Inflammatory Breast Cancer and African-American Women : 'The Silent Killer'

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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

jackie miller.jpgInflammatory 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. 

IBC is not a new type of breast cancer. It is very important to distinguish IBC from other types of breast cancer because there are major differences in its symptoms, prognosis and treatment. However, getting the correct diagnosis quickly is critical for patients because the disease spreads beyond the breast in a matter of just days or weeks.

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. 

Other reasons may be because:
  • 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. 
IBC occurs more frequently and at a younger age in African-American women. Some researchers believe that African-American women are less likely to seek treatment for any kind of breast cancer and others believe that these treatments are less available to African-American women.

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. 

Research has documented that 20.5% of African-American women refuse chemotherapy and 26.3% refuse chest radiation. Access to health care, cultural beliefs, and demographic and socioeconomic factors play a role in the refusal.

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. 

It is imperative to change the perceived notion that all breast cancer has a lump. Through education and awareness, this can and must change. 

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.

None of this will save you from this insidious breast cancer killer -- one that women and men know virtually nothing about. And it's something every one must know. Education, awareness and knowledge are what save lives.

We must not only look for lumps, but look for changes.

Inflammatory Breast Cancer (IBC) Foundation  

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