Creating a Cancer Symptom and Call Plan

Your team sets this line, so ask them to draw it explicitly. Which of these means calling you, and which means going straight to the emergency department? NCI is clear that infections during treatment require urgent medical attention, and that fecal impaction and bowel obstruction require immediate medical care. If your team has told you to go to the emergency room for fever, go. Do not wait for a callback. Tell the front desk you are on cancer treatment.

This page cannot diagnose a symptom or set an emergency threshold for you. Follow your team's written instructions. Do not change prescribed medicines, treatment, activity limits, devices, or wound care 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.

This draft discusses urgent or high-risk decisions. It is excluded from public search until a qualified clinician reviews the wording. Follow the patient's own care plan now.

A symptom and call plan is one page that answers a single question before you need it. This is happening: who do I call, and how fast? Below is how to build one, with the thresholds the National Cancer Institute (NCI) publishes. Your own team's instructions always come first.

NCI suggests asking your care team directly: "What symptoms or problems should I call you about?" Ask before treatment starts, and again whenever a drug changes. Write the answers in your team's own words, including any numbers. Their instructions may be stricter than anything published, because they know your counts, your drugs, and your history.

Most of these come from NCI's side-effect pages. The fever threshold is worded slightly differently by different bodies, so all of those wordings are below. Copy the ones that apply to your treatment, and let your team correct them.

Fever and infection. NCI says to call your health care team if you have signs of infection. It warns that infections during cancer treatment can be life-threatening and require urgent medical attention. The fever threshold itself is worded slightly differently depending on where you read it, so write down all four, and then write down your team's.

• National Cancer Institute: a "fever of 100.5°F (38°C) or higher."
• American Cancer Society: "For people with cancer, a fever is defined as a temperature of 100.4°F (38°C) or higher for at least one hour."
• MedlinePlus (NIH): a "fever of 100.4°F (38°C) or higher."
• The clinical definition of febrile neutropenia: "a single oral temperature greater than or equal to 101 F (38.3 C) or a temperature greater than or equal to 100.4 F (38 C) for at least an hour, with an absolute neutrophilic count (ANC) of less than 1500 cells/microliter."

Three of these are effectively the same reading: 38.0°C is exactly 100.4°F, and NCI's 100.5°F sits a tenth of a degree above it. The febrile neutropenia definition is different — 101°F is a genuinely higher temperature, and it is a diagnostic definition for clinicians, not a threshold for you to wait for at home. When the numbers differ, the lower one is the safer one to act on. ACS's advice is the one to act on: "Ask your cancer care team what temperature they consider to be a fever. It might be different depending on your situation, but 100.4°F (38°C) is often used." Put your team's number on your page, and use it. If your temperature lands between these figures and you are unsure, call. No oncology service minds being called.

The other signs of infection NCI lists: 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 your mouth or on your tongue; swelling or redness, especially where a catheter enters your body; urine that is bloody or cloudy, or pain when you urinate.

One more instruction belongs on your page in full. NCI says to talk with your doctor or nurse before taking medicine, even aspirin, acetaminophen (such as Tylenol), or ibuprofen (such as Advil), for a fever. These medicines can lower a fever but may also mask or hide signs of a more serious problem. Take your temperature first, and tell your team the number.

Bleeding. NCI says to call your doctor or nurse for bleeding that does not stop after a few minutes; bleeding from your mouth, nose, or when you vomit; vaginal bleeding when you are not having your period; urine that is red or pink; stools that are black or bloody; or period bleeding heavier or longer than normal. Also call for bad headaches or changes in how well you see, or if you feel confused or very sleepy.

Constipation. NCI says to tell your doctor or nurse if you are having constipation, so you can get treatment as soon as possible. It lists two or fewer bowel movements in one week as a sign. It warns that chronic constipation can lead to fecal impaction or bowel obstruction, two potentially life-threatening conditions that require immediate medical care.

Pain. NCI says to contact your doctor or nurse if you feel new pain, if your pain is not decreasing or going away with pain medicine, or if you have side effects from the pain medicine.

Swelling in an arm or leg. NCI says to contact your doctor if you notice heaviness, swelling, or other signs of lymphedema. Call right away if you have a fever or other signs of cellulitis: pain, tenderness, redness, and swelling, with skin that feels warm to the touch.

Diarrhea. NCI says to tell your doctor or nurse if you are having diarrhea, and to ask the health care team when you should call if it lasts or becomes more severe. It does give one figure worth writing down: grades 3 and 4 diarrhea, meaning "seven or more bowel movements above your normal daily number," "can be life-threatening and may require treatment in a hospital." Ask your team for the number they want you to call at, and write it down.

Daytime and after-hours numbers are often different. Ask the clinic for both. Ask who answers after hours, how long a callback takes, and what to do if none comes. The number is often on your discharge paperwork, appointment card, or patient portal. Write it where it does not depend on a charged phone.

• Diagnosis, current treatment, and the date of the last dose.
• Your temperature, taken just before calling.
• The symptom: what it is, when it started, and what has changed.
• A current list of medicines, doses, and allergies.
• Your pharmacy, and the hospital you would go to.
• A pen. You will be given instructions.

NCI suggests keeping a record of your bowel movements, so your team can see what is normal for you. For pain, NCI describes rating it on a scale of 1 to 10, where 10 is the most pain and 1 the least. It suggests writing down your pain levels and the medicine you took, using a notebook, a chart from your nurse, or a phone app. A few dated lines beat trying to remember mid-call.

• National Cancer Institute — Side Effects of Cancer Treatment
• National Cancer Institute — Infection and Neutropenia During Cancer Treatment
• National Cancer Institute — Bleeding and Bruising (Thrombocytopenia)
• National Cancer Institute — Constipation
• National Cancer Institute — Cancer Pain
• National Cancer Institute — Lymphedema
• National Cancer Institute — Diarrhea
• National Cancer Institute — Nausea and Vomiting
• American Cancer Society — Fevers
• MedlinePlus (National Library of Medicine) — Cancer treatment: preventing infection
• NCBI Bookshelf (StatPearls) — Febrile Neutropenia