How is persistent cancer pain managed?
Managing persistent cancer pain is very specialized and very different from managing acute pain such as from surgery or chronic non-malignant pain such as arthritis. Oncologists, palliative medicine, and hospice specialists are usually skilled in managing persistent cancer pain. Other practitioners, such as acupuncturists, massage therapists, energy medicine therapists, and mind-body skills facilitators may also be a helpful part of your pain-management team.
Assessing your pain
The best pain management plan starts with a thorough assessment of your pain to find out, among other things, if there is a reversible cause for it. Assessment may involve tests and scans, but your description of the pain is key. By describing the location, duration, intensity, quality, and triggers of the pain, as well as the effect of the pain on your daily living, your team can come up with the best plan to help you be more comfortable. It may also be helpful to know how the pain and your body are reacting to pain medications that you have been using.
On every visit, your cancer care team should be asking you if you are having any symptoms, including pain. If you do have persistent pain, they should be following up with you regularly until you have reached a steady state of pain control with the least amount of side effects. If your oncology doctor or nurse does not ask you about pain and other symptoms, we encourage you to bring it up. You don’t need to wait until a scheduled appointment—call as soon as possible if your symptoms are moderate to severe and/or you cannot control them safely and effectively on your own. You’ll be making it easier on yourself and your care team if you take a pre-emptive approach.
Keeping a pain log or diary will be very helpful to you, your caregivers, and your doctor. This will help identify and track the patterns, triggers, and rhythm of the pain, as well as how pain medicines and other pain treatments are working. Recording other symptoms you experience besides pain could be helpful in addressing pain, as many other symptoms are often present with or even linked to pain.
Pain is a subjective experience. No test can fully tell your doctor how your pain feels, how intense it is, and what it’s doing to the quality of your life. You are the only reliable measure of your experience of pain. Speak up for yourself, or if you’re a caregiver, speak up for your loved one in pain.
Pain and suffering
Unrelieved physical pain can cause unnecessary suffering. In addition to physical pain, people also experience emotional, mental, social and spiritual pain. These types of pain may also lead to suffering.
CancerChoices founder Michael Lerner teaches that “suffering is the human experience of pain.”1Lerner M. Choices In Healing: Integrating The Best of Conventional and Complementary Approaches to Cancer. MIT Press. 1994. He explains that very often suffering is viewed negatively in our society. However, many of the wisdom traditions as well as our own experience teach us that there is a dual nature to painful events—they can cause suffering as well as deliver great wisdom and growth.
“Suffering is in large part the story we tell ourselves about our pain. And that story can sometimes profoundly shift the experience of that pain.”2Lerner M. Choices In Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. MIT Press. 1994. p. 484. Indeed, many people find that in simply telling about their pain, their pain level begins to ease. Research verifies that people’s immune systems and healing abilities improve when they write or talk about the story of their pain, whether that pain be physical, mental, emotional, social, or spiritual.
Roshi Joan Halifax, PhD, has written Meditations on Transforming the Suffering of Pain ›, which includes meditative practices that assist with being with pain and transforming the suffering of pain.
Share the facts of your pain with your doctor; share the story of your pain with those who will receive it with compassion: the first may ease your pain, the second may transform your pain and ease your suffering.
Personal stories
CancerChoices Senior Clinical Consultant Laura Pole, RN, MSN, OCNS: Over the years I’ve cared for scores of people who used complementary therapies and self-care practices to augment their pain management.
Imagery for painful procedures
Take Jake, for instance, who had to have multiple bone marrow biopsies to check the status of his leukemia. He didn’t want to take the sedating drug that his doctor recommended. Instead, he used an imagery technique where he imagined his pain intensity on a radio dial. When the needle was inserted into Jake’s bone marrow and the pain was most intense, he imagined the pain score on the far right side of the dial. Then in his mind, he “moved” the indicator toward the left side of the dial, where the numbers were lower. He was able to focus his attention so successfully on this image that he used this technique for all these painful procedures.
Music made the difference
Grace had severe bone pain that wasn’t seeming to respond to an intravenous infusion of morphine plus other pain control medicines. Her family was also agitated as they watched Grace hurt. I suggested the family go to the cafeteria to take a break. I asked Grace what her favorite kind of music was and she said hymns. We darkened the room, played a recording of her favorite hymns and within minutes, Grace went fast asleep. Combining music for Grace and stress management for the family, we created a calming environment and were actually able to lower the dose of morphine.
The power of distraction and story-telling
Grace’s sister, Phyllis, was also in the hospital and taking strong pain medicine for severe bone pain from cancer. She liked to put together scrapbooks at home. We had her husband bring them in and the staff would spend a few minutes at a time, listening to Phyllis tell the story behind this and that photograph or memento. She’d say, after a few minutes, “I didn’t even notice that I had pain while showing you my scrapbook.” That distraction got her through the unmanaged pain until we found a regimen that worked for her.
“That little black box brought me to my feet again”
Or there’s Esther, who had severe lower back pain from metastasis of her renal cancer. The neurosurgeon was about to perform nerve surgery on her when the oncology unit’s interdisciplinary team suggested tweaking the long-acting opioid, adding a drug that helps with nerve pain, and using a transcutaneous electrical nerve stimulation (TENS) unit on her lower back. Esther had been unable to walk because the pain was so bad. After starting the suggested regimen she was able to go home, walk about the house and was even back to ironing her own clothes. In her opinion, the “little black box”, the TENS unit, was a miracle worker. She particularly liked how she had control of when to turn it off and on and to determine the intensity of the electrical stimulation. She never did require neurosurgery.
Tapping into the wise guide
Then, there was Jean who had advanced breast cancer, was nearing the end of her life, and was in the hospital to get her symptoms, including pain, under control. When she needed the IV pain medicine, she would press the call bell and ask the nurse to come give her a dose. I suggested to Jean that we set her up with a PCA (Patient controlled analgesia) pump so she could give herself a dose of IV morphine instead of waiting, sometimes a long time, for the nurse to get there. Jean said “I want a real person on the other end of the IV, not a machine. I’d rather wait.” I suggested that while she waited for the nurse to come, she might want to use some imagery. She was game for it and I guided her through imagery where she met her wise guide. She quickly saw that her wise guide was “Mr Bluebird” who would sit on her shoulder while she skied down a mountain slope. Mr. Bluebird stayed with her while she waited for the pain meds. He gave her wise guidance on making decisions about life-prolonging treatments as well as whether or not she should allow her estranged husband to come and see her. Through her final weeks she’d whistle to Mr. Bluebird and he’d come on her shoulder. He encouraged her to meet with her estranged husband. A beautiful reconciliation came to pass and this man, the father of her brittle diabetic son, vowed to take care of their son from now on and Jean didn’t have to worry. She passed very peacefully not long after that.
Love your pain
CancerChoices Program Manager and Lead Researcher Nancy Hepp:
Several years ago, I was in a terrible bicycle accident. I broke—smashed, actually—both my arms. I was in crushing pain for many, many months. Some months into this experience, I picked up my copy of Stephen Levine’s book Healing into Life and Death that had been lent to me when my husband died just a few months before my crash. The first time through, I was looking to ease the emotional pain of loss, but this time I needed guidance on physical pain. I came across his advice to “love your pain.” This struck me as preposterous—I did NOT love my pain!
Slowly I came to realize that he meant “treat your pain with love.” Pain to me is a lot like a fussy baby. Nothing is going to improve if I yell “Shut up!” to a crying baby. Or if I am impatient and harbor resentment and anger toward the child. No. I need to love the baby. Soothe her. Comfort her. Reassure her. Let her relax and know she will be taken care of. I learned to treat my pain the same way. I talked soothingly to my hurting arms: “Yes, I know you hurt. Yes, it’s very difficult. But I hear you. I am doing what I can. You can relax into my care.” And being able to relax my muscles, even just a little, eased some of the pain.
I learned that my own tensing reaction to pain was making it worse. My muscles gripped tightly in self-defense against injury, but this reaction was not serving me now. Through restorative yoga classes, I learned to “breathe into” my arms and neck, which allowed for a release of tension with the next exhalation. I would breathe into my pain with every breath on my long walks, and slowly, slowly, I learned to release tension in my muscles throughout my body. I credit this with my healing from pain, in conjunction with my faithful attention to physical therapy. Of course I needed to stretch and exercise my healing arms, but I also needed not to add to my misery by tensing my muscles. I learned to calm my pain by loving it.
What prevents you from addressing pain?
Fears about pain and pain treatment are common. Very often, fear and misinformation are the biggest obstacles to getting good pain control.
Examples
Some people are afraid pain means cancer has come back or is getting worse and may put off identifying the source of pain.
Fear may come from experience with someone with cancer whose pain caused suffering.
Many people are afraid that if they take opioidschemicals that interact with opioid receptors on nerve cells in the body and brain to reduce the intensity of pain signals and feelings of pain. This class of drugs includes natural, synthetic, or semi-synthetic drugs such as oxycodone, hydrocodone, codeine, morphine, heroin, fentanyl, and many others. such as morphine, they will become addicted. See What about addiction (substance use disorder)? › below.
Others fear that opioids will make them confused, incoherent or “out of it” all the time.
Many fear that if they take an opioid now, it won’t work later if the pain gets worse.
We encourage you to talk to your doctor about whatever fears you have about pain so they can be addressed, and you can move forward with managing your pain. The sooner you let your doctor know about your pain, the sooner it can be managed. By being proactive, you might avert worsening of the pain and its effect on your mood, energy, daily activities, mobility, and life. The ultimate goal is getting ahead of the pain and keeping it under acceptable control around the clock.
We also strongly encourage you to promptly tell your doctor if your pain is beginning to break through before your next dose of medicine is scheduled. Breakthrough pain can lead to several worse outcomes.3Portenoy RK, Payne D, Jacobsen P. Breakthrough pain: characteristics and impact in patients with cancer pain. Pain. 1999 May;81(1-2):129-34.
Resources
General
Tracking and reporting pain
For caregivers
Continue exploring
References