Tracking Cancer Pain Without Changing Medicines

Your report of pain is the evidence. NCI's summary for clinicians is blunt about it: "Patient self-report is the standard of care for evaluating pain." No scan and no blood test can measure it for you.

That cuts both ways. If the record is vague, the plan is vague. NCI notes that "failure to assess pain adequately leads to undertreatment," and that in one study a third of patients with mild pain went on to moderate or severe pain.

A diary is not homework. It is the difference between "it still hurts" and "it is a 7 by four in the afternoon, three hours after the morning dose, and it stops me walking to the bathroom."

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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.

The number does one job well. It tracks change in one person over time. A move from 8 to 4 after a dose says something useful.

The number does other jobs badly. It does not compare between people. It does not say what kind of pain it is. It does not say what the pain stops you doing. Two people can both say "6" and need completely different treatment.

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, which NCI's clinician summary builds from pain history, intensity, quality, location, and the pattern of spread. 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.

That last one carries more weight than people expect. Sleeping, eating, walking, washing, and working are the outcomes the team is actually trying to protect.

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

These are not decoration. Burning, shooting, or tingling pain often points to nerve pain, which responds to different medicines than a deep, aching bone pain. Getting the adjective right can change the prescription.

NCI's clinician summary also asks about what comes with the pain: sleep problems, fatigue, low mood, and anxiety. Record those in the same place. They are part of the picture, not a separate complaint.

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."

Give it its own line, because the pattern is the message.

• Flares at the same time each day, just before the next dose, may mean the background dose is wearing off too soon.
• Flares tied to standing, coughing, or turning over in bed suggest a movement trigger.
• Flares with no pattern at all are still worth reporting.

Note whether you used a rescue dose, and whether it worked, and how many you used that day. The rescue count is one of the numbers oncology teams look for first.

NCI's booklet names constipation, drowsiness, and nausea as the common ones. Constipation with opioids does not usually fade on its own, so record bowel movements as well as pain.

Nobody is grading you. Under-reporting side effects is one of the main reasons people quietly skip doses, and skipped doses then look like a medicine that is not working.

Write down doses you missed, took late, or chose not to take, and why. Common reasons are real ones: 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 is clear that scheduled dosing works better than chasing pain: "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 happening, the team needs to know why, not just that.

These three words get used as if they mean the same thing. They do not, and confusing them leads people to accept pain they do not have to accept.

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 responds less to the same dose over time. Addiction is compulsive use that continues despite harm.

NCI also states the balanced fact directly: "although most people who are prescribed opioids for cancer pain use them safely, some may become addicted to opioids." Both halves of that sentence are true. The clinician summary asks teams to review personal and family history of substance use, and to keep it in mind. That is a reason for a frank conversation, not a reason to stay in pain.

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 is a warning of something structural. UK national guidance published on the NIH's NCBI Bookshelf lists spinal warning signs in people with cancer. Contact the team immediately for:

• new weakness in an arm or leg
• numbness or loss of sensation
• difficulty walking
• new problems with bladder or bowel control
• radicular pain, meaning pain that shoots down an arm or a leg along the path of a nerve

The same guidance says to make contact within 24 hours for:

• pain in the middle or upper spine
• lower spinal pain that keeps getting worse
• severe spinal pain that never lets up
• spinal pain that is worse when coughing, sneezing, or straining
• spinal pain at night that stops you sleeping
• tenderness over one particular spot on the spine

Those signs can mean pressure on the spinal cord. Waiting for the next appointment is not the right move.

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

Caregivers should log what they see: grimacing, guarding a body part, restlessness, groaning, resisting being moved, or refusing food. Then log whether it settled after a dose. That before-and-after is the observation the team can act on.

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

Do not change the dose, the timing, or the combination on your own, and do not add over-the-counter painkillers without asking. Some contain acetaminophen, which is already inside many prescription opioid tablets, so doubling up is easier than it looks.

Bring the record. Ask for the plan to change. That is the safe order.

• 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
• Metastatic Spinal Cord Compression: Early Detection — NICE Clinical Guidelines, on NCBI Bookshelf