Finding a group of their own
Breast Cancer Connections offers support, networking for young women
Niki Calastas is a busy young woman. A single mother of two small kids, she works as a program administrator at the Stanford Institute for Economic Policy Research. And last year, she was diagnosed with Stage III breast cancer.
"It was like hitting a brick wall," she said of her diagnosis.
"This is not something I thought I'd be dealing with at 32. You think, 'I'll get sick when I'm older but not yet.'"
Calastas had to deal not only with her health but also with managing her family life and career.
"How will this affect my kids? I need to go to work tomorrow; I need to make dinner. It's very disruptive. You want to hide under the covers," she said.
A co-worker recommended that Calastas visit Breast Cancer Connections (BCC), the nonprofit resource center located at 390 Cambridge Ave. in Palo Alto.
The center, which offers more than 35 free programs and services for breast-cancer patients and their families, has been providing information and support to those touched by the disease since 1993.
Calastas took her co-worker's advice and eventually joined Breast Cancer Connections' support and networking group for young women, which meets every other Tuesday evening. After losing her hair, she said she felt as though everyone stared at her, but at Breast Cancer Connections, she found a group of accepting, understanding peers.
"It was so warm and welcoming and safe," she said.
Young women (loosely defined as under age 45) diagnosed with breast cancer struggle with different issues than older cancer patients.
They're more likely than older women, for example, to have young children.
"You can ask each other about parenting strategies, what to do when your kids want to play rough, or what you're going to tell them about the cancer," Calastas said.
Other issues particularly pressing to young women can include body image, career building, dating and the potential infertility that can result from cancer treatments.
Because breast cancer is more often an older women's disease, doctors sometimes misdiagnose it in younger women until the cancer becomes more advanced.
"The doctor says, 'You're too young; it's not cancer' and then waits too long," said Cheri Livingston, Breast Cancer Connections' director of programs and services.
Young women therefore often have to undergo more aggressive treatment and suffer more side effects, Livingston added.
Group facilitator Ann Rivello said younger women sometimes have a harder time dealing with their diagnoses because they're otherwise in good health, unlike older women who have experienced prior health problems.
"It's very confusing, very shocking. It's a very inconvenient time to get cancer," she said.
At a typical meeting of six to 12 participants, members take turns giving updates about their lives and discussing issues and questions. Sometimes Rivello prompts the women to talk about what they're thankful for or what they're struggling with.
A medical social worker, Rivello volunteered to start the group in 2009, when she was diagnosed with cancer at age 38. She didn't feel comfortable in the general support groups she tried, where most of the women were post-menopause.
"It was really difficult for me. I was always the youngest, and that made me feel even more isolated," she said.
With the creation of the group for young women, the response has been overwhelmingly positive, she said. And seeing that Rivello, who has two small kids of her own, has come through cancer and is doing OK gives women in the thick of treatment hope.
"It's really important that they see a person who's gone through it. And even though emotionally and physically it takes quite a toll, the women are really quite positive. It really clarifies what's important in life," Rivello said.
Originally held on Thursdays, the group was switched to Tuesdays after some of the single women explained that Thursday is a popular date night.
For group members, meetings can provide a place of emotional release.
"I have to hold it together all week. When I walk in to BCC, I just start crying because I can. It's the only time I can be vulnerable. They understand it," Calastas said.
It can also be a place for laughter, gossip and forming relationships.
"It's amazing how quick two hours can fly by," she said, adding she's made friendships that extend past the nonprofit's walls.
"How would I ever have met these people otherwise?" she said.
Calastas, who went through chemotherapy, a double mastectomy and seven weeks of radiation, is now cancer free. She'll undergo hormone therapy for five years and is currently combating lymphedema (a side effect of the cancer treatment) but is in good health otherwise. She said she'll remain involved with Breast Cancer Connections into the foreseeable future, including volunteering there when her kids are older.
"I don't know how I would have navigated my treatment without it. These are my people. I would do anything for BCC," she said.
Breast Cancer Connections is holding its annual spring benefit breakfast Tuesday, April 26, from 8 to 10 a.m. at the Sharon Heights Golf & Country Club Ballroom, 2900 Sand Hill Road, Menlo Park. Individual tickets are $100, and tables for 10 are $3,000. Writer/director/activist Michealane Cristini Risley and journalist Jan Yanehiro will be featured speakers. They are two of four co-authors of the book, "This Is Not the Life I Ordered." The Palo Alto Weekly is a sponsor of the event.
More information about Breast Cancer Connections is available at www.bcconnections.org.
Editorial Assistant Karla Kane can be e-mailed at firstname.lastname@example.org.