Inflammatory Breast Cancer

What is inflammatory breast cancer?

Inflammatory breast cancer (IBC) is an aggressive form of locally advanced 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 [138]. This means they began in the milk ducts.

About 1-5 percent of breast cancers in the U.S. are IBC [138-139]. Women with IBC tend to be diagnosed at a slightly younger age than women with other breast cancers [138-139].

African-American women are somewhat more likely than white/Caucasian women to be diagnosed with IBC [138-139]. And, women who are obese are more likely than other women to be diagnosed with IBC [138-141].

Although some social media posts suggest IBC is a new form of breast cancer, it was first identified in the 1800s [140].

Learn about treatment for IBC.  

Warning signs of IBC

Warning signs of IBC include (see images) [138-139]:

  • 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

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 provider’s recommendation, it’s always OK to get a second opinion.

Diagnosis of IBC

Challenges of diagnosing IBC

Routine mammography can miss IBC because of its rapid onset.

IBC can also be hard to see on a mammogram. It’s often spread throughout the breast or it may only show up as a sign of inflammation (such as skin thickening) [138].

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 provider’s recommendation.

Biopsy and IBC diagnosis

Although IBC may be diagnosed based on clinical appearance, 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 30 percent of women with IBC have metastases when they are diagnosed [139]. 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.

For this reason, when IBC is diagnosed, tests for metastases are done to see if it has 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 [142-148].

One study found 82 percent of women diagnosed with IBC after 2006 lived for at least 3 years after diagnosis compared to 63 percent of women diagnosed before 2006 [147].

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

Learn about treatment for non-metastatic IBC.

Learn about treatment for metastatic breast cancer.

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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 IBC

Hormone receptor status and HER2 status

Compared to non-IBC tumors, IBC tumors are more likely to be [139]:

Hormone receptor-negative breast cancers can be treated with chemotherapy, but they can’t be treated with hormone therapy.

HER2-positive breast cancers can be treated with chemotherapy and with trastuzumab (Herceptin) and other HER2-targeted therapies. So, women with HER2-positive IBC tend to have better survival than women with HER2-negative IBC [139].

Lymph node status

Most women with IBC have lymph node-positive breast cancer when they are diagnosed [139]. This means the lymph nodes in the underarm area contain cancer.

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

The more lymph nodes that contain cancer, the poorer the prognosis tends to be [149].

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 and/or HER2-targeted therapy.

Find a list of questions for 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 [6]. 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) [6]. These drugs are not given at the same time as the chemotherapy drug doxorubicin (Adriamycin) [6].

In some cases, if the tumor does not respond to neoadjuvant chemotherapy, radiation therapy may be given before surgery [6].

Learn more about neoadjuvant therapy.

Surgery and radiation therapy

Surgery for IBC is almost always a mastectomy. Some lymph nodes in the underarm area (axillary lymph nodes) are also removed.

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 prior treatment and tumor characteristics [6]:

  • 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 estrogen/progesterone receptor-positive or -negative? How does this affect my treatment plan?
  • Is my tumor HER2-positive or HER2-negative? 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?
  • 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 is my follow-up care? Which health care provider is in charge of this care?
  • What should I consider before treatment begins if I would like to have a child after being treated for breast cancer?
  • Is there a clinical trial I can join?
  • 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, Susan G. Komen® has a series of Questions to Ask Your Doctor resources that may be helpful. For example, we have a Questions to Ask Your Doctor About Breast Cancer Surgery resource and a Questions to Ask Your Doctor About Breast Reconstruction resource.

You can download and print these resources and take them with you to your next doctor appointment. There’s plenty of space to write down the answers to these questions, which you can refer to later.

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 providers 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 you may have.

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 standard 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 that you’re eligible for and fits your needs.

Once you’ve begun standard treatment for IBC, it can be difficult to join a clinical trial.

Susan G. Komen® Breast Cancer Clinical Trial Information Helpline

If you or a loved one needs information or resources about clinical trials, call our Clinical Trial Information 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

 

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 inflammatory breast cancer.

Learn more about clinical trials.

 

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Komen Perspectives

Read our perspective on clinical trials.*

 

In 2013, the Health and Medicine Division of the National Academy of Sciences (formerly the Institutes of Medicine) released a set of recommendations (below) on improving cancer care in the U.S. The report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis recommended improvements to fix shortcomings that add cost and burden to cancer care. 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 are engaged and 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, using information technology to provide better information about the potential benefits of treatments
  • 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, call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636). All calls are answered by a trained specialist or oncology social worker in English and Spanish, Monday through Friday from 9:00 a.m. to 10:00 p.m. ET. You can also email the helpline at helpline@komen.org.
  • We offer an online support community through our closed Facebook Group – Komen Breast Cancer group. The Facebook group provides a place where those with a connection to breast cancer can discuss each other’s experiences and build strong relationships to provide support to each other. Visit Facebook and search for “Komen Breast Cancer group” to request to join the closed group.
  • Komen Affiliates offer breast health education and some fund breast cancer programs through local community organizations. Your local Affiliate may also help you find breast cancer resources in your area. Find your local Affiliate.
  • 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.