It is crucial that individuals diagnosed with cancer, regardless of their race, culture, or background, can access the necessary support and resources. During last year’s AONN+ Midyear Conference, Carol Evans, CEO and executive director of SHARE Cancer Support, discussed how it serves diverse patients diagnosed with cancer.
“SHARE has 2 sides,” she said. “We are like…think of 2 sides of a coin. One side is the place where we take care of patients. We take care of patients with 5 different types of cancer: breast, ovarian, uterine, cervical, and metastatic breast cancer, and we provide them with all kinds of support, helpline, support groups, and educational webinars, which create this huge on-demand library that you can access at any time for any of these cancers. On the other side, we have our outreach to the general public, and we do this through a whole team of ambassadors who go into the New York City area, and they are essential in making vulnerable populations comfortable about talking about cancer.”
SHARE Cancer Support comprises a community of knowledgeable survivors, those living with cancer, as well as healthcare professionals. SHARE utilizes English, Spanish, and Chinese languages for all their programs.
The panelists from this presentation who shared their stories are cancer survivors involved with SHARE. Nefa-Tari More is the director of AfroSHARE, a program for Black women, and she also started SHARE’s uterine cancer program in 2020. Sandra Morales is one of SHARE’s patient navigators and has been a volunteer for LatinaSHARE. Ife Lenard, MSW, EdM, is the vice president of culture at SHARE and a professor at Columbia School of Social Work.
Nefa-Tari More came to SHARE through an ovarian cancer diagnosis in 2018. Prior to that, in 2013, she received a uterine endometrial cancer diagnosis at the age of 33 years. Before she realized that she had cancer, she had gone to the emergency department with heavy bleeding, but she was dismissed due to her age and possibly her race. Following that, she was seen by a gynecologist and had a transvaginal ultrasound; the doctor recommended she see an outside specialist. At the specialist she had a D&C performed, and a week and a half later she received the diagnosis of endometrial cancer. Ms More then underwent treatment for about 9 months, after which there was no evidence of disease; however, she continued surveillance. On her third biopsy a recurrence was discovered, and she had to undergo a hysterectomy at the age of 35 years. She continued with surveillance after the hysterectomy, and at the age of 38 years ovarian cancer was found, and she had to undergo another surgery as well as chemotherapy. After that she found SHARE for support for ovarian cancer and eventually became an ambassador for SHARE.
Sandra Morales found a lump in her breast at the age of 38 years, but because she did not have any risk factors for breast cancer her doctor decided not to order a mammogram or a sonogram. She then waited until she was 40 years old to have a mammogram, and a mass was found, and she had to have a biopsy. No one called her regarding her biopsy. After 44 days she went to her doctor’s office, and they could not find the results from her biopsy. Her husband demanded that her doctor’s office call the lab and fax over her results. She then found out she had a very aggressive type of breast cancer. After receiving treatment, she attended one of SHARE’s support groups and became an ambassador for SHARE.
Ife Lenard is a survivor of triple-negative breast cancer (TNBC). She was diagnosed very late in 2018, and she signed up to participate in any research that came her way. She went through treatment but did not know she had TNBC until 2022. And she actually did not hear about patient navigation until 2023, when she was speaking at a panel for SHARE. She expressed that she was not familiar with the language around TNBC and said that she definitely could have used a navigator while she was going through treatment.
She stated, “I did not have the language to ask for what I needed then in 2018-2021. Boy did I need somebody to help me when I was home alone during the pandemic.”
The significance of navigation and support for individuals with cancer, particularly in diverse communities, is underscored in these narratives. SHARE Cancer Support provides this assistance to these individuals.
SHARE Cancer Support offers many tools and resources, such as publications, videos, and blogs. This program was highly utilized in 2023; the SHARE Helpline received 4128 calls and had 92,630 webinar participants at educational programs and support groups. In addition, SHARE developed a cancer support navigation program that launched this year. The SHARE outreach ambassador program reached 27,146 individuals and digitally reached 2.5 million individuals in 2023. SHARE ambassadors are women of color comprised of breast, ovarian, or uterine cancer survivors or caregivers who are trained to educate underserved Latino, African American, and Caribbean communities about these cancers. The SHARE ambassadors offer educational presentations at community-based organizations in Manhattan, Bronx, Brooklyn, and Queens.
Ms Evans said that “in order to really serve diverse patients or diverse communities, you have to have diverse people to run these programs and lead these programs and implement these programs.”
This presentation highlighted SHARE’s dual approach to supporting patients with cancer and educating the public. SHARE provides comprehensive support to patients with various cancers through helplines, support groups, and educational resources, while also engaging in public outreach via a team of ambassadors. Panelists shared personal experiences, emphasizing the critical role of navigation and support, particularly in diverse communities, and reinforced Ms Evans’ point that diverse leadership is essential for effective program implementation.
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