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Email: "‘Big, Bad, Ugly Cancer’"
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Last spring, Susan Niebur was a breastfeeding mother who thought she was having another bout with a common breast infection called mastitis. Her second son, born in January, refused to nurse on her right breast, and that side had become swollen, red and sore.

When a 10-day course of antibiotics had no effect, the Silver Spring, Md., resident did some research online. Her doctor sent her to Georgetown University’s Lombardi Cancer Center, where a skin biopsy revealed the worst.

What she thought was mastitis turned out to be inflammatory breast cancer, a highly aggressive form of breast cancer that attacks the lymph vessels in the skin and then moves onto the axillary lymph nodes under the armpits before spreading to organs throughout the body.

When it is discovered, inflammatory breast cancer almost always is at the advanced stage — three or four, according to Dr. Nadeem Ikhlaque, oncologist with the Ohio Valley Medical Center Cancer Center. The five-year survival rate is 20 percent to 40 percent.

“Because people thought cancers do not present these symptoms, it can be very easily misdiagnosed, so that by the time of actual diagnosis it is already involving the skin and the nipple and the axillary lymph nodes,” Ikhlaque said. Typically, women are diagnosed in their 40s and 50s, and mammograms often do not detect the disease. He has seen two cases since he started practicing in the Ohio Valley about a year ago.

Dr. Jondavid Pollock, radiation oncologist at Wheeling Hospital’s Schiffler Cancer Center for seven years, said the center sees two to three cases of inflammatory breast cancer a year.

Niebur, who is 34 and a scientist turned stay-at-home mom, said she had never heard of inflammatory breast cancer and thought breast cancer always came in the form of a lump. Ginny Mason, a nurse, also associated breast cancer with lumps or tumors when she was diagnosed at age 42.

These women have now dedicated much of their free time to educating the public about the symptoms of inflammatory breast cancer so women and health professionals can catch it as early as possible. Niebur has a blog called Toddler Planet (www.toddlerplanet.com) where she brings awareness by chronicling her ongoing struggles and successes. (Her aunt, Linda Lawrence of Martins Ferry, brought this reporter’s attention to her niece’s blog to help spread the word.)

Mason is the executive director of the Inflammatory Breast Cancer Research Foundation, which was founded in 1999 by Owen Johnson, the widower of an inflammatory breast cancer victim, to help find the cause of the disease. The web site is www.ibcresearch.org.

According to the National Cancer Institute, symptoms of inflammatory breast cancer include: swelling, red or pink skin, rash, dimpled skin texture like that of an orange, hotness, nipple discharge, inverted or flattened nipples, swollen lymph nodes under armpit.

“If you know about it and know what to look for and something starts to look funny, ... call your (obstetrician) right away and get an early appointment and use the words: ‘Can we rule out inflammatory breast cancer?’

“Because the earlier you catch it, the more chance you have of actually shrinking it,” Niebur said.

Ikhlaque agreed. He said if one course of antibiotics does not clear up a patient’s breast infection, her doctor ideally should order testing, such as a mammogram, ultrasound and/or MRI, to determine if cancer is present.

“The persistence of these symptoms is a red flag. ... Picking up on this very aggressive form of cancer early is very important,” he said.

Pollock said when he first learned about this type of cancer, he thought the diagnosis at such an advanced stage was because patients had ignored or denied an abnormality in the breast.

“The reality is that you can get (the disease) developing over one or two months,” Pollock said.

Treatment of inflammatory breast cancer starts with shrinking the cancer with six months of intensive chemotherapy. Before researchers discovered the need for pre-surgical chemo, also known as neo-adjuvant chemo, the five-year survival rate was only 2 percent, Niebur said.

A lumpectomy is not an option.

“We looked at doing lumpectomies at (the National Cancer Institute) where I trained, and they found it to be ineffective,” Pollock said.

A modified radical mastectomy must be performed following chemotherapy, after which, depending on the amount and type of residual cancer cells, either additional chemo or radiation therapy is prescribed. The recurrence rate is 90 percent.

“Yes, this is a big, bad, ugly cancer,” Niebur said.

The mother of 3-year-old and 8-month-old boys is more than halfway through her chemo, which has knocked her flat for days at a time and at times deprived her of the simple joys of rocking her babies to sleep or reading them a bedtime story. It has, however, helped her learn to appreciate every moment she has with them.

“I totally take pleasure in all the little things,” she replied. “I appreciate every giggle, every hug. That’s the way life should be lived anyway,” she said.

Against the odds, Mason is a 13-year survivor of inflammatory breast cancer. She believes she has survived for a reason and wants to make the most of her days by sharing her story, spreading awareness and raising money for research through the foundation.

“I was told I had a 3 percent chance of being alive in five years, and I said, ‘Somebody’s got to be in the 3 percent,’” said Mason, who lives in northern Indiana. A licensed practical nurse at the time, she finished her treatment, went back to work and also studied to become a registered nurse. Achieving that goal, she went on to get a bachelor’s degree in nursing.

Now she works practically around the clock, answering e-mails and phone calls from patients and family members, speaking to groups around the country and helping fund research.

She said it is important for newly diagnosed patients not to lose hope.

“I tell people who are first diagnosed, don’t look at the statistics now. ... Your case is your case. You are not a statistic. There is no way anyone knows what your outcome is going to be.

“If I had thrown up my hands and said, ‘What’s the point?’ and not bothered to get treatment, I would have died, that’s a given.”

Mason recommends patients find a treatment team with whom they can work, get involved in their treatment plans and “just move forward.”

“None of us knows how much time we have. The way I look at it, every day above ground is a good one.”

 

 

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