wileyone's Journey:

Survivor: Breast Cancer > Invasive Lobular Carcinoma > Triple-Negative Breast Cancer

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 5 years ago, Female, Age: 62, Stage I, HER2 Positive: No, ER Positive: No, PR Positive: No

  1. 1
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Diagnosed

    Oh No

    I had my usual screening mammo 2/2012 expecting it to be fine. March 27, 2012 I had a lumpectomy. I consider myself lucky because lobular cancer can be hard to spot on a mammo. My previous mammo in 2011 was negative. I also had 2 biopsies. The first missed the cancer, the radiologist was astute enough to see that and scheduled a second biopsy where the cancer was found. Only 10% of breast cancers are lobular, ductal is the most common. So lobular is usually treated like ductal due to lack of studies. Lobular also tends to be bilateral and multifocal, showing up in more than one place in the breast. Mine was multifocal within the 1.9cm area.

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  2. 2
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Lumpectomy

    Procedure or Surgery

    3/2012 The surgery wasn't so bad except I was diagnosed with sleep apnea and my oxygen level kept dropping after surgery so I had to spend the night. Little pillows I was given worked great to cushion the side of my breast. Three lymph nodes were taken and the area of cancer was removed through a small incision around the areola. They don't do frozen sections on lobular cancer because it is tricky to diagnose, and they don't want you lying on the table for all that time.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    chemo or no chemo

    Decision Point

    I was expecting with Stage One that I would not need chemo. (I did not want chemo in a big way.) When I met with the oncologist she thought I should have it due to it was lobular, multifocal, and I'm 57. So we did the Oncotype test which showed I was in the middle of the range for recurrence. They don't know what to do with the middle people, there is a study going on now. So at 26 with a range of 1-50, she suggested again that I do chemo. I really thought it was overkill, so to speak, but my support group also encouraged me to "do all I could". The Oncotype test takes about 2 weeks for results.

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  4. 4
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I had taxatere and cytoxan every 3 weeks for four times. I took premedication of steroids and antinausea medications to reduce any allergic reaction and nausea starting the day before chemo. Chemo itself was easy. Just an IV of the 2 medications which infused over 1.5 hours. They also gave me 3 more antinausea pills at the chemo. My veins are fairly good, so the nurses had no problems with starting IVs each time. I took a support person with me each time. I also took an antianxiety medication an hour prior to chemo, just in case.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    I was given Neulasta to take the day after chemo each time so my white blood count would not fall too low. It is a subcutaeous shot. I just used my tummy fat for the shot. I am a nurse so it was no big deal for me. Small needle, stinged a bit, but not bad. So chemo on Tuesday, Neulasta on Wednesday. The bone pain would start as early as Thursday, peaking on Friday, and continuing for days after. The first cycle I just dealt with it by crying and rocking back and forth. I thought it was just part of what I would have to go through. I saw my oncologist the day before the second chemo and she gave me Vicodin for it. So I took Vicodin the second cycle. The third cycle the pain was tolerable. After the fourth cycle I had one day of incredible thigh pain so I took Vicodin that day. I did not get any infections or end up in the hospital. My WBC count dropped to 3.7 prior to chemo #4, which is good for a cancer patient.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Fatigue (tiredness)

    Side Effects

    OMG, the fatigue was mind numbing. I've been exhausted before, but nothing like the fatigue. Chemo Tuesday, and by Friday I was down for the count. My support group brought dinners to me the first 1.5 weeks after chemo. My sisters would take turns coming that weekend after chemo to "take care of me". My the time the next chemo was due I would feel somewhat ok. The fatigue was worse as the number of chemos increased. After the last chemo, I tried to work on my stamina. Going somewhere that has shopping carts was great because I could lean on the cart and walk. We were also having a terrible heat wave during this time so it was cool in the stores. I also would go to the mall and walk for an hour. Days I didn't feel the energy, I stayed home. Naps were helpful because I wasn't sleeping well due to hot flashes and the heat.

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  7. 7
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Bladder problems

    Side Effects

    After the first bout of chemo and steroids, I began to have urinary tract symptoms like urgency and frequency. So the doctor had me do a test and I had a bladder infection. The bacteria was proteus which can be a normal bug to be colonized with. So I took 7 days of antibiotics and was fine. Then it happened again the second time. Same bug. So I took 14 days of the medication. The test I did after the 14 days showed the bug was gone. Steroids can sometimes do that.

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  8. 8
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Rash

    Side Effects

    I broke out in hives and itchy palms after the third chemo. My feet were not affected. It was the itchiest thing ever! So I used hydrocortisone cream, benadryl cream, benadryl pills, zyrtec...and ice! I slept and sat with my hands in ice packs due to the itchiness. I thought all my skin would peel off, but it didn't. This lasted about 2 weeks.

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  9. 9
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Diarrhea

    Side Effects

    Oh yes, the diarrhea. It would start after the chemo and last until the next chemo. A sore bottom was not fun. I had to be near a bathroom especially after a meal. I didn't use any immodium. Everything was back to normal about 5 weeks after my last chemo.

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  10. 10
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Hair loss (alopecia)

    Side Effects

    Exactly 10 days after my first chemo my hair was coming out in handfuls. So I got a short cut. It still was so bad that I got a buzz cut of 1/2 inch a few days later. I had already bought a wig, so I was ready. But the wig was too hot, so I wore a baseball cap when out or a scarf. At home, nothing on my head. I never was completely bald. Always had a bit of hair on my head. I still have 1/2 inch of hair. It is filling in...more hair is coming in, but it doesn't seem to be getting longer. Except a few strays on top of my head.

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  11. 11
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Taste change/loss

    Side Effects

    The no taste thing started the evening after chemo, very fast. Then the tongue would change color and feel icky. It lasted through all the chemos. After my fourth chemo I had this salty taste in my mouth that lasted about a month. That was weird. I can taste now, I am happy to say.

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  12. 12
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Side Effects

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

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  13. 13
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Finished treatment

    Celebration

    My last chemo was 7/17/2012. I feel so awful for 3 weeks that it was really over 8/7/2012. Hallelujah!

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  14. 14
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    External radiation

    Radiation

    7/31/12 I had my radiation oncology CT scan for measurements for radiation. On 8/8/12 they did a radiation simulation. Then I started actual radiation on 8/9/12. The nurses had talked to me about skin care, so I used aloe vera gel and calendula gel after the treatment and several times a day. The radiation rash started on the 12th treatment over the top of my breast where the tissue is thinner. It was itchy. The nurses said to use hydrocortisone cream, which I did, and it helped the itch and to dry it up. I had a little rash under the breast. I wore the little camis with the shelf bra instead of a bra. Much more comfy. I am still wearing the camis. I did double strength radiation for less time. So 16 days instead of 25. There is a Canadian study which supports this if you fit their criteria. I was glad to do it a shorter time!

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  15. 15
    • wileyone
    • Experience with Triple-Negative Breas...
    over 4 years ago
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    Finished treatment

    Celebration

    My last day of radiation was 8/30/12. I started to get a bit emotional the day before. I was teary as the treatment was going on. I actually cried during the last treatment, and sobbed as I left the building. I had someone with me that day to comfort me. I really had been a bit stoic during this whole thing and now that it is over I am a bit emotionally labile.

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