As part of its efforts during Breast Cancer Awareness Month, the Adelphi NY Statewide Breast Cancer Hotline & Support Program is seeking about two dozen more volunteers to field calls.
“We need people to help people who need help, basically,” said Nina Foley, hotline and volunteer coordinator for the program, which started in 1980 and averages about 30 calls a month. The breast cancer hotline is the oldest in the country, said Foley, and serves the whole state. “If someone calls our hotline from Buffalo and they’re looking for a resource for wigs, we have all the information that we can provide them of different places they can go to in the Buffalo area.”
The hotline, which is supported by donations, grants and state funding, grew out of a mastectomy support group run at Adelphi’s School of Social Work in 1980. “These group members, along with staff, faculty and interns at Adelphi, developed the Woman-to-Woman hotline,” Foley said.
A key aspect of the hotline is that all its volunteers, who must commit to two-hour shifts weekly or every other week, are breast cancer survivors.
“To be truly empathetic and walk in someone’s shoes, sometimes involves having been in the same situation,” said Foley.
As a social worker who has not had breast cancer, Foley, 57, of Sea Cliff, said she understands the issues involved “but not in the same depth as someone who’s experienced being diagnosed.” She joined the support program in June 2021 after interning there while she was working toward her Master of Social Work at Adelphi. “I was so impressed by how comprehensive and professional and how much they met the needs of people in their time of need.”
The hotline requires training for volunteers, whose activities include offering peer-to-peer support, resources such as counseling, and helping to educate medically underserved communities about the importance of breast-cancer screenings.
Many calls to the hotline are from the recently diagnosed. “They don’t know where to turn, and they want to talk to someone to help them process what they’re going through,” Foley said, noting that the caller might get a referral to support services with a licensed social worker, either for individual counseling or through a support group in English or Spanish. The program has Spanish speaking volunteers as well as one who speaks French Creole.
Other callers want to talk to someone with the same diagnosis, age or gender. “Two of our volunteers are male survivors whose own personal diagnosis has motivated them to support, advocate and educate people about the reality of male breast cancer and the need for self-
exams and screenings,” Foley said.
People also call to ask about resources, such as finding a wig, or for financial assistance. “We have many avenues that we can help them with different organizations to get their needs met,” Foley said.
Here are some of the hotline’s 100 volunteers and their stories:
Echoing Oprah Winfrey, who said, “To move forward, you have to give back,” Jeannie Silano-Rettura described her hotline volunteering as “a calling.”
A retired high school Spanish teacher who was diagnosed with breast cancer 36 years ago, Silano-Rettura was inspired to volunteer by the hotline’s former director, Barbara Balaban, who was a student in an adult-education class Silano-Rettura was teaching.
“She was a very intuitive woman and I feel that she thought that I would benefit from the Adelphi program. She was right,” said Silano-Rettura, 68, of West Babylon. “The Adelphi program has given me hope and truly has helped me in dealing with my breast cancer journey.”
In the hundreds of calls she’s answered during 30 years with the program, Silano-Rettura has discussed what a diagnosis means, tried to allay fears, offered assurances of support and given out useful and timely information. “I find it very comforting to know that something that I might have said or discussed with them will lead to a better understanding of his or her diagnosis along this arduous journey,” she said.
In particular, Silano-Rettura said, it has proved rewarding to help Spanish speakers navigate a complex health system.
“Knowing that you have made a difference in someone else’s life is awesome!” she said. “Whether it’s a five-minute or half-hour call, the feeling of helping someone is forever.”
A voice for men
Diagnosed with breast cancer in September 2012, Jeff Flynn, 69, of Bonita Springs, Florida, found very little information and support until his surgeon put him in touch with another male survivor.
“Although his cancer diagnosis was not as bad as mine, it was comforting speaking to another male that had his breast surgically removed and went through some of the same regimens that I had to deal with,” said Flynn, who recently moved from East Meadow and is retired from a technology company where he was senior director. “He was a huge help for me.”
Flynn learned about the hotline from that man, a volunteer there, and began volunteering himself seven years ago “with the mission to get the word out that men can get breast cancer, too, and to be proactive in checking your breast periodically.”
Flynn fields hotline calls exclusively from men. “They told me straightaway that women won’t want to speak to a male, and I completely understand that,” he said.
A few years ago, Flynn was asked to speak at Adelphi’s Celebration of Survivorship, which takes place in October. “I was proud to speak about my experience and to educate men on the facts/metrics of male breast cancer,” he said.
Through his experience with cancer and working with Adelphi, Flynn has learned that people need help when they receive a cancer diagnosis, which some fear is a death sentence.
“Thankfully, after many years of research, there are many drugs that can put cancers into remission, and many [people] have had normal extended lives, myself included,” Flynn said, adding that a few of the men he’s helped have become friends.
Volunteering, adds Flynn, is truly fulfilling, and he plans to continue to do it remotely from Florida. “If anyone has the time or wants to help others, your efforts will be rewarding and appreciated,” he said.
‘A privilege to help’
A retired teacher, Deborah Holley, 66, of St. Albans, Queens, said she began volunteering as a way to give encouragement to others, in much the same manner as she was supported by friends and family after her diagnosis in 2014 at age 58.
In addition to volunteering on the hotline and assisting at Adelphi’s community events, Holley believes that each person’s story needs to be heard.
“I have the opportunity to speak to people who are sharing their hearts and being vulnerable,” said Holley, who learned about the hotline when she was looking for resources after her diagnosis. “I consider it a privilege to help others navigate this challenge, as someone did for me.”
Holley said she strives to be an active listener and allow others to form their own plans for moving forward.
Through volunteering, she has learned the importance of community. “When two or more people come together, they can create a bond that is helpful when times are difficult or when things are going well,” Holley said.
Whether it’s through the hotline or another opportunity, Holley encourages others to volunteer wherever their passions lie.
“It would be great if it were this program — but find that place and give of your skills and time,” she urged.
Being a good listener
When COVID-19 halted the hotline’s outreach at health fairs and community workshops, for which she had been volunteering since 2011, Diane Ventimiglia, 69, a telecommunications consultant who lives in Farmingdale, asked if she could volunteer on the hotline — and has never looked back.
“The hotline allows me to make an impact on a person’s life, giving them hope and answering questions as they navigate a breast cancer diagnosis,” said Ventimiglia, who was diagnosed in 2012.
One moment that stands out for Ventimiglia came at the end of an interactive class about managing a chronic health condition that she helped teach. When the class concluded, she received a handwritten card from the students that read “Thank you for sharing your wisdom and knowledge with us and your continued faithfulness to the program.”
“Boy, if that was not a helper’s high!” Ventimiglia said.
Ventimiglia credits being a good listener and positive thinker with enabling her to help people get through challenging journeys.
She’s also learned to focus on exactly what the person is calling about and empathize with their feelings; when she doesn’t have an answer, she’ll say so and pass along the question to a staffer who can help.
Volunteering, Ventimiglia, said, has made her life truly meaningful.
“Being able to help another person enriches my life and is empowering,” she said. “It is also an excellent way to develop new friendships and find your ‘tribe.’ ”
ABOUT THE HOTLINE
The Adelphi NY Statewide Breast Cancer Hotline & Support Program, 800-877-8077, is open 365 days a year from 9 a.m. to 9 p.m. Breast cancer survivors interested in volunteering can email Nina Foley at firstname.lastname@example.org or call 516-877-4315. A four-day training program will run on Zoom from 10 a.m. to 1 p.m. Nov. 1, 8, 15, and 22; all sessions are mandatory. Remote volunteering is an option.