After recovering from surgery and chemotherapy for breast cancer, Angela Long knew she wanted to make a difference for women who were facing the same disease. She participated in fundraisers such as Strides for Breast Cancer and met with women who were newly diagnosed to let them know they weren't alone and share how she got through it.
Long, who lives in Sarasota, was diagnosed with breast cancer in 2004. She was 35 years old and had two small children, ages 5 and 2.
She is now the CEO of Breast Investigators, a website (www.BreastInvestigators.com) she founded that combines social networking, education, breast cancer resources and events specific to Sarasota and Bradenton.
The format is one she hopes will be adopted in other cities in Florida and elsewhere. Visitors to the site can apply to be breast health advocates in their own regions. Long is planning to train them on how to work within their communities.
Breast Investigators has a Twitter feed, Facebook page and YouTube channel. Its advisory council includes Sarasota physicians Thomas Bakondy, a breast radiologist; and general surgeon Russell Novack, plus breast care physicians in Texas and California, and Sarasota genetics counselor Cristi Radford.
Long named the site Breast Investigators because breast cancer patients must be investigators to learn about the disease and understand their options, she said. The site's tagline is "a community taking the mystery out of breast cancer."
"What happens is you really don't know what is out there unless you're fortunate to have someone to help you," she said.
"We all have to investigate to stay on top of all that's available to make the best decisions."
In her case, she didn't know anyone who was a young mother and breast cancer patient or how to find one when she was diagnosed. The majority of breast cancer occurs in post-menopausal women.
Long went to the local chapter of the American Cancer Society that offered free wigs to women losing their hair to chemotherapy. She was disheartened to see that the wigs looked like something only an older woman would want to wear.
"They have a great wig shop now that is large with a good variety," said Long. "But at the time, they didn't and I understood the reality of what I was facing."
"It was a challenge -- I think it is for anyone at any age -- but there was nobody like me to talk with and no one to reach out to who could guide me through the process," she said.
She found that she had to navigate confusing decisions that required medical knowledge. Breast cancer comes in many forms with multiple treatment options that depend on factors such as size, stage and hormone patterns.
Then there is the emotional shock of having cancer.
"Honestly, when I was diagnosed, I was really fortunate. My husband was my advocate," she said. "I was really fortunate to have a great medical team.
"But there is so much to know and women need to know they are their own best advocates and they are their own decision makers," said Long.
Breast Investigators is designed to be a clearinghouse site. There are other advocacy groups for breast cancer but no one-stop place for information about all of them.
"I think really the gap is that each organization does what they do and do it well, but there was nothing out there that really pulls everything together," said Long.
Breast Investigators also includes breast-cancer bloggers who can post on the site once they are approved. There are survivor stories and articles by physicians, a local providers directory and event listings.
With so much information on the Internet, a credible site fills an important need, said Marie Borsellino, a breast health facilitator at Sarasota Memorial Hospital who is an advisory board member for Breast Investigators.
Borsellino's job at Sarasota Memorial is to help breas cancer patients find resources. She includes Breast Investigators as a source they can turn to.
"I think her voice resonates with so many women," said Borsellino in describing how Long's work touches breas cancer patients.
Long said she is constantly discovering new resources in the area for breast cancer patients.
She recently learned about We Care, the organization in Bradenton that helps uninsured patients who can't afford medical care.
Long works closely with the Center for Building Hope, the organization in Lakewood Ranch that offers programs for cancer patients and their families. In April, she was chosen as one of the center's annual Keystone Award honorees for her work in helping people with cancer.
"She's very much aligned with who we are and what we do," said Andrea Feldmar, program director at the center.
Managing the Breast Investigators site and related social media takes up most of her time, said Long. She also is active in breast cancer advocacy through groups such as the Young Survivors Coalition, a national organization for young women with breast cancer, and frequently travels to conventions.
"It is definitely a full-time job. I'm one of those who sleeps and breathes it," said Long. "I'm developing the model that I hope to teach others."
Susan Hemmingway, Herald health correspondent, can be reached at firstname.lastname@example.org.