What Cancer Patients Aren’t Talking About

Non Hodgkin lymphoma patients may talk freely about only some quality of life issues

/ Author:  / Reviewed by: Joseph V. Madia, MD

(RxWiki News) During your doctor visits, there are some things you may not want to bring up. You may think they’re concerns your doctor can't help you with, or maybe you’re embarrassed to talk about them. Recent research looked at what topics cancer patients are willing to discuss with their doctors.

Non-Hodgkin lymphoma survivors were least likely to talk about emotional issues with their doctors in follow-up visits and more likely to talk about their physical symptoms in a new study.

Whether or not a survivor talked about health-related quality of life issues varied according to the topic and how well they rated their physician’s overall care.

"Talk to your doctor about anything that’s bothering you."

Neeraj K. Arora, PhD, a research scientist in Division of Cancer Control and Population Sciences of the National Cancer Institute, led this study that looked at non-Hodgkin lymphoma survivors’ willingness to discuss health-related quality of life issues with their follow-up care physicians.

Non-Hodgkin lymphoma is a blood cancer that starts in the lymphatic system, which is a key part of body’s immune system. Nearly 70,000 Americans will be diagnosed with non-Hodgkin lymphoma (NHL) this year.

Adverse physical, mental and emotional effects are common for NHL survivors to experience several years after active treatment has ended.

Data from a population-based study (Experience of Care and Health Outcomes of Survivors of Non-Hodgkin’s Lymphoma; ECHOS-NHL) was used to identify 563 NHL survivors, who were given a survey about quality of life issues.

A total of 408 survivors completed the survey, which asked if they would talk to their physician about various topics, including physical functioning such as pain and shortness of breath; ability to complete daily activities; emotional issues such as sadness, anxiety and depression; social interactions and relationships; and sexual functioning.

These survivors were then asked if they would bring up the topic with their follow-up physician, wait for the doctor to raise the issue or prefer not to talk about the issue.

The researchers learned how many survivors were willing to initiate conversations about the following topics:

  • Physical functioning — 94 percent
  • Daily activities — 82 percent
  • Emotional issues — 76 percent
  • Social relations — 43 percent
  • Sexual functioning — 49 percent

A large portion of the survivors weren’t willing to talk about social problems (45 percent) or sexual function (39 percent) even if the physician brought up the topic.

The survivors were more open with physicians who they indicated “always” spent enough time with them or whose care they rated as “excellent.”

Reasons given for not discussing specific issues included “nothing can be done” or “this was not their doctor’s job” or preferred to “talk to another clinician.”

“Although an overwhelming majority would discuss physical and daily functioning issues, one in four survivors were reluctant to bring up emotional issues and one in two would not initiate discussion of social and sexual problems,” the authors wrote.

They concluded, “To deliver cancer care for the whole patient, interventions that facilitate survivor/clinician communication about survivors’ health-related quality of life are needed.”

This study was published in September in the Journal of Clinical Oncology.

The research was supported by the California Department of Health Services, National Cancer Institute’s Surveillance, Epidemiology, and End Results Program and the Centers for Disease Control and Prevention’s National Program of Cancer Registries.

No conflicts of interest were reported.

Reviewed by: 
Review Date: 
September 23, 2013
Last Updated:
September 24, 2013