Inflammatory Breast Cancer

Read stories about women living with inflammatory breast cancer:

What is inflammatory breast cancer?

Inflammatory breast cancer (IBC) is an aggressive breast cancer.

The main symptoms of inflammatory breast cancer are swelling and redness in the breast. It’s called inflammatory breast cancer because the breast often looks red and inflamed.

Most inflammatory breast cancers are invasive ductal carcinomas [167]. This means they began in the milk ducts.

About 1% to 5% of breast cancers in the U.S. are inflammatory breast cancers [167-168]. Women with inflammatory breast cancer tend to be diagnosed at a slightly younger age than women with other breast cancers [167-168].

Some women are more likely than others be diagnosed with inflammatory breast cancer, including [167-171]:

  • Black and African American women
  • Women who are obese

Although some social media posts suggest inflammatory breast cancer is a new form of breast cancer, it was first identified in the 1800s [169].

Learn about treatment for inflammatory breast cancer.  

Warning signs of inflammatory breast cancer

Warning signs of inflammatory breast cancer include [167-168]:

  • Swelling or enlargement of the breast
  • Redness of the breast (may also be a pinkish or purplish tone)
  • Dimpling or puckering of the skin of the breast
  • Pulling in of the nipple
  • Breast pain

See images of these warning signs.

Sometimes a lump can be felt, but it’s less common with inflammatory breast cancer than with other breast cancers.

Signs of inflammatory breast cancer tend to arise quickly, within weeks or months. With other breast cancers, warning signs may not occur for years.

If any of the changes above last longer than a week, tell your health care provider. If you’re not comfortable with your health care provider’s recommendation, it’s always OK to get a second opinion.

Diagnosis of inflammatory breast cancer

Challenges of diagnosing inflammatory breast cancer

Routine mammography may miss inflammatory breast cancer because of its rapid onset, which may happen in between scheduled mammograms.

Inflammatory breast cancer can be hard to see on a mammogram because it’s often spread throughout the breast, or it may only show up as a sign of inflammation, such as skin thickening [168].

In some cases, skin changes (listed above) or a lump (if present) may be noted during a clinical breast exam.

Inflammatory breast cancer may first be mistaken for an infection or mastitis because of symptoms such as redness and swelling, and the frequent lack of a breast lump.

If you have any of the warning signs listed above and they last longer than a week, tell your health care provider. It’s always OK to get a second opinion if you’re not comfortable with your health care provider’s recommendation.

Biopsy and inflammatory breast cancer diagnosis

Inflammatory breast cancer may be diagnosed based on clinical appearance, but a biopsy is needed to confirm the diagnosis of invasive breast cancer.

A biopsy also gives information on the tumor, such as hormone receptor status and HER2 status. These factors help guide treatment.

Metastases and inflammatory breast cancer

About one-third of women with inflammatory breast cancer have metastases (metastatic breast cancer) when they are diagnosed [168]. This means the cancer has spread beyond the breast and nearby lymph nodes to other parts of the body such as the bones, lungs, liver or brain. Metastatic breast cancer is also called stage IV or advanced breast cancer.

For this reason, when inflammatory breast cancer is diagnosed, tests for metastases are done to see if it’s spread to other parts of the body.

Learn about treatment for metastatic breast cancer.

Prognosis for inflammatory breast cancer

Although survival rates for inflammatory breast cancer may not be as high as they are for other breast cancers, modern treatments continue to improve prognosis (chances for survival) [171-177].

With modern treatment, some studies estimate 5-year survival with inflammatory breast cancer to be about 50% to 70%, and median survival time to be about 8 years [176-177,313].

Prognosis, however, depends on each person’s diagnosis and treatment.

Learn about treatment for non-metastatic inflammatory breast cancer.

Learn about treatment for metastatic breast cancer.

Learn about survival rates.

52829-3.gif

For a summary of research studies on survival in women with inflammatory breast cancer, visit the Breast Cancer Research Studies section.

Factors that affect prognosis for inflammatory breast cancer

Hormone receptor status and HER2 status

Triple negative inflammatory breast cancer is hormone receptor-negative and HER2-negative. Triple negative inflammatory breast cancer and inflammatory breast cancer that is hormone receptor-positive and HER2-negative tend to have a worse prognosis (chance of survival) than other inflammatory breast cancers [168,176].

Hormone receptor-negative breast cancers, such as triple negative inflammatory breast cancer, can be treated with chemotherapy, but they can’t be treated with hormone therapy.

HER2-positive breast cancers can be treated with chemotherapy and HER2-targeted therapies, such as trastuzumab (Herceptin). So, women with HER2-positive inflammatory breast cancer tend to have better survival than women with HER2-negative inflammatory breast cancer [167-168,176].

Lymph node status

Most women with inflammatory breast cancer have lymph node-positive breast cancer when they are diagnosed [167-168]. This means the lymph nodes in the underarm area (axillary lymph nodes) contain cancer.

Lymph node-positive breast cancers tend to have poorer survival than lymph node-negative cancers (the lymph nodes don’t contain cancer) [178].

The more lymph nodes that contain cancer, the poorer the prognosis tends to be [178].

Learn more about factors that affect prognosis.

Treatment for non-metastatic inflammatory breast cancer

Everyone with inflammatory breast cancer is treated with a combination of:

Treatment may also include one or more of the following:

Learn more about these breast cancer treatments.

Find a list of questions you may want to ask your health care provider about non-metastatic inflammatory breast cancer.

Learn about clinical trials for inflammatory breast cancer.

Neoadjuvant (before surgery) therapy

The first treatment for inflammatory breast cancer is neoadjuvant chemotherapy, usually with an anthracycline-based chemotherapy and a taxane-based chemotherapy.

Neoadjuvant chemotherapy helps shrink the tumor(s) in the breast and lymph nodes so surgery can better remove all the cancer.

When possible, all the chemotherapy planned to treat inflammatory breast cancer is given before surgery [8]. If the tumor does not get smaller with the first combination of chemotherapy drugs, other combinations can be tried.

For people with HER2-positive inflammatory breast cancer, neoadjuvant therapy usually includes chemotherapy and the HER2-targeted therapy drugs trastuzumab (Herceptin) and pertuzumab (Perjeta) [8]. These drugs are not given at the same time as the chemotherapy drug doxorubicin (Adriamycin) [8].

In some cases, if the tumor does not respond to neoadjuvant chemotherapy, radiation therapy may be given before surgery [8].

Learn more about neoadjuvant therapy.

Surgery and radiation therapy

Surgery for inflammatory breast cancer is almost always a mastectomy with an axillary dissection. The axillary dissection removes some lymph nodes in the underarm area (axillary lymph nodes).

Surgery is followed by radiation therapy. Almost all women with inflammatory breast cancer will need radiation therapy.

Breast reconstruction

With inflammatory breast cancer, breast reconstruction is usually done after radiation therapy is completed, rather than at the same time as the mastectomy. This may be called “delayed” reconstruction.

Delayed reconstruction ensures the radiation therapy can be done effectively and in a timely way.

Chemotherapy, hormone therapy and HER2-targeted therapy

Treatments after surgery and radiation therapy depend on treatments given before surgery and tumor characteristics, such as hormone receptor status and HER2 status [8]:

  • If chemotherapy was not completed before surgery, the remaining chemotherapy is given after surgery.
  • HER2-positive inflammatory breast cancer is treated with HER2-targeted therapy (a combination of trastuzumab and pertuzumab) before and/or after surgery.
  • Hormone receptor-positive inflammatory breast cancer is treated with hormone therapy.

Under study

Treatments after neoadjuvant therapy for women with inflammatory breast cancer who still have cancer in the breast at the time of surgery are under study.

  • Will a sentinel node biopsy be done? How will the status of my lymph nodes affect my treatment plan?
  • Is my tumor hormone receptor-positive or hormone receptor-negative? How does this affect my treatment plan?
  • Is my tumor HER2-positive or HER2-negative? How does this affect my treatment plan?
  • If I have triple negative breast cancer, how does this affect my treatment plan?
  • What are my treatment options? Which treatments do you recommend for me and why?
  • Should I get chemotherapy before breast surgery? Will I need more treatment after my surgery?
  • How long do I have to make treatment decisions?
  • Is there a clinical trial I can join?
  • Can I have a lumpectomy (breast-conserving surgery) plus radiation therapy?
  • If I am having a mastectomy, will I need to have radiation therapy? How will that decision be made?
  • When will I meet with a radiation oncologist to discuss radiation therapy?
  • Can breast reconstruction be done at the time of the surgery, as well as later? How much later can it be done? Can you refer me to a plastic surgeon?
  • If I choose not to have reconstruction, what types of prostheses are available? Where can I find them? Will my insurance cover the cost? What if I’d like to “go flat”?
  • Will you give me a copy of my pathology report and other test results?
  • What should I consider before treatment begins if I would like to have a child after being treated for breast cancer?
  • What is my follow-up care? Which health care provider will manage my follow-up care?
  • Who can talk with me about the cost of my treatment, including the expenses covered by my insurance and the costs I should expect to pay out-of-pocket?
  • Will part of my tumor be stored? Where will it be stored? For how long? How can it be accessed in the future?

Learn more about talking with your health care provider.

If you have been diagnosed with locally advanced breast cancer or IBC or are too overwhelmed to know where to begin to gather information, it may be helpful to download and print some of Susan G. Komen®‘s resources. For example, we have Questions to Ask Your Doctor About Breast Cancer Surgery and Questions to Ask Your Doctor About Breast Reconstruction.

You can download and print the resources to bring with you to your next doctor’s appointment or you can save them on your computer, tablet or phone using an app such as Adobe. Plenty of space and a notes section are provided to write or type the answers to the questions.

There are other Questions to Ask Your Doctor resources on many different breast cancer topics you may wish to download.

Treatment guidelines

Although the exact treatment for breast cancer varies from person to person, evidence-based guidelines help ensure high-quality care. These guidelines are based on the latest research and agreement among experts.

The National Comprehensive Cancer Network (NCCN) and the American Society of Clinical Oncology (ASCO) are respected organizations that regularly review and update their guidelines.

The NCCN has detailed treatment guidelines for patients with inflammatory breast cancer.

In addition, the National Cancer Institute (NCI) has treatment overviews.

Talk with your health care team about which treatment guidelines they use.

After you get a recommended treatment plan from your health care team, study your treatment options. Together with your health care team, make thoughtful, informed decisions that are best for you. Each treatment option has risks and benefits to consider along with your own values and lifestyle.

Playing an active role

You play an active role in making treatment decisions by understanding your breast cancer diagnosis, your treatment options and possible side effects.

Together, you and your health care provider can choose treatments that fit your values and lifestyle.

Learn more about factors that affect treatment options.

52829-3.gif

For a summary of research studies on neoadjuvant chemotherapy and breast cancer treatment, visit the Breast Cancer Research Studies section.

52829-3.gif

For a summary of research studies on radiation therapy following mastectomy in women with invasive breast cancer, visit the Breast Cancer Research Studies section.

52829-3.gif

For a summary of research studies on trastuzumab and overall survival in breast cancer, visit the Breast Cancer Research Studies section.

52829-3.gif

For a summary of research studies on survival in women with inflammatory breast cancer, visit the Breast Cancer Research Studies section.

Clinical trials for inflammatory breast cancer

Research is ongoing to improve treatment for inflammatory breast cancer.

New therapies are being studied in clinical trials. The results of these trials will decide whether these therapies will become part of the standard of care.

After discussing the benefits and risks with your health care provider, we encourage you to consider joining a clinical trial.

When to consider joining a clinical trial

If you’re newly diagnosed with inflammatory breast cancer, consider joining a clinical trial before starting treatment. For most people, treatment doesn’t usually start right after you’ve been diagnosed. So, there’s time to look for a clinical trial.

Once you’ve begun treatment for inflammatory breast cancer, it can be hard to join a clinical trial.

Susan G. Komen® Patient Care Center

If you or a loved one needs information or resources about clinical trials, the Patient Care Center can help. Contact the Komen Breast Care Helpline at 1-877-465-6636 or email clinicaltrialinfo@komen.org.

The Patient Care Center navigators offer breast cancer clinical trial education and support, such as:

  • Knowing when to consider a trial
  • How to find a trial
  • How to decide which trial is best for you
  • What to expect during a trial
  • Information about clinical trial resources

Se habla español.

BreastCancerTrials.org in collaboration with Komen offers a custom matching service to help find clinical trials that fit your health needs, including trials for people with inflammatory breast cancer.

Learn what else Komen is doing to help people find and participate in breast cancer clinical trials, including trials supported by Komen.

Learn more about clinical trials.

 

quote_icon

Komen Perspectives

Read our perspective on clinical trials.*

 

Susan G. Komen research spotlight

Komen partnered with the Inflammatory Breast Cancer Research Foundation, the Milburn Foundation, patient advocates, doctors and researchers to review what’s known about inflammatory breast cancer and to propose new ways to improve diagnosis and treatment.

Together, the group identified defining clinical, pathology and imaging characteristics of inflammatory breast cancer. These elements were used to develop the Inflammatory Breast Cancer (IBC) Scoring System, a proposed set of diagnostic criteria for the identification of inflammatory breast cancer.

The IBC Scoring System is currently undergoing validation and is being developed to increase diagnostic accuracy, guide treatment decisions and inclusion in clinical trials and aid basic research.

Learn more about this research tool for diagnosing inflammatory breast cancer.

Learn more about what Komen is doing to move inflammatory breast cancer research forward and improve care and outcomes for people with inflammatory breast cancer.

Susan G. Komen® Support Resources

  • Do you need help? We’re here for you. The Komen Patient Care Center is your trusted, go-to source for timely, accurate breast health and breast cancer information, services and resources. Our navigators offer free, personalized support to patients, caregivers and family members, including education, emotional support, financial assistance, help accessing care and more. Get connected to a Komen navigator by contacting the Breast Care Helpline at 1-877-465-6636 or email helpline@komen.org to get started. All calls are answered Monday through Thursday, 9 a.m to 7 p.m. ET and Friday, 9 a.m. to 6 p.m. ET. Se habla español.
  • The Komen Breast Cancer and Komen Metastatic (Stage IV) Breast Cancer Facebook groups are places where those with breast cancer and their family and friends can talk with others for friendship and support.
  • Our fact sheets, booklets and other education materials offer additional information.

*Please note, the information provided within Komen Perspectives articles is only current as of the date of posting. Therefore, some information may be out of date.

Updated 12/27/23

TOOLS & RESOURCES

PDF

Questions to Ask Your Doctor

PDF

Questions to Ask Your Doctor

Breast Cancer Surgery

PDF

Questions to Ask Your Doctor

Radiation Therapy and Side Effects