Tracking Cancer Pain Without Changing Medicines

This page is for people with cancer pain, and caregivers, who want to keep a pain record. It covers what to write down, how to use the 0 to 10 scale, and when to call instead.

Your report of pain matters most. NCI's summary for clinicians says: "Patient self-report is the standard of care for evaluating pain."

NCI also notes that "failure to assess pain adequately leads to undertreatment." In one study of patients seen by a palliative care team, a third of those with mild pain had moderate to severe pain by their first follow-up visit. NCI's booklet says keeping a record of your pain will help create the best pain control plan for you.

A diary can turn "it still hurts" into "it is a 7 by four in the afternoon, three hours after the morning dose, and it stops me walking to the bathroom."

NCI describes the numeric rating scale as rating pain "on a numeric rating scale of 0 to 10, with 0 defined as no pain and 10 defined as the worst pain imaginable." NCI's patient summary gives the bands: 0 is no pain, 1 to 3 is mild, 4 to 6 is moderate, and 7 to 10 is severe.

NCI calls the scale "highly subjective," but says it may help the care team gauge how your pain is doing. It can show changes in your own pain, such as how much a medicine lowered it.

The number does not say what kind of pain it is, or what the pain stops you doing. So write the number, then write the rest.

NCI's booklet Cancer Pain Control asks people to log the medicine side of this: "when you take pain medicine, name and dose of the medicine you're taking, any side effects you have, how much the medicine lowers the pain level, how long the pain medicine works."

Add the pain side. NCI's clinician summary says a pain assessment measures where the pain is, how strong it is, what it feels like, and other factors. A full entry has eight parts:

1. Time. When it started and how long it lasted.
2. Place. Where it is, and whether it travels anywhere else.
3. Number. The 0 to 10 rating at its worst and at its best.
4. Quality. What it feels like, in your own words.
5. Triggers. What sets it off, and what eases it.
6. Medicine. What you took, the dose, and the clock time.
7. Effect. How far the number dropped, and how long that lasted.
8. Function. What the pain stopped you doing today.

Function matters. NCI's patient summary says the team may ask whether pain gets in the way of daily life, such as when you eat, bathe, or move around. The booklet adds sleeping and working.

NCI's booklet suggests describing pain as "sharp, dull, throbbing, constant, burning, or shooting."

These words help the team understand the pain. NCI says a full pain assessment looks at the quality of the pain as well as where it is and how strong it is. NCI also notes that nerve problems, such as peripheral neuropathy, can cause pain, numbness, and tingling.

NCI's clinician summary also asks about what comes with the pain: sleep problems, fatigue, depression, and anxiety. Record those in the same place.

NCI defines breakthrough pain as "a transitory increase or flare of pain in the setting of relatively well-controlled acute or chronic pain." The booklet adds that it "can occur by itself or in relation to a certain activity."

Giving it its own line can help the team see a pattern.

• NCI's booklet says breakthrough pain may happen as the current dose of your medicine is wearing off. Note if flares come just before the next dose.
• NCI says some breakthrough pain is linked to activities such as movement. Note if flares come with standing, coughing, or turning over in bed.
• Flares with no pattern at all are still worth reporting.

Note whether you took an extra dose your doctor prescribed for flares, whether it worked, and how many you used that day. Ask your care team what the pattern means.

NCI names nausea, drowsiness, and constipation as the most common side effects of opioids. NCI's booklet says almost everyone taking opioids has some constipation, and that it "will only go away if it's treated." So record bowel movements as well as pain.

NCI's booklet says it is important to talk to your doctor often about any side effects. If needed, the doctor can change your medicines or doses.

Write down doses you missed, took late, or chose not to take, and why. Reasons might be: it made me too sleepy to talk to my grandson, I had run out, the pharmacy would not fill it early, I was afraid of it. NCI's booklet says to tell your team if you are taking more or less of the pain medicine than prescribed.

NCI's booklet says to "take your pain medicine on schedule to keep the pain from starting or getting worse. This is one of the best ways to stay on top of your pain." If the schedule is not working for you, tell the team why.

These three words get used as if they mean the same thing. They do not.

NCI's patient summary explains that "tolerance of an opioid is a physical dependence on it. This is not the same as addiction (psychological dependence)." Tolerance means the body stops responding as well to the same dose over time. NCI's booklet says addiction includes compulsive drug seeking and not being able to stop despite harm.

NCI also states: "although most people who are prescribed opioids for cancer pain use them safely, some may become addicted to opioids." NCI's clinician summary says a pain assessment includes a review of personal and family history of substance use. NCI's booklet says your doctor will monitor your opioid doses so you are treated for pain safely, and that controlling your pain is one of the goals of your care.

NCI's booklet says to tell your doctors right away if "everyday actions, such as coughing, sneezing, moving, walking, or standing, suddenly causes new pain or your pain gets worse." It adds unusual rashes and bowel or bladder changes to that list, and says to always call if you have problems breathing.

Some pain in cancer can be a warning sign. The American Cancer Society says cancer that has spread to the spine can press on the spinal cord. This is called spinal cord compression. ACS lists these symptoms:

• Back pain, sometimes with pain going down one or both legs.
• Numbness of the legs or belly.
• Leg weakness or trouble moving your legs.
• Loss of control of urine or stool, or problems passing urine.

ACS says spinal cord compression is an oncology emergency. If it is not treated right away, the person can become paralyzed. If you notice symptoms like these, ACS says to call your doctor right away or go to the emergency room. Do not wait for the next appointment.

If someone taking opioid pain medicine cannot be woken, or their breathing turns slow, shallow or irregular, call 911 or your local emergency number.

Self-report is the standard, but some people cannot give one. NCI notes this can happen with cognitive problems such as advanced dementia, brain tumors, or delirium. NCI's clinician summary says pain "can be evaluated via direct observation, family/caregiver report, and evaluation of response to pain relief interventions." It names tools such as the Faces Pain Scale for this.

Caregivers can write down behaviors that might signal pain, and whether they settled after a dose. Ask the care team which signs to watch for.

Tracking pain and changing pain medicine are two different jobs. Keep to the first one.

NCI's booklet says to take your medicines as directed, and not to save them for later or change the dose. It says not to increase the dose on your own, and not to stop opioids suddenly. It also says to check with your doctor before taking any over-the-counter pain medicine. Always tell the doctor if you take acetaminophen, because it is sometimes in other medicines, so you may take more than you should.

Bring the record, and ask your care team to change the plan if it is not working.

• Cancer Pain (PDQ) — Patient Version — National Cancer Institute
• Cancer Pain (PDQ) — Health Professional Version — National Cancer Institute
• Cancer Pain Control: Support for People With Cancer — National Cancer Institute
• Bone Metastases — American Cancer Society