Mothers, daughters, and dealing: What is Inflammatory Breast Cancer?

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IBC, Inflammatory Breast Cancer, is a rare, highly aggressive form of breast cancer. What? You didn't know there were different forms of breast cancer? Neither did I until I received this video, a special report from KOMO TV, Seattle, Washington, about IBC early.

A friend sent the video to me via email. It contains not only compelling personal experiences but also graphic images of breasts ravaged by this disease. However, the most disturbing information is that IBC is not detectable by a mammogram. Neither will self-examination in search of lumps do you much good in finding IBC.

In addition, according to KOMO's special report, most doctors haven't seen a case of IBC since medical school and would be unlikely to recognize the symptoms. Some doctors diagnosed women with signs of the disease, such as "redness" of the breast and "skin hot to the touch," with an infection from bug bites. The doctors subsequently prescribed a course of antibiotics. In the meantime, the cancer progressed until it was too late for the women to receive effective treatment.

Mothers and Daughters

For me, as a mother, the more heartbreaking part of the news story invovled a 16-year old named Andi. According to the special report, help came to Andi too late because she couldn't talk to her mother:

Andi was just 16 when she died from IBC. She was too embarrassed to tell her mother her breast looked funny. It was slightly enlarged and her nipple was inverted -classic IBC symptoms.

I don't know what the family dynamics were in this situation, but I do know that no mother wants to lose a child because that child couldn't speak openly to her about bodily functions or appearance.

And then there's the story of Patti Barfield, whose daughter Kristine came to her at age 37 and told her that she had IBC and she was probably going to die. The news, grief and anger, propelled Ms. Barfield to action. She launched a campaign to tell other women about the disease, wanting to spare others the suffering she and her daughter experienced.

"Have you heard of inflammatory breast cancer?" Bradfield asks a woman walking by on a Kirkland street corner. "I'm not trying to sell anything. My daughter has stage 4 and I'm just trying to alert women." She stopped 46 people on that corner, and 42 never heard of IBC.

Her daughter is in stage 4 of the disease. There is no stage 5.

The news report stresses that most women don't know about inflammatory breast cancer. This is probably because it's so relatively rare in relation to most breast cancer cases, so rare that information about the disease has been hard to find even on the website of a leading breast cancer awareness foundation.

"It doesn't happen very often so there isn't as much awareness about it," says Lynn Hagerman, Executive Director of the Susan G. Komen Foundation's Puget Sound Affiliate. IBC accounts for about 6% of all invasive breast cancer cases.

Here are some symptoms of the disease from the KOMO TV News report:

  • rapid increase in breast size

  • redness
  • skin hot to the touch
  • persistent itching
  • an orange peel texture to the breast
  • thickening of breast tissue

    More information

    And here's a link to information about IBC at the National Cancer Institute: Inflammatory Breast Cancer. Some important points from the NCI are the following:

    (In cases of IBC) ... the cancer cells block the lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or “inflamed.” IBC accounts for 1 to 5 percent of all breast cancer cases in the United States. ... It tends to be diagnosed in younger women compared to non-IBC breast cancer. It occurs more frequently and at a younger age in African Americans than in Whites.

    You wouldn't guess from the KOMO video that this cancer "occurs more frequently ... in African Americans" because you don't see any African Americans in the video. It's unlikely this is the fault of KOMO's producers. It's probably a reflection of Seattle, Washington, demographics and who is more vocal.

    When I published my first post about this disease with the KOMO video over at my personal blog, I did so because the KOMO TV special report moved and alarmed me. Still, I thought about young black women visiting my blog and wondered how many young black women will drop in, see the video and ignore its information, saying "Oh, this is not about me. This is about white women." (Sadly some humans die sooner or lose loved ones just this way, by unwisely tossing illnesses into slots marked "not about me.")

    The thought then came to me, It will probably turn out that African-American women are more at risk for this cancer. So, when I read the information related to African-Americans at the NCI link today, I was not surprised. However, in general, black women have lower incidences of the common form of breast cancer compared to white women. Nevertheless, when black women develop breast cancer, they tend to develop more aggressive forms and die or die with the common form because the diagnosis comes too late. This tragedy is in part related to socio-economics and lack of education. The bottom line is that all women should know their breasts and get proper care. Being female is enough reason to get the facts.

    Talking to daughters

    Considering the women in the video versus who medical science tells us more frequently gets this cancer, it's clear that if you want to be forearmed, then who's more likely to get this form of cancer should not deter you from learning more about it. All women with breast cancer and their families suffer; too many women die.

    Still, for those of us with daughters, regardless of ethnicity, knowing that this form of breast cancer is more likely to strike young women, we must pay close attention. Surely we don't want to be in the shoes of mothers who find out our teenage daughter is dying rapidly because she didn't know the symptoms, nor did we, nor did our family doctor.

    Even harder to take would be that you knew the symptoms but your daughter never told you about hers because she was "too embarrassed" to talk to you about her own body. Therefore, I add to this post on IBC the link to an article called "Can you talk about her body?"

    Links

  • KOMO TV Special IBC Report video, not same as other video link
  • Link to special report text from video
    Inflammatory Breast Cancer at National Cancer Institute
  • Can you talk about her body?
  • Breast Cancer Differences in Black Women
  • Inflammatory Breast Cancer Clinic at MD Anderson Cancer Center
        Thank you, Mare, for sending me this link, and thank you, Patti for sharing this blog post with Mare. :-)
    Nordette Adams is a journalist, poet, and fiction writer whose personal blogs are Confessions of a Jersey Goddess and NJ Spoken Word.
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