Maintaining open and honest communication with your doctor is an important part of your care. In fact, research has shown that people who have a good relationship with their doctor tend to be more satisfied with the care they receive. However, starting some conversations can be difficult. So to get the ball rolling, the Cancer.Net Blog is asking doctors to share their tips and insights for discussing a number of potentially sensitive or difficult subjects that might come up during diagnosis, treatment, and follow-up care.
Pain is a common symptom for people with cancer, and up to 95% of cancer-related pain can be successfully treated or managed. Unfortunately, not all people with cancer benefit from pain management strategies because they don’t talk about their pain with their health care team. To learn more, I talked with Robert Twillman, PhD, Deputy Executive Director and Director of Policy and Advocacy for the American Academy of Pain Management.
Q: Why is it important to talk with a doctor about any pain you might be experiencing?
Dr. Twillman: There are at least two important reasons to tell your health care providers about any pain you might be having. First, the pain might tell them something about how you are tolerating your treatment or about how your cancer is responding to that treatment. In either case, the pain could be a signal that tells them how to modify your cancer treatment to make it most effective. Second, regardless of what is causing it, there may be things your health care providers can do to relieve the pain so you can have the best possible quality of life and do the things you want to do. There is no reason to suffer in silence because there are lots of things we can do to help.
Q: Why do some people hesitate to talk about their pain?
Dr. Twillman: There are lots of reasons why people hesitate to talk about their pain. Some feel guilty if they “complain” because they know their health care providers are doing all they can to help them. Others believe that pain is just part of the cancer experience and that they should be tough and live with it. Some are worried about becoming dependent on, or addicted to, their pain medicines. Almost always, these concerns and ideas are things that health care providers understand and can help address—but they can’t help with them unless they know they are present, so discussing these concerns is the best way to address them.
Q: What should people with cancer tell their doctor about their pain?
Dr. Twillman: Most health care professionals are good about asking how much pain people are experiencing, but they also need to know all of the places you are having pain, what the pain feels like, what makes the pain better and worse, and how the pain affects your ability to do things like work, sleep, eat, do household chores, socialize with other people, etc. Talking about how the pain affects you is especially important because it puts a face on the pain; it gives health care providers a sense of what it’s like to live with that pain.
Q: What are some good words to use to describe pain?
Dr. Twillman: We usually think about words that describe the sensation of the pain like dull, aching, throbbing, pulling, sharp, shooting, burning, stabbing, and tingling. Sometimes, though, people also use emotional words like sickening, discouraging, depressing, nerve-wracking, and tiring. All of these words are good because they tell us about the total experience of someone’s pain.
Q: What are some common ways cancer-related pain can be managed?
Dr. Twillman: Sometimes the pain can be managed by doing things that affect the cancer itself, like having chemotherapy, surgery, or radiation therapy. In addition, we can use several kinds of medications, including anti-inflammatories (like ibuprofen or naproxen), opioids (hydrocodone, oxycodone, morphine, fentanyl, etc.), steroids (prednisone or dexamethasone), anti-seizure medicines (gabapentin or pregabalin), antidepressants (such as amitriptyline or duloxetine), and several others for specific types of pain. Sometimes an interventional procedure like a nerve block can be helpful. And we always have to remember that there are lots of things you can do without a prescription, like heat and cold, stretching, meditation or relaxation exercises, distraction, and others. We have a lot of things we can do, so it’s just a matter of finding the best combination for each person.
Q: How quickly do pain-relief strategies usually work?
Dr. Twillman: Different strategies take different amounts of time to work. Some, like anesthetic procedures or opioid medications, can work within a matter of minutes to a couple of days. Other medications, like antidepressants and anti-seizure medications, may take a couple of weeks to be effective. Still others, such as radiation therapy or chemotherapy, can take weeks to work. You should be sure to ask your health care providers how long you should expect for your treatments to be effective.
Q: What should patients do if their pain medication or another pain-relief strategy isn’t working?
Dr. Twillman: It’s very important that you tell your health care providers if pain medications or other treatments aren’t working. There can be a number of reasons why they might not be working, and the health care provider can help sort through those reasons to find another strategy that does work.
Q: Many people with cancer are concerned about drug addiction and overdoses when they are prescribed strong pain medicines (opioids). Is there anything people taking these medications should look out for?
Dr. Twillman: According to multiple scientific studies, addiction in people taking opioid pain medicines happens about 4% to 5% of the time if those people have no history of drug abuse. Having a personal history or a family history of an addiction, including addiction to nicotine, alcohol, prescription drugs, or illegal drugs, is the strongest indicator that someone is at risk for developing an addiction. It is very important that you be open with your health care providers about a personal or family history of alcoholism, drug abuse, or addiction. A couple of additional things to watch out for, and to discuss with health care providers, are wanting to take the medicine just because it changes the way you feel, instead of because it helps with the pain, and feeling like you are losing control over your use of the medicine. To put it as simply as possible, if you think you would want to continue taking the medicine even if your pain totally went away, then you should be concerned and should discuss those concerns with a health care professional.
Q: What else should patients or caregivers know about pain medications?
Dr. Twillman: Most pain medicines can cause unpleasant side effects, including itching, drowsiness and sleepiness, nausea, and constipation. All of these side effects can be treated effectively, so it is not necessary for you to suffer because of them. Discussing these side effects with your health care providers will usually make it possible to continue using your pain medicines without having intolerable side effects.
It’s also important to know that some people may want to use your opioid pain medicines without having a prescription. This is very dangerous, and people can die from abusing these medicines. It’s important that you keep your opioid pain medicines in a place where they are not easily found and maybe even lock them up. Also, if you have any leftover pain medicines, it is very important to safely dispose of them as soon as possible. You can discuss how to do this with the health care professional who prescribed the medication or a pharmacist.
Q: Is there anything else you would suggest that patients do to ensure their pain is being managed effectively?
Dr. Twillman: Keeping a diary about your pain experience can be very helpful. Doing this, even for a few days, sometimes can show patterns in the pain that can be used to improve pain control. It also can show what kinds of activities you can use to help relieve your pain. Keeping your health care providers informed about your pain and how it is responding to treatment is probably the most important thing you can do. That information needs to include anything you are doing that might not have been prescribed or recommended by the health care team.
Q: Is there anything else people with cancer should know about this topic?
Dr. Twillman: Many patients are more afraid of their cancer-related pain than they are of any other symptom. When it is not treated effectively, pain can be a real problem that affects almost every part of your life. Treatment for pain is most effective when it starts as soon as possible and when you play an active role by doing what the health care team suggests and then letting that team know how your pain responds. With all the things we can do to treat pain, there’s really no reason for anyone to suffer with uncontrolled cancer-related pain.