MARY ESTHER — Erin Robinson and Martha Van Dam want the world to know mammograms aren’t enough, that breast cancer isn’t always a lump and doctors can often be wrong.

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The local duo, who were both diagnosed with inflammatory breast cancer exactly one year apart in 2015 and 2016, are now using their experiences to raise awareness for rare forms of breast cancer and encourage women to never doubt their bodies.

"We're the lucky ones," Robinson said. "We're the ones who are still here. Inflammatory breast cancer is different than other forms. With us, it can only be detected in, best-case scenario, Stage 3."

Robinson's story began while stationed in Japan in 2015. Then 35 years old, she noticed a small pea-sized lump on her breast and immediately went to the doctor for a mammogram. Robinson was told she was cancer-free. 

Six months later, after moving to Fort Walton Beach, Robinson said her nipples began to invert, a rash appeared and her breasts began to swell.

Robinson went back to the doctor and received another mammogram and an ultrasound, which also came back negative. 

"I had two mammograms and two ultrasounds that came back completely clear," she said. "Inflammatory breast cancer cannot be detected in a mammogram."

As the symptoms worsened, Robinson said she refused to leave a doctor's appointment unless she received a biopsy, which physicians were reluctant to give her. A day later, Robinson received a phone call informing her that she had inflammatory breast cancer.

"Women are told it happens in older people, or that it has to be in the family," she said. "We're told to get a mammogram and it'll save your life. I didn't check any of those boxes. I had to fight for my diagnosis and then that was just the beginning of the fight."

Robinson immediately had a port installed in her chest, began chemotherapy, had a double mastectomy and received radiation. 

"I still have to get my port flushed out every six weeks," Robinson said. "For IBC patients, because the re-occurence rate is so high, they like for us to keep everything in place just in case it does come back."

Through her experience, Robinson began mentoring other women with IBC. Through that mentorship, she was introduced to Van Dam.

Exactly one year after Robinson's diagnosis, Van Dam found a red mark on her breast. Fortunately, she'd heard years ago of inflammatory breast cancer and immediately called her doctor with a self-diagnosis. 

Just like Robinson, however, her mammogram came back clear.

"My mammogram showed nothing, but an ultrasound picked up swollen lymph nodes," Van Dam said. "Swollen because the cancer had already metastasized to the underarm lymph nodes. An MRI located the cancer in the breast. Wedge and incisional biopsies confirmed it. Thankfully, scans showed that was as far as it had spread."

Van Dam underwent chemotherapy, a mastectomy and radiation. For IBC, reconstructive surgery is rarely an option.

Both Robinson and Van Dam, now both in remission, are working with a group of IBS women to raise awareness for the signs and symptoms.

The women said they are hoping their stories promote further research, medication and, eventually, a cure for inflammatory breast cancer.

"If there is such a thing as 'early detection' for this cancer, it is before it has spread to distant places in the body," Van Dam said. "It is as soon as the first symptom appears. Because it is so aggressive and spreads so quickly, the sooner one can begin treatment, the better their chances for survival."

Although Van Dam said she and Robinson will need to closely monitor their bodies for the next few years, she is "truly thankful for the experience."

"I hate that my body has been changed this way, and I hate the trauma that my family and friends and I experienced, but I treasure the beauty that came out of it," Van Dam said. "I like the 'me' that emerged much better than the 'me' that entered the experience."