Rare Breast Cancer Has Unusual Symptoms

Rare Breast Cancer Has Unusual Symptoms

By Darcy De Leon

Kathy Sorensen woke up one morning last winter with a faint, purple bruise on her breast. Weeks before her wedding, Morgan Welch noticed that one of her breasts appeared to have a mosquito bite.

Neither had any idea these were signs of a rare, aggressive form of breast cancer - a disease that often spreads before women realize it.

M. D. Anderson experts say this type, called inflammatory breast cancer (IBC), represents only 1% to 2% of all breast cancers, but is extremely dangerous. Because it is difficult to identify, it often is diagnosed late, after the cancer has spread to other parts of the body. As a result, less than 50% of patients survive five years.

For that reason, M. D. Anderson experts say, increased public awareness of the disease is critical.

Symptoms seem innocent

Having survived cancer in her right breast 10 years earlier, Sorensen, 56, thought she knew a lot about the disease. When she noticed the bruise on her left breast, she didn't suspect cancer.

As someone who sells telephone book advertising and travels 50% of the time, Sorensen is accustomed to lugging around heavy boxes. The bruise could have been caused during work, she thought.

But within two weeks it had grown, and her breast felt hot and swollen. Then she felt a lump, a very rare occurrence for IBC patients. Unlike most breast cancers, IBC often appears throughout the breast tissue, meaning there is usually no telltale lump.

Most of the time a mammogram or ultrasound does not detect the cancer. Sorensen was extremely lucky that both tests did.

"The tumor was 2.1 centimeters, which is very unusual," Sorensen says. "They said I was one of the lucky IBC patients because I had a lump."

IBC treatment is swift and lengthy

An ultrasound and needle biopsy also identified cancer in three lymph nodes. "I was told I needed to start treatment immediately," she says. "They said this stuff goes through your body like wildfire."

Sorensen began taking an experimental drug followed by standard chemotherapy. In eight weeks, her tumor shrunk in half, but it began to grow again.

She had a mastectomy, which included the removal of 27 lymph nodes. Fortunately, none were cancerous. However, because IBC has a high recurrence rate, Sorensen soon will be undergoing more chemotherapy, which will be followed by radiation therapy. She remains positive about her prognosis and stays close to family and friends but knows the disease is unpredictable.

Patient diagnosed after cancer spread

Welch passed away from IBC in January after various treatments failed. The 24-year-old Florida patient was diagnosed after antibiotics did nothing to alleviate symptoms she thought were caused by a breast infection.

IBC is easily misdiagnosed as a rash or infection because the breast can appear large, red (or pink), bruised, coarse or infected. It can also feel hard or hot.

"When Morgan arrived here, her cancer already was metastatic," says IBC specialist Massimo Cristofanilli, M.D., an associate professor in M. D. Anderson's Department of Breast Medical Oncology. "She already had a tumor that had spread to the bones, a painful bone mass. It was quite a challenging tumor to start with."

Welch received chemotherapy and improved enough to undergo surgery to remove the tumor. Doctors hoped she would improve with a combination of chemotherapy, radiation and hormonal treatment. It worked for a while; then the cancer progressed.

"We treated her a few more months using a variety of agents, but they did not work," Cristofanilli says. "Nothing seemed to work for a long time. It was very hard."

Patient's battle drives oncologist

Welch's difficult fight motivates Cristofanilli in his quest for better IBC treatments. It is the reason he carries her wedding picture in his shirt pocket each day.

"It reminds me to keep working so that this does not happen again," he says. "She was very young and full of hope."

Oncologist pools resources and raises awareness

Cristofanilli says a joint effort among IBC specialists nationwide is needed to pool enough tissue samples to properly study this rare disease. He is working toward that goal through contacts he has made in a multi-center clinical trial studying new IBC treatments.

In the meantime, Cristofanilli is doing what he can to raise public awareness.

In July, he and a staff of breast medical oncology nurses from M. D. Anderson partnered with Houston's KPRC television station to answer questions about IBC during a live televised phone bank event. During the two-hour event, more than 500 people (including husbands of women with IBC symptoms) called the station to learn more about the disease.

Several callers were referred to M. D. Anderson for further testing. In most cases, cancer was ruled out, Cristofanilli says. At least two women have been diagnosed with the rare disease, he says.

Since the televised event, women have continued to contact the cancer center for more information and appointments regarding suspicious symptoms. The center also has received a steady stream of referrals from patients through IBC groups.