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How Siteman approaches inflammatory breast cancer treatment

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Washington University School of Medicine
Cynthia Ma, MD, PhD, and Ron Bose, MD, PhD, have collaborated on large grant supporting breast cancer research from the... Cynthia Ma, MD, PhD, and Ron Bose, MD, PhD, have collaborated on large grant supporting breast cancer research from the Department of Defense. MATT MILLER/WASHINGTON UNIVERSITY SCHOOL OF MEDICINE

At Siteman, our breast cancer experts use the most advanced technologies and surgical techniques to give inflammatory breast cancer (IBC) patients the best possible chances for a positive outcome.

What is inflammatory breast cancer?

Inflammatory breast cancer is a highly aggressive disease that progresses very quickly, often over the course of days or weeks. Cancer cells block lymph vessels in the skin of the breast. As a result, the breast begins to look swollen and red. Many times, this may appear like an infection. In contrast to other breast cancers, IBC often does not cause a lump and may not show up on a mammogram. For these reasons, IBC can be much harder to diagnose than other breast cancers.

Lumps are not typically an early symptom of IBC because the cancer cells tend to grow in layers. These layers, or “sheets” of tissue, are sometimes called “nests.” This is different from most breast cancers, as the cancer cells may not create a mass of tissue (or tumor).

Afraid of your inflammatory breast cancer diagnosis? You’re not alone

Receiving an inflammatory breast cancer diagnosis can be very frightening. Some common fears and concerns of IBC patients include:

  • Emotional and physical pain
  • Fear of treatment
  • Suffering of loved ones
  • Loss of the breast
  • Fear of recurrence
  • Dying

As an IBC patient at Siteman, you can take comfort in knowing that you will be in the hands of compassionate and experienced providers who will support you throughout your cancer journey.

We offer many patient and family services to help you and your loved ones cope with the difficulties of cancer treatment. These services include free psychological services for patients and immediate family members, spiritual care, interpreter services, social workers, financial and logistical support, palliative care, advanced pain management, registered dietitians, genetic testing and counseling, support groups and a survivorship program.

Risk factors for inflammatory breast cancer

While inflammatory breast cancer is rare, there are certain factors that increase your risk. These include:

  • Gender: though men can develop IBC, it is much more common in women.
  • Age: IBC is more common in people under 60.
  • Race: Black women are at greater risk for IBC than white women.
  • Weight: IBC is more common in overweight or obese women than it is in women of a normal weight.

Survival rates for inflammatory breast cancer

Inflammatory breast cancer progresses very quickly. Since the cancer cells have grown into the skin of the breast, IBC is already at stage 3 at the time of diagnosis. Five-year survival rates vary based on the cancer’s stage, location and the type of treatment you receive. According to the American Cancer Society (ACS), the five-year survival rates for inflammatory breast cancer are:

  • Overall IBC: 41 percent
  • Cancer has spread to nearby lymph nodes: 56 percent
  • Cancer has spread to other organs: 19 percent

While these statistics may seem daunting, keep in mind that survival rate statistics for IBC are an estimate. Your experience as an IBC patient is unique, and statistics reflect outcomes of previous patients and past treatments. Speak with your provider about your specific situation and what your prognosis looks like.

Although inflammatory breast cancer is rare, quick diagnosis is key

Inflammatory breast cancer is rare. According to the ACS, IBC accounts for only 1 to 5 percent of all breast cancers. Because IBC often does not cause a lump, may not show up on a mammogram and can easily be mistaken for an infection, it can be very difficult to diagnose.

Be sure to contact your provider if you experience any of the following symptoms for more than a week:

  • Rapid changes in the appearance of one breast
  • Change in the size, shape or heaviness of one breast
  • Swelling or heaviness in one breast
  • Red, purple or pink discoloration or a bruised appearance in one breast
  • Unusual warmth in one breast
  • Dimpling similar to an orange peel on the skin of one breast
  • Enlarged lymph nodes under the arm or near the collarbone
  • Tenderness, pain or itchiness in one breast
  • A retracted or inverted nipple

If you are experiencing any of these symptoms, it doesn’t mean that you have IBC. Still, you’ll want to follow up with your provider to ensure that you’re in good breast health.

The Siteman approach

With expert physicians, skilled support staff and the latest technology, we give our IBC patients the comprehensive care they need to fight their cancer. In addition to clinical care, our researchers are making strides in developing ways to use the body’s immune system to fight breast cancer, including vaccines.

Siteman conducts more clinical trials than any other cancer center in the region. Several new drugs have emerged from our clinical studies that have had a promising impact on metastatic breast cancer, and more innovative breast cancer drugs continue to be developed.

IBC treatment options at Siteman

As an IBC patient, making treatment decisions can be stressful. At Siteman, our exceptional providers offer a range of treatment options for inflammatory breast cancer:

  • Chemotherapy
  • Mastectomy
  • Post-mastectomy radiation

Because this cancer doesn’t form a distinct lump, a lumpectomy isn’t possible.

Chemotherapy

IBC patients receive chemotherapy before surgery. First, neoadjuvant (before surgery) chemotherapy shrinks the cancer prior to surgery. Then, if surgery reveals that the cancer has spread to the lymph nodes – or if the cancer has a high risk of returning – your treatment team may recommend following up with adjuvant (after surgery) chemotherapy.

Chemotherapy alone can cause patients to lose their hair, and the drugs used to treat breast cancer are even more likely to provoke hair loss. At Siteman, we offer a novel technique called scalp cooling that can minimize or even prevent hair loss due to breast cancer treatment.

Surgery

After chemotherapy, you may need to have an operation to remove the cancerous breast and some of the surrounding lymph nodes. This operation typically includes:

  • Mastectomy: a total mastectomy involves removing the entire breast.
  • Surgery to remove nearby lymph nodes: your surgeon will remove lymph nodes under the arm and near the cancerous breast.

Some patients elect to get a prophylactic mastectomy to remove the other, cancer-free breast. This decision is very personal and should be discussed with your treatment team. While this preventive measure does not reduce the risk of death, it does reduce the risk of developing a new primary breast cancer.

Radiation therapy

Radiation therapy does not look the same for every type and stage of breast cancer. For IBC patients, radiation is given to areas that may contain microscopic breast cancer cells, including:

  • Lymph nodes that drain the breast region
  • The chest wall, which includes the skin and soft tissue on the front of the chest that was nearby the breast prior to mastectomy

This type of treatment is provided by an external beam radiation therapy machine. It usually lasts from 4 to 6 and a half weeks.

Siteman also offers hyperthermia treatment, an innovative therapy offered nowhere else in the St. Louis region. This therapy involves heating superficial tissue to a temperature of 104 to 110 degrees Farenheit to either kill cancer cells or make them more sensitive to radiation. Hyperthermia causes damage to cancer cells while sparing healthy cells.

Hormone therapy

This type of therapy is typically started either during or after adjuvant radiation therapy. There are several hormone therapy options for breast cancer patients:

  • Tamoxifen: blocks estrogen from binding to breast cancer cells
  • Aromatase inhibitors (Ais): decrease the amount of estrogen made by the body
  • Ovarian suppression: the use of drugs or surgery to stop the ovaries from producing estrogen

It is important to note that hormone therapy only works for inflammatory breast cancers that are hormone receptor-positive. Most inflammatory breast cancers are hormone receptor-negative. As a result, they can’t be treated with hormone therapies that interfere with the growth of cancer cells fueled by estrogen.

Clinical trials

Clinical trials are used for all types and stages of inflammatory breast cancer. If standard treatments haven’t been successful, patients may then choose to take part in a clinical trial in the hopes of a better outcome. If you are an IBC patient interested in participating in a specific clinical trial, please speak with your physician about the trial.

The choice to participate in a clinical trial is highly personal, and one you should make after speaking with your provider about potential benefits and risks. While most health insurance plans cover clinical trials, make sure to first verify your coverage with your insurance carrier.

Our care team

The breast cancer specialist team at Siteman comprises outstanding Washington University medical oncologists, radiation oncologists, surgeons, radiologists, geneticists and psychologists. The diverse expertise of our specialists is what allows them to create personalized treatment plans for all inflammatory breast cancer patients.

Patient support

In addition to providing unmatched clinical care, Siteman provides compassionate support to help all IBC patients cope with the emotional and physical tolls of cancer treatment.

  • Nurses: specially trained to help breast cancer patients cope with symptoms, treatment and side effects.
  • Nurse navigators: clinically trained to provide guidance and answer questions at any point.
  • Registered dietitians: provide guidance about nutrition and meals or snacks that will be good for you as you move through treatment.
  • Psychologists: provide free mental health care for you and your family members.
  • Palliative care specialists: provides support to help you manage pain and other side effects of your treatments.

You’ve been diagnosed with inflammatory breast cancer. Now what?

If you have received an inflammatory breast cancer diagnosis, you may be experiencing a wave of emotions including fear, anger and sadness. Siteman providers are here to support you every step of the way throughout your cancer journey. With our exceptional physicians, psychological services and survivorship care, we are committed to caring for your body, mind and wellness, even after treatment ends.

If you are experiencing symptoms of inflammatory breast cancer and want to make an appointment, please contact Siteman’s Joanne Knight Breast Health Center at 314-454-7500. The Center has been designated a Breast Imaging Center of Excellence by the American Board of Radiology and offers a full array of all-digital breast imaging services. If you have already received an inflammatory breast cancer diagnosis and you wish to schedule a follow-up appointment with a breast cancer specialist at Siteman, please call 800-600-3606.