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Lyn had just turned 30 when she noticed stabbing pain in her breast. As a busy mom with a 2-year-old daughter and a 3-year-old son, she ignored it. A week later she noticed that her nipple looked funny, but she ignored that, too. When the pain became unbearable and she started feeling physically sick, she went to the ER. Weeks later, she received her diagnosis: inflammatory breast cancer.
Dana was 48 when she started doctorate classes on a Monday. On Tuesday, she woke up with a new lump in one breast. She wasn’t worried, because “everything I knew about breast cancer was, if it shows up overnight, it’s not cancer.” By Friday, the lump had grown and become red, hot and tender. Her mammogram was abnormal and a biopsy showed inflammatory breast cancer.
Sarah was 39 and on vacation when she noticed one bra strap left an indentation in her skin. Her husband saw one breast was suddenly much larger than the other. She didn’t have pain, but over two weeks, her breast skin hardened and turned pink, red, then purple. A small lump in her breast grew to the size of a lime. Within weeks she was diagnosed with inflammatory breast cancer.
To see more pictures of IBC, go to Inflammatory Breast Center’s website.
Inflammatory breast cancer (IBC) is a rare subtype of breast cancer, but one you need to know about. It is becoming more common in the United States, comprising five to ten percent of all breast cancer diagnoses. The cause is unknown, although a high body-mass (BMI > 26.6) doubles the risk of getting IBC.
In North Africa, almost half of newly diagnosed breast cancers are IBC, and viruses are being investigated as a cause. In the U.S., it is more common in black women (10% of diagnoses) compared to white women (5% of diagnoses). It is also more common in premenopausal women.
IBC is aggressive and spreads quickly, so early diagnosis is vital. Treatment needs to be started by a medical oncologist within days. The good news is that with early diagnosis and treatment, IBC is often curable. But since many doctors, including oncologists, have never seen inflammatory breast cancer, diagnosis is often delayed, leading to worse outcomes.
Unlike other breast cancers, inflammatory breast cancer is never silent. That’s because the cancer cells grow rapidly, filling blood vessels and lymph channels in the breast. This causes pain, redness, itching or swelling in the breast, nipple or armpit which worsens over days to weeks. The nipple can become inverted or swollen. Some women develop a rash-like area or bruising on the breast or nipple. Many women notice their breast develops dimpled skin, like the texture of an orange peel. This skin change, called peau d’orange, is one of the hallmarks of IBC, although it is not always present. Some women report feeling generally ill.
The symptoms of IBC are similar to mastitis. However, mastitis is usually associated with nursing, causes pain, and improves with antibiotics. Sarah was initially diagnosed with mastitis and started on antibiotics, even though she had no pain and her youngest child was 11 years old. She had no improvement after a week.
Lyn was also first diagnosed with possible mastitis and given antibiotics. When Lyn got home from the ER, she got online. She researched her symptoms and recognized peau d’orange change in her skin. When she saw a surgeon several days later, she said “I think I have inflammatory breast cancer.” He disagreed, but ordered a mammogram and ultrasound for the following week. Lyn pushed to have them done that day instead. Within 24 hours she had a biopsy, and her suspicion was confirmed.
While many breast cancers form a solid lump that can be seen on imaging studies, IBC grows like a sheet, spreading outward into the skin. For this reason, IBC often does not show up on mammograms and breast ultrasounds. A breast cancer specialist with experience in IBC should see suspected cases. If a mammogram and ultrasound are negative, most specialists will order a breast MRI, which is better for detecting IBC.
If there are skin changes, the specialist may biopsy a small piece of skin to look for cancer cells that have invaded the lymph channels and blood vessels. If there is a suspicious mass-like area in the breast, a needle biopsy may be done to detect cancer. These tests need to be done quickly. Ultimately, IBC is a clinical diagnosis, which means that no single test can make the diagnosis. A doctor with experience must look at all the information and diagnose IBC.
When Lyn went back to her surgeon after her biopsy, she remembers him saying, “You have a very serious cancer, it’s probably everywhere and you probably have a year to live.” Her first thought was “I’m not going to see my little girl turn three.” She asked to see an oncologist immediately, but remembers being told, “This did not happen overnight. It’s not an emergency. We’ll get you to someone in the next week or two.”
Lyn says, “That afternoon, something in me snapped. I went online, started researching like crazy, found the IBC groups, and started chatting with other patients.” She was referred to me for a second opinion, immediately saw me on a Thursday, had a skin biopsy on Friday and started chemotherapy on Monday.
Sarah also researched her symptoms online and was concerned she had IBC. She went to another surgeon and asked for a skin biopsy, but the surgeon wanted to wait and continue her antibiotics. She called around for a medical oncologist but could not get an appointment for weeks. Desperate, she called MD Anderson Cancer Center in Texas, told them the story, and flew down the next day, where she was diagnosed with IBC.
Inflammatory breast cancer is a completely unique form of breast cancer. Women come in complaining of a sudden mass or swollen red breast that appeared within days. Unfortunately, their history is usually discounted by medical providers. While most breast tumors take years to grow, IBC can develop over days, and it is an emergency. The tumor cells spread rapidly like a grass fire, and the only way to stop them is with chemotherapy. IBC requires immediate referral to a medical oncologist who specializes in breast cancer. The sooner chemotherapy is started, the better. IBC is often curable if caught and treated early.
If you have pain, redness, swelling, or skin changes in your breast (or nipple) that are worsening, see a medical provider immediately. Insist that any tests are done quickly. Be pushy if necessary. Remember that negative mammograms and ultrasounds don’t rule out inflammatory breast cancer.
If there is any concern for IBC, a breast MRI and skin biopsy should be done. Young women get IBC. Pregnant and nursing women get IBC. Educate your doctor. When in doubt, quickly get a second opinion from an oncologist with experience diagnosing and treating inflammatory breast cancer. “Follow your gut instinct,” Sarah says. “If you think something is wrong, don’t let a doctor tell you it’s not until you’ve had the appropriate tests. This is your life.”