Women Battling Highly-Aggressive Inflammatory Breast Cancer are Clinic's Strongest Advocates

Now, looking back at her 2004 honeymoon photos, Angie Elliott can see the shadow clearly.

She and her husband had spent several days at the beach and they were both suntanned. But that didn’t explain the discoloration on one side of her chest, right above her bathing-suit top.

Like too many women and far too many of their primary-care physicians, she didn’t think the swelling and tenderness in one of her breasts was serious. After all, she was only 33. She was perfectly healthy. She had no family history of breast cancer.

"Two months after our wedding, I was diagnosed with Stage 4 inflammatory breast cancer," says Ms. Elliott. "It was crazy. It’s been a crazy ride ever since.

"Everything in my life has changed."

Unlike most breast cancers, inflammatory breast cancer, or IBC, usually doesn’t begin as a lump. Instead, the breast may redden or swell or the skin may pucker. That’s why the disease is often misdiagnosed as mastitis, a common breast infection that can be treated with antibiotics.

Precious weeks or months can pass before this most lethal and aggressive form of breast cancer is accurately identified and treated. Because of frequent misdiagnosis, the disease’s aggressiveness and its resistance to treatment, only 40 percent of the women diagnosed with IBC live more than five years.

Inflammatory breast cancer, says Massimo Cristofanilli, is like an explosion.

"It comes in such a short period of time," says Dr. Cristofanilli, an associate professor at The University of Texas M. D. Anderson Cancer Center’s department of breast medical oncology. "It doesn't affect any particular age group — so it can strike anybody at any time. It can't be detected by a mammogram. Family history doesn't play a role."

Fortunately, IBC is rare, occurring in only 1-2 percent of newly diagnosed breast cancer cases in the United States. But for medical professionals like Dr. Cristofanilli, it’s a treacherous, deadly adversary that has already taken too many lives. Until physicians and scientists understand the origins of IBC, he says, they will never cure it.

Which is why UT M. D. Anderson Cancer Center established the first inflammatory breast cancer clinic in the world in October 2006 — to offer the best treatment currently available for IBC, to research the disease's causes and understand how it spreads, and to develop more effective ways of diagnosing and combating IBC. And, M. D. Anderson recently announced it will receive a $4 million appropriation from the Texas Legislature — $2 million a year over the next two years — specifically for IBC research.

"By specializing in IBC, we can get much more information on the disease from around the world," says Dr. Cristofanilli, the clinic’s co-director. "We can do more, learn more.

"Yes, I’m optimistic about it. Of course, I am. If I weren't, I wouldn't be doing this."

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"Dr. Cristofanilli's an out-of-the-box thinker," says Angie Elliott. "And that's what we need with IBC. It affects every woman differently."

Now 36, Ms. Elliott speaks with weary familiarity about IBC. She’s weathered her initial diagnosis and treatments of extensive chemotherapy, surgery, hormone therapy, and twice-daily radiation. She finished these treatments on her first wedding anniversary.

"It was strange to be looking at my wedding video that day," she recalls. "I didn't look anything like that person I used to be."

In spite of her extensive and aggressive treatments, Ms. Elliott’s disease has recurred three times in her chest lymph nodes.

"I’m in treatment right now," she says. I go for chemo every week."

One of the lessons she's learned in what she calls "cancerland" is that these recurrences — although frightening — are still local. She realizes she's fortunate her cancer hasn't metastasized to her bones or an organ like the liver or lungs. In cancerland, the horizon is dramatically tilted; what might appear to the rest of the world to be sheer bad luck can turn out to be relatively good fortune.

"When you're facing a life-threatening illness, it strips away everything that's false," Ms. Elliott says. "It shows you what's really there. And that can be hard to see. But, if you let it, it can be the most liberating experience you’ve ever had in your life."

Another IBC patient, 37-year-old Jenee Bobbora, has been luckier. Since her disease was diagnosed five years ago, she's so far remained healthy.

"Angie's cancer recurred and mine hasn't. No one knows why," says Ms. Bobbora.

One of the primary purposes of M. D. Anderson’s new center is to understand these and other puzzling differences. Who develops IBC? Which treatments are most effective — and in which cases? How does the disease originate, then metastasize? Is it caused by a virus?

Since IBC is a rare form of breast cancer, with fewer numbers for experts to study, it's been more difficult to analyze and understand. The new center allows specialists access to greater numbers of patients whose personal histories, family backgrounds, diagnoses, treatments and outcomes can be pored over and monitored for patterns. Before the center opened, M. D. Anderson treated about 30 new cases of IBC every year. In the year since the clinic opened, M. D. Anderson has seen approximately 100 women with IBC, 75 of whom were newly diagnosed patients — more than any other institution in the world, says Cristofanilli.

"What's important is that we assess patients with a multidisciplinary team from the very beginning," Dr. Cristofanilli says. "A surgeon, radiation therapist, medical oncologist and pathologist usually see a new patient within a day or two."

Together, this team of experts decides on the best course of treatment for each patient. As they learn more about IBC, Dr. Cristofanilli hopes they will one day develop a blood test that will definitively diagnose the illness.

In the meantime, he and his colleagues see new and returning patients. They publish their findings as quickly as possible to make other medical professionals and the general public aware of their progress. They draw from extensive questionnaires filled out by patients, trying to find patterns and commonalities. They observe the successes and failures of the treatments they offer, hoping to learn more.

If inflammatory breast cancer is an "explosion," as Dr. Cristofanilli puts it, he and his colleagues will one day understand, in slow and predictable motion, the very beginnings and catalysts of that explosion before its wildfire spreads through the body. Their findings, he hopes, will also lead to greater understanding of other, more common tumors that grow more slowly — but can still kill.

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Since the IBC center opened last year, some of its strongest advocates are those currently battling the disease. They are quietly furious that women with IBC continue to be misdiagnosed across the country, delaying their treatment and diminishing their chances of survival.

These are women who have been radiated, operated on, stitched up, infused with chemotherapy, scanned, observed, and tested. They have learned to live with little predictability at a very young age, and they have lost too many friends to cancer. They aren't afraid of speaking up.

"My treatment here was personal and aggressive," says Jenee Bobbora. "When you have that aggressive a cancer, you want that — these little choices that add up. I'd like to see all women get the kind of care I did."

"My life before cancer and my life after — it's like two different lives," says Angie Elliott. "I look back at old pictures and say, yeah, that's me. I think I remember that person.

"I always felt as if I spoke my mind. But now I really do. I can't think of any reason to hold back."

"You’ve met some of the incredible women who are patients here," Dr. Cristofanilli says. "So how can I fail with them? There is no way."