We’re glad to welcome back Ginny Mason, BSN, RN, Executive Director of the Inflammatory Breast Cancer Research Foundation (ibcRF), for an informative guest post, the second in her 3-part series, about IBC diagnosis and treatment.
A few months ago I shared a bit of history about the Inflammatory Breast Cancer Research Foundation here. It was a great opportunity to let folks know how our organization got started and what kinds of services we provide. While our focus is research we also direct resources to provide education and support through our website, e-mail discussion list and e-newsletter.
In this installment I want to talk about the diagnostic, treatment, and research challenges associated with inflammatory breast cancer.
For those who don’t know, inflammatory breast cancer (IBC) is a clinical diagnosis based on visible symptoms. Currently there is no specific diagnostic test for IBC. Often the pathology report doesn’t mention IBC. Typically the breast surgeon makes the diagnosis based on edema (swelling) of the breast, peau d’orange (breast skin looks pitted like orange peel), pain, itching, redness or rash, and perhaps swelling in the armpit. Each patient may have a combination or variety of symptoms. We have some photo examples on the ibcRF website. The redness may look more like a bug bite or bruise, there may be nipple changes and other changes. It’s important to note that any breast change that doesn’t resolve in two weeks should be evaluated by your healthcare provider.
IBC is very aggressive and is already in the lymphatic system when diagnosed, making it stage IIIB, IIIC, or IV. Unfortunately, mammograms seldom pick up the disease due to the lack of a palpable lump, although skin thickening is sometimes evident and should be a warning sign to the radiologist to explore further. Treatment begins with rigorous chemotherapy and usually includes modified radical mastectomy with lymph node removal and post-surgical radiation. Of course treatment is tailored to the individual patient’s needs and may deviate from this standard depending on biomarker status and stage of disease.
In 2008, the National Comprehensive Cancer Network developed a treatment guideline for IBC (thanks to some strong encouragement by our organization!). However, it is challenging to determine a standard of care when there is limited clinical trial data. Many clinical trials exclude IBC patients or fail to separate out the trial results for the IBC patients involved. To complicate matters even more, IBC patients have a higher incidence of triple negative disease (no over expression of estrogen, progesterone, or Her2/neu) but also have a higher incidence of Her2/neu over-expression than the general breast cancer population. We’re a confusing mix and that adds to the diagnostic, treatment, and research challenge.
Treatment resistant disease, persistent skin metastasis, and delayed diagnosis continue to cut short far too many lives. Overall survival statistics have improved for those facing IBC, but not enough.
As an organization we’ve focused on facilitating research that will help improve understanding of IBC so that improved treatments can be developed. In the past few years we’ve been able to fund five researchers, totaling nearly $300,000, to help answer important questions and get us closer to controlling this disease. Progress is being made but there is much more to learn and do.