Why your feelings belong in the exam room
Many people keep oncology visits strictly medical. They worry that mentioning fear or sadness will waste the doctor's time, seem ungrateful, or make them look weak. Cancer care guidance says the opposite. The National Comprehensive Cancer Network's patient guide on distress describes distress as normal and very common among people with cancer, and calls distress management an important part of cancer care. It also states that identifying people who are experiencing distress is the responsibility of the cancer care team.
There is a practical reason, too. The National Cancer Institute notes that physical signs of stress and anxiety, such as a racing heart, poor sleep, appetite changes or trouble concentrating, can also be caused by medicines or treatment. Telling your team how you feel helps them sort out which is which. Emotional and physical symptoms often affect each other, and your team needs to hear about both.
Use the screening questions
Many cancer centers ask patients to rate their distress or fill in a short questionnaire at visits. A well-known example is the NCCN Distress Thermometer and Problem List, which asks you to rate distress from 0 to 10 and mark concerns across physical, emotional, social, practical, and spiritual or religious areas. It is easy to rush through these forms or round down. Answering honestly is one of the simplest ways to start the conversation.
If your clinic does not screen you, you can still bring the topic up. The NCCN guide notes that patients who are not screened can show their team their own answers to the thermometer and problem list. For a fuller explanation of distress and why teams screen for it, see What Is Cancer-Related Distress?.
What to say, and how to say it
The National Cancer Institute's advice on talking with your health care team applies to emotions as much as to symptoms: describe your concern briefly, state the most important point first, and write your questions down so you can ask the biggest ones before time runs out. Some ways to open the topic:
- "Before the scan results, I want to mention that I have been very anxious and not sleeping."
- "I feel down most days since treatment started. Is that something you can help with?"
- "My family and I are struggling with how to talk about this. Is there someone here who helps with that?"
- "I'm afraid of what comes next, and it's getting in the way of work. What support do you offer?"
Concrete details help. Instead of "I'm stressed," try describing what has changed: how long it has been going on, what it affects, and what you have already tried. It is fine to repeat a question, to ask the team to use simpler words, and to bring a family member or friend who can listen and take notes.
Make the conversation easier to remember
Strong emotions make it harder to take in what you hear. The National Cancer Institute suggests taking notes, having someone take them for you, or asking whether you may record the conversation. Repeating back in your own words what the team said is a quick way to check you understood. If no one can come with you, you can ask whether the doctor would be willing to talk with a friend or family member by phone.
Include the people close to you
The NCCN guide notes that caregivers, family and friends can be involved in care planning when appropriate, and that they may also experience distress and need support from the team. If a partner or adult child is struggling, it is reasonable to ask what the cancer center offers for family members, too.
Who on the team to talk to
You do not have to save emotional concerns for the oncologist. The NCCN guide explains that the cancer care team can manage mild distress and can refer you to people with other skills when needed. Depending on where you are treated, those may include:
- Oncology nurses and other members of your treatment team
- Social workers and counselors, who help with practical concerns such as housing, childcare and finances, and with psychosocial concerns such as worry and strained relationships
- Mental health professionals, for evaluation and treatment that may include psychotherapy or medication
- Chaplains, for spiritual or religious concerns
- Palliative care specialists, when ongoing physical symptoms are adding to distress
Questions the NCCN suggests asking include who will see the results of your distress screening, what help is available, what your insurance will cover, and how the team will coordinate with your other providers.
Privacy and who gets told
Some people hold back because they do not want certain relatives to hear about their emotional struggles. The National Cancer Institute notes that HIPAA gives you the right to choose who your medical information is shared with, including friends and family members, and that it is very important to let your team know which family members or friends they may share information with. You can also tell your team how you prefer to hear news: all at once or gradually, in full detail or just the main facts.
If you want support outside the cancer center
Some people want a therapist who is separate from the treatment setting. The American Cancer Society suggests asking your cancer care team what kind of counselor fits your needs and whether they can recommend options, and checking with your insurance company for a list of covered providers. With your written permission, a psychologist outside the cancer center can coordinate with your physicians when that would help.
Dr. Lehmann is a licensed clinical psychologist in Franklin, Michigan, with an insight-oriented, integrative approach. Read about cancer-related emotional support, and contact the practice to ask whether she can help with your situation. Medical questions about symptoms, side effects and treatment always stay with your oncology team.