When a Cancer Caregiver Should Call the Care Team

This page is for people caring for someone with cancer at home. It explains which changes to watch for, when to call the care team, and when to get emergency care instead.

Caregivers often hesitate, because the body is not theirs and the appointment is not in their name. Call anyway. The National Cancer Institute tells caregivers plainly: "Don't be afraid to ask questions. You have a right to any information you need. Ask as many questions as you need to." It also tells you to get the phone number of someone on staff you can call for help. And it tells you to ask the team directly: "After treatment, what do we need to watch for? When should we call you?"

A nurse would far rather take a call that turns out to be nothing than hear about a fever two days late.

About this page. This page describes urgent decisions. It has been checked against the sources it cites, but it has not been reviewed by a clinician. Follow the instructions your own care team gave you, and if you think it is an emergency, call 911 or your local emergency number.

Privacy rules can stop a clinic from talking to you. NCI's caregiver guidance is to make sure at least one family member has written permission to receive medical and financial information. Ask the clinic what form they need, and ask the patient how they want you involved while they are well enough to say.

You are the one who sees the changes from the outside.

Confusion. NCI describes delirium as a confused mental state that includes changes in awareness, thinking, judgment, sleeping patterns, and behavior. Symptoms "usually occur suddenly (within hours or days) over a short period of time and may come and go." It does not always look agitated. In the hypoactive (quiet) form, "the patient seems sleepy, tired, or depressed."

NCI notes that people with delirium may be more likely to fall. They may be unable to control their bladder and bowels, and more likely to become dehydrated. Their confused state may also make it hard to tell anyone what they need. If confusion comes on suddenly, is the first time they have been confused for no clear reason, or comes with fever, fast breathing, cold clammy skin or faintness, call 911. MedlinePlus lists sudden confusion as a reason to call 911 (MedlinePlus). Do not drive yourself. Confusion that has been building slowly still needs a call to the care team right away, at any hour.

Fever they are shrugging off. Take the temperature yourself rather than accepting "I feel fine." During chemotherapy, a temperature of 100.4 °F (38 °C) or higher means calling your care team right away, at any hour. One reading is enough. Do not wait an hour or check again first. CDC says to call your doctor immediately at that number and calls a fever during chemotherapy a medical emergency (CDC). NCI's patient page prints the same 38 °C as 100.5 °F, a rounding of 100.4, so do not hold off for the extra tenth. If your team has given you a lower number, use theirs. If you are unsure, call anyway. No oncology service minds being called.

NCI says to call the health care team for signs of infection. That is because infections during cancer treatment can be life threatening and require urgent medical attention. Its other listed signs are:

• chills
• cough or sore throat
• diarrhea
• ear pain, headache or sinus pain, or a stiff or sore neck
• skin rash
• sores or white coating in the mouth or on the tongue
• swelling or redness, especially where a catheter enters the body
• urine that is bloody or cloudy, or pain when urinating

Call your care team right away, at any hour, if they are on chemotherapy and have chills, a new or changed cough, a sore throat, diarrhea, a stiff neck, pain or burning when urinating, or redness or swelling around a catheter, port or wound. CDC lists these as signs of infection to call about right away (CDC).

Do not give something for the fever first. NCI says to talk with the doctor or nurse before taking medicine — even aspirin, acetaminophen (such as Tylenol), or ibuprofen (such as Advil) — for a fever.

Falls, weakness, and not drinking. The American Cancer Society lists reasons to call the cancer care team or get medical attention right away:

• fever or lower body temperature than normal
• chills or sweats
• cold, clammy, or pale skin
• cough or trouble breathing
• new or worse confusion
• feeling dizzy, lightheaded, or falling down
• chest pain
• not able to get out of bed for more than 24 hours
• not having to pee, or peeing only very little amounts that are dark orange or brown

Signs of septic shock mean emergency care, not a callback. Sepsis is a dangerous reaction to infection. ACS says it can turn quickly into septic shock, its most severe stage. ACS lists these signs of septic shock: a fast heart rate, low blood pressure, confusion, pale, cold, or clammy skin, nausea, and breathing problems.

You do not have to win that argument. Report what you saw and let the nurse decide: "He has not been out of bed since yesterday morning." Facts and times, not conclusions. You can say on the call that the patient disagrees with you. Teams hear that often, and it counts against no one.

NCI advises keeping a notebook of the person's medical information, including the dates of procedures and tests, and a list of the names and doses of medicines and how often they are taken. In a night-time call, that notebook is most of what you will be asked for.

This page cannot diagnose a symptom or set an emergency threshold for anyone. Follow the team's written instructions, and do not change prescribed medicines, treatment, activity limits, or devices on your own.

If someone may be in immediate danger, contact local emergency services. For thoughts of suicide or self-harm in the United States, call or text 988; elsewhere, use the local crisis service.

• National Cancer Institute, When Someone You Love Is Being Treated for Cancer: https://www.cancer.gov/publications/patient-education/when-someone-you-love-is-treated.pdf
• National Cancer Institute, Support for Caregivers of Cancer Patients: https://www.cancer.gov/about-cancer/coping/caregiver-support
• National Cancer Institute, Delirium: https://www.cancer.gov/about-cancer/treatment/side-effects/delirium
• National Cancer Institute, Infection and Neutropenia During Cancer Treatment: https://www.cancer.gov/about-cancer/treatment/side-effects/infection
• American Cancer Society, Managing Infections and Sepsis: https://www.cancer.org/cancer/managing-cancer/side-effects/infections/managing-infections-and-sepsis.html
• American Cancer Society, Fevers: https://www.cancer.org/cancer/managing-cancer/side-effects/infections/fever.html
• MedlinePlus (National Library of Medicine), Cancer treatment - preventing infection: https://medlineplus.gov/ency/patientinstructions/000913.htm
• CDC, Fever: https://www.cdc.gov/cancer-preventing-infections/patients/fever.html
• CDC, Signs and symptoms of infection: https://www.cdc.gov/cancer-preventing-infections/patients/symptoms.html
• MedlinePlus (National Library of Medicine), Confusion: https://medlineplus.gov/ency/article/003205.htm