Inflammatory Breast Cancer – What is it?

Inflammatory Breast Cancer (or IBC) is a rare and unique form of breast cancer that affects approximately 16,000 women each year in the United States.  Patients with IBC have a 5 and 10 year disease-free survival rate of less than 45% and 20%, respectively.  This is in comparison with 85% and 80% for non-inflammatory breast cancers.  While all breast cancers can spread throughout the body (metastasize) using blood and lymphatic vessels, IBC spreads primarily through the dermal lymphatics of the skin that overlie the breast.  The tumor cells can spread as tiny balls of tumor (called emboli) or as sheets.  These tumor cells invading and blocking the dermal lymphatics is what gives IBC its characteristic appearances.  This is also what allows IBC to spread so quickly and easily through the body, making it so devastating.

Not Your Typical Breast Cancer

IBC typically affects younger women with an average age being about 46 years old (the youngest reported was 12). IBC progresses very rapidly and the patient goes from normal breast to metastatic disease within a six month period.  This type of progression is very unusual compared with non-inflammatory breast cancer where a woman may have a detectable, premalignant lesion or even a lump for some time before it begins to spread.  To further complicate things, IBC may grow as sheets of cells instead of a lump and therefore not be detectable by mammography or a breast self-exam.  Usually, the only way to determine if IBC is present is by a combination of clinical diagnoses that include assessing the signs of IBC, mammography, ultrasound and biopsy.

What are the signs of IBC?

Rapid changes in appearance of the breast that occur over a short period of time (from overnight, to weeks or a few months) are the hallmarks of IBC.  These changes may include a breast that appears swollen, red and hot to the touch, a skin rash that does not clear, peau d’orange (the breast tissue has the texture of an orange’s skin), enlargement of the breast, inverted nipple, soreness or aching, and color changes (pink, reddish, purple or bruised looking).  Despite the word “inflammatory” in the name of the disease, the inflamed appearance of the breast is not actually inflammation, but fluid buildup caused by tumor cells blocking the lymphatics.  Other symptoms may include swollen lymph nodes under the arm, above the collar bone, or in both places.  Unfortunately, many of these symptoms tend to resemble an allergic reaction, infection or mastitis. Because IBC is unusual, most primary care physicians and gynecologists have never seen this form of cancer.  Therefore, IBC is often misdiagnosed and the patient is given antibiotics or asked to change soaps, shampoo or laundry detergent.  As a result, precious treatment time is lost which is devastating when you’re dealing with such an aggressive, fast growing cancer.

Who is at Risk for IBC?

At this point, the answer is simply, anyone.  Unlike other forms of breast cancer that have distinct genetic components like mutations in the BRCA1 or BRCA2 genes, the risk factors and causes of IBC are currently unknown.  Therefore, there are no genetic tests to determine risk for IBC.  African-American women appear to be at a higher risk in comparison to other races but for the most part, IBC does not discriminate and it targets all age groups.  Current research has shown that for the most part, the gene products that control IBC are completely different from those that control non-inflammatory breast cancers.

What Can Be Done and What is Being Done?

IBC was largely ignored for nearly 70 years, and up until a few years ago, many physicians argued that IBC was not a unique form of breast cancer and an entity in itself.  Questions about IBC, like what causes it, and how should it be diagnosed and treated, have not yet been answered.  Recently, because of the efforts of a small group of patient advocates, scientists and physicians, IBC has slowly become recognized as a very real health issue.  A handful of laboratories throughout the world are working independently and in collaboration to try and unravel the molecular mechanisms underlying this devastating disease. A handful of cancer care centers have now established clinics dedicated solely to IBC.  Physicians in these clinics specialize in IBC and are working to establish criteria for a standard of diagnosis and care of these patients.  Current treatment for IBC begins with chemotherapy followed by surgery, and then ending with localized radiation.  The best weapons against IBC are education and awareness.  It has to include men and women, young and old alike.  It must also include doctors who may not have seen a case of IBC since medical school (if they’ve seen it at all).  Cancer help-line workers must be made aware.  Research must increase to identify the unique molecular aspects of this disease so that treatments, risk factors and causes can be identified.  Overall public awareness of this disease will hopefully lead to new directed efforts in IBC research.

*Special thanks to Dr. Ken van Golen of the University of Delaware.  Dr. van Golen has devoted the last 13 years of his career to studying and researching IBC, and he has kindly provided most of the information above.

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