Harriet Canfield ruefully calls breast cancer “the gift that keeps on giving.” That “gift” for Canfield: chronic pain.
She experiences pain from lymphedema, which sometimes radiates from her right chest all the way to her fingers. She has back pain from breast reconstructive surgery, which involved a muscle from her upper back. And she feels a deep bone ache from the hormone therapy that keeps her estrogen-positive cancer at bay.
“I’m fortunate, really,” Canfield says. “There are a lot of soldiers who have experienced things worse than I have.” Although she received excellent care for her cancer and surgeries, she says, she’s often had to do her own research and seek out other experts to get help for her chronic pain.
Many cancer patients and survivors experience pain as a result of their treatment or because their cancer has metastasized. It may be persistent, intermittent or breakthrough pain, and often subsides when treatment ends. But about one-third of cancer survivors continue dealing with pain long after their treatments have ended. For them, chronic pain can be a daily struggle. Chronic pain may be mild, moderate or severe, and can last several months to many years.
This kind of “pain assessment” is the essential first step in controlling pain, and it’s often the hardest, Baker says. Assessment often starts formally, with doctors asking patients to rate pain on a scale of 0-10 and report whether it is intermittent or constant. Care providers will also ask about the nature of pain (is it sharp, burning, etc.), possible triggers, and the times of day when pain occurs. Some may ask patients to keep a pain journal to help identify nonobvious patterns.
“Pain assessment is hard because it’s all about communication,” says Michael Fisch, MD, chairman of the department of general oncology at M.D. Anderson Cancer Center in Houston and a researcher in the field of pain management. “And communication between patients and doctors about pain isn’t easy and hasn’t gotten easier in 20 years. In some ways, it’s more challenging because there’s more to talk about in less time,” Fisch says, referring to studies that show visits for cancer patients last, on average, 22.9 minutes.
In 2010, the National Comprehensive Cancer Network (NCCN) published an update of its clinical practice guidelines for adult cancer pain. The guidelines detail the multiple medicines in every category, outline dosing and discuss types of delivery—tablet, patch and intravenous, for example. The guidelines also discuss emotional and spiritual pain, depression and use of other pain medications, including seizure medications, such as gabapentin, now used for serious nerve pain, referred to as neuropathic pain.
Effective pain management involves knowledge, skill and, sometimes, a willingness to try new things, Baker says. “We are now using things for pain that are used for treating other disorders,” she says. “We use anticonvulsants for neuropathic pain; and for bone pain, we find that bisphosphonates, sometimes used for bone mineral loss or bone metasteses, can help. Antidepressants can help with neuropathic pain.”
Canfield says she has been able to reduce her pain on many days using a variety of methods. A physical therapist—one who works often with breast cancer survivors—was the first major source of pain relief in her post-cancer life. The therapist broke up scar tissue that was causing pain.
For the lymphedema that came later (lymphedema is swelling from a damaged lymphatic system that can sometimes be painful), Canfield wears a compression garment. She also learned how to manually drain her arm’s lymphatic system and tissue when her swelling reaches a certain point.
For the back pain at the surgical site, stretching and training exercises often help, as do ibuprofen and an occasional muscle relaxant. Walking regularly and the gentle training exercises seem to ease her bone pain.
“Don’t give up!” Canfield says is the best advice she’s gotten and given. “Keep trying … and don’t forget, as time goes by, your body changes and your medications change, so you may have to change what you are doing.”
Pain assessment is hard because it’s all about communication… And communication between patients and doctors about pain isn’t easy and hasn’t gotten easier in 20 years.
Timothy Moynihan, MD, an oncologist specializing in end-of-life and palliative care at the Mayo Clinic in Rochester, Minn., says that good pain management shifts as a patient’s needs shifts, is flexible and significantly improves a patient’s quality of life.
“When your pain is better controlled, everything is better,” Moynihan says. Pain management often requires experimentation, which can be uncomfortable for both patient and healthcare provider, he says.
Breast cancer patients experiencing pain that can sometimes come from hormone therapy might consider a similar adaptive approach to pain management. Aromatase inhibitors, often used in the treatment of estrogen-positive breast cancers, can cause joint pain that in some cases may be so intense that women will often go off the drug, Moynihan says.
“But there are three of them, and women may have bad joint pain with one but not another, even though they are in the same class of drugs. So try the others.”
The experience of pain is so individualized, it shouldn’t be surprising that pain management is, too, Baker says.
Complementary approaches to pain, such as acupuncture, are increasingly being recognized as effective based on clinical trials, although such modalities require regular treatment, which is not always covered by insurance companies. Other approaches, such as meditation, guided imagery, hypnosis and music therapy can be effective, as well, and may work in some individuals, but not all—emphasizing the need for patience and persistence when trying to find the right treatment for chronic pain.
The good news is that palliative and supportive care units and physicians can draw upon a multitude of medicines and other tools to reduce or eliminate chronic pain: non-opioid analgesics, opioids, antidepressants, anticonvulsant drugs and even nerve blocks. If one medication or intervention doesn’t work, a second strategy is often waiting in the wings, and specialized pain management teams can be consulted in an increasing number of practices and centers.
The causes of chronic pain vary from direct effects of the tumor on bone, nerves or other tissue, to side effects of certain drugs. Treatments for pain can include medications as well as complementary therapies, such as massage, acupuncture and hypnosis, says Karen Baker, RN, a nurse practitioner with the Clinical Center at the National Institutes of Health. Cancer survivors commonly experience bone pain and neuropathic pain, Baker says.
Left unchecked, chronic bone pain may worsen, or might be a sign of a problem that could lead to complications, such as spinal cord compression (which can lead to paralysis) and hypercalcemia (elevated calcium in the blood), which can cause multiple metabolic and physiological problems. Most bone pain can be relieved with medications but should always be discussed with the medical team so that the underlying reason can be determined and addressed.
Neuropathic pain is often the trickiest to control: a burning or bee-sting kind of pain that can come from temporary or ongoing damage to nerve endings, sometimes caused by radiation, chemotherapy or surgery.
“There are entire textbooks on pain,” Baker says, but survivors shouldn’t need to use them. They should draw upon the expertise of their care providers, by talking with them, as openly as possible about pain. “I ask people to think about the words they use to describe their pain,” Baker says. “Is it a tenderness or pressure? Fiery, like a bee-sting? And what makes it better? What makes it worse?