car092360's Journey with Invasive Lobular Carcinoma

Survivor: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 5 years ago, Female, Age: 56, Stage IIB, HER2 Positive: No, ER Positive: Yes, PR Positive: No

  1. 1
    • car092360
    • Experience with Invasive Lobular Car...
    over 5 years ago
    car092360's Avatar

    Hair loss (alopecia)

    Side Effects

    21 days post chemo treatment #1 )Taxotere/Cytoxan) hair starting to go : ( Already have scarves, hats and night warmers ready. Sad but I've had a "bad hair life" so actually looking forward to starting from scratch lol. Looking forward to not having to cuss my way through trying to get my hair to do what it obviously does not want to do (stubborn hair). Memories of my mother trying to get my hair to "curl" via a home perm at age 8 for a wedding come flooding back. All of us girls (3 in all) sat and had my mother perm our hair - we all had long hair. Must've taken hours and hours and the smell must've been horrid in those days (late 60s). I remember running around so excited I had "bounce" to my hair. Three days later - no curl. Stubborn I tell you!!!

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  2. 2
    • car092360
    • Experience with Invasive Lobular Car...
    over 5 years ago
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    Decision Point

    Mastectomy time coming up soon. Will know surgery date after 11/28 follow up with Surgeon. Trying to decide if I want just the one breast removed or to have a bilateral mastectomy. Biopsy on other side came up with possible pre-cancerous "calcifications" - check back in 6 mths. Will have to find out if my insurance covers it. I don't want any reconstruction - just not for me. Would be fine being breast free and wearing breast forms (or not). Will see what Surgeon has to say, then make a decision.

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  3. 3
    • car092360
    • Experience with Invasive Lobular Car...
    over 5 years ago
    car092360's Avatar

    Double Mastectomy

    Procedure or Surgery

    Had double mastectomy on 12/28/11. Right breast had 4.5 cm tumor and left breast had "tumor markers" so I decided on the double mastectomy. Surgeon told me that majority of his patients have very little pain afterwards and I just didn't believe him...he was right!! Worse pain I had was having to lie on my back until both drains were out after 12 days...I'm not a back sleeper and my back was not happy about that. Once the drains were out (again a baby ouch when pulled out) and I was able to sleep on my side, my back was happy again. First look in mirror was a little unsettling but got over the look of me when I realized that I was alive so see myself (not a ghost). All in all - as far as surgery goes - not a bad experience!

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  4. 4
    • car092360
    • Experience with Invasive Lobular Car...
    about 5 years ago
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    Finished treatment

    Celebration

    Finished my last Taxotere/Cytoxan chemo treatment on 3/16/12! YAY!!!! Onc will start me on estrogen suppression therapy in about a month for the next 5 yrs. since my tumor was ER+. I hope the sumb*tch doesn't come back! Good riddance!!!

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  5. 5
    • car092360
    • Experience with Invasive Lobular Car...
    about 5 years ago
    car092360's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    Started Femara/Letrozole on April 14, 2012 for estrogen suppression therapy. I was diagnosed with bursitis in my knee about a week before I started the meds. But I've been having ankle, knee, and hand pain since I started on the meds. At first I thought it was just the bursitis in my left knee but the pain is also in my right knee. If I sit for awhile or I lay in one position while sleeping, then I move, I'm in pain. Both hands fall asleep during the night...and are tingly during the day. I have not spoken to my doctor about it yet. I've read that those who experience side effects with this med, have a better chance of no bc recurrence than those who don't experience side effects. The pain is tolerable for now, and the stiffness also. I have dr appt with onc on June 19th so we will gather more data until that time and then speak with doc.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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