The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education, has published a new addition to its library of patient resources, expanding the information available for breast cancer.

The NCCN Guidelines for Patients: Inflammatory Breast Cancer are now available for free – along with other patient guidelines, language translations, webinars, and short videos containing expert-vetted information about breast cancer – at Photo courtesy: © 2023. NCCN. Used with permission.

The new NCCN Guidelines for Patients® discusses Inflammatory Breast Cancer and adds to patient and caregiver resources for Breast Cancer Screening and Diagnosis, Ductal Carcinoma In Situ, Invasive Breast Cancer, and Metastatic Breast Cancer.

The guidelines are designed to provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services and are generally recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine.

A rare disease
Inflammatory breast cancer (IBC) is a rare and aggressive form of breast cancer. Most inflammatory breast cancers are invasive ductal carcinomas.

Based on data from the Surveillance, Epidemiology, and End Results (SEER) database, maintained by the National Cancer Institute (NCI), the American Cancer Society, estimates that inflammatory breast cancer accounts for 1% to 6% of all cases in the United States. The disease, which progresses rapidly, often in a matter of weeks or months, tends to be diagnosed at a younger age and more often in women with African ancestry. In a[1][2][3][4]

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In the majority of cases, at the time of diagnosis, inflammatory breast cancer is either stage III or IV disease, depending on whether cancer cells have spread only to nearby lymph nodes or to other tissues as well.

“A diagnosis of inflammatory breast cancer can be terrifying for the patient as well as their family. Most people don’t know there are different types of breast cancer and need specific information that is designed for patients to help them understand that treatment will be somewhat different and why that’s important,” said Ginny Mason RN, BSN, Executive Director, Inflammatory Breast Cancer Research Foundation and IBC Patient.

“If someone does an online search for ‘breast rash’ they might immediately see frightening statistics about inflammatory breast cancer and assume the worst. The NCCN patient guidelines can help provide crucial information so people understand treatment options and learn about survival rates that have improved in recent years,” Mason added.

“These patient guidelines distill the information in a way that’s more digestible and paint a broader picture, so patients can get a better handle on their circumstances,” said William J. Gradishar, MD, FASCO, FACP, Betsy Bramsen Professor of Breast Oncology & Professor of Medicine, Chief, Division of Hematology/Oncology, Director, Maggie Daley Center for Women’s Cancer Care, Deputy Director, Clinical Network, Robert H. Lurie Comprehensive Cancer Center at Northwestern University.

“While the tools we use for IBC are similar to the tools for other kinds of breast cancer, the sequence and tempo are different,” Gradishar further noted.

Guideline for patients
Th new guidelines for Patients explain that treatment typically includes systemic therapy to shrink the tumor, followed by surgery to remove the breast and lymph nodes, and then radiation therapy. Many patients have advanced disease by the time of their diagnosis, and it can advance to the metastatic stage more quickly.

Gradishar, who also serves as Chair of the NCCN Guidelines® Panel for Breast Cancer, noted that it’s important not to dismiss any unusual skin changes to the breast, including redness, swollen nipple area, or warmth to the touch. These appearance shifts could be harmless, but it’s important to get medical attention right away, in case the tumor biopsy confirms inflammatory breast cancer. The disease can develop in all genders, including those assigned male at birth.

“The bottom line message is to pay attention, but not to feel terrified,” Gradishar said.

“Inflammatory breast cancer is pretty uncommon, but when it’s present, it needs to be addressed sooner rather than later.”

“Having easy access to NCCN patient guidelines empowers people to advocate for themselves when making tough decisions,” added Mason.

Note: * The NCCN Guidelines for Patients: Inflammatory Breast Cancer are available for free online and via the NCCN Patient Guides for Cancer App. Printed versions are also available for a nominal fee at

[1] Dawood S, Cristofanilli M. What progress have we made in managing inflammatory breast cancer? Oncology (Williston Park). 2007 May;21(6):673-9; discussion 679-80, 686-7. PMID: 17564325.
[2] Jaiyesimi IA, Buzdar AU, Hortobagyi G. Inflammatory breast cancer: a review. J Clin Oncol. 1992 Jun;10(6):1014-24. doi: 10.1200/JCO.1992.10.6.1014. PMID: 1588366.
[3] Hance KW, Anderson WF, Devesa SS, Young HA, Levine PH. Trends in inflammatory breast carcinoma incidence and survival: the surveillance, epidemiology, and end results program at the National Cancer Institute. J Natl Cancer Inst. 2005 Jul 6;97(13):966-75. doi: 10.1093/jnci/dji172. PMID: 15998949; PMCID: PMC2844937.
[4] Inflammatory Breast cancer. American Cancer Society (ACS). Online. Last accesses on April 24, 2023.

Featured image by Daniel Stone National Cancer Institute on Unsplash. Used with permission.

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