“An Evening for Cancer Survivors and Caregivers”: Bringing Together a Community of Support
On January 26, prior to the official opening of the second annual Cancer Survivorship Symposium, cancer survivors, caregivers, patient advocates, family physicians, oncology providers, and others gathered in San Diego, CA, to make connections, discuss survivorship issues, and get expert answers on their survivorship-related questions.
An Evening for Cancer Survivors and Caregivers was moderated by Kevin C. Oeffinger, MD, Program Committee Chair for the 2017 Cancer Survivorship Symposium and director of the cancer survivorship center at Memorial Sloan Kettering Cancer Center. He opened the event by noting that, happily, more people are surviving cancer than ever before: 14.5 million cancer survivors in the United States alone, and millions more across the globe. “We are here tonight to discuss the issues that are important to you, to hear from you, and to hear from others who have faced the same fears that you have,” he told the audience.
The evening’s panelists came from diverse backgrounds, but each represented an intersection of professional and personal interests in cancer survivorship:
- Ann Partridge, MD, MPH, FASCO, a medical oncologist and survivorship researcher at the Dana-Farber Cancer Institute and Harvard Medical School, supported a close friend through a breast cancer diagnosis.
- Belinda Vail, MD, MS, a family physician at the University of Kansas School of Medicine, is the mother of Hodgkin lymphoma survivor.
- Richard Dickens, MS, LCSW-R, a licensed social worker and director of client advocacy at CancerCare, is a survivor of non-Hodgkin lymphoma since 1994.
- Samantha Watson, MBA, CEO and founder of The Samfund, which provides direct financial assistance and online support to young adults with cancer, is a survivor of Ewing sarcoma and myelodysplastic syndrome since 1999.
The majority of the evening was dedicated to an open forum, during which attendees were invited to share their stories and pose questions to the panelists.
Self-advocacy was a touchstone of the discussion, as attendees brought attention to the challenges they face in managing their survivorship care. Panelists acknowledged that the largest burden of coordinating care falls to the survivor, and that the system can be frustrating to navigate.
If attendees were to do only one thing after leaving the event, panelists said, they should make sure they have a treatment summary and survivorship plan documenting their exact diagnosis, specific treatments received, and recommended follow-up care, filled out by their oncologist and shared with their primary care provider. Attendees who don’t have a summary and care plan should be vocal and insist on getting this information from their cancer care team. (ASCO offers simple, free 2-page downloadable templates for this purpose.)
“The patient voice is the most powerful thing. When we want change, it occurs because patients voice what that change needs to be,” Dr. Oeffinger said.
That voice can also be used in the larger service of patient advocacy, which many survivors find empowering, and which can lead to a renewed sense of meaning and purpose after cancer. “Advocacy can seem so overwhelming, but you don’t have to start a whole new nonprofit,” Mr. Dickens said. “Get involved with an established organization, share your passion, and continue to build a network in your community and elsewhere, because change can happen.”
Patient advocates can inform the development of new models of care and access that improve survivor well-being, be champions for cancer research, put pressure on their representatives to enact changes to health policy, support one another through the “emotional emergencies” that a physician is not always equipped or available to manage, and raise awareness and disseminate information about survivorship to the larger community.
“We’re very lucky right now to have so many opportunities to share our stories and get information out there” using technology and social media, Ms. Watson said. “It’s our responsibility as cancer survivors to speak up for those who come after us.”
Community and teamwork was a thread that ran through many of the questions and responses.
An attendee raised the issue of support for caregivers and family members of the person with cancer, who also struggle with anxiety, uncertainty, and sadness. Ms. Watson and Mr. Dickens both acknowledged that, in some ways, a cancer diagnosis may be as hard or harder for family members than for the patient, since the patient is at the center of care and support. The panel encouraged caregivers to look not solely to the patient’s medical team, but to explore counseling, support groups, social workers, and other resources in their communities. Dr. Partridge noted a study indicating that family anxiety and distress also distresses the patient, so care for the whole family is essential.
Integrative medicine and complementary therapies were also discussed. Panelists explained that, according to clinical studies, many patients feel they benefit when integrative approaches are used in conjunction with conventional medicine.
“There’s a feeling of control, and a feeling of doing something positive for yourself, even if the medical outcome doesn’t change,” Dr. Partridge said. She cautioned against ingested interventions, such as herbal supplements, which may have negative interactions with prescribed medication.
Survivors were also encouraged to look outside the cancer center for resources for self-care. Many communities offer opportunities for creative expression, resources for maintaining a healthy lifestyle (including physical fitness and nutrition information), classes and seminars, and other activities that can help cancer survivors re-engage with everyday life after treatment.
Community programs that contribute to overall well-being are valuable even when they are not specifically intended for cancer survivors. “I try to get my patients to enjoy the life they have, to stay as healthy as they can, to take care of themselves both physically and mentally, and to have the very best life that they can have,” Dr. Vail said, whether they are surviving cancer or living with a chronic disease.
Health care policy issues underscored many of the points that came up during the forum, particularly in terms of access to supportive services such as counseling and therapy, acupuncture and other mind-body integrative approaches, and appropriate and comprehensive follow-up care after active anticancer therapy is complete. Panelists strongly encouraged attendees to stay informed on these policy issues and to contact their elected representatives.
One question spoke to specific challenges faced by the families of pediatric cancer survivors: how can parents instill healthy lifestyle habits in a child who had cancer at such a young age that they don’t even remember it, without causing undue fear or distress? Dr. Oeffinger recommended being open with the child about their past diagnosis, ensuring that the child gets appropriate follow-up care, and modeling healthy choices for the entire family without singling out the person who had cancer.
After more than 90 minutes of wide-ranging, productive discussion, Dr. Oeffinger closed the evening by returning to the concept of community, with a charge to attendees to be there for each other and for other survivors and caregivers. “For everyone in here who is motivated and can advocate for themselves, they have three friends who cannot, and those are the ones who really fall through the cracks,” he said. “I encourage all of us to keep our eyes open to be able to help our fellows and colleagues.”
An Evening for Cancer Survivors and Caregivers was organized by ASCO in collaboration with the American Cancer Society, CancerCare, Cancer Support Community, LiveSTRONG, and the National Coalition for Cancer Survivorship. The 2017 Cancer Survivorship Symposium: Advancing Care and Research, A Primary Care and Oncology Collaboration was cosponsored by the American Academy of Family Physicians, the American College of Physicians, and ASCO. Cancer.Net, ASCO’s award-winning patient information website, provided educational materials for the event, including the ASCO Answers Guide to Cancer Survivorship (PDF). The evening event and the symposium were supported by the Conquer Cancer Foundation of ASCO.