Written By Robin Warshaw, Contributing Writer
Reviewed By Minetta C. Liu, MD
On the day she was diagnosed with inflammatory breast cancer, also known as IBC, Patrice Starks, of Royal Palm Beach, Florida, had never heard of the disease.
Like many people, she thought all breast cancer formed as a lump that could be felt by touch or seen on a mammogram. Having just turned 41 years old, Patrice had her first mammogram a few months before and was told all was fine. When her left breast began to hurt and swell, she thought she had an infection, like the one she experienced when breastfeeding her daughter.
Finding out the real source of her breast discomfort “was completely shocking,” Patrice says – especially the aggressive nature of the type she had.
“One of the things that troubled me most was the lack of knowledge on my part – and in the world – about IBC. Even most of the doctors I see don’t know much about it,” she says.
IBC often makes no lump. The cancer cells block lymph vessels, which makes the breast swollen and red. Affected breasts may feel warm or heavy, look bruised, or have skin ridges or pits, like an orange. Only 5 percent or fewer of all breast cancers in the U.S. are diagnosed as IBC. It is staged as stage III or more.
Because symptoms resemble other medical conditions, such as skin rashes or mastitis, a common breast infection, diagnosis may be delayed. A timely diagnosis of IBC is important because breast-related changes and discomfort may develop quickly.
Patrice was diagnosed with stage III, estrogen receptor-negative, progesterone receptor-negative, HER2-positive disease. She received her diagnosis on a Monday, saw an oncologist on Tuesday, then spent the rest of the week being readied for chemotherapy, which started the following week.
“You don’t have time to figure out your life,” she says.
She was working 50 hours or more per week, having just been promoted to a deputy supervisor job for Florida’s juvenile justice programs. Scheduled to go on a business trip that week, she called her boss and cancelled the trip right after getting her diagnosis.
“I had to work on making sure I became healthy enough to remain a wife, remain a mother, remain a co-worker,” she says. “My job description went from working for the state of Florida to working for Patrice.”
She was especially concerned about how her diagnosis would affect her young children: a 20-month-old daughter and 3-year-old son, who has autism and doesn’t speak.
“He’s very perceptive in understanding emotions, so I told the two of them that Mommy’s sick and she has a boo-boo.” Her son responded by putting his hand on her breast. “I said, ‘Yes, Mommy has a boo-boo.’”
When her hair began to fall out from chemotherapy, her husband shaved her head. Their daughter sat in Patrice’s lap, fascinated by the dropping hair, as their son ran around, laughing. “It was fine,” she says. “They don’t understand cancer, and I’m glad.”
Coping With Fatigue
Patrice had chemotherapy, trastuzumab (Herceptin) and then a mastectomy and radiation. She has experienced a lot of fatigue since treatment began. She can be having a conversation, then wake up three hours later, having fallen asleep without knowing it.
She gets up with the children and prepares them for day care. Her husband drives them while Patrice grabs a nap. Her mother, who is retired, helps with the laundry, drives Patrice to appointments and errands, and assists when the kids are home. Patrice bathes her daughter and son because “I didn’t want to change their routine. I wanted to still be their mother.”
She hopes the end of radiation treatment will lessen her tiredness. Her healthcare team advised her to walk. “They said any bit of exercise will give you more energy.”
Before breast cancer, she exercised twice a week and could walk a mile in 15 or 20 minutes. Recently, for a fundraising relay, she walked 2 miles in 2.5 hours. When she woke up the next day, she stayed awake for only a short time, and then slept another 6 to 8 hours more.
“You don’t even realize how tired you are until it hits you,” she says. When she has energy in the evenings, she puts the children in their stroller and walks about a mile in the family’s neighborhood.
Spreading the Word
Patrice has been on a personal campaign to tell more people about IBC. When her doctor’s office asked if she would talk with a woman who had just been diagnosed, she agreed immediately. “I want as many people to know as much about this as possible,” she says.
As an African-American, she is also concerned about the lack of awareness about IBC she sees among African-Americans, who are more likely to be diagnosed with the disease at a younger age than white women. All women should follow appropriate screening guidelines.
“I tell all of my friends, you have to do your monthly checks of your breast. I realized there were some changes in my breast as it was growing and growing, but I didn’t take the time from work and go to the doctor like I should have,” Patrice says.
Now she has a message for others: “Be sure you go to the doctor if there’s an issue.”
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.