“My friend died of breast cancer. She wouldn’t get any treatment. It was that kind that black women get.”
I had just met Bea, and in the course of our getting-to-know-each-other chat, she had mentioned that her husband was a one-year survivor of an aggressive cancer. So I shared my story about being an eleven-year survivor of Stage IIIB breast cancer.
When Bea, who is African-American, said that her friend had the kind of cancer “black women get,” I suspected that she might have had Inflammatory Breast Cancer (IBC) because the incidence of IBC is much higher among African-Americans.
The IBC Research Foundation reports that 10% of breast cancer cases in African-Americans are IBC. Although statistics vary on the percentage of IBC cases in the overall breast cancer population, it is usually estimated to be between 1-5%. So the rate of IBC in African-Americans is at least double that among whites. In a 2004 presentation at George Washington University, Dr. William F. Anderson showed study data revealing that although black women comprise only 8.4% of all breast cancer cases, they make up 12.6% of all IBC cases.
Those numbers were in the back of my mind as I talked with Bea. But since there has been recent publicity about the higher incidence of triple negative breast cancer in that population, I said, “Was it a triple negative cancer?” No, that didn’t sound right. “Inflammatory breast cancer?” Yes, that was it.
Bea was amazed when I told her that I had also had IBC because she thought that only black women got it. She also didn’t know much about the symptoms. She didn’t know that breast cancer doesn’t always start with a lump. She was devastated that her friend didn’t get conventional medical treatment because she knew how effective it can be from her husband’s experience.
I found my conversation with Bea disturbing. She struck me as a person with an above average knowledge about cancer because of her experience with her husband. Yet she didn’t know some important facts about a deadly form of breast cancer for which her ethnic group is at risk.
There have been many studies trying to understand why African American women have a higher mortality rate from breast cancer. The National Women’s Health Information Center web page explains it this way, “African American women are more likely than all other women to die from breast cancer. Tumors are found at a later, more advanced, stage so there are fewer treatment options. Some reasons for this may include not being able to get health care or not following-up after getting abnormal test results. Other reasons may include distrust of the health care system, the belief that mammograms are not needed, or not having insurance.”
I read more than half a dozen similar articles that attributed the discrepancy in survival rates to a combination of more serious forms of breast cancer and lack of access to services. None of the articles I read specifically mentioned inflammatory breast cancer. The articles that included information about how to do a breast self-exam or when to see a doctor did not emphasize that not all breast cancer starts with a lump.
I’m certainly no expert on public health, but it seems to me that one important factor in reducing breast cancer mortality rates is educating women in the black community about IBC. They need to know to look for redness, swelling, warmth, and dimpled, pitted skin. Pain, itching, and an inverted nipple may also be present. Depending on an African American woman’s skin tone, her skin may not look red, but might take on a different hue; and in very dark skin the color might not change at all.
Primary care doctors need to know that their African American patients, especially those under age 50 are at greater risk for IBC than their white patients and take that into account when a young black woman comes in worried about breast pain or swelling. Because most cases of IBC do not present with a lump that shows on a mammogram, radiologists and primary care doctors need to look for changes in skin thickness, symmetry and density from earlier mammograms, changes which are present in the majority of women who have IBC.
Finally, all women need to understand that today’s medical treatments offer them a good chance to beat breast cancer, even the aggressive forms that are more common in the black population. Of course, I don’t know all the details about Bea’s friend, but apparently she distrusted and feared conventional treatment and instead tried a nutrition-based treatment in another state. Leaders in the black community need to urge women to be proactive about seeking diagnosis and treatment.
Certainly the combination of factors that has led to a higher mortality rate for black women is a complicated one without a quick or easy fix. Starting with education about breast cancer in general and inflammatory breast cancer specifically can make a difference.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.