By Sylvia Powers
Correspondent
Texas Metro News
Inflammatory breast cancer (IBC) is among the most aggressive and deadly forms of breast cancer—yet it remains one of the least understood, especially in the Black community.
Unlike traditional breast cancer, IBC does not typically present with a lump. Instead, it can appear as redness, swelling, irritation, or a skin infection. The result is that many women are misdiagnosed, dismissed, or dangerously delayed in receiving care.
A Young Mother’s Pain Was More Than Mastitis
When 38-year-old Sameerah Abdul-Jami, a Dallas mother of three, noticed changes in her breast while breastfeeding, she assumed it was mastitis. But the pain intensified.
“My breast got harder and harder. Anyone who accidentally bumped into me could see something was wrong and thought that I should see a doctor,” she recalled.
Even after lab work, she was told everything “looked fine”—until she insisted the doctor look at her breast, which had become swollen, red, and hard. The doctor’s expression told her there was reason for concern. A biopsy confirmed the diagnosis: inflammatory breast cancer.
According to the National Cancer Institute, IBC is a rare and aggressive disease in which cancer cells block the lymph vessels in the skin, causing swelling, redness, and inflammation. Because it mimics infection, treatment is often delayed.
Abdul-Jami was stunned.
“I had never heard of IBC, so I was scared. They tell you not to Google things, but of course I did—and I realized I had one of the worst forms of breast cancer you can get.”
Although medical reports state that IBC is always at least Stage III at diagnosis, for Abdul-Jami, it was Stage IV.
At the time, she had three small children: her daughter Muneerah, age 2, and her sons Tariq, 4, and Idris, 6.
“Once I realized how serious it was, I became stubborn. I thought, my husband can find another wife—but my kids will never have another mother.”
Determined to fight, she followed a friend’s recommendation and sought treatment atMD Anderson,one of the nation’s top cancer centers.
“Chemo was the hardest part for me. I did my treatment in Dallas to stay near my family, but I traveled to Houston every week for radiation. Most people get radiation once a day, but those of us with IBC had to get it twice a day. I was blessed to have a friend who opened her home to me for six weeks so I could complete treatment.”
During her time at MD Anderson, Abdul-Jami joined a clinical study with four other women from across the country. She bonded deeply with them.
“I went to painting classes, laughter therapy, and I decorated my rolling bag with lights to spread joy around the building. I was determined not to stay down. I knew we had to uplift each other.”
By the end of the program, she was the only one still living.
According to MD Anderson, recent studies show that with modern treatment, the five-year survival rate is about 70% for Stage III and 50–55% for Stage IV IBC patients.
A Family Devastated by IBC
In Birmingham, Alabama, Thelma Brown has lost two sisters to IBC. Six months after her sister Phyllis passed, Brown herself was diagnosed with breast cancer.
“My oldest sister was misdiagnosed with early-stage, estrogen receptor-positive, HER2- positive breast cancer,” Brown said. “After her treatment ended, her breast remained red, tender, and inflamed, and the surgical wound never quite healed. These were warning signs, but inflammatory breast cancer (IBC) was never considered.
Out of nine sisters, six have had breast cancer—two of them with IBC. Her sister, Sylvia, developed IBC in 2017 and died a year later.
Yet genetic testing revealed no known mutation in the family.
“We don’t have a genetic mutation—or at least not one they’ve identified yet,” Brown said. “That tells me there’s more research to be done.”
Brown, now a two-time survivor, says the medical community must do better.
“We’ve done a great job teaching women to look for a lump. But if that’s all we teach, we are failing—especially Black women. IBC spreads fast. Doctors are still missing it. Patients are still being misdiagnosed. We need education, for the patient community and for clinicians.”
The Alarming Reality for Black Women
Although IBC represents only 1–5% of breast cancer cases, Black women are diagnosed at higher rates and suffer worse outcomes. Because the disease spreads rapidly through lymphatic vessels, early recognition can mean life or death.
Brown refuses to use the phrase Breast Cancer Awareness Month.
“I call it Breast Cancer Action Month. Awareness isn’t enough. We need action, education, and accountability.”
Ginny Mason, Executive Director of the IBC Research Foundation and a 30-year IBC survivor, echoes that urgency:
“IBC represents only about 5% of breast cancer cases, yet as many as 10% of breast cancer deaths. After 25 years in IBC advocacy, we still encounter medical practitioners who are not fully aware of this disease. More research and heightened awareness are imperative if we are going to change patient outcomes.”
According to the American Cancer Society, warning signs for IBC include:
- Swelling (edema) of the skin of the breast
- Redness involving more than one-third of the breast
- Pitting or thickening of the skin of the breast so that it may look and feel like an orange peel
- A retracted or inverted nipple
- One breast looks larger than the other
- One breast feels warmer and heavier than the other breast
- A breast that may be tender, painful, or itchy
- Swelling of the lymph nodes under the arms or near the collarbone
Although IBC may not present as a lump, women must understand that appearance and skin changes are some of the warning signs.
“It still comes down to paying attention to your body and being persistent,” Brown said. “Ask questions. Get a second opinion. Your life depends on it.
For More Information
Visit www.ibcresearch.org to learn more about inflammatory breast cancer, treatment options, research, and support.
Sylvia Powers is an award-winning author, accomplished writer, gifted photographer, and nationally recognized breast cancer advocate with a deep passion for empowering others.
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