
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    Lost loved one

    Loss

    I belong to a breast cancer support group and we just lost two members in the last two months. It is always hard since we become very close in this group

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  8. 8
    • Reader21
    • Experience with Invasive Lobular Carc...
    over 3 years ago
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    Other Care

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

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