Dr. Lidia Schapira, a medical oncologist at Massachusetts General Hospital, learned three harsh realities of receiving a cancer diagnosis after inviting her breast cancer patients to take an online survey to become part of the Cancer Experience Registry, a website launched last spring:
■ 54 percent of the more than 6,000 cancer patients in the national registry said they wish they received more help dealing with emotions related to cancer.
■ 58 percent reported that they wished they had more help managing long-term side effects like fatigue and anxiety.
■ 41 percent said that engaging in sex since their diagnosis has been a source of distress.
“The registry is aimed at survivors to enable them to share their experiences with the disease,” Schapira said during a press briefing last week. But, she added, data collected on the site — each survey is kept private — can be used to better inform doctors and researchers about what patients contend with and what resources they lack.
Anyone who has been diagnosed with cancer can join the Cancer Experience Registry by going to csc.cancerexperienceregistry.org and filling out a questionnaire.
“It’s very user friendly,” said Joanne Buzaglo, vice president of research and training at the Cancer Support Community, a patient advocacy group that runs the registry. In June, the site will allow caregivers to share their experiences.