by Paromita Pain
Birthdays mark milestones. For Terry Arnold, one birthday changed the course of her life. “I had just turned 49 when one morning I woke up with one breast significantly swollen,” she says. “Soon I went from a cup C to a D and my bra wouldn’t fit.” Today, Arnold is an Inflammatory Breast Cancer (IBC) survivor. She is a passionate advocate speaking out for greater awareness and education about this rare, but extremely aggressive form of breast cancer. It is efforts like hers and other survivors’ that have made IBC part of the dialogue on cancers that affect women.
“I had five babies who I breast fed till their first birthday. I watched what I ate and exercised,” says Arnold. “I always thought I had excellent breast health. I was more worried about diabetes since my family has a history of it.” That is why, even when Arnold could not lift her right arm because the right breast area was so swollen and painful, cancer was the last thing on her mind.
According to the National Cancer Institute, IBC accounts for one to five percent of all breast cancers diagnosed in the United States. The low rate of IBC diagnosis and its particular variety of aggressiveness has compelled me as a health journalist and a woman to explore this cancer more.
The American Cancer Society puts IBC’s five-year overall survival rate at 40 percent when compared to nearly 90 percent for all other types of breast cancer combined. The Inflammatory Breast Cancer Research Foundation says, “It has been observed among women of all ages,” and “IBC is more common among African American than Caucasian women.”
Dr. John Ward, a practitioner from the Huntsman Cancer Institute of the University of Utah, tells me in an interview that IBC is a unique and particularly aggressive form of breast cancer. “The most common form is the invasive ductal carcinoma, which develops from cells that line the milk ducts of the breast and then spread.”
IBC may be detected without a lump, says Dr. Beth Overmoyer, Director of the Inflammatory Breast Cancer Program at the Dana-Farber Cancer Institute in Boston. “The cancerous cells block the lymph vessels of the skin of the breast, causing the characteristic red appearance and inflammation. It spreads fast and can occur over a few weeks or a matter of months. Sometimes it can come overnight.”
Because lumps are often not found during routine breast exams and mammograms, it is difficult to detect IBC. IBC’s symptoms force us to question whether cancer awareness and education over relies on the benefits of mammograms. A holistic approach that also encourages attention to cancers that escape the mammogram will go a long way to help women understand symptoms better.
Dr. Overmoyer makes an important point when she says that IBC is often misdiagnosed as an infection due to the nature of its symptoms and the fact that it belies most notions we have about cancer. “Often it’s believed that women who are younger than the median age when breast cancer is usually detected won’t get it,” she tells me.
Dr. Lori Grennan’s diagnosis is a case in point. She was diagnosed at age 32. “I was nursing my daughter and very focused on that,” she says. “Even though my physician said it was mastitis, I insisted on a biopsy.” And this saved her life. Grennan believes that being a doctor perhaps underlines her instinct that this was no ordinary lump. Life after that was a blur of chemotherapy, surgery, hospitalization and doctor’s visits all the while managing a baby. For most women this probably seems like a nightmare come true. But as Grennan says, “Sometimes when you have to do it, you just do it.” Arnold echoes Grennan when she says that shocking as her diagnosis was all she could think of was what would happen to her family.
What makes IBC so aggressive is its biological makeup. “IBC cancer starts with the same cell types as non-IBC cancers but makes different proteins. The change starts very early in the biology,” explains Dr. Overmoyer. “Unlike non-IBC cancers, IBC makes a great deal of proteins called adhesion molecules that have a high chance of sticking to organs.” Treatment involves chemotherapy, surgery, and radiation.
“We give chemotherapy until we get maximum response. Then we do surgery. Surgery involves mastectomy,” says Dr. Overmoyer. “We can’t do a lumpectomy (remove a part of the breast) as IBC spreads through the lymphatic vessels (channels in the breast) which go around and through the breast. That’s why, even if all the cancer is gone, mastectomy has to be done.”
Radiation follows mastectomy and takes care of the residual cancer. “Reconstruction doesn’t immediately follow mastectomy,” says Dr. Overmoyer. “We delay it for after radiation so that we can focus on removing cancer completely from the body.”
Clinical trials are an important option for IBC patients. Dr. Naoto T. Ueno, Executive Director of the Morgan Welch Inflammatory Breast Cancer Program of The University of Texas MD Anderson Cancer Center says patients must ask their doctor about clinical trials in which they may participate. Dr. Ueno believes that the conventional treatment regimen of chemotherapy, surgery, and radiation is not enough to achieve the best outcome for patients. “Look for a clinical trial that is specific to the patient’s condition. If there is an opportunity to participate then they should look for this before any new therapy starts.”
Dr. Ueno also stresses the importance of choosing the right hospital. “Choose a hospital that has a concentrated interest in IBC. Patients must go to a place that has medical oncologists, surgeons, and radiologists specifically for IBC because the treatment approach must be a multi-disciplinary one. Also, it would be ideal if the place had clinical trials specific for IBC,” he advises.
When Arnold was diagnosed in 2007, she began six months of chemotherapy followed by a mastectomy and six weeks of daily radiation. “For a year, my full-time job was getting treatment,” she says. “I was either at the hospital or asleep.” She made a full recovery by 2008 even though reoccurrence is very high in the first year and the aggressive nature of the disease puts life expectancy at three years after diagnosis.
“My doctor too had warned me that I had just a few months more. My youngest was just 14 at that time. That’s when I knew I had to get time on my side,” Arnold tells me.
Robert W. Carlson, M.D., of Stanford Comprehensive Cancer Center and Chair of the National Comprehensive Cancer Network (NCCN) Breast Cancer Guidelines Panel says, “Clinically, this [IBC] looks like cellulitis of the breast, and any cellulitis of the breast that occurs in a non-gravid, non-lactating woman should be assumed to be inflammatory breast cancer until proven otherwise.” Therefore, if you have red, swollen, and itchy breasts, your doctor has no reason to deny a check for IBC.
“Several new targets are being proven in labs to reduce the inflammations. We are working with hospitals to identify proteins that will help detect IBC more efficiently,” says Dr. Ueno. “But that’s in the future. What is important now is education, both of the public and medical personnel, that a red-hot inflamed breast needs attention, and needs it fast.”
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About the author: Paromita Pain has been a senior reporter and writer for The Hindu National Newspaper, India, and has worked with several other media projects specializing in health, development and social journalism as well as writing for young people. A recent graduate from the Annenberg School of Journalism at the University of Southern California, her reporting focuses on health, human rights, and prison systems in the United States.