Managing Pain During and After Cancer Treatment

Having cancer does not mean you will have pain. The National Cancer Institute puts it this way: "Having cancer doesn't mean that you'll have pain. But if you do, pain can usually be controlled with pain medicine and non-drug approaches." NCI's Cancer Pain PDQ summary says it more simply still: "Pain can be controlled in most people who have cancer."

NCI describes three sources. Cancer itself, if a tumor presses on nerves or other parts of your body. Treatments and tests, such as surgery or bone marrow aspiration. And side effects of treatment — mouth sores, peripheral neuropathy, or skin reactions.

NCI names the common patterns: acute pain, sharp and quick to come on; chronic pain, usually lasting more than three months; and breakthrough pain, which arrives suddenly while you are already on medicine for chronic pain and "may happen even when you're taking the correct amount of pain medicine."

Many people do not tell their team how much pain they are in. NCI's PDQ summary names this when discussing undertreatment in older adults, listing among its causes that "they do not report their pain" and that they "are unable to talk about their pain."

Enduring it quietly makes things worse. NCI: "Tell your health care team how the plan to control pain is working. Trying to 'deal with' the pain can make it harder to control in the future."

And on whether pain is simply part of the deal, NCI is unambiguous: "Pain is not something that you have to 'put up with.'"

Your team can only treat what you describe. NCI says to be as specific as you can, and lists the questions you are likely to be asked:

• Where do you feel pain?
• What does the pain feel like — is it sharp, burning, shooting, or throbbing?
• Does the pain come and go, or is it constant?
• When does it start, and how long does it last?
• How bad is the pain, on a scale of 1 to 10, where "10" is the most pain and "1" the least?
• What helps lower the pain? What makes it worse?
• Does the pain interfere with eating, sleeping, exercise, or other daily activities?
• How does pain affect your mood and mental health?

NCI suggests tracking pain levels and the medicine you took, in a notebook or a phone app.

Call your doctor or nurse if you feel new pain, if your pain is not decreasing with medicine, or if you have side effects from it.

NCI lists over-the-counter medicines such as aspirin, acetaminophen (Tylenol), ibuprofen (Advil), or naproxen (Aleve); prescription medicines including antidepressants, antiseizure medicines, muscle relaxants, or steroids; and opioids, also called narcotics, for moderate to severe cancer pain.

On timing, NCI is specific: take the prescribed amount at the scheduled time, and "don't wait until your pain gets bad before taking pain medicine. If you wait to take your medicine, the pain may take longer to go away, or you may need to take more medicine."

Also: "Never stop taking your pain medicine without first talking to your doctor." Stopping abruptly can cause withdrawal — anxiety, sweating, nausea, and vomiting.

NCI also names non-drug approaches used alongside medicine: acupuncture, biofeedback, distraction, guided imagery, hypnosis, and meditation.

This is where fear stops people asking for relief. All three definitions are NCI's:

Drug tolerance "is a condition that happens when your body gets used to medicine." Your doctor may then increase the dose or prescribe a different medicine.

Physical dependence "is a condition in which a person takes a drug over time and has unpleasant physical symptoms if the drug is suddenly stopped, or the dose is significantly reduced." NCI notes it can happen with chronic use "even when taken as instructed."

Addiction "involves compulsive drug seeking behavior and the inability to stop taking the drug, despite harmful consequences."

Then the sentence worth carrying into the clinic:

"It's common for people with cancer to worry about becoming addicted to pain medicines. Know that needing a higher dose of pain medicine or having symptoms when the dose is decreased or stopped is not the same as addiction."

NCI adds that your doctor will carefully prescribe and monitor your medicine so your pain is safely treated, and that "most people with cancer who take strong pain medicine, such as opioids, use them safely and effectively."

Asking for pain relief does not make you a drug seeker. It gives your team what they need to do their job.

• Call 911 or go to an emergency department if someone taking an opioid cannot be woken, is breathing slowly or making choking or gurgling sounds. The American Cancer Society describes these as signs of overdose. Get help the same way for swelling in the throat, hives, or sudden trouble breathing after a dose.
• Call your care team the same day if pain arrives that you have not had before, or the dose you were prescribed has stopped touching it. NCI's instruction is to call for new pain, for pain that is not easing with medicine, and for side effects from the medicine.
• Call your care team within a day or two if the medicine still leaves you too drowsy for ordinary activities after about a week on it, or if constipation, sickness, or fogginess is making you skip doses. Never stop the medicine yourself first.

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• National Cancer Institute: Pain and Cancer. https://www.cancer.gov/about-cancer/treatment/side-effects/pain
• National Cancer Institute: Cancer Pain (PDQ) — Patient Version. https://www.cancer.gov/about-cancer/treatment/side-effects/pain/pain-pdq
• American Cancer Society: Opioid Pain Medicines for Cancer Pain. https://www.cancer.org/cancer/managing-cancer/side-effects/pain/opioid-pain-medicines-for-cancer-pain.html