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One woman's work to spread awareness about rare form of breast cancer

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CNY/NNY/S. Tier: One woman's work to spread awareness about rare form of breast cancer
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It's a fast-moving and potentially deadly disease. And maybe the scariest thing about it is that it's often mistaken for less serious conditions. Our Sarah Blazonis sat down with a woman who's made it her mission to make more people aware of inflammatory breast cancer.

NORTH SYRACUSE, N.Y. -- At least once a day, Renee Dillon sits down at her computer and watches a motivational video set to a song with the lyrics, "What doesn't kill you makes you stronger."

It's a lesson she's lived and learned everyday for nearly five months.

Dillon says she and her family were on vacation in August when she first noticed something was wrong.

"Towards the end of that vacation, I just noticed that my breast was a little hard compared to the other one and a little sore," Dillon said.

At first, doctors told her she had a condition called mastitis. Medicine didn't help. A biopsy showed she had a common type of breast cancer, but Dillon still had questions.

"Why do I still have these mastitis symptoms? And nobody really could give me an answer, and I'm like, 'something's just not right,'" said Dillon.

It was through research that she first learned about inflammatory breast cancer. According to the National Cancer Institute, up to five percent of women with breast cancer have this type. It's hard to diagnose because lumps often aren't found during screenings and mammograms.

Finally, after getting a PET scan at the Dana Farber Cancer Institute, Dillon got answers.

"Even though I had a bone scan and a CT scan and all these tests done, it didn't pick up what the PET scan did and that was that I was already in an advanced stage. It hit my spine," Dillon said.

In addition to getting healthy, Dillon says her mission now is to encourage other women to be advocates for their own health.

First, stay on top of your treatment. The spirit-lifting photo of People's Sexiest Man Alive that decorates Dillon’s binder is optional.

"Every time I have to go to chemo or anything else that's maybe not the most pleasant thing, I have my eye candy right here, but most importantly, is what's inside my binder," she said.

That's a careful record of doctor's appointments, treatments and information at her fingertips to send to doctors or just help explain her illness to others. She also urges other women to ask questions as she did.

"Doctors are human and you know what? If your gut's telling you that you don't feel comfortable with something, get a second opinion," she said.

Dillon says she plans to continue treatment and working to make other women aware of IBC and offer the same support friends and family have given her.

A benefit will be held for Renee Dillon on January 20 from 1 to 5 p.m. at the American Legion in Cicero at 5575 Legionnaire Drive. There will be food, live music, entertainment and raffles. It's $15 at the door. Advance tickets are $10 for adults and $5 for children.

To learn more about inflammatory breast cancer, visit ClientIP:, UserAgent: CCBot/2.0 ( Profile: TWCSAMLSP