ruthieq's Journey with Inflammatory Breast Cancer

Survivor: Breast Cancer > Inflammatory Breast Cancer

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 11 years ago, Female, Age: 61, Stage IIIC, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Diagnosed

    Oh No

    First discovered the red sore bruised looking area with a small thickened area that grew over the weekend (YES weekend) to a ridge as long and hard as my index finger, in June 2006. Went to Dr who referred me to a surgeon then surgery scheduled for end of the month, a lumpectomy. Was sure it was IBC and told the docs this. The surgeon blew me off saying I didn't have ALL the symptoms...a big mistake!

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  2. 2
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Lumpectomy

    Procedure or Surgery

    Had lumpectomy. Was sure this was IBC but no one would agree. So I had a lumpectomy, and surgen then went on vacation. Hate when they do that, and he didn't leave permission for me to get results. I am an RN and went into the computer at my hospital and looked it up. I had Invasive cancer, DCIS, and some undifferentiated cells with no clear margins. My friends saw how upset I was sent me home and asked our favorite oncologist to look at the results. She advised me to get further surgery for clear margins and a sentinel node for biopsy.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    My surgeon was not happy that I called in the oncologist before he had a chance to see the results. I told him that I was unhappy that he left and didn't leave word that i could get my results. ANyway, he did the partial mast (by this time), to get the clear margins and the sentinel node. To get the sentinel node dyes must be used to flow to the first node draining the breast. Blue dye and a radioactive dye were both used on me. The radiopaque dye was thicker and didn't move at all through my breast- a good indication that the lymphatics of my breast were blocked with IBC. He blamed me for not massaging enough. The blue dye made it through though. He took the rest of half of my breast including the nipple which was totally inverted by now, as well as began taking the first node, it was grossly full of cancer, then the next and the next until 12 had com back frozen section 4 grossly positive, some slightly so he took them all. Recovery wasn't too bad, I had drains and dressings. when I went back to him the report said Inflammatory BC as well as the invasive and DCIS and that the IBC was so large an area (by this time in July) I was staged IIIc.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Diagnosed

    Oh No

    WHen I was diagnosed finally I had already had some surgery to try and get clear margins. This has the effect of spreading IBC faster, so there are possibly tiny microscopic IBC cells floating around waiting for the hormones to come back to grow fast. Definite Oh NO!

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  5. 5
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    chemo was just the usual breast cancer therapy because they knew so little about what better way works. I did 4 rounds of dose dense Adriamycin and Cytoxin every other week. Then Taxotere dose dense x 4 rounds every 3 weeks. Side effects of the first rounds were extreme fatigue, esophageal sores, appetite supression, and pain from bone marrow stimulation. The steroids they give you kept me up at night just enough to be thinking all about this journey and the stats I'd read about.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Single or double mastectomy

    Decision Point

    Should I just do one or both? This was the decision really very early on. My oncologist suggested that maybe I wouldn't want to do this (treatment) a second time) and at that time they were unsure whether IBC could go from one breast to the other. I was very far along cancer growth-wise, so it was a no brainer for me to choose double mast. I would do it again, because its much easier to match 2 breasts in reconstruction than to try and get one side match the other, plus I didn't want to wear a bra for awhile and this would give me a choice whether or not to do so. And YES I did not want to do this again if I could prevent it now.

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  7. 7
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    Bilateral Mastectomy

    Procedure or Surgery

    The surgery went well and they hoped to have gotten it all from my breast, none in the chest wall. The left breast was cancer free! Side effects though besides psychological, were that I developed seromas on both sides, fluid filled blisters that needed draining because when filled hurt a lot. I had them drained about 5 times before they finally began to close and heal. The impact to my life was that I no longer had this shelf to look at and terrible scars to see. HOWEVER I had my life and was grateful for that. Actually I was looking forward to not having to wear a bra anymore. I couldn't have reconstruction surgery until at least 2 yrs after radiation, so I was looking at a bit of tim e without bras. I like that part a lot!

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  8. 8
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    about 5 years ago
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    External radiation

    Radiation

    Rads made me feel extremely tired. Not only did I feel tired after surgery 4 weeks ago, but it gradually increased through rads until it was all I could do to get around, some days. Initially I felt nothing with rads, but after a week or so I began feeling a tingling sensation in my chest. The rad techs and docs will tell you this is imagination, but they are not feeling this sensation so what do they know? I am fair skinned and I began to burn early on into rads. I had 33 doses, 1 daily M-F. Now IBCers should have 2 doses daily for the same total, so it would have onlty lasted 3 weeks. But I would have burned worse I think. As it was, I had dressings on my chest for a few weeks post rads.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    • ruthieq
    • Experience with Inflammatory Breast Ca...
    over 4 years ago
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    Milestones

    Its been 6 yrs now since surgery and this year will be my 6th year since treatment ended. I have been off the AIs for a year or so. I have scars and thinner hair, but I'm still NED (no evidence of disease) after this incredibly aggressive disease! I have good days and bad days, and this experience has shown me that I will never be exactly the same as before. Thats ok because I am strong and could face anything now, since I have faced this and survived! Although I have some limitations, within those, I can do anything I want to try.

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