Unraveling the Pink Ribbon – The Most Aggressive Form of Breast Cancer
It doesn’t come wrapped in a little pink ribbon. It doesn’t come with a cute “breast cancer awareness” pen, stuffed animal, umbrella or any other marketable items. It comes with a grizzly 2-inch open sore beneath a purplish-red breast swollen to twice its normal size. This is the “silent killer” that, according to information from the and National Cancer Institute, accounts for one to five percent of all U.S. breast cancer cases and kills about 60 percent of patients within five years. Victims of Inflammatory Breast Cancer (IBC) are far from having a “cute” experience.
For Linda Gamble, a retired high school teacher from Pensacola, Fla., IBC was one of the most terrifying experiences she ever witnessed when her sister, homemaker Mary Ann Garber, was diagnosed with the disease on Oct. 7, 2002. One morning before Gamble went to work, Garber approached her, worried that the under wire in her new bras might have caused an infection. Her right breast was swollen to the size of a football, with large red open sores. “[When I saw it] what I felt was terror,” Gamble said. “To me, that looked like what cancer would look like.” Immediately, Gamble took her sister to a local practitioner. “He stepped back in shock,” Gamble said. “Then he called all his nurses in to see it.” Garber was diagnosed as stage IIIB, meaning the cancer had not yet spread to other organs. IBC has a faster doubling time than other types of cancers, spreading throughout the breast in sheets or nests, which are undetectable in mammograms, according to the Inflammatory Breast Cancer Research Foundation.
The nests clog breast tissue vessels, causing the breast to heat and swell. Garber was soon given news that she had approximately six more months to live. Immediately starting the rigorous plan of chemotherapy, a mastectomy in January 2003 and radiation therapy, she maintained optimistic, despite the grim outlook. “She didn’t believe it,” Gamble said. “She kept saying ‘I’ve never been sick a day in my life, so how could this be happening to me?'” Before her first mastectomy, Garber was treated with Adriamycin-Cytoxan, a form of chemotherapy that shrank her tumor by half its original size. Shortly after her surgery, the open sores reappeared over Garber’s mastectomy scars and spread to her left breast. When the open sores kept reappearing, Garber was diagnosed as stage IV, meaning the cancer had moved to other organs. Misdiagnosis is very common when it comes to IBC, according to information from IBCRF. Many victims are misdiagnosed with mastitis, a breast infection, and are prescribed antibiotics. “It was spreading so fast, it was unbelievable,” Gamble said. “Time is of the essence with IBC.” Also of the essence is ability to correctly define the cancer, according to IBCRF. Clinical IBC diagnosis is based on abnormal redness of the skin, skin swelling and an orange skin color. While such characteristics can be helpful in identifying the cancer, scientists are still researching what causes it, including having other types of breast cancer throughout family history, according to the NCI. Between the clinical and gene-related characteristics, IBC is very broadly defined.
IBC diagnosis was a gradually defined process for Charlotte Bryant, 59, an IBC survivor from Greenville, N.C. and contributor to the IBCRF web site. Bryant began noticing infrequent itching and discomfort around her left nipple from February to April 13, 2001. Two weeks later while she was out of town on business, the tissue across her breast became hard, feverish and painfully swollen. “[The symptoms] seemed to appear overnight,” Bryant said on the IBCRF web site. “I saw my doctor and he gave me [an antibiotic].” Time lost during misdiagnosis is one reason for the 40 percent survival rate, according to the IBCF. Other causes are a physician’s lack of experience treating IBC, and the cancer’s poor response to standard chemotherapy. After feeling a hard 8.8cm mass in her breast, Bryant returned for a mammogram and ultrasound in May.
The radiologist still did not know what it was, and sent Bryant back to her doctor. During a surgical appointment, Bryant was first told she had a 50/50 chance of having breast cancer. The next day, Bryant’s husband searched the Internet for his wife’s symptoms and came across the term “inflammatory breast cancer.” Those three words were Bryant’s diagnosis on May 14, 2001. “On Wednesday afternoon, a dear friend brought two of her powerful Christian friends to my office for healing prayer,” Bryant said. “I left that room with a big smile, saying, ‘I am going to be just fine!'” Bryant began the Adriamycin-Cytoxan chemotherapy on May 17, even heading back to work the following Monday with a positive outlook. “By the next chemo one week later, I was wearing my new wig,” Bryant said. “I felt that if I saw myself with no hair, I would look sick and I refused to be sick.” Her optimism was interrupted three weeks later, when her radiologist found two metastases on her vertebrae. Bryant was now stage IV. When she met with a Duke University Medical Center oncologist two weeks after her diagnosis, he gave the impression that he did not expect Bryant to live much longer. She refused to believe him. “He was not very encouraging and explained that this was a serious breast cancer,” Bryant said. “I told [my husband] and myself then that I was going to prove them wrong.” Bryant had surgery on Aug. 8, 2001 and completed all her radiation treatments on Jan. 28, 2002. She receives scans every six months and has remained stable so far.
Garber’s strength ended on July 31, 2003 when she lost her battle at 7:58 p.m. in West Florida Hospital, approximately four months before her 50th birthday. Average victims are diagnosed at age 56, according to IBCF. Other breast cancer victims are diagnosed, on average, around age 62. “She was fine and talkative and then one day she asked the nurse to take out her IV because it ‘hurt,'” Gamble said. “I kept saying, ‘but you need your IV; you’re not eating,’ and she would say, ‘I’ll get it put back in as soon as I start feeling better.'” Shortly after Garber had her IV taken out, she fell asleep and Gamble could not awaken her. Bryant has spent her recovery reaching out to such patients through the American Cancer Society Reach to Recovery program, where she volunteers. “I have met several IBC patients, and do everything I can to encourage them,” Bryant said. “I like to give other patients hope.” Gamble found hope on Oct. 25, 2006 while attending the opening of the new University of Texas M.D. Anderson Research Program for Inflammatory Breast Cancer, the first center in the world dedicated solely to the rare disease. Co-director Dr. Massimo Cristofanilli, associate professor in the Department of Breast Medical Oncology, said in the opening news release that the clinic’s primary goal is to “finally understand why this disease is different, why it is so resistant to treatment, and ultimately to develop therapies that improve the well-being of women with this very rare form of breast cancer.” “[The opening] was wonderful,” Gamble said. “I’ve been getting mammograms for 16 years and no one has ever mentioned these symptoms to me.”
The Future I
It was about three days before her menstrual cycle in September when Lisa Paris’ husband pointed out two symptoms on her right breast. Her nipple was sunken in and her breast was turning red and dimpling. “I told him I would give it a couple of days to see if it went back to normal after I started,” said Paris, 44, a manufacturer from Fairfax, Mo. “The week of my period I tend to get very tender breast.” But the symptoms remained two days later, and Paris made an appointment with her family doctor. Only a few minutes after looking at it, her doctor told Paris she had cancer. To make the diagnosis official, he scheduled a mammogram appointment on Oct. 2 and a lymph node and skin biopsy on Oct. 5. “They used an ultrasound first to see if they could find a place to biopsy since there really was no lump of any kind,” Paris said. “It was more of a mass.” Paris had fast-growing stage III Inflammatory Breast Cancer. She started her first six-hour chemotherapy treatment on Oct. 16. “My feelings were all over the place-scared, angry, pissed, numb,” Paris said. “The one thing I know is this thing will not beat me.” Most of Paris’ family was shocked when they heard her diagnosis, since there is no history of cancer in her family. When her friends and co-workers heard the news, they raised about $ 3,000 for her medical bills.
Half of Paris’ chemotherapy was completed on Nov. 20. She is planning to have surgery in January, depending on the diagnosis of a spot recently found on her lung. “If the spot is still there, they will biopsy it,” Paris said. “If it’s not scar tissue and turns out to be cancer, then probably more chemo before surgery.” Working around chemotherapy appointments has been the only change in Paris’ life since the diagnosis. She still spends time with her family and friends, sees her grandchildren and still has card night with her friends every Saturday. “I’m not putting my life on hold for this thing,” Paris said. “If, by chance, it does go the wrong way, I don’t want to have any regrets.” Paris recently tested negative for the BRACA1/BRACA2 gene, which links to hereditary breast and ovarian cancer, according to the NCI. She hopes her results can put her family at ease.
A new gene was discovered in June, when scientists from The Cancer Institute at New York University Langone Medical Center identified eIF4G1 as overexposed in the majority of IBC cases, allowing the cancerous cells to more rapidly form the clusters responsible for spreading, according to IBCRF. The breakthrough could lead to new approaches, therapies and classes of drugs to target and treat IBC. “I hope this new test can shed some light on the whole IBC thing,” Paris said. “If not to help me, but to help any one in the future who happens to be as unlucky as the rest of us who already have this stupid cancer.”