What It Was Like
In January of 2000, while everyone else was waiting for the Y2K Bomb to explode, I was diagnosed with inflammatory breast cancer (IBC). Lymph nodes were involved; seven were removed during the mastectomy; five were positive. At that time, what little I could find on IBC indicated that survival rates after five years was 5%,1 and I could not find stats for survival after ten years. The tumor was estrogen receptor-positive, progesterone receptor-negative, and HER2-positive.
What is inflammatory breast cancer?
From Cancer Treatment Centers of America’s website;
“Inflammatory breast cancer (IBC) is a rare type of breast cancer that often starts in the soft tissues of the breast and causes the lymph vessels in the skin of the breast to become blocked. As a result, the breast may become firm, tender, itchy, red, and warm due to increased blood flow and a build-up of white blood cells. This type is distinct from other types, with major differences in symptoms, prognosis, and treatment. The term “inflammatory” refers only to the appearance of the breasts. When breasts become inflamed due to an infection or injury, they often become tender, swollen, red, and itchy. However, the underlying cause of IBC is unrelated to inflammation. IBC tends to grow quickly and aggressively and is typically diagnosed when it is already in an advanced stage, most often stage IIIB or stage IV.”2
I have watched a million shows with breast cancer as the topic since my diagnosis but never had I heard IBC mentioned specifically until Season 13 of Grey’s Anatomy. When Grey’s Anatomy first aired, I could not have been less interested. Every time I turned around, though, someone asked, “Did you see Grey’s last night?” Or, if I thought Dr. Bailey looked like my sister. She does. In Season 13, Episode 12, although my breast did not look like Maggie Pierce’s mother’s, I recognized it. I caught my breath when Jackson Avery told her it was IBC.2
In Season 13, Episode 17, I watched the surgery and wondered how real it was. Did my lymph nodes look like that?3 Were the ones I saw in the episode compromised or negative? Did my films look like those?
In Season 13, Episode 18, (spoiler alert) Maggie’s mom died.4 Unlike Maggie’s mom, mine did not re-occur until four years later.
Multiple breast cancer diagnosis
The first diagnosis (left breast) brought chemo, mastectomy, radiation, Tamoxifen, and menopause. The second, (left lung) chemo and menopause. The third, (left chest wall) chemo, radiation, Herceptin, and menopause. The fourth, in 2008, (left ovary) hysterectomy, chemo, and menopause.
The protocol was brutal- physically, spiritually, and emotionally; robbing me of my hair, my strength, my appetite, my spirit, and shoving me into menopause long before I was ready. I developed sores in my mouth; my fingernails and toenails were infected. The bottoms of both feet were so blistered, it was torture to walk. I couldn’t eat because I couldn’t taste and because it irritated the sores in my mouth. Because I couldn’t eat, I lost over 100 pounds. Certain smells made my stomach heave.
Other side effects did not improve with time. My eyes still burn and itch, my left chest wall was burned to a crisp by radiation. The scar tissue developed cellulitis so painful, I was in the hospital for two weeks, and it left an area that burns/itches constantly. Lymphedema, osteoporosis, and cardiomyopathy are the most vexing.
In spite of everything, I am blessed; ever mindful that God is good, all the time. That’s right. And all the time, God is good!
Caregivers: Do you practice self-care?