Breast cancer survivor champions ‘unique’ refuge of holistic support

When Susan Sellers was diagnosed with breast cancer, she got nervous. And then she got quiet.

“My kids were 10 and 13 at the time, and when you have kids, it’s different — you don’t talk about it because you don’t want them to be scared,” she said.

But she needed to talk.

“I wanted to know what to do and what to expect,” Sellers said.

So she found herself picking up the phone and calling a friend in another city who already had been through that journey.

“I was so thankful for that,” said Sellers, president of St. Vincent’s Foundation. “But sometimes when you talk to someone else who has had breast cancer, their story and diagnosis is completely different from your own. It would’ve been great to have a place I could’ve called to get the kind of support I needed in that moment of being overwhelmed.”

Fast-forward several years, and she’s helping run a program that’s doing just that — Forge Breast Cancer Survivor Center, a community-based therapeutic program aimed at offering holistic support for breast cancer survivors.

It’s special, she said, because it’s “pretty unique” on the nationwide medical scene — it’s a noncompetitive collaboration of the city’s medical care systems: Brookwood Baptist Health, Grandview Medical Center, St. Vincent’s Health System, UAB Medicine, UAB School of Nursing and the Community Foundation of Greater Birmingham all came together for the project.

Rebecca Di Piazza, Forge project director, said that kind of collaboration is unheard of.

“There’s nothing like this anywhere where you have all of these competing organizations coming together for the betterment of patients and caregivers,” Di Piazza said. “That’s our biggest accomplishment. We’ve got the smartest minds in health care in one of the most competitive health markets in the country meeting monthly to try to address needs, implement change and eliminate barriers for care.”

As a result, Forge is able to offer a range of services from the moment of diagnosis until end of life or remission, she said. 

Funded by the Women’s Breast Health Fund, the program has dozens of trained advocates who can mentor survivors and connect them with support services, community resources and counseling.

“Our advocates are trained volunteers who work with survivors within their health systems,” Di Piazza said. “They can go with them to appointments and help them with logistical issues like transportation, and they can help them with adjusting to what we call the ‘new normal’ that they’re living in.”

Forge also offers a 24/7 telephone support line for survivors and their families. The program doesn’t offer medical advice, but it offers everything it can in the realm of social support coordinated with area health systems, she said. 

“It’s a joy to be able to serve women and their families as they are going through this journey. When you’re dealing with a diagnosis, it’s a lot, and you shouldn’t have to be battling it alone,” she said.

Personal connection

Forge’s services are needed, Di Piazza said, because data show that in 2015, there were an estimated 3 million cancer survivors nationwide, and 77 percent of those surveyed said they would be most comfortable talking about their cancer questions with another survivor.

But many of them struggle to get the support they need, and many of them find themselves facing more fatigue-related issues and health problems than before their diagnosis, according to the survey.

Sellers said data like that is a significant force behind Forge’s mission. It’s why she, Di Piazza and founder Madeline Harris have no problems justifying why Forge is a worthy cause to invest their lives in.

And for Harris — like Sellers — breast cancer is personal.

“My daughter was diagnosed with it the day before her 35th birthday,” Harris said.

Her daughter had three small children. And she had no family history of cancer.

“I worked for 25 years with UAB,” Harris said, who co-founded and directed the UAB Interdisciplinary Breast Cancer Center, now the Breast Health Center at Kirklin Clinic. “But it’s very different when it’s your own child. It really gave me an insight from that perspective.”

And Forge is meant to be the place that families like hers in five surrounding counties can go to get resources, ask questions and “have someone with a bended ear,” Harris said.

It’s a patient-centered model Harris said she believes will be replicated nationwide for breast cancer survivors, as well as survivors of other diseases. 

Competition and barriers are coming down in the Birmingham area in the breast cancer treatment realm, and “we’re ahead of the game on that,” she said. “It is phenomenal. It is really unprecedented. And we are excited about it.”

For more information, go to forgeon.org.