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The Unheralded Breast Cancer

As a breast cancer advocate, blogger and writer, I believe it important to support all types of breast cancers.  Last week I had the opportunity to meet someone who has had Inflammatory Breast Cancer (IBC).  Our conversation did not get very far before I realized I knew very little about this disease.

My friend, Terry Arnold, was diagnosed with Triple Negative Inflammatory Breast Cancer seven years ago.  Initially, she was misdiagnosed.  Although rare, it is also a very aggressive disease in which cancer cells block lymph vessels in the skin of the breast.  It is called inflammatory because many times the breast looks swollen, red or inflamed.

Its progression is rapid, often in a matter of weeks or months.  Inflammatory Breast Cancer is generally stage III or IV at diagnosis depending on whether there is lymph node and/or tissue involvement.

Inflammatory Breast Cancer does not show up on mammograms.  It can be detected by Ultrasound, Magnetic Resonance Imaging as well as other sophisticated scans.

Although the disease was written about as far back as the 1800’s, when Terry was diagnosed, finding literature on the disease as well as other resources available was difficult.  People create networks out of need and necessity.  Terry was no exception.  Based on her personal experience, Terry founded The IBC Network Foundation.  This nonprofit organization serves as a beacon for others.

Some tidbits that Terry shared with me:

  • Inflammatory Breast Cancer has been referred to as the orphaned form of breast cancer.
  • Early detection is not an available as the signs are an outward physical presentation.
  • Inflammatory Breast Cancer is the most fatal of all breast cancers.
  • The term “remission” does not apply to those with this type of breast cancer.  “No evidence of disease” (NED) is used instead.
  • We cannot research a disease if it is not funded.
  • There has never been a public service announcement (PSA) on this type of breast cancer.
  • Komen just started including IBC in their literature this year.

Breast cancer does not discriminate, yet it would appear we are not all on the same team.  Those with Inflammatory Breast Cancer have been left to fend for themselves.  It is time that we as a breast cancer community acknowledge, include and support them.

Terry Arnold has been “no evidence of disease” for six years!  If you want to learn more about her network, please check out their site at:  www.theibcnetwork.org.