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 can be life-threatening and 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, call 911. For thoughts of suicide or self-harm, call, text or chat 988, the 988 Suicide and Crisis Lifeline.

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 signs the National Cancer Institute (NCI) and CDC publish. 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. Copy the ones that apply to your treatment, and ask your team to check 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.

Write the fever number at the top of your page. CDC says: "Call your doctor immediately if you have a temperature of 100.4°F (38°C) or higher." MedlinePlus uses the same number. CDC explains that during chemotherapy a fever may be the only sign of a serious infection. Keep your team's daytime and after-hours numbers next to it.

Ask your team whether they want you to call at a different temperature for you, and write their answer down. If you are unsure, call.

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. It gives 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 notes are easier than trying to remember during a 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
• Centers for Disease Control and Prevention — Fever and Cancer Treatment
• 988 Suicide & Crisis Lifeline
• MedlinePlus (National Library of Medicine) — Cancer treatment: preventing infection