Navigating the breast cancer journey with Adelphi hotline's help

Although Breast Cancer Awareness Month comes once a year (and will soon end), cancer is a year-round fact of life for people affected by the disease.

That is why the staff and volunteers of the Adelphi New York Statewide Breast Cancer Hotline and Support Program in Garden City, Long Island, try 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. And yes, men can get breast cancer, too, although that is very rare. Men account for about 1 percent of all new cases.

The program at Adelphi University evolved from a post-mastectomy support group founded in 1980 into a full-fledged organization and hotline, considered the oldest in the country.

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

The services are free.

Hillary Rutter, a clinical social worker, has led the program since 1996. She weighed in on some important issues regarding helping clients and callers cope with the disease. (The interview has been edited for length and clarity.)

When someone first gets a diagnosis of breast cancer, she (and sometimes he) might be 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. It is not a death sentence. 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 responsibilities. Get a second opinion. You don't have to go through it alone.

What sets your program apart from others in terms of services, information, and resources?

RUTTER: Our attention and commitment to underserved women. Fewer underserved women of color practice 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 learned 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 sent in bilingual social workers who for the past 10 years have followed newly diagnosed woman through initial diagnosis, treatment, and beyond.

All of our services are based on the needs of our clients. We create support groups based on what we hear from the community. If three people with the same needs call us, we will create a support group for them.

We have two educational forums in November 2017 that came from needs expressed by our volunteer survivors and current support group members. One forum, November 6 at 6 p.m., will address treatments for lymphedema from four different modalities. Our other forum, November 16, will tackle the issue of sexuality after a breast cancer diagnosis.

What are the biggest challenges women face when they get a diagnosis? What are related to their income, race/ethnicity, or other factors and how does Adelphi help?

RUTTER: Our hotline volunteers and social workers are available to help women process an overwhelming amount of information so that they can decide on the best course of treatment. Someone who understands what they are going through and can support them through this difficult time is always available.

Women who are poor, uninsured, underinsured, and underserved experience a multitude of other barriers. While anyone diagnosed with breast cancer should be provided with quality medical treatment and should have access to quality support services in their community regardless of race, ethnic background, sexual orientation, immigration status, education/literacy level, language spoken, or ability to pay, our own frontline experiences show, and research supports, that there are many potential barriers to treatment, specifically for minority women.

Immigrants who lack English proficiency may have issues navigating the medical system, communicating with physicians, and interfacing with insurance companies which can lead to delays in medical care and ultimately higher mortality rates. African Americans typically get diagnosed at later stages of breast cancer, making their mortality rates the highest. For Hispanic women, the combination of language barriers and cultural beliefs may deter them from engaging in treatment. Furthermore, individuals with language barriers are also often extremely poor, isolated in their communities, uninsured, and unemployed.

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. 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. 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.


Links to resources:

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

National Cancer Institute's breast cancer information

How to get a free mammogram in New York


Note: This article was adapted from 5 questions for Adelphi's Breast Cancer Hotline, published in 2014, to include updated information.