What "distress" means in cancer care
If a nurse has handed you a short questionnaire asking how upset you have felt this week, you have met the idea of cancer-related distress. The patient guide from the National Comprehensive Cancer Network (NCCN) defines distress as an unpleasant experience of a mental, physical, social or spiritual nature that can affect the way you think, feel and act. It includes familiar feelings such as sadness, worry and anger, but it is much broader than any one emotion.
The NCCN guide is direct about how ordinary this is: everyone with cancer becomes distressed at some point, and distress is described as normal. Levels range from mild to severe. The National Cancer Institute (NCI) describes a similar spectrum, from normal adjustment, where a person finds ways to cope with the changes cancer brings, through distress that starts to affect quality of life, to conditions such as an adjustment disorder or major depression.
Because the term is so broad, being "distressed" is not a diagnosis and not a judgment about how well you are coping. It is a way of asking: is anything about this experience weighing on you, and what is it?
Where distress can come from
The checklist that accompanies the NCCN screening tool shows how wide the net is. It groups possible sources of distress into five areas:
- Physical: pain, sleep, fatigue, memory or concentration, sexual health, changes in eating or physical ability
- Emotional: worry, sadness, fear, grief, loneliness, anger, changes in appearance, feeling like a burden
- Social: relationships with a partner, children, family, friends or coworkers, and communication with the health care team
- Practical: work, finances, insurance, housing, transportation, child care, caring for others, treatment decisions
- Spiritual or religious: meaning and purpose, changes in faith, questions about death and dying
Seeing money, rides or child care on the same list as fear and sadness can be a relief. Practical strain and emotional strain feed each other, and a care team can only help with the problems it knows about.
Why care teams screen for it
According to the NCCN guide, identifying people who are distressed is the responsibility of the cancer care team, not something patients are expected to raise on their own. The guide notes that the National Academy of Medicine made distress screening and management a standard of quality cancer care in 2007, and that the Commission on Cancer later added screening and referral to its accreditation standards for cancer centers. NCI likewise notes that some expert organizations recommend screening all people with cancer, soon after diagnosis and during and after treatment.
The reasoning is practical. Distress can affect self-care, social life, mood and faith, and it can make it harder to cope with cancer, its symptoms or its treatment. Screening is meant to catch it early, so help can be timely and fitted to what a person actually needs.
When and how screening happens
Ideally, the NCCN guide says, screening happens at every cancer care visit, because distress can rise at any time. Where that is not possible, it should happen at the first visit, at follow-up visits, and at moments when distress is more likely, such as:
- Being tested for cancer and waiting for results
- Hearing the diagnosis, or learning that a risk of cancer runs in your family
- Waiting for treatment to start, or starting a new treatment
- Living with side effects or worsening symptoms
- Being admitted to or discharged from the hospital
- Finishing active treatment and moving to less frequent follow-up visits
- Learning that the cancer has returned or worsened
- Losing a family member, friend or pet
A widely used tool is the NCCN Distress Thermometer, which asks you to rate your distress over the past week, including today, on a scale from 0 (no distress) to 10 (extreme distress). It is paired with a Problem List where you mark the concerns behind the number. Other centers use short questionnaires, a tablet at check-in, or questions built into the electronic record. NCI notes that screening often covers how you feel, your energy, relationships, work and finances.
What happens after you answer
A member of your care team should go over your answers with you and may ask follow-up questions or give you a more detailed questionnaire. Your primary team, often your oncologist, nurse and social worker, can manage mild distress: acknowledging it, explaining what to expect, clarifying your treatment, easing physical symptoms and pointing you to trusted resources.
For other kinds of distress, the team may refer you on. The NCCN guide describes chaplains for spiritual concerns, social workers and counselors for practical and psychosocial concerns, palliative care for ongoing physical symptoms, and mental health providers such as psychologists and psychiatrists when mental health is affected. Who Helps With the Emotional Side of Cancer? explains how these roles differ.
There is no right score. Answering honestly, even when you would rather appear fine, gives the team accurate information to work with. The guide suggests asking who will see your screening results, what help is available, what your insurance will cover, and how care will be coordinated with your other providers. If talking to your team about feelings is hard, How to Talk With Your Oncology Team About How You Feel has ideas.
Where a psychologist fits
Physical symptoms, side effects and treatment decisions belong with your oncology or medical team, and some physical problems can look like emotional ones. A psychologist works with the emotional and relational side: the fear, grief, strain at home, or old difficulties that cancer has stirred up. That support can come through your cancer center or from a psychologist in the community.
Dr. Lehmann is a licensed clinical psychologist in Franklin, Michigan, with an insight-oriented, integrative approach. You can read about cancer-related emotional support and contact the practice to ask whether she can help with your situation. Telehealth is available for clients physically located in Michigan at the time of the session.