Inflammatory breast cancer

Inflammatory breast cancer, or IBC, is an aggressive type of invasive breast cancer that usually doesn’t form a lump. IBC is marked by symptoms you or your providers might notice but not relate to breast cancer. These include

• breast swelling
• skin color changes in the breast
• breast pain
• sensations of heat
• thickening of skin
• peau d’orange, when the skin of the breast looks dimpled like an orange peel

Breast lumps are uncommon in IBC, so mammography is unlikely to pick it up. This causes doctors to often mistake it for other illnesses. IBC spreads quickly, so prompt diagnosis and treatment are important to improving outcomes.

Diagnosing inflammatory breast cancer

Inflammatory breast cancer affects about 4,000 people each year. Experts believe that IBC represents between 1 and 5 percent of breast cancer cases in the United States.

Providers often mistake IBC for a rash or breast infection called mastitis. This can lead to delays in diagnosis. If your doctor prescribes an antibiotic and the symptoms don’t go away after you finish treatment, the issue is unlikely to be mastitis. Consider a second opinion, and ask your doctor what further tests could be done to diagnose the problem.

There is no single way to test for IBC, so a diagnosis is usually based on symptoms your doctor can see, such as growing breast size, redness, and skin changes. You will receive the same tests for diagnosis as a person with any other type of breast cancer. If your doctors suspect IBC, though, they may take also take a biopsy of the skin.

Instead of forming a lump, IBC grows in sheets or nest-like patterns. It travels through the lymph system, forming clumps of cancer cells called tumor cell clusters that clog the natural plumbing of the breast. Trapped in the lymph nodes and vessels, these cancer cell clusters cause swelling, discoloration, pain, and nipple inversion (when the nipple turns inside out). Often, symptoms appear quickly, over several days or weeks.

Because the cancer is usually not limited to the breast itself, IBC is always stage III or IV.

Go to our section on Testing for more information about diagnosis.

Basics of treatment for inflammatory breast cancer

Standard treatment for IBC is different than it might be for women with other types of invasive breast cancer. Your doctor is likely to recommend

• neoadjuvant therapy, full-body treatment before surgery
• mastectomy, removing the entire breast, as your surgery
• radiation therapy

Study results have shown that women with IBC who have trimodality treatment, in which chemotherapy, radiation, and surgery are used, live longer that those who do not. Your providers will recommend the order of treatments. If you have IBC and are weighing your treatment options, ask if trimodality treatment is right for you.

Neoadjuvant treatment with chemotherapy or targeted therapy

With IBC, standard treatment starts with neoadjuvant therapy, or chemotherapy before surgery. Neoadjuvant chemotherapy can help shrink the tumors so they are easier to remove during surgery.

IBC is not a single subtype of breast cancer. It is more likely than other breast cancers to be triple-negative or HER2-positive, but IBC can be any type of disease. If the cancer is HER2-positive, you could receive neoadjuvant treatment with trastuzumab (Herceptin) or pertuzumab (Perjeta). If it is hormone receptor-positive, your doctor is likely to recommend hormonal therapy after surgery as well.

A radiologist may do imaging tests after chemotherapy to see whether the medicines worked against the cancer. You may also see changes with the naked eye.

Like other cancer types, IBCs that are hormone receptor-positive or HER2-positive may require adjuvant treatment, medicine given after surgery. Your doctors can help you understand why they recommend more treatment for you.

Local treatments

The standard surgery for IBC is a mastectomy and axillary lymph node dissection, surgery to remove some or all of the lymph nodes under your arm. Even when inflammatory breast cancer shrinks with chemotherapy, the treatment may not be able to get rid of all the disease. Surgery helps rid those areas of any disease that remains.

If your breast surgery does not result in clear margins, an area of cancer-free tissue around the tumors, your surgical oncologist will do further surgery, followed by radiation therapy. Radiation therapy lessens your risk for local recurrence, the cancer returning in the treated areas.

Breast reconstruction

In IBC, it’s not possible to do immediate breast reconstruction after mastectomy because of the need for radiation therapy. But it many cases, it is possible to have breast reconstruction. If you are interested in rebuilding your breast or breasts, speak with your providers.

Go to our section on Treatments for more information.

Getting the best care for inflammatory breast cancer

Many doctors are unfamiliar with IBC. To make sure you get standard therapies, consider seeking treatment at an academic center or with a specialist. Look for doctors with an interest in IBC. When you meet with your team, ask them if they have treated people with IBC in the past.

If you do not have access to specialists, ask your doctors if they are willing to consult with someone who has experience treating IBC. Your doctor might benefit from reading the breast cancer clinical practice treatment guidelines from the National Comprehensive Cancer Network.

Researchers are working toward a better understanding of IBC and how to treat it. To date, they believe there may be as many as 10 subtypes, all different from one another.

To help researchers learn more about IBC, you may consider taking part in a clinical trial, a study that looks at how well new medical approaches work in people. Clinical trials offer access to new treatments that are not otherwise available and may prove to work better than standard treatments. Participating in a clinical trial also helps researchers develop better treatments for people diagnosed in the future.

You may also donate a sample of your breast tissue to the IBC Research Foundation BioBank or to similar clinical studies at academic cancer centers. Your donation, along with information you provide in a confidential questionnaire and your medical records, helps researchers study the traits of IBC.