IN 2009, MIKE RICHARDSON was diagnosed with melanoma, an aggressive skin cancer, following removal of a suspicious-looking mole near his collarbone. He had surgery to remove the area around the mole, and all appeared well. But two years later, a biopsy of a swollen lymph node in his neck confirmed the cancer had returned. To corral the cancer, Mike had surgery to remove that node and others nearby, followed by radiation. That’s when the pain began.

“Mike started having general soreness, and then he started to have some pain, and then that pain began to become extreme,” recalls his wife, Eryn Richardson. “It was unbearable. He couldn’t sit or lay down. He would say ‘everything hurts.’ ” The pain would make the 40-mile drive from their home in Black Diamond, Alberta, Canada, to the Tom Baker Cancer Centre in Calgary seem even longer. Yet when her husband, who died in March 2013, told his oncologist about his discomfort, the physician had little to offer, Richardson says. “Her response was ‘just take some Tylenol or Advil,’ ” she says. “She didn’t seem concerned.”

But to those close to him, it was clear Mike was not doing well. After two months of chemotherapy, the 50-year-old had dropped 50 pounds, and his clothes hung on his 6-foot-plus frame. “He wasn’t the same person,” says Richardson. “He didn’t have a lot of go to him anymore and he didn’t have any drive. And he was frustrated because he didn’t feel his oncologist was taking his pain seriously. His complaints about pain didn’t seem to resonate with her.”

One day, following a routine appointment, a nurse handed Mike a pamphlet about support for cancer patients. Using a phone number on the pamphlet, he scheduled an appointment with a psychologist who had experience with melanoma patients. At the first meeting, the psychologist asked Mike to rate his pain on a scale of one to 10. “When Mike said eight,” says Richardson, “he was flabbergasted.”

The psychologist made an appointment for Mike at the pain clinic at the Tom Baker Cancer Centre for the following day. It took a few more weeks for the specialists there to get Mike on the right dose of the right medications. But after that, his pain was better managed. “He got his appetite back,” says Richardson, “and he began to feel more human.” Still, the Richardsons couldn’t help but wonder: Why had it taken nine months for Mike to get proper pain management?

A Common Problem

Pain and cancer frequently go hand in hand. Studies suggest between 20 and 50 percent of cancer patients are experiencing pain at the time of their diagnosis. If the cancer progresses, the discomfort often does too. About 80 percent of patients with advanced-stage cancer report moderate to severe pain. For some patients, the cancer pain may be complicated by other pain problems unrelated to their cancer. “Pain in cancer patients is not always because the cancer is getting worse,” says David Hui, a palliative care specialist and medical oncologist at the University of Texas M. D. Anderson Cancer Center in Houston. “A patient may have chronic pain syndromes even before their cancer diagnosis, or, after their diagnosis, a patient can develop pain unrelated to the cancer.”

But while pain is common in cancer patients, it’s not always easy to treat. In fact, pain management can be one of the more challen​ging areas of cancer care. Oncologists with expertise in palliative care and pain management say it is important for patients to know that cancer-related pain can be managed, but that it can take some time and may require seeing one or more pain specialists.

Oncologists are often advised to follow the World Health Organization (WHO) pain ladder and its step-by-step guidelines for managing cancer pain. (See “Follow the Ladder.”) Studies have found that using the scale can help doctors successfully manage cancer pain in about 70 to 80 percent of patients, says Eric E. Prommer, a hematologist-oncologist who directs the Inpatient Palliative Care Unit at the VA Greater Los Angeles Healthcare System. The program is affiliated with the David Geffen School of Medicine at the University of California, Los Angeles. Prommer’s article, “Pharmacological Management of Cancer-Related Pain,” published in the October 2015 issue of Cancer Control, reviews the step-by-step approach for managing chronic pain and the use of increasingly strong opioids and other pain medications based on pain severity.

To a novice, treating pain may seem straightforward. But in fact, pain management is both a science and an art that relies, says Prommer, on confidence gained from experience treating cancer pain and managing any adverse effects. Moreover, physicians also have to know what types of pain don’t respond to the medications recommended on the WHO pain ladder and when different types of treatments are needed. When physicians don’t have this expertise, says Prommer, all too often “pain is undertreated and the medications are underutilized.”

Things to Know About Pain Relief

Educate yourself about what to expect.​

Identifying the Right Dose

The overall goal of managing pain is to use the lowest dose of a drug necessary to control pain and avoid side effects. The first step of the pain ladder recommends acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs). If the pain persists or gets worse, the second step is to add one of what are considered “weak” opioids. If the pain becomes more severe, stronger opioids replace weak ones.

Choosing the right pain medication and identifying the right dose can take a while. Part of the problem is that some pain medications take time to build up in the body to effectively manage pain. In addition, some patients stop taking the medications or don’t take them according to the prescribed schedule, leaving them with a bad combination of difficult side effects and no relief.

When Mike first saw the pain doctor, says Richardson, he was told the morphine he would be given was likely to make him tired, affect his appetite, cause nausea and constipation, and keep him from sleeping well—and it did. “It was hard,” she says. “They put him on a really high dose to get the pain managed,” with the intent of then reducing it. But he stuck with the medication, she says, and “within a couple of weeks he felt better, and then when the drugs were at the right level, he could eat and became more active and became more like himself again.”

Prommer says it’s common for palliative care doctors to see patients who have had bad responses while on some pain medications and who believe they can’t take them at all, “when the problem was that they were given too big of a dose. When we use the drugs appropriately, they do well with drugs that had been a problem before.”

Although opioids are a top choice, not all pain responds to them. As an example, Prommer points to neuropathic pain, a chronic condition that develops when cancer or its treatments injure or damage nerves. In patients with this condition, increasing the dose of an opioid—which can result in more side effects—will not provide relief. However, this type of pain often will respond to drugs that reduce neuropathic pain, like Neurontin (gabapentin). Bone pain, which is common in patients whose cancer has spread to the bone, is another example. This type of pain “doesn’t always respond to an opioid,” says Prommer. Instead, “steroids or radiation or even surgery may be necessary to help relieve the pain.”

Not all doctors and other health care providers are fluent in the use of these medications. Erin McMenamin, a nurse practitioner in the radiation oncology department of the Hospital of the University of Pennsylvania in Philadelphia, has seen many patients over the years who have not been offered pain management medications that could have benefited them. For example, she has seen some patients with nerve pain who have not been prescribed Neurontin as well as some with severe abdominal pain from pancreatic or other cancers who have not been offered a celiac plexus block, 
an injection of pain medicine into or around the celiac plexus, a bundle of nerves surrounding the aorta, the main artery into the abdomen. Blocking these nerves from carrying pain signals helps reduce abdominal pain.

“Opioids alone are not the answer,” she says. “Cancer pain is multifactorial and complex,” and that’s one reason why there is often poor pain management. On top of that, “everyone is different and that is truly what people need to keep in mind. Usually there is a solution.” Sometimes it’s as easy as having a patient who can’t tolerate an opioid start on an anti-nausea drug before beginning on the pain medication. In other instances, it’s more complicated.

Danielle Nicosia is one of the more complicated cases. Diagnosed with thyroid cancer in 2012, at age 27, 
Nicosia, who lives in West Hempstead, New York, has tried multiple pain medications over the past four years. Her pain is two-pronged: She has pain from her cancer treatment—surgery to remove her thyroid and lymph nodes, followed by radioactive iodine therapy, which damaged her salivary gland. She also has peripheral neuropathy, diagnosed two months before her cancer diagnosis, that causes pain and numbness in her feet.

To date, Nicosia has cycled through eight different pain doctors and even more treatments. She can’t tolerate methadone, is allergic to morphine and suffered severe side effects when she tried Vicodin. (See “Common Pain Medications.”) In January she started taking Cymbalta (duloxetine), which can be used for treating chronic muscle or bone pain, but stopped after three weeks when she had seizures. “I’m not looking for a cure,” she says. “I just want less pain.”

Follow the Ladder

Explore the World Health Organization’s tool to help health care professionals manage pain in cancer patients.

Fear of Addiction

Addressing pain often requires use of strong medications that are known to result in addiction if used improperly. This fear of addiction can affect both a patient’s willingness to take a drug and a doctor’s willingness to prescribe it.

Richardson says addiction was one of her husband’s concerns when the psychologist discussed his pain. “When Mike talked about it, the psychologist just smiled and said, ‘At this point you need to get the pain under control and get it managed.’ ”

Doctors have concerns of their own. “I think clinicians have this fear that the patient will get addicted,” says Prommer. “We know that in patients with cancer pain, the rates of addiction are astronomically low. Even someone with a history of addiction—if certain precautions are in place—can still get opioids.” But because of that fear, “patients are underdosed.”

Dave Dier*, 59, who was diagnosed with stage IIB 
pancreatic cancer in July 2013, has been struggling 
with pain for nearly three years. Initially, the discomfort was due to a blocked bile duct. Then, it was post-surgical pain, first from the cancer surgery and then from the surgery he needed to remove the hernias that developed along his surgical incision. Now, it’s abdominal pain caused by his cancer and the chemotherapy and radiation he was given to treat it.

Dier, who lives in Grayslake, Illinois, with his wife and daughter, was initially on Norco (acetaminophen and hydrocodone combined), which he was told to take regularly. “It’s kind of a compromise between pain medication and having a life,” Dier says. As part of that balance, he says, when he was on Norco, he’d sometimes hold off taking a pill if he was expecting a visit from a friend, even when he was in severe pain. “I want[ed] to enjoy the camaraderie,” Dier says. “I [didn’t] want to doze off.” But in January 2016 as the pain became more extreme, he was started on a fentanyl patch and morphine. He’s now taking his medication regularly. “I’d rather not be in pain,” he says, “but I’m useless for everything else.” There is no “happy medium.”

Common Pain Medications

Learn more about pain medications you may receive.

Getting Relief

Some patients have oncologists who are able to treat their pain. Others find they need to see a palliative oncologist or pain management specialist to get the care they need. When the oncologist is providing the pain control, says Hui, the most important thing patients can do is communicate with their care team. “I always tell people you don’t win a trophy by being in pain. Patients shouldn’t be afraid to ask if they should see a pain doctor or palliative specialist who can provide further input. If they can help, it’s a win-win for the oncologist and patient.”

There is no question that managing Mike’s pain improved the time they had left together, Richardson says. “We started to travel again and we jammed in as much travel time as we could. We took a trip to Florida and a Hawaiian cruise. We’d just pack up the trailer and go somewhere to go camping, which was one of the things we most enjoyed.”

Richardson has held tight to those memories since Mike’s death. Over the past three years, she’s also used their experience to help others. Currently, she sits on committees at the Tom Baker Cancer Centre that provide input on palliative care and pain management. “I tell others, ‘If you are having pain, you need to demand that someone give you something or point you in the right direction to someone who will,’ ” she says. “No cancer patient should have to be living with pain.”

Sue Rochman, a medical journalist based in San Francisco, was formerly a contributing editor of Cancer Today.

*Editor’s Note: After the spring 2016 Cancer Today was issued, we learned that Dave Dier died of pancreatic cancer on April 17, 2016.​​