Inflammatory Breast Cancer
Read stories about women living with inflammatory breast cancer:
- Doctors Acted Quickly on My Inflammatory Breast Cancer and I Feel Fortunate
- An 11-Month Journey to Learning I Had Inflammatory Breast Cancer
- I Feel Lucky My Doctor Knew about Inflammatory Breast Cancer
What is inflammatory breast cancer?
Inflammatory breast cancer (also called IBC) is an aggressive breast cancer.
The main warning signs 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 [174]. This means they began in the milk ducts.
About 1% to 5% of breast cancers in the U.S. are inflammatory breast cancers [174-175]. Women with inflammatory breast cancer tend to be diagnosed at a slightly younger age than women with other breast cancers [174-175].
Some women are more likely than others be diagnosed with inflammatory breast cancer, including [174-178]:
- 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 [176].
Learn about treatment for inflammatory breast cancer.
Warning signs of inflammatory breast cancer
Warning signs of inflammatory breast cancer include [174-175]:
- 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
In women of color with deeper skin tones, redness of the breast skin may be more difficult to see.
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 [175].
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 [175]. 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 inflammatory breast cancer is diagnosed, tests for metastases are done to see if it’s spread to other parts of the body.
Metastatic breast cancer is also called stage IV or advanced breast cancer.
Learn about treatment for metastatic breast cancer.
Survival after 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 survival [178-183].
With modern treatment, some studies estimate 5-year survival with non-metastatic inflammatory breast cancer to be about 50% to 70%, and median survival time to be about 8 years [181-183].
Survival, 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.
For a summary of research studies on survival in women with non-metastatic inflammatory breast cancer, visit the Breast Cancer Research Studies section. |
Factors that affect survival for inflammatory breast cancer
Hormone receptor status and HER2 status
Some inflammatory breast cancers tend to have worse survival than others. These include inflammatory breast cancers that are [175,181]:
- HER2-negative and hormone receptor-positive
- HER2-negative and hormone receptor-negative (triple negative inflammatory breast cancers)
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 [174-175,181].
Lymph node status
Most women with inflammatory breast cancer have lymph node-positive breast cancer when they are diagnosed [174-175]. This means the axillary lymph nodes (the lymph nodes in the underarm area) contain cancer.
Lymph node-positive breast cancers tend to have poorer survival than lymph node-negative cancers (the lymph nodes don’t contain cancer) [184].
The more lymph nodes that contain cancer, the poorer survival tends to be [184].
Learn more about factors that affect treatment and survival.
Treatment for non-metastatic inflammatory breast cancer
Inflammatory breast cancer is treated with a combination of [10]:
Treatment may also include one or more of the following [10]:
- Hormone therapy, with or without CDK4/6 inhibitor therapy
- HER2-targeted therapy
- Immunotherapy
- PARP inhibitor therapy
Learn more about these breast cancer treatments.
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 to make it easier for surgery to remove all the cancer.
When possible, all the chemotherapy planned to treat inflammatory breast cancer is given before surgery [10]. 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) [10]. These drugs are not given at the same time as the chemotherapy drug doxorubicin (Adriamycin) [10].
In some cases, if the tumor does not respond to neoadjuvant chemotherapy, radiation therapy may be given before surgery [10].
Learn more about neoadjuvant therapy.
Surgery and radiation therapy
Surgery for inflammatory breast cancer is almost always a mastectomy with an axillary lymph node dissection. An axillary lymph node dissection removes some axillary lymph nodes (lymph nodes in the underarm area).
Surgery is followed by radiation therapy. Almost all women with inflammatory breast cancer will need radiation therapy.
Having axillary lymph nodes removed and getting radiation therapy to the axillary lymph nodes both increase the risk of lymphedema [6].
Learn more about lymphedema including signs and symptoms, screening and treatment.
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 allows the radiation therapy to 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 [10]:
- 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.
For a summary of research studies on survival in women with inflammatory breast cancer, visit the Breast Cancer Research Studies section. | |
For a summary of research studies on neoadjuvant chemotherapy and breast cancer treatment, visit the Breast Cancer Research Studies section. | |
For a summary of research studies on radiation therapy following mastectomy in women with invasive breast cancer, visit the Breast Cancer Research Studies section. | |
For a summary of research studies on trastuzumab and overall survival in breast cancer, visit the Breast Cancer Research Studies section. |
Questions you may want to ask your health care provider
- Will a sentinel lymph 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 inflammatory 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 team.
If you’ve been diagnosed with inflammatory breast cancer 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 take 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 make sure high-quality care is given. 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 follow.
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 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. This is called shared decision-making.
Learn more about factors that affect treatment options.
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:
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 more about clinical trials.
Lajos Pusztai, M.D., D. Phil.
Komen Scholar
“Clinical trials provide a chance to receive tomorrow’s therapies today.”
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, pathologic 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 further refined to increase diagnostic accuracy, guide treatment decisions and inclusion in clinical trials, and to 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 |
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*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 08/15/24
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