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Thursday, June 8, 2017

Every June, oncology professionals from all over the world make the pilgrimage to the American Society of Clinical Oncology (ASCO) Annual Meeting. This year was no different. At nearly 40,000 strong, ASCO attendees convened on June 2-6, 2017 in Chicago, Illinois where the community’s best and brightest presented clinical results that could “change practice overnight," said Richard Schilsky, MD, Chief Medical Officer at ASCO.

The Cancer Support Community was honored to return to ASCO and we did not come empty-handed. Armed with three abstracts and one poster presentation, CSC’s Research and Training Institute (RTI) team was ready to share our research with the oncology community. Through the Cancer Experience Registry®, the RTI has collected data from over 11,000 cancer patients and caregivers—with every type of cancer represented. The research is intended to shed light on the patient experience, the psychosocial/financial impact of cancer, and cancer survivorship. This year we presented the results from studies of gastric cancer patients, prostate cancer survivors, and melanoma survivors.

From the gastric cancer study, we found that around “half of respondents were at risk for clinical levels of depression and should be further assessed for appropriate follow-up.” A significant percentage of patients surveyed reported feeling fatigue (62%) and sad or depressed (50%). Financial worries are also a big distress trigger among gastric cancer patients. Many of these worries were not raised to the patients’ health care team. CSC President Linda House expressed her concern about these alarming statistics and recommended health care providers “[use] distress screening tools [to] help identify those who would benefit from psychosocial support.”

The second abstract presented highlighted prostate cancer survivors. CSC researchers found that one-fifth of survivors surveyed experience treatment regret. Over three-quarters (76%) of respondents reported erectile dysfunction (ED) since diagnosis. ED was common among those who underwent surgery/radiation (84%) and previously received hormone therapy (88%). Nearly a quarter of respondents reported that incontinence made sexual activity difficult. “These findings demonstrate that survivors care about more than just surviving, they care about living well,” observed CSC CEO Kim Thiboldeaux.

The third study focused on melanoma survivors and CSC presented both an abstract and a poster presentation at ASCO. The study explored (1) the financial impact of melanoma and its relationship to cancer-related distress and (2) survivors’ experiences discussing financial burdens with their health care teams. Over two-thirds of patients surveyed said that their top concerns related to health insurance and money worries. More than half (57%) reported that they depleted their savings on costs of care and treatment. CSC Senior VP of Research & Training, Joanne S. Buzaglo, said, “It is imperative [...] to support the development and evaluation of interventions to enhance doctor-patient communication about the cost of care, and connect patients with resources that can help.”

Moving forward, CSC will use these results to tailor our programming to serve as many people impacted by cancer as possible. CSC’s Cancer Policy Institute will also utilize this data to inform policymakers about the laws and regulation that would help lower costs and improve quality of care for cancer patients. You can join the Grassroots Network to help us amplify these findings.

The Cancer Support Community would like to thank the patients, caregivers, physicians, researchers, and funders that have made it possible for us to conduct this research to fully understand the cancer patient experience. If you would like to participate in meaningful research like this, please join the Cancer Experience Registry. Remember that your experience has power.

Check out more of RTI’s publications and presentations.