9 questions about inflammatory breast cancer, answered

Inflammatory breast cancer (IBC) accounts for only about 2-4% of new breast cancer diagnoses each year. But because it’s so aggressive, it makes up a disproportionate number of breast cancer-related deaths annually, even though it’s rare.

“IBC has been called both ’the silent killer’ and ‘the master metastasizer,’ because it’s often misdiagnosed and it spreads so quickly,” explains Wendy Woodward, M.D., Ph.D.  “That’s why speed is so critical in both the diagnosis and treatment of inflammatory breast cancer.”

We spoke with Woodward to learn more. Here’s what she wants people to know about inflammatory breast cancer.

What are the symptoms of inflammatory breast cancer, and how do they differ from other types?

Classic inflammatory breast cancer symptoms develop fairly quickly (3 months or less), and can include swollen breasts, red skin and nipple inversion. Unlike other types of breast cancer, inflammatory breast cancer doesn’t usually show up as a lump or appear in a screening mammogram, which is why it’s often misdiagnosed.

Is there a genetic component to this disease? Are any screening tests available?

Unfortunately, no. There’s no inheritable component of inflammatory breast cancer that’s useful for genetic testing today. And because its symptoms can come on so quickly — often between mammograms — scan-based screening is largely ineffective for this disease. Its widespread distribution throughout the breast tissue (often, without a lump you can feel) can also make mammograms appear negative, even when there are obvious changes to the skin.

Are some people more likely to develop inflammatory breast cancer than others?

Yes. IBC tends to occur most in two groups: post-menopausal women and young mothers. In the latter, its development seems to be influenced by normal changes that take place in breast tissue after childbirth (from dormancy to active milk production and back again).

Why is getting an accurate diagnosis so important with inflammatory breast cancer?

Many women report being misdiagnosed with infections or mastitis (inflammation of the breast tissue) for months before learning they actually have inflammatory breast cancer. So, the first issue is getting a breast cancer diagnosis, so you can start treatment.

The second issue is making sure treatment decisions are specific to inflammatory breast cancer. Many options are available if the disease recurs, but the best chance at a cure is to prevent recurrence altogether with the most effective combination of chemotherapy, surgery and radiation therapy up front.

How is inflammatory breast cancer typically treated?

Chemotherapy has to come first, in order to get the best results from surgery. After chemotherapy, inflammatory breast cancer patients typically undergo a mastectomy, a surgery that removes all of the cancerous tissue involved. That includes any skin that’s affected, so leaving some behind in order to place expanders or do immediate reconstruction is not appropriate. Finally, radiation therapy will be used to target larger areas; in some cases, higher doses of radiation must be used.

What should patients look for when deciding where to seek treatment?

Because this disease is so aggressive and rare, where you go first for your inflammatory breast cancer treatment makes a big difference. To ensure you get an accurate diagnosis and the correct treatment from the beginning, it’s important to go to a large, comprehensive cancer center like MD Anderson.

Here, we offer patients two important benefits: specialized clinical trials and high-volume experience. Our physicians see multiple patients with inflammatory breast cancer every week, so we are the experts. And our results demonstrate that. We have some of the best published results in the country for treating inflammatory breast cancer.

Our multidisciplinary approach enables patients to visit with all three types of specialists (breast oncology, radiation oncology and surgical oncology) quickly. They work together closely and in collaboration with our pathologists, radiologists and other specialists to provide the best treatment possible for each patient.

That means patients can find everything they need right here. And that doesn’t just include your clinical care. It also includes support services such as social worker counselors, support groups and even one-on-one support from other survivors.

What clinical trials are available right now? Any new developments on the horizon?

A number of clinical trials are available especially for patients with inflammatory breast cancer, including several that pair targeted therapy with radiation therapy or chemotherapy.

One trial developed here at MD Anderson combines panitumumab — a targeted therapy drug normally used to treat colorectal cancer — with chemotherapy. This drug had some very high complete response rates in patients with triple-negative inflammatory breast cancer during its first study.

We’re also working to understand how changes in normal breast tissue influence the disease pattern, so we can generate new models to study it and identify new targets. More detailed genetics and immune profiling data are becoming available, too, opening the door to new directions as we work to understand and target this disease.

Has the outlook for patients with inflammatory breast cancer changed much over the past few years?

Yes. Patients with inflammatory breast cancer are living longer and seeing fewer misdiagnoses than they did a decade ago. We’ve also been able to safely reduce radiation doses in some patients who respond exceptionally well to chemotherapy.

What’s the one thing you want people to know about inflammatory breast cancer?

There is hope. We are making incremental advances, without question.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.