5 questions for Adelphi's breast cancer hotline

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While October is Breast Cancer Awareness Month, the folks at the Adelphi New York Statewide Breast Cancer Hotline and Support Program in Garden City, New York, say their mission is to step up to the plate every day for women (and men) who need help coping with how the illness affects their entire lives, including their emotional health, relationships, and much more.

Each year, about 200,000 women in the United States are diagnosed with breast cancer, according to the National Institutes of Health. In 2014, the number of new cases in women was actually 232,670. And yes, men can get breast cancer, too, although that is very rare: about 1 percent of all new cases is in men.

Adelphi University's program -- considered the oldest breast cancer hotline in the country -- began in 1980 as a post-mastectomy group at the School of Social Work. The women in the group "found comfort in sharing their fears, questions and experiences among others who were experiencing the same feelings," says Hillary Rutter, a clinical social worker who has led the program since 1996. Wanting to reach out to other women with breast cancer, the women in that early group teamed with the staff, faculty, and interns at Adelphi to develop a full-fledged program and hotline.

The program's professional social workers and 100-plus trained volunteers provide one-on-one and group counseling, education, advocacy, community outreach, and more. The services are free. (Disclosure: my partner is a staff member.)

For this second "5 questions for..." column, I interviewed Rutter about the program and its signature annual fundraiser called Creative Cups for which bras are artistically decorated and then auctioned.

1. What services do you provide that sets your program apart from others?

Rutter: [O]ur attention and commitment to underserved women. Years ago, it was identified that fewer underserved women of color practiced early detection methods like mammography, often resulting in later diagnosis and poorer prognosis.

While many organizations tried to do outreach to underserved Latina and African American women without much success, we partnered with multiple organizations on Long Island and created Sisters United in Health/Hermanas Unidas en la Salud. By employing two outreach coordinators, one Latina and one African American, we have been able to educate and coordinate screening services for thousands of women.

When we were informed that many underserved women with multiple barriers to treatment were being diagnosed with breast cancer without adequate support and patient navigation services at a nearby hospital, we negotiated and sent in a bilingual social worker who for the past 10 years has followed every newly diagnosed woman through initial diagnosis, treatment and beyond.

2. How did Creative Cups come about and what does it mean for the program, clients, and participants?

Rutter: When Dale Flashner, director of the Graphic Arts Department here at Adelphi University, came to us with the idea of what is now known as Creative Cups, I thought, what a great idea. Here at the Adelphi Breast Cancer Program we are deeply involved with people with breast cancer every day and it is possible to become overwhelmed with the problems that people face when coping with this disease. We thought it would be beneficial to take a turn and do something lighthearted and creative to draw attention to breast cancer and to raise funds for the free much-needed services that we provide.

It has proven to be an amazing experience. So many people have found that making the bras and writing about what has inspired them is a way to express their deep feelings -- both positive and negative -- about this disease. I am honored to have read those stories and to see the incredible creativity that this project has inspired.

In addition, this event has raised a total of $175,000 for the program at the last three Creative Cups events.

3. What do you see as the biggest challenge facing the program, and how has the program adapted and evolved to meet that challenge?

Rutter: Our biggest challenge, aside from funding which is a constant reality for most non-profits, is keeping up with technology, trying to update and market our program through social media and modern technology. We hired a talented communications/marketing coordinator who has helped us make major strides in our social media efforts, purchased a new database system, and are exploring new ways to reach and support people through modern technology.

4. What can a family member do to support a loved one who faces breast cancer, and how does the program help with that aspect?

Rutter: Be there to listen, let them express their feelings. Offer specific help with household chores, meals, transportation, childcare, etc. Take your cues from them; let them tell you what they need. Let feelings be expressed. Be there. Don't tell them what to do. Don't avoid them. Don't share horror stories. Don't treat them like an invalid. Above all, don't avoid them and don't be surprised if they have mood swings, or seem sad -- it's normal.

Caregiving can create its own toll on those supporting others, so we provide support and counseling to those supporting and caring for diagnosed patients.

5. I imagine that when someone first gets a diagnosis of breast cancer, she (and sometimes he) is scared, confused, overwhelmed, sad, and more. After walking out of the doctor's office, what should they do first?

Rutter: Take a deep breath. Call the hotline [to] speak to someone who understands. Realize that it is not a death sentence. Take time to process the information received. Formulate questions. Identify one or more family members or friends who can help [you] through [your] journey, accompany [you] to appointments, serve as a sounding board, and help [you] with everyday chores and responsibilities. Get a second opinion. Realize that you don't have to go through it alone.

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Here are links to resources:

Adelphi's hotline and program (800-877-8077)

National Cancer Institute's breast cancer information

Free cancer screenings in New York

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