“How’s your pain?” Nearly two weeks had passed since Henry Garcia had numbing medicine injected straight into his celiac plexus. That’s the sensitive bundle of nerves square in the middle of the abdomen, but Garcia knew it simply as the spot where a golf ball–size pancreatic tumor was relentlessly pressing down.
“A lot better. I feel a lot better,” Garcia, 57, told Devalingam Mahalingam, his medical oncologist at the University of Texas Health Science Center in San Antonio.
Seated in an exam room on a February morning, Garcia reported that on a 0-to-10 scale, his pain was barely a two. Earlier that month, his discomfort had been off the charts despite the morphine he had been taking since his stage IV diagnosis in November 2011. Garcia had been a professional wrestler, so he was no stranger to punishing pain. But the tumor pain was completely different. It felt like a bullet to the back.
The injected nerve block wasn’t intended to be a permanent fix. “But,” Mahalingam told Garcia, “we can always go back and reinject that area if the pain comes back.” Sitting nearby, Garcia’s wife, mother and brother all breathed a sigh of relief. It would be a short reprieve—Garcia died of his disease on April 5, 2012—but the pain relief he received during his final months was appreciated.
Of the 1.6 million people diagnosed with cancer each year in the U.S., as many as 60 percent experience pain during treatment. Yet researchers have found that nearly half of these patients never find relief. How and where cancer pain strikes can vary. As with Garcia, it can occur when a tumor presses on nearby nerves or organs. Bones infiltrated by cancer can also bring on bouts of agony, as can chemotherapy drugs that pummel tumors but also damage nerves in the process. All too often, and despite the availability of numerous medications and non-drug therapies, this pain is often undertreated or not treated at all.
“Suffering from pain is one of the top reasons people are not able to undergo their treatment,” says Rebecca Kirch, the director of quality of life and survivorship at the American Cancer Society. “Treating symptoms maximizes their cancer therapy, so it is part of their lifesaving care.”
Restricted Access to Relief
Restricted coverage of opioids could jeopardize treatment for cancer patients, some patient advocates say.
An increasing number of insurance carriers have started limiting opioid coverage, even though a doctor has prescribed the dosage and regardless of the underlying condition. These actions are perceived to be a response by insurance companies to reports about pain medicine abuse and illegal distribution. But patient advocates say these caps are arbitrary and create access issues that jeopardize treatment.
“[There are] hundreds of legislative and regulatory activities in the states restricting patient access to the pain medicines cancer patients need to remain stable and functioning,” says Rebecca Kirch, the director of quality of life and survivorship at the American Cancer Society (ACS). In addition to restricting dosages, some states are trying to ban certain pain medicines altogether or require patients to see pain specialists before certain dose levels can be exceeded, Kirch says. The ACS Cancer Action Network is currently monitoring and working to halt state legislative initiatives that could impede cancer patients’ access to pain medicines.
Kirch suggests that patients who are having difficulty obtaining their prescriptions contact the Patient Advocate Foundation for support.
An Undertreated Problem
The first national guidelines on managing cancer pain were developed in the early 1990s. Yet more than two decades later, many people with cancer pain continue to struggle. There are many reasons. Some patients have oncologists who haven’t been trained to manage pain. Other patients never get their prescriptions filled out of fear they might develop an addiction. And still others never tell their doctors they’re in pain.
Find cancer-related pain information and practical tools from these resources.
How to overcome these obstacles? Better physician education is one starting point: A recent national survey found that many oncologists rate their medical school training in cancer pain management as inadequate. And after medical school, as neurologist Russell Portenoy notes, the time oncologists must spend learning about the expanding number of new cancer treatments often prevents them from gaining necessary skills in pain management. “They’ve not been keeping up,” says Portenoy, the chair of the pain medicine and palliative care department at Beth Israel Medical Center in New York City.
To offer a fix, professional groups like the American Society of Clinical Oncology and the Oncology Nursing Society now provide continuing education courses in pain management. And as a backstop, palliative care specialists—doctors specifically trained to treat pain—are now more available to help get cancer pain under control.
In some instances, however, patients may fear that telling a doctor about pain will take the doctor’s focus away from the big picture: survival. “For the oncologist and patient, the focus is all on treatment of the cancer,” explains Betty Ferrell, a nurse-researcher at City of Hope in Los Angeles. “Even if the patient is having terrible pain, the patient’s priority is, ‘What tests do I need? What drugs can I get? What are you going to do to help my disease?’”
Yet unaddressed pain can interfere with sleep and cause depression, says Ferrell, and it can lead to decreased appetite and reduced physical and social activity. In some instances, patients can be in so much pain that they are unable to get to the hospital to finish treatment. “Pain is really a whole-person experience,” says Ferrell. “If we can control it, patients do better.”
Types of Pain
There are multiple types of pain that require different treatments.
Not all pain is the same. It can be temporary or long lasting, mild or severe. Cancer itself may cause pain, as can treatment.
Agonizing pain that lasts only a short time is called acute pain. It typically manifests suddenly, is often the result of cancer treatments, and is typically treated with non-steroidal anti-inflammatory drugs or opioids.
Pain that is continuous and that lasts for more than a few weeks is considered chronic. It is typically caused by side effects of treatment or by a tumor pressing on nerves or an organ, and may be treated with a long-acting opioid.
Nerve pain, which can be caused by a tumor or certain cancer treatments, is often treated with antidepressants, anticonvulsants or nerve blocks, while breakthrough pain—brief, severe flashes of pain that can occur in people suffering from chronic pain—is typically treated with fast-acting pain relievers.
Non-drug strategies, such as acupuncture, exercise, physical therapy and biofeedback, can be used in addition to or instead of pain medications to help relieve pain.
Educating Patients on Pain Management
Many large cancer centers, such as M. D. Anderson Cancer Center in Houston and Memorial Sloan-Kettering Cancer Center in New York City, boast their own pain management programs. To help patients who don’t live near such services, researchers are now testing programs that local oncologists could implement in their own communities to encourage patients to talk about pain and take the steps necessary to keep their pain under control.
In Christine Miaskowski’s pain control study, PRO-SELF, at the University of California, San Francisco (UCSF), more than 200 cancer patients are encouraged to keep daily pain logs about where and when their pain strikes and how the episodes affect their day. “Improving quality of life and optimizing function—I think that’s more important than the silly 0-to-10 number on a pain scale, which is relative to the individual and is going to fluctuate quite a bit,” says Miaskowski, a research scientist and professor in the physiological nursing department at UCSF.
Researchers have also become aware that cultural and ethnic backgrounds can influence how people respond to pain. Take Garcia, the retired wrestler in Texas who brushed off intense pain in his belly for three weeks before finally seeing a doctor and receiving a cancer diagnosis.
“Machismo,” says Garcia’s wife, Dani, explaining the macho culture she sees in many Latino men. “It’s directly tied to their being a man. He’s supposed to work, provide for his family, protect his family. This disease—the pain—doesn’t fit into that.”
Others view pain differently. Some Arab Americans with cancer, for example, believe pain was given to them by Allah, and that they must therefore accept it, says April Vallerand, an associate professor of nursing at Wayne State University in Detroit who studies pain and pain control perception. Many Chinese Americans prefer integrative medicine approaches like acupuncture or herbs, she notes. They may seek treatment from an acupuncturist rather than or in addition to their oncologist.
Start the Conversation
These questions can help you to start a conversation about pain with your doctor—and keep it going.
- What’s causing my pain?
- What medications do you recommend to alleviate my pain, and what are their side effects?
- Can I become dependent on these pain medications?
- How long should pain relief last with these medications?
- If I’m still experiencing pain, should I take more of the same drug or try a different medicine?
- What are other options instead of, or in addition to, medication?
- If you are unable to manage my pain, will you refer me to a palliative care specialist?
Vallerand’s research published in Pain Medicine in 2005 found that black cancer patients often feel more powerless against pain than white patients. In response, she developed a pain management program specifically for black cancer patients. To date, more than 90 Detroit-area men and women with cancer pain have been enrolled in her Power Over Pain program, which explains the importance of taking medicine on a schedule instead of waiting until pain is severe, and uses role-playing to help patients learn how to advocate for better pain management with their doctors.
“When [a patient goes] in and says, ‘It hurts really bad,’ that doesn’t give much information,” Vallerand explains. “Whereas if [a patient says] ‘The pain wakes me at night,’ or ‘I can’t even walk to the end of my driveway,’ that helps the doctor understand how bad it is.”
Starting these conversations about pain is a necessary first step. But patients also need clear directions on how to take pain drugs—and how to stop.
Treatment With Pain Medications
A range of pain medications are used in cancer care.
Many patients fear they will become addicted to their pain medication. But doctors say the risk of addiction is low in people who do not have a history of addiction and who take their medicine as prescribed. These pain medications are commonly used in cancer care:
Non-steroidal anti-inflammatory drugs (NSAIDs) are medications used to treat pain and inflammation.
Common NSAIDs include:
- Celebrex (celecoxib)
Opioid pain medicines are used to treat moderate to severe pain. Common opioids include:
Pain medicines are often combined to make medications like Percocet (oxycodone and acetaminophen), Percodan (oxycodone and aspirin) and Vicodin (hydrocodone and acetaminophen).
Learn more about these drugs, including their side effects, from the American Cancer Society website.
Diana Brogoitti of San Francisco could have used that extra guidance. Diagnosed with multiple myeloma in 2007, Brogoitti was prescribed a fentanyl patch following surgery in 2011 to repair cancer-weakened bones in her spine. Her oncologist briefly mentioned she could stop the patch after she felt better, she says, but she doesn’t remember him saying much else.
Fentanyl is a powerful opioid and a patient must reduce its use gradually. Suddenly stopping the drug can result in anxiety, agitation, flulike symptoms, insomnia and other symptoms. Unaware of this, Brogoitti quit cold turkey, triggering a debilitating 10-day withdrawal. “It was a disaster,” she says. “I emotionally fell apart.”
Brogoitti, who has pain and numbness in her hands and feet because of chemotherapy-related nerve damage, is a participant in the PRO-SELF study. She recently started Neurontin (gabapentin), an anti-seizure drug that has been shown to also reduce pain, but stopped taking it after a bout of pneumonia. At her doctor’s direction, she’s now taking a supplement and doing water aerobics to help with pain management. She wants to start taking walks. “Not just down the block,” she says, “but around the block or in the park.”
That February day back in San Antonio, Garcia’s doctor ended his appointment by explaining the best way to cut back on the morphine he had been taking, now that the nerve block had taken effect. Garcia had been going head-to-head with the pain for months, thinking he could tough it out. Looking back, his family is thankful that the wrestler who never let the crowd see him wince had asked for help—and had found some relief.
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