“Some itchy, bright red bumps appeared on my breast that look like insect bites,” wrote one MyBCTeam member. “Now I’m terrified.”

While itching, burning, and red spots on the breast may be caused by bugbites or harmless skin conditions, in some cases, these changes may indicate inflammatory breast cancer (IBC).

Many other types of breast cancer also can lead to a distinctive lump within the breast tissue. However, people with IBC don’t usually have a lump. Instead, they have a different set of signs and symptoms that may include:

• Red, purple, or dark spots or discoloration that covers all or part of the breast skin
• Pain or tenderness
• Itchiness or burning sensations
• Peau d’orange (the skin of the breast looks pitted or dimpled, like the surface of an orange peel)

What Is Inflammatory Breast Cancer?

Inflammatory breast cancer is a rare type of breast cancer. IBC leads to unusual symptoms and is more difficult to diagnose than many other types of breast cancer. Symptoms may include redness, swelling, tenderness, and dimpling of the skin. The condition can be misdiagnosed as mastitis, a breast infection common during breastfeeding. IBC grows and spreads fast and needs to be treated quickly.

About 1 percent to 5 percent of people with breast cancer have IBC. According to the American Cancer Society, Black women are more likely than white women to be diagnosed with IBC in the United States. Additionally, people who develop this cancer tend to be younger. Across all types of breast cancer, the average age at diagnosis in the U.S. is 62 years old. However, the average age of IBC diagnosis in the U.S. is 57 for white women and 52 for Black women, according to Breastcancer.org.

What Causes Inflammatory Breast Cancer?

Any cell in the body can undergo gene changes that turn it cancerous. These changes can make a cell grow out of control. Inflammatory breast cancer develops when gene changes occur in a cell located in the lobule (a gland that makes breast milk) or near a duct (a tube that transports the milk).

As the original cancer cell grows and divides, it creates many more cancer cells that block lymph vessels. Lymph vessels are a part of the lymphatic system — the collection of organs and tissues that fight infection, remove waste, and control levels of fluid around the body. When breast cancer cells block the lymph vessels, lymph fluid can’t properly drain out of the breast. As lymph fluid builds up, the breast swells and changes in appearance. These cells can also spread to the skin, causing an inflamed appearance.

Inflammatory Breast Cancer Risk Factors

Certain factors can increase a person’s chances of being diagnosed with IBC. These include:

• Having a family history of breast cancer or a personal history of another type of breast cancer
• Having dense breast tissue (with more ducts and supportive tissue and less fatty tissue)
• Starting menstruation before age 12
• Never having been pregnant
• Becoming pregnant for the first time after age 30
• Being of a higher weight
• Receiving radiation therapy treatments for another type of cancer in the past
• Having changes in certain genes, including BRCA1, BRCA2, PALB2, CHEK2, and PTEN

If you’re interested in learning more about your own risk of developing inflammatory breast cancer, talk with your doctor.

Symptoms of Inflammatory Breast Cancer

As this cancer progresses, one breast starts to look very different over a very short period of time. Apart from the symptoms listed above, you may notice:

• Swelling or heaviness, making one breast suddenly seem larger than the other
• Warmth or heat
• A nipple that looks flat, becomes inverted, or has discharge

Some people with IBC also notice swollen lymph nodes. These may feel like hard lumps in the armpit or near the collarbone.

Having breast symptoms doesn’t necessarily mean that you have cancer. Some are also common symptoms of other conditions, such as heat rash, dermatitis (skin irritation), and mastitis (inflammation or an infection of the breast tissue). However, you should see a doctor right away if you notice that one breast suddenly starts to look different or is undergoing skin changes.

Inflammatory Breast Cancer Tests and Diagnosis

If you’re experiencing IBC symptoms, your doctor will likely have you undergo imaging tests, which may include a mammogram, an ultrasound, or MRI. These imaging tests can help the doctor see inside the breast and identify any problems, such as a tumor.

Unlike other types of breast cancer, IBC often doesn’t form lumps, so it may be difficult to diagnose with standard imaging tests. Doctors need to perform a biopsy to confirm whether a person has IBC. During a biopsy, the doctor removes a small piece of tissue. This tissue is then studied under a microscope to determine if cancer cells are present. Your doctor may use a skin punch biopsy to take a tiny bit of skin and underlying tissue. Alternatively, they may perform a core needle biopsy, in which ultrasound imaging guides the needle to a deeper section of breast tissue to remove cells there.

If you receive a diagnosis of inflammatory breast cancer, your doctor may recommend additional imaging tests to see whether cancer cells have spread to other parts of the body. These other imaging tests may include positron emission tomography (PET), computed tomography (CT), or a combination.

Types of Inflammatory Breast Cancer

When diagnosing breast cancer, including IBC, doctors will determine the molecular subtype of the breast cancer. To do this, doctors perform tests on biopsy samples to see which proteins are found on the surface of cancer cells. This information helps doctors understand how breast cancer cells grow, know which treatments may work best, and estimate prognosis (outlook).

Doctors will test for proteins called hormone receptors, including estrogen receptor (ER) and progesterone receptor (PR), and determine whether cells contain a protein called HER2. If cells lack ER, PR, and HER2, doctors say that the cancer is “triple-negative.” Triple-negative breast cancers tend to grow faster and are harder to treat. Many people with IBC have triple-negative cancer.

Staging Inflammatory Breast Cancer

Tests can also help your doctor determine your cancer stage, which describes how far cancer cells have spread. Inflammatory breast cancer is always at least stage 3 (sometimes written in Roman numerals as stage III) — it has spread to nearby tissues. Doctors stage IBC as follows:

• Stage 3B — IBC cells have spread to the skin or chest wall (the muscles and bones of the chest) and to nearby lymph nodes.
• Stage 3C — IBC cells have spread to other tissues in the area as well as at least 10 nearby lymph nodes.
• Stage 4 (also called metastatic breast cancer) — IBC cells have spread to other parts of the body, such as the lungs, liver, or bones.

Treatment of Inflammatory Breast Cancer

Doctors usually recommend an aggressive treatment plan for IBC. Treatment for stage 3 IBC often starts with chemotherapy or other cancer-killing drugs to help shrink the cancer. Next, a person with IBC often receives surgery to remove the breast tissue (mastectomy) and nearby lymph nodes. After surgery, radiation therapy or additional drug treatments may be given.

Chemotherapy, targeted therapy, and hormone therapy are the main treatments for stage 4 IBC. Surgery and radiation therapy may be used, but these treatment options are less common for metastatic disease.

Chemotherapy, Targeted Therapy, and Hormone Therapy

Chemotherapy drugs are often liquids given through an IV tube or taken orally as capsules or pills. These drugs travel throughout the body, killing cancer cells. When chemotherapy is given before surgery, doctors may call it “neoadjuvant chemotherapy.”

Some cases of IBC are HER2-positive. These cancers are sensitive to certain targeted therapy drugs such as Herceptin (trastuzumab), Perjeta (pertuzumab), and other drugs that target HER2. Targeted therapy drugs can recognize and block certain proteins found on the surface of cancer cells, thereby killing the cells.

Another drug option may be hormonal therapy. If IBC cells have ER or PR proteins, hormone therapy can stop or slow down cancer cells’ growth.

Surgery

If chemotherapy successfully shrinks the cancer, a person with IBC may have surgery. Doctors usually recommend a mastectomy, in which all the breast tissue is removed. The surgeon may also perform an axillary dissection to take out nearby lymph nodes. After surgery, a person with IBC may have radiation treatments or go through additional rounds of chemotherapy, targeted therapy, or hormone therapy.

Radiation Therapy

During radiation therapy, high-energy particles or beams are delivered to the breast and surrounding area. Most people with IBC receive radiation therapy because it’s difficult to remove all the cancer cells during surgery. A person will usually undergo radiation therapy five days a week for five to six weeks.

Clinical Trials

Many experts recommend that people with IBC look into clinical trials. During these studies, researchers test new drugs, doses, or treatment protocols (details of therapy). Clinical trials may give people with IBC a chance to receive potentially more active treatments and help others with breast cancer.

What Is the Prognosis for IBC?

Inflammatory breast cancer often leads to a poor prognosis. To learn more about your individual outlook, talk to your doctor, who is familiar with your overall health and your personal health history.

When estimating prognosis, doctors use studies of large groups of people diagnosed with IBC. Researchers may measure prognosis in several ways. One possibility is the five-year relative survival rate. This number tells you how many people with IBC are likely to survive for five years, compared to those without IBC. In the United States, people with this cancer are 40 percent as likely to live for five years or more than are people without IBC, according to the American Cancer Society.

A person’s prognosis depends on the stage of their cancer. The five-year relative survival rate is 54 percent for people with stage 3 IBC and 19 percent for people with stage 4 IBC.

A slightly different way of measuring prognosis is to use a number called the overall survival rate. This number tells you how many people diagnosed with a condition are alive after a certain amount of time. Various studies have looked at large groups of people with IBC and found the following overall survival statistics: About 71 percent of people with nonmetastatic IBC live for at least five years after being diagnosed. About 39 percent of people with metastatic IBC live for two years or more after diagnosis, and half of those with metastatic disease live for 18 months or more.

Prognostic Factors

Certain characteristics can raise or lower a person’s chances of having a good outlook. These are called prognostic factors.

Cancer stage is one prognostic factor. People with breast cancer that has begun to spread around the body have a worse prognosis than those who have cancer cells only within the breast.

Additionally, a cancer’s molecular subtype affects outlook. People with IBC who have triple-negative breast cancer have a worse prognosis than people with other subtypes. Those with HER2-positive breast cancer have a better outlook.

Other factors that can affect prognosis include a person’s age, other health conditions, tumor grade (how abnormal cancer cells look and how fast they grow), and treatments received.

Talk With Others Who Understand

MyBCTeam is the social network for people with breast cancer and their loved ones. On MyBCTeam, more than 65,000 members come together to ask questions, give advice, and share their stories with others who understand life with breast cancer.

Are you living with inflammatory breast cancer? Did you develop a red spot that looked like a bugbite on your breast? What other symptoms have you experienced? Share your thoughts in the comments below, or start a conversation by posting on MyBCTeam.