Tucker385's Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Age: 57, Stage III, HER2 Positive: Don't Know, ER Positive: Don't Know, PR Positive: Don't Know

  1. 1
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Misdiagnosed

    Oh No

    Had been watching mass for over 3 years (going twice a year for mammogram and ultrasound for first 2 years, then last year they say I only need mammogram even though I still have mass. Went in Oct for mammogram for them to want to see me in less than 15 hours for ultrasound...then they say I need needle biopsy that was soooo painful. Biopsy results almost a week later was cancer...that must have been there for over a year maybe even 2-3 as they never biopsied me!

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  2. 2
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Currently taking weekly treatments of TAXOL for 12 weeks, then I will move to a 3 drug mixture (FAC) that I take every 3 weeks for 4 treatments. Brushing my teeth with plain Sensodyne tooth paste several time a day. Wear face mask when I go out but I generally only got to my small church, doctor and to Walmart late at night when not many people for groceries once a week. If I eat out with my family we got for 11:00 a.m. or 1:30 or later to miss crowds and sit away from people. No shaking hangs or touching other. Family has to wash hand to be around me too! Don't let any friends come inside my home so they can bring in germs! They are understanding as I talk to them on my carport wearing a mask instead of coming inside. Talk openly about my cancer so others won't be scared and they can watch for signs on themselves and they others. Chemo now takes about 2 hours..15 minutes for steroid...30 minute wait to get in blood good...1 hour for Taxol treatment...then 10 minutes or less to clean out my implanted port I take my treatments with. Really made me tired for days!

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Treatment Dr

    Decision Point

    OB/GYN was referring for surgery in Beaumont, TX after he read Radiologist report but I wanted second opinion in Houston, TX from MD Anderson Cancer Center to see if they could help me more than local doctor. MD Anderson is world known for being on the cutting edge of cancer treatment and saving lives that other doctors didn't know how to treat aggressively or even know how to offer hope if they offered any! At MD Anderson I found hope, compassion and wonderful doctors and staff. Chose to go with MD Anderson after consulting with Dr Stacy Moulder in the Breast Center. They are making my journey easy and I love the way they talk to you where you can understand them and your cancer plus they don't make feel that your questions are off the wall or try to skip over them. They are great in the testing areas also! They even worked with me on being scared of pain during some of my test...eased by fear and pain during the test. Decided to have both breast removed after second breast had pre-cancer cell in it (DSI cancer) and my grandmother had a mastectomy years ago as to bad breast cancer. Several other cancers in my family too so I didn't want to take a chance by leaving one breast and maybe it going into full blown cancer. Having one surgery to end breast cancer as I don't want to come back here in 1, 7, 15 years or ever for breast cancer again! God is going to total heal me!

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  4. 4
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Allergic reaction

    Side Effects

    On first TAXOL treatment I had steriod drug for about 30 minutes then waited 30 minutes to get in blood. Started TAXOL (with nurse in room to observe for 30 minutes) and with 3 minutes I could tell something didn't feel right in my arm (tingling feeling kind of numb) them face and throat. Turned to look at my husband and said "I think something is wrong" when I could see nurse standing beside me saying my face and ears were red and flushed and then my breathing started to cut off. Nurse broke open her reaction kit and pulled Taxol tubing out to stop it from running. She gave me two big shots in my IV (50 mg of Benadryl and something else) and said I should start feeling better and needed to relax. Almost immediately my throat opened and no difficult breathing any longer. She watched me for about 10 minutes then went and called Dr. Moulder who said I needed to still take the TAXOL but at a slow rate and to watch me close during the treatment. Restarted TAXOL and reaction medicine made me go to sleep for treatment. Took about 2 1/2 hours for that treatment of TAXOL, but was fine once treatment was restarted. I took 25 mg of Benadryl before starting second treatment the next week, then steriod, then TAXOL slow for 1 1/2 hours and no reaction. No reaction on any following treatments (only taking steriod and TAXOL).

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  5. 5
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Fatigue (tiredness)

    Side Effects

    Currently having fatigue on chemo day and 2 more days normally where I have to sleep or aleast lay around. I then may have to lay down on the other afternoons for awhile, not always sleeping but am tired. If I do much in the morning (cooking, cleaning or even just drive somewhere and eat with my family close by) I have to sleep as it is exhausting. Rest they say is good but I shouldn't stay in the bed everyday all day and I don't.

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  6. 6
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Taste change/loss

    Side Effects

    I can't eat greasy or spicy food or it will come out as gas and soft stools. I eat vegetables, yogurt (thick kind only and whips by Yoplait) and lean meats. Fish is good too! Sweets don't appeal much and my chip craving is gone too but I will eat them if I have a sandwich. Holding my weight that they say is better than gaining but I know I am eating less and the chemo is adding some so they must be balancing out for now.

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  7. 7
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Skin changes

    Side Effects

    Washing my hands w/ Bath and Body Works anti-bacterial moisturizing liquid soap to fight off germs. Use their triple moisture body cream to keep my skin from being so dry. I have used it and Lubriderm extra dry skin lotion (good for itchy skin too) on my hands as they dry out bad, especially between my fingers and under my wedding rings.

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  8. 8
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 3 years ago
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    Double Mastectomy

    Procedure or Surgery

    After double mastectomy on 5-29-13 my insurance only allowed me to stay in hospital 23 hours. Cleaning of my drains (4) was the worse part for first few weeks, as the pain would be awful. Couldn't really do anything for myself, so my husband or sister has to be with me 24 hours a day for first few weeks. No way to cook or do household duties. Can't babysit my granddaughter as I can't pick up anything really!

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  9. 9
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    5 more TAXOL treatments after yesterday's chemo. Really tired today! Cooked good breakfast late this morning and looking to rest today.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  10. 10
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 3 years ago
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    External radiation

    Radiation

    Treatments weren't really bad as MD Anderson offered me a special breathing treatment that shielded my heart so it would be radiated. Radiation though gave me SEVER fatigue. I slept 4-5 hours after each daily treatment. Had chronic fatigue after treatments and can still be affected after one year has gone by. Out on medical disability due to chronic fatigue!

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  11. 11
    • Tucker385
    • Experience with Invasive Lobular Car...
    almost 5 years ago
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    Cancer is shrinking

    Celebration

    Saw my doctor yesterday after doing ultrasound and she said chemo is working. My mass is shrinking and my lymph nodes that are affected are also responding to the TAXOL. Praise God! Prayers are working from me, my family, friends and even people I don't even know. You need anyone to pray for you as GOD listens to all!

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