Personalized Cancer Navigation Is a Phone Call Away

February 2022 Vol 13, No 2

Categories:

Survivorship
Karen Costello, MSS, LSW
Senior Director of the Helpline and Community Navigator at Cancer Support Community

It was 4:30 PM on a Friday afternoon, and Sarah, a 52-year-old mother of 2 teenaged boys, contacted the toll-free Cancer Support Helpline (a free resource!). Sarah found the Cancer Support Community (CSC) website while searching for support, and she was not sure what to expect. Sarah was diagnosed with stage III breast cancer earlier in the week, and her head was still spinning with so many questions. Her surgeon was providing her with a lot of information, and she was scheduled to see a medical oncologist the following week. She shared with the social worker that her biggest concern was how her sons would cope with her cancer. In addition, she was not sure who she should tell—her work, her friends—and how they would react? And what about the bills? Would her insurance be enough to cover the surgery and treatment she had ahead of her? Her anxiety grew, so her social worker recommended she contact CSC for help.

Sarah’s community navigator on CSC’s Cancer Support Helpline was a kind, friendly voice on the other end of the phone. After Sarah completed a brief survey called a distress screening to help understand her concerns and sources of distress, she began working with the community navigator to create a plan. Within minutes she was feeling less overwhelmed. Sarah and her navigator discussed the importance of open and honest communication with her sons. They reviewed some useful tips from a booklet from the CSC’s education series Frankly Speaking About Cancer titled “What Do I Tell the Kids,”which is filled with age-appropriate guidance for parents with cancer. When Sarah asked whether her sons were also at risk for cancer, she was offered a free consultation with a genetics specialist. Sarah’s distress screening survey indicated a strong desire to be involved in the treatment decision-making process, and they discussed and scheduled a session of the Open to Options program. This program offers a session with a trained specialist who can help callers prepare for appointments in which treatment decisions will be made. This would certainly empower Sarah to ask questions and articulate her goals for treatment so her medical team would know her wishes before she even started her surgery or chemotherapy treatments.

During this initial call to the Cancer Support Helpline, it was also discovered that Sarah could have significant out-of-pocket expenses as she has a high-deductible health insurance plan. Because of this, Sarah was referred to the CSC financial navigation specialist for further assessment and identification of financial resources. This helped Sarah understand how her diagnosis may impact various parts of her life, including her finances.

The navigator then provided Sarah with an overview of MyLifeLine, which is an online social platform that connects people with cancer and their support network—family, friends, caregivers, and others. MyLifeLine provides social and emotional support as well as some practical assistance, such as a calendar where loved ones can sign up to prepare a meal, drive a child to a sports practice, and other helpful tasks. Sarah signed up for this free resource and was able to personalize it to meet her needs.

Before they finished their call, the community navigator sent Sarah a follow-up e-mail with the resource information they had discussed and scheduled follow-up calls so they could continue to assess Sarah’s needs throughout her care. The navigator also arranged for the program director of the local CSC affiliate to contact Sarah so she could join yoga and cooking classes as well as support groups at a center right in her own home community. Sarah would also be able to participate in online sessions for education, networking, and support at this local affiliate.

After Sarah’s call to the Helpline, she felt more hopeful and ready to face her diagnosis. She felt more prepared to move forward with her appointments and treatment and better equipped to support her sons as well. Sarah and the navigator would speak again in 1 week and touch base after Sarah’s appointment with the medical oncologist. In time, Sarah will have additional questions, and the Helpline will be available to her to navigate alongside so that she does not face cancer alone.

About the CSC

As the largest professionally led nonprofit network of cancer support worldwide, the CSC, including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through 3 areas: direct service delivery, research, and advocacy. The organization’s Institute for Excellence in Psychosocial Care includes an international network of affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, DC, and across the nation. For more information, please call the toll-free Cancer Support Helpline at 888-793-9355, or visit www.CancerSupportCommunity.org.

Since launching the Cancer Support Helpline in April 2012, CSC has provided high-quality telephone psychosocial services, and as of February 2021, the Helpline community navigators and resource specialists have handled nearly 158,000 inquiries from more than 68,000 unique callers requesting our services. The Cancer Support Helpline is staffed by licensed mental health community navigators and resource specialists, experts at helping patients, caregivers, and families overcome social, emotional, practical, and financial barriers to care, and providing timely access to quality individualized navigation from before cancer diagnosis and through all phases of their cancer experience (Figure).

Services Provided

  • Provide distress screening via CSC’s Cancer Support Source tool to identify areas of concern and potential increased risk for depression and anxiety
  • Offer short-term emotional support and referrals to community or telemental health service providers
  • Practice proactive navigation to patients and caregivers during their cancer experience throughout the continuum
  • Assist callers with referrals to appropriate Cancer Support Helpline subject matter specialists (genetics/genomics counselor, certified clinical trials navigator, pediatric cancer social worker, and financial navigator)
  • Foster coping and adaptation to cancer and related effects to help improve patient and caregiver quality of life through education and resources
  • Provide Open to Options, a decision support counseling program that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

The Helpline does not provide medical advice to callers. Instead, callers are empowered by education, resources, and the knowledge that the Cancer Support Helpline will be there throughout their cancer experience.

The Helpline is free of charge and open for telephone calls, video calls, and chats Monday through Friday from 9:00 AM to 9:00 PM and Saturday and Sunday from 9:00 AM to 5:00 PM ET. The Helpline toll-free number is 888-793-9355, and the website address is www.cancersupportcommunity.org/helpline.

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Last modified: November 15, 2022

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