Jacqueline Miller is one of MD Anderson's inflammatory breast cancer ambassadors. She is not an IBC patient, but is on the board of directors for the Inflammatory Breast Cancer Foundation and is active in spreading the word about IBC in the African-American community.
By Jacqueline Porterfield Miller, Inflammatory Breast Cancer Foundation, Board of Directors
Inflammatory breast cancer (IBC) is the most aggressive (fast growing) and deadly form of breast cancer. It is a rare malignancy that is often initially misdiagnosed as an infection or rash.
Inflammatory breast cancer is a disease that needs more attention and more education.
IBC forms sheets or nests of cancer cells that block the lymph vessels in the skin of the breast, not the usual lump women are told to look for, thus rarely seen on routine mammograms. Inflammatory breast cancer may cause the breast to become red, swollen and warm.
The numbers speak volumes
The American Cancer Society estimates that IBC accounts for 2.5% of all breast cancers in the United States, with 192,370 new diagnoses and 40,170 deaths expected this year. The five-year survival rate is between 25% and 50%, mainly from misdiagnosis, from the community's lack of expertise in treating IBC.
Ten percent of inflammatory breast cancer cases are in African-Americans women, and we have the highest mortality rate from IBC. We are indeed at risk. The rate in African-American women is at least double that among whites. We comprise only 8.4% of all breast cancer cases.
Every 12 minutes a woman dies from breast cancer and every year more than 5,000 African-American women die from breast cancer. We make up 12.6% of all IBC cases.
Why African-American women?
African-American women are more likely than all other women to die from breast cancer. Why? Maybe because we lack access to services, or because when diagnosed we are likely to be more advanced in the stages of breast cancer.
We are associated with a poorer overall survival rate for all breast cancer. But why this is so is still unclear.
- there are fewer treatment options,
- not being able to get health care or not following up after getting abnormal test results,
- mistrust of the health care system and the belief that mammograms are not needed,
- a lack of knowledge and, most important,
- not knowing that you don't need to have a lump to have breast cancer.
Time to take action
I believe and agree with many oncologists that screening guidelines need to be changed in reference to African-American women, because more than 10% of cases are developed by the time a woman has reached age 40.
It is my goal to get more attention and much-needed sources of information to physicians, patients, communities and the general public (media), and to African-American communities.
I cannot stress enough that this is a silent killer, which can appear over night and without any signs. Looking for lumps, having mammograms and/or seeing your doctor is not enough.
We must not only look for lumps, but look for changes.
Inflammatory Breast Cancer (IBC) Foundation