Inflammatory breast cancer (IBC) is rare – and it can be fast growing and dangerous.
MD Anderson is a big organization, but it’s welcoming and it makes you feel safe. Help was always available.
IBC represents only 2% to 4% of all breast cancer cases in the United States, but due to its aggressive nature, it represents 10% of U.S. breast cancer deaths. Early and accurate inflammatory breast cancer diagnosis and personalized treatment by experts who specialize in IBC can make an important difference.
At MD Anderson, we established the world's first inflammatory breast cancer clinic especially to treat women with inflammatory breast cancer – both those who have been treated before and those who are newly diagnosed. We see some 100 cases of inflammatory breast cancer each year, more than any other center in the world.
Our experts are highly skilled in diagnosing inflammatory breast cancer. Doctors from many disciplines work in teams to customize your treatment, and they use the most-advanced techniques and technology.
Inflammatory Breast Cancer Research Gives New Hope
We're still learning about inflammatory breast cancer. Many recent studies show the best treatment often is based on each cancer's specific genetic and biological makeup.
MD Anderson has played a key role in development of many targeted and biological treatments to improve the survival of inflammatory breast cancer patients. In fact, this is one of the few places with the depth of experience and expertise to approach inflammatory breast cancer treatment this way.
In addition to treatment, the Inflammatory Breast Cancer Clinic works to:
- Gain a better understanding of what causes IBC
- Develop a blood test to diagnose IBC
- Establish imaging guidelines
- Develop novel radiation therapy techniques
Already, our experts have found that combining computed tomography (CT) with positron emission tomography (PET) scans and magnetic resonance imaging (MRI) can more quickly and accurately find where inflammatory breast cancer has spread.
Inflammatory Breast Cancer Facts
Inflammatory breast cancer is rare, and it is the most aggressive form of breast cancer. According to the American Cancer Society, it accounts for only 1% to 5% of all invasive breast cancers. However, the five-year inflammatory breast cancer survival rate is 40%, compared to nearly 90% for all other types of breast cancer combined.
Inflammatory breast cancer may also be called:
- Locally advanced breast cancer
- Breast carcinoma with dermal lymphatic invasion
- Inflammatory carcinoma of the breast
The symptoms of IBC actually are not caused by inflammation but by cancer cells blocking lymph vessels in the skin and soft tissue. Lymph is a clear fluid that contains tissue waste and cells that help fight infection. It travels through the body in vessels that are similar to veins. Lymph nodes are small, bean-shaped organs that link lymph vessels.
Some cases of inflammatory breast cancer can be passed down from one generation to the next. Genetic counseling may be right for you. Learn more about the risk to you and your family on our genetic testing page.
Did You Know?
Inflammatory Breast Cancer Symptoms
Unlike the signs of most other breast cancers, inflammatory breast cancer (IBC) symptoms progress very quickly, often within days or weeks. Inflammatory breast cancer quickly covers the breast in sheets, causing redness, tenderness and thickening of the skin. Most women with IBC never find a lump.
Inflammatory breast cancer symptoms vary from person to person. If you have symptoms, they may include:
- Breast swelling that appears suddenly with one breast much larger than the other
- Itching of the breast
- Pink, red, or dark colored area on the breast, sometimes with a dimpling of the breast skin that looks like an orange peel (called peau d’orange)
- Ridges and thickened areas of the skin on the breast
- Breast that feels warm to the touch
- Flattened or retracted nipple
- Breast pain or tenderness
These symptoms usually do not mean you have inflammatory breast cancer. However, if you notice any of these symptoms, it is important to discuss them with your doctor, since they may signal other health problems.
Some cases of inflammatory breast cancer can be passed down from one generation to the next. Genetic counseling may be right for you. Learn more about the risk to you and your family on our genetic testing page.
Diagnosis of Inflammatory Breast Cancer
Early diagnosis of inflammatory breast cancer (IBC) greatly increases your chances for successful treatment.
Since symptoms of IBC often are similar to those of breast infection (mastitis), your doctor first may prescribe antibiotics. If the symptoms do not improve or grow worse, you should have diagnostic tests as soon as possible. These may include:
- Mammogram and MRI mammography
- Ultrasound of the breast and lymph nodes
- Biopsy (removal of a small piece of tissue that is examined under a microscope) of any mass, enlarged lymph node and/or breast skin
In most cases of inflammatory breast cancer, a mammogram will not reveal a distinct breast lump but may show skin thickening or enlarged lymph nodes. If a biopsy confirms cancer cells are present, more imaging scans and possibly more biopsies may be needed to get an accurate picture of the disease.
Some cases of inflammatory breast cancer can be passed down from one generation to the next. Genetic counseling may be right for you. Learn more about the risk to you and your family on our genetic testing page.
Inflammatory Breast Cancer (IBC) Staging
Staging is a way of classifying cancer by how much disease is in the body and where it has spread when it is diagnosed. This helps the doctor plan the best way to treat the cancer. The stage of the cancer stays the same even if treatment works or the disease spreads.
Inflammatory Breast Cancer (IBC) Stages
IBC is considered Stage IIIB or IIIC upon diagnosis. If the cancer has spread to distant areas (metastasized) such the liver, lung or brain, it is a Stage IV cancer.
Inflammatory Breast Cancer Treatment
It’s essential to establish a comprehensive and personalized treatment plan for inflammatory breast cancer (IBC) as early as possible. For this reason, MD Anderson’s team approach, which brings together experts from many specialties, is extremely important.
As a patient in the Inflammatory Breast Cancer Clinic, you are the focus of some of the most talented and experienced physicians in the world. They communicate and collaborate often about your treatment.
And MD Anderson is leading the way toward newer and more effective treatments for inflammatory breast cancer. Targeted therapies, one of the most exciting possibilities on the horizon, offer new hope for some patients. Many of the newest, most successful treatments, including targeted therapies, were or are being developed at MD Anderson.
Our Inflammatory Breast Cancer Treatments
If you are diagnosed with IBC, your doctor will discuss the best options to treat it. This depends on several factors. Your treatment for inflammatory breast cancer will be customized to your needs. One or more of the following therapies may be recommended to treat the cancer or help relieve symptoms.
Chemotherapy
The goal of chemotherapy is to eliminate or reduce inflammatory breast cancer before surgery. Using chemotherapy before surgery is call neoadjuvant or primary chemotherapy. MD Anderson offers the most up-to-date and effective chemotherapy options. Women with IBC usually receive a combination of at least two drugs. Chemotherapy should be started as soon as possible to prevent the spread of the disease.
Surgery
Because inflammatory breast cancer usually does not have a distinctive breast lump, surgery to remove just the cancerous tissue (lumpectomy) is not possible. A complete mastectomy (removal of the entire breast) usually is needed to remove all the affected areas.
The surgeon looks at lymph nodes close to the breast during surgery, and nearby lymph nodes are removed in most cases. Breast reconstruction usually is not recommended initially after surgery for IBC. It is best to wait until therapy has been completed and there is no evidence of disease.
Like all surgeries, breast cancer surgery is most successful when performed by a specialist with a great deal of experience in the particular procedure. MD Anderson’s breast surgeons are among the most skilled and renowned in the world. They perform a large number of surgeries for inflammatory breast cancer each year, using the most-advanced techniques.
Radiation Therapy
After chemotherapy and surgery, radiation therapy may be performed on the chest wall and lymph nodes. Radiation helps control disease and reduce the risk of it coming back. It also may be used to treat IBC that has spread, to manage pain or to help you feel better if you cannot have surgery.
New radiation therapy techniques and remarkable skill allow MD Anderson doctors to target tumors more precisely, delivering the maximum amount of radiation with the least damage to healthy cells.
Targeted Therapies
Targeted therapies use the cancer’s specific genetic or biological makeup to help the body attack the disease. MD Anderson is among a select group of cancer centers in the nation that offer targeted therapies for inflammatory breast cancer.
Hormone Therapy
If inflammatory breast cancer is hormone-receptor positive (estrogen receptor [ER] or progesterone receptor [PR]), you may need hormone therapy. These oral medicines stop the body from making or activating estrogen and progesterone. Doctors choose the best type of hormone therapy depending on your menopause status.
After being greeted by the breast cancer survivors who volunteer in MD Anderson’s Breast Center on my first day as a patient, I always knew I wanted to give back in that same way one day.
Those beautiful women let me know that a breast cancer diagnosis wasn’t going to be an insurmountable obstacle — because they had all been through one, too, and survived. They were clearly thriving, so that provided tangible evidence it was possible.
Just to have another person saying, “Look. I’ve been through all of this myself, and you’ll get through it, too,” was so powerful. That was a message I really needed to hear, as I’d just been diagnosed with stage IIIc inflammatory breast cancer, a rare and particularly aggressive form of the disease.
My inflammatory breast cancer diagnosis
My gynecologist had dismissed the pain and swelling in my left breast as a reaction to birth control pills. He refused to perform any type of scan, even after I specifically requested one. That didn’t sit right with me, so I saw another doctor. Thinking I had an infection, he prescribed an antibiotic and said to come back for a biopsy if my symptoms hadn’t resolved in a couple of weeks.
Getting conflicting information from two different doctors isn’t very reassuring, so I called MD Anderson. It was only after doctors there conducted their own tests that I learned the truth: at age 32, I had inflammatory breast cancer.
Why the right diagnosis matters
At MD Anderson, my inflammatory breast cancer treatment consisted of six months of outpatient chemotherapy, followed by a double mastectomy and six weeks of radiation therapy. I also took a drug called tamoxifen in pill form for 10 years. And I’ve shown no evidence of disease since 2003.
But if my cancer had been just a little more advanced, it would have been considered stage IV, and my care would have been palliative instead of curative. That’s why getting the right diagnosis is so important. Luckily, right around the time of my diagnosis, Dr. Kelly Hunt and some of her colleagues at MD Anderson had just published a study that showed that chemotherapy, radiation and surgery could still result in a cure, even for women with stage IIIc inflammatory breast cancer. And my doctor insisted that my cancer was at stage IIIc, not IV.
Why I opted not to get breast implants
That distinction ended up making all the difference, so I am beyond grateful that I was treated at MD Anderson. It felt like everyone there wanted me to be cured just as badly as I did. Even my radiation oncologist, Dr. Tom Buchholz — now the medical director at Scripps MD Anderson Cancer Center in San Diego — said he subscribed to the “big hammer” theory of cancer treatment: you grab the biggest hammer you can and hit it hard the first time.
Reconstructive surgery would have required my doctors to use some of the same skin and tissue affected by the cancer, risking a recurrence. That’s why I opted not to get breast implants after my mastectomy.
Why I volunteer with myCancerConnection
Side effects from cancer treatment can be very unpleasant, so having the support of other women is really important. Talk between breast cancer survivors becomes intimate very quickly, and MD Anderson made it easy to connect with women I’d have an easy time relating to, either because we were the same age, had been diagnosed with the same type of cancer at the same stage or were from the same part of the country.
The women I met inspired me and helped me through treatment, and I wanted to help other women, too. So, I eagerly signed up to volunteer with myCancerConnection, MD Anderson’s one-on-one cancer support community of patients, survivors and caregivers who have been there.
I am honored to meet with other women who’ve just been diagnosed with breast cancer, to let them know that MD Anderson has an entire community of people available to support them and to share my own story. After all, with the help of the women I’ve met and my care team at MD Anderson, I’m living proof that it’s possible to get through this.
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