Inflammatory Breast Cancer

Read 3 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 IBC 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 1-5 percent of breast cancers in the U.S. are IBC [167-168]. Women with IBC 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 IBC, including [167-171]:

  • Black and African American women
  • Women who are obese

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

Learn about treatment for IBC.  

Warning signs of IBC

Warning signs of IBC 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 IBC than with other breast cancers.

Signs of IBC 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 IBC

Challenges of diagnosing IBC

Routine mammography may miss IBC because of its rapid onset, which may happen between scheduled mammograms.

IBC can be hard to see on a mammogram because it’s often spread throughout the breast [168]. It can also be hard to see because 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.

IBC 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 IBC diagnosis

IBC 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 IBC

About one-third of women with IBC 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 IBC 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 IBC

Although survival rates for IBC may not be as high as for other breast cancers, modern treatments are improving prognosis (chances for survival) [171-177].

With modern treatment, some studies estimate 5-year survival with IBC to be about 50-65 percent, and median survival time to be about 8 years [176-177].

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

Learn about treatment for non-metastatic IBC.

Learn about treatment for metastatic breast cancer.

Learn about survival rates.

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

Factors that affect prognosis for IBC

Hormone receptor status and HER2 status

Triple negative IBC are hormone receptor-negative and HER2-negative. Triple negative IBC and IBC that are both hormone receptor-positive and HER2-negative tend to have a worse prognosis (chance of survival) than other IBC [168,176].

Hormone receptor-negative breast cancers, such as triple negative IBC, 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 IBC tend to have better survival than women with HER2-negative IBC [167-168,176].

Lymph node status

Most women with IBC 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 IBC

IBC is treated with a combination of chemotherapy, surgery and radiation therapy. Treatment may also include hormone therapy, HER2-targeted therapy, CDK4/6 inhibitor therapy, immunotherapy and/or PARP inhibitor therapy.

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

Learn about clinical trials for IBC.

Neoadjuvant (before surgery) therapy

The first treatment for IBC 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 IBC 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 IBC, 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 IBC 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 IBC will need radiation therapy.

Breast reconstruction

With IBC, 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 IBC is treated with HER2-targeted therapy (a combination of trastuzumab and pertuzumab) before and/or after surgery.
  • Hormone receptor-positive IBC is treated with hormone therapy.

Under study

Treatments after neoadjuvant therapy for women with IBC 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 or hormone therapy 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 is in charge of this 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 saved? Where will it be stored? For how long? How can it be accessed it in the future?

Learn more about talking with your health care provider.

If you have been diagnosed with locally advanced breast cancer or IBC, 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 write on them at your next doctor’s appointment. Or you can download, type and save them on your computer, tablet or phone during a telehealth visit using an app such as Adobe. Plenty of space and a notes section are provided to jot down answers to the questions.

There are other Questions to Ask Your Doctor resources on many different breast cancer topics you may wish to download. They are a nice tool for people recently diagnosed with breast cancer, who may be too overwhelmed to know where to begin to gather information.

Treatment guidelines

Although the exact treatment for breast cancer varies from person to person, 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.

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

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

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.

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

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

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

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

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

Clinical trials for IBC

Research is ongoing to improve treatment for IBC.

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 IBC, 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 IBC, it can be hard to join a clinical trial.

Susan G. Komen® Breast Care Helpline

If you or a loved one needs information or resources about clinical trials, call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877- 465- 6636) or email clinicaltrialinfo@komen.org.

The Helpline offers 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
  • What to expect during a trial
  • Information about clinical trial resources

Se habla español.

BreastCancerTrials.org in collaboration with Susan G. Komen® offers a custom matching service to help find clinical trials that fit your health needs, including trials for people with IBC.

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.

 

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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 is known about IBC and to propose new ways to improve diagnosis and treatment.

A new research tool using a scoring system was proposed as a way to better define IBC to increase diagnostic accuracy and help guide treatment. This research tool uses information from several sources, including a doctor’s exam of the breast, a pathologist’s exam of a sample of tumor tissue and imaging.

This research tool is not yet available and needs to be validated in future studies.

Learn more about this research tool for diagnosing IBC.

The National Academy of Sciences released the report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Susan G. Komen® was one of 13 organizations that sponsored this study.

The report identified key ways to improve quality of care:

  • Ensure cancer patients understand their diagnoses so they can make informed treatment decisions with their health care providers
  • Develop a trained and coordinated workforce of cancer professionals
  • Focus on evidence-based care
  • Focus on quality measures
  • Provide accessible and affordable care for all

Read the full report.

 

SUSAN G. KOMEN® SUPPORT RESOURCES

  • If you or a loved one needs more information about breast health or breast cancer, contact the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636) or email helpline@komen.org. All calls are answered by a trained specialist or oncology social worker, Monday through Friday from 9:00 a.m. to 10:00 p.m. ET. Se habla español.
  • Komen Patient Navigators can help guide you through the health care system as you go through a breast cancer diagnosis. They can help to remove barriers to high-quality breast care. For example, they can help you with insurance, local resources, communication with health care providers and more. Call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636) or email helpline@komen.org to learn more about our Patient Navigator program, including eligibility.
  • Komen Facebook groups provide a place where those with a connection to breast cancer can share their experiences and build strong relationships with each other. Visit Facebook and search for “Komen Breast Cancer group” or “Komen Metastatic Breast Cancer group” to request to join one of our closed groups.
  • 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 03/27/23