Sept. 18, 2006 -- For several years, stories have appeared on the Internet about a breast cancer that "your doctor may miss." The stories, which were featured on KOMO-TV in Seattle, have generated more than 10 million hits on KOMO's Web site, according to the station.
Called inflammatory breast cancer, its symptoms differ from those of the more typical form of breast cancer, which means it's sometimes missed or misdiagnosed in many women, although cancer specialists have become aware of it.
The stories have obviously struck an emotional cord with women, and cancer specialists say they have been bombarded with questions.
"I have been interviewed by local Fox TV and several radio stations regarding this one news story and the reaction to it on the Internet," said Dr. Anthony Elais at the University of Colorado.
Lillie Shockney, a nurse at the Avon Foundation Breast Center at Johns Hopkins, has received a similar response from women.
"I receive at least 10 to 15 e-mails a day ... frightened they may have this type of cancer," she said.
Breast cancer experts, however, say that these stories needlessly frighten women, who may see only one story or just get partial information.
"This is based on an Internet rumor that has been going around for years," said Dr. Susan Love, director of the UCLA Breast Center and author of several books on breast cancer.
Cancer That Masquerades as Infection
For women, breast cancer is frightening enough, but because the symptoms of inflammatory breast cancer differ from those of typical breast cancer, women with this form of the disease might wait to go to their doctor, and many times it is not diagnosed until the cancer has spread.
Its symptoms can often be mistaken for common, benign breast problems.
The cancer is characterized by thickening and redness of the breast, and the cancer grows more rapidly in younger women than other forms of the disease. The thickening of the skin of the breast is often said to look like the skin of an orange.
About 50 percent of women with inflammatory breast cancer will not have an associated breast lump.
Other symptoms may include dimpling of the breast, changes in shape, nipple discharge, itching and retraction of the nipple.
By the time symptoms are recognized, one-third of cancers will have spread throughout the body. Of people diagnosed with inflammatory breast cancer, only 40 percent will be alive in five years.
No Mystery to Doctors
Although inflammatory breast cancer is rare, accounting for only 1 percent to 4 percent of breast cancers in the United States, "it should be emphasized that this is not a new phenomenon and is not unknown to medical oncologists," said Dr. Ruth Oratz at the New York University School of Medicine.
Dr. Lynn Dyess, a surgeon at the University of South Alabama, agreed.
"I see numerous cases each year," she said.
Experts do acknowledge that some family doctors may not be familiar with this type of cancer, and thus, may consider other diagnoses first.
"Inflammatory breast cancer can be missed when it is early because of its uncommon nature and mimicry of infection," said Dr. Lou Fehrenbacher at Kaiser Permanente Medical Center. "Any breast infection that requires antibiotics should be followed very closely for resolution and for the consideration of inflammatory breast cancer if it does not resolve."
The Mayo Clinic Web site suggests that if a woman is being treated for a breast infection (mastitis), but her signs and symptoms last longer than a week after starting antibiotics, she should ask for a referral to a breast specialist.
'Does Not Have to Be a Death Sentence'
But scientists and doctors are making progress in the diagnosis and treatment of this disease every day.
"Inflammatory breast cancer does not have to be a death sentence," said Dr. Larry Norton, head of the solid tumor division at Memorial Sloan-Kettering Cancer Center.
"We have made huge advancements in the treatment of this disease," Norton said. He went on to say that early recognition and treatment are the keys to survival.
The current treatment recommendations are mastectomy and chemotherapy. Many doctors will also suggest radiation therapy.
Another misconception that fuels fears about this cancer is that research has not been done on it.
"There is currently a fair amount of research going on in this field," Love said, citing Dr. Sandra Swain at the National Cancer Institute as someone who has done a large amount of research on this subject.
"What we don't have are large clinical trials, because it is not common enough," Love said.
'Screening! Screening! Screening!'
The Komen Foundation, a leading advocacy organization for breast health awareness, still says the most powerful tool in the fight against this cancer is self-awareness.
"Men and women need to perform regular self breast exams and follow up with their doctor immediately if they find any changes," said Dr. Cheryl Perkins at the Komen Foundation.
"The important message is that if your breasts, or any other body part, change in any way, you need to see a doctor for evaluation," Norton said.
Doctors urge that people not panic when they hear about inflammatory breast cancer in the media or on the Internet. Again, education and awareness are the key to improved survival with this cancer, as with any cancer.
"The message is Screening! Screening! Screening!" said Dr. Ted Tsangaris, chief of breast surgery at Johns Hopkins.