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Increasing Awareness Around Inflammatory Breast Cancer

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A woman with stage 4 inflammatory breast cancer details her journey with the disease and why it is important for patients to ask questions about anything going on with their bodies.

Inflammatory breast cancer is a rare but aggressive type of breast cancer that is often confused with skin-related conditions because of its rash-like appearance, and health care professionals and advocates alike are emphasizing the importance of increasing awareness in this space.

According to the American Cancer Society, inflammatory breast cancer accounts for 1% to 5% of all breast cancers. It has some different symptoms compared with other breast cancers including breast inflammation with redness and swelling, which is associated with cancer cells blocking lymph vessels in the skin. The disease is known to progress quickly, and patients are often diagnosed with inflammatory breast cancer at either stage 3 or 4.

Sharon Elmore-Anderson, a retired United States Postal Service employee from Houston, received a diagnosis of inflammatory breast cancer in May 2013, which she said she found out “on accident.” She started having heart palpitations while working at the United States Postal Service, which sent her to the emergency room. After an overnight stay to perform tests and to monitor her symptoms, she was released with directions to follow up with her cardiologist.

Later that week, she was preparing to undergo knee surgery, which required a visit to her orthopedic doctor. Elmore-Anderson told the doctor about her trip to the emergency room, so her doctor requested to see her medical records before proceeding with surgery.

Elmore-Anderson recalled, “I went to meet with (my orthopedic doctor) and she said, ‘Did they tell you anything?’ I said, ‘Yes, they told me to follow-up with my cardiologist.’ And she said, ‘You have enlarged lymph nodes.’ And I said, ‘I wasn’t sure what that meant, enlarged lymph nodes.’ She said, ‘You need to go get that checked out.’”

She went to her doctor to undergo more exams and to assess her medical records. Elmore-Anderson told her doctor she hadn’t felt any lumps or bumps in her breasts, but upon examination, he noticed a small, thumbnail-sized rash with “an orange-peel look,” she said, in the crease of her breast.

This rash is often the indicator of inflammatory breast cancer, but health care professionals may confuse it with other conditions.

“I never thought that little thing could have been an indication of anything, because if (my doctor) would have told me to put some ointment on it, I probably would have,” Elmore-Anderson said.

This led to further testing, including a mammogram, an ultrasound and a biopsy, all of which led to her diagnosis in May 2013.

“When I came back to get those (biopsy) results read, they told me I had cancer,” she said. “I was shocked because I felt fine at that point. I felt fine. And he said, ‘You’re in stage 4.’ That really shocked me and my husband because I didn’t feel any lumps. I didn’t feel any bumps. He didn’t. I felt fine. I didn’t connect with the No. 4 because it didn’t feel real to me.”

The oncologist she was sent to after the diagnosis confirmed that she had stage 4 metastatic inflammatory breast cancer.

“I had cancer on the left, right side of my neck; left, right side of my collarbone; through my lymph nodes, left breast,” she said. “And I just couldn’t believe it.”

Treating Inflammatory Breast Cancer

Treatment for Elmore-Anderson included Taxotere (docetaxel), a mastectomy on her left side and radiation. She noted that she experienced fatigue with some of her treatment, in addition to losing her hair and nails with Taxotere. These side effects occurred at an extremely tough time in her life, when her mother became sick and died after Elmore-Anderson underwent the mastectomy.

“I was at her funeral with drainage bags,” she said. “Actually, as we were walking to the church, my best friend came with me to be with me, my toenail fell off. I mean, it was like, a lot of stuff went on. And I don't know how I made it through all this. But that was tough, going through her death and dealing with my possible death, because that's what I was thinking, because I didn't know anything about how the treatments will respond to me.”

The treatments she underwent all led her to no evidence of disease, although she “was still considered stage 4 because of the metastatic and the inflammatory disease,” she said. So, she continued treatment with Herceptin (trastuzumab).

Fast-forward to 2015, she was having an unusual amount of pain in her back, so she went straight to her oncologist to undergo an MRI, which led to a CT scan and a biopsy. In December 2015, she learned that she had cancer in the bone, particularly her spine.

This time, she underwent treatment with Kadcyla (ado-trastuzumab emtansine). She was supposed to undergo six rounds of treatment, but after receiving her fourth round, she experienced severe neuropathy.

“It was so bad that I couldn’t sleep in my own bed because every time I would lay down, it would trigger the neuropathy in my feet,” she said. “I ended up in a wheelchair because I couldn’t walk without severe pain. … I told my oncologist I can’t do it anymore because my quality of life was gone at that point. And they agreed to stop the treatment at that point.”

Her cancer team then started her on Perjeta (pertuzumab), in addition to Herceptin and anastrozole (a type of hormone treatment). This switch in treatment helped the neuropathy resolved enough for her to walk, but she still had balance problems every so often because she couldn’t feel the ground, she said.

Elmore-Anderson currently receives treatment with Phesgo (pertuzumab/trastuzumab/hyaluronidase-zzxf), which is a combination injection of both of the treatments she was previously receiving.

“That was one good thing to happen, so I don’t have to go in for infusion, and that made things a little better,” she said.

She also receives steroid and epidural injections to manage the pain in her spine.

Increased Awareness Needed

Before Elmore-Anderson received an inflammatory breast cancer diagnosis, she had never heard of the condition.

“(My oncologist) was doing a lot of talking, but I didn't even know what (questions) to ask. And that was a problem when you don't know what to do,” she said.

Her care team gave her literature about the disease and provided her the opportunity to connect with them on MyChart with any questions she came across. She also tried researching inflammatory breast cancer on the internet but was unable to find a lot of information.

Since becoming a patient advocate, Elmore-Anderson has spoken to many patients and family members of patients who have died because the signs of the disease were missed.

“They would have enlarged breasts, and (doctors) would treat them for rashes and all types of things,” she recalled. “They would say, ‘You just have an inflamed breast. Just put this cream on there and you’ll be fine.’ And they don’t make it, or it just makes it that much worse for them. It spreads fast to other organs and everywhere.”

Elmore-Anderson said she first went to her OB-GYN, with whom she had been seeing for a while already. She believed that’s why the doctor “took things a step further,” she said, to read the results from the emergency room and proceed with further testing.

Susan G. Komen recently released an Inflammatory Breast Cancer Scoring System, developed to help health care professionals better identify inflammatory breast cancer with common diagnostic criteria.

“I believe that would help doctors to look at the little rash, the swollen breasts or something that looks odd in the shape or leakage, all these things could equate to inflammatory breast cancer, not just an infection,” she added.

She advised patients to ask all the questions they can to learn more about their diagnosis or even about anything suspicious that may be occurring with their body.

“There is no dumb question because at the end of the day, it could be a life-or-death situation,” she said. “Mention anything that's going on with you. Sometimes we don't mention things because we don't think it's a big deal. That little rash of mine was a huge deal and I tell them that. I said that was just a thumb-sized rash, (and) that was the beginning of stage 4. I tell them, whatever it is, if it's not healing, if it looks suspicious, if it feels funny, if you thought you felt a lump, let a professional check it out and determine what it really is.”

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