In March, SHARE welcomed Nessa Coyle, the former director of the supportive care program of the Pain and Palliative Care Service at Memorial Sloan Kettering Cancer Center to talk about pain. Now retired, Nessa, who trained in England, was a nurse practitioner at Sloan Kettering and has more than 40 years' experience in oncology. She spends her time speaking about pain management and palliative care issues as well as clinical ethics and imparting communication skills.
Nessa gave an overview of acute, chronic, break-through pain and the nerve damage that is associated with chemotherapy.
She emphasized how critically important it is to be able to describe your pain so the doctor can understand what is causing it. Doctors are used to dealing with data and they are going to respond to the way you describe your pain. The following is a synopsis of her presentation.
To be able to experience pain is important to humans—it's an alert system that something is wrong in the body.
If you pinch yourself, the pain sensation travels up through the central nervous system to the brain and is interpreted as pain. And all of us give pain meaning. If you have had a history of cancer, and there's a new pain, you may immediately associate it with the cancer, which may not be the case at all. It's a very human worry. If you have pain and become very frightened, your pain tolerance goes down; the pain is experienced as much more severe.
Pain is not just physical but psychological. Medication is important but can't do the job alone. The mind and the body are very interrelated.
The pain impulse travels to the brain through small nerve fibers. You may be able to interrupt the pain pathway by stimulating the larger fibers through acupuncture, for example. You can also use behavioral approaches and relaxation approaches. Therapists can help you create "a pain STOP sign," which says, "I have had this pain before, I know what to do and it will get me back in control."
Chronic pain serves no useful purpose. It interferes with quality of life and needs to be controlled. The fact you feel you can't talk about pain is isolating and depressing; the pain causes stress to your body and all those stress responses emerge. So you need to understand the pain, what's causing the pain and the approaches to managing it.
Those with chronic pain are often asked to think of pain on a scale of 0 to 10.
It's unusual to have zero pain. A practitioner tries to find out what level of pain would be acceptable to you. The patient might say a level 3; then the goal would be to gradually bring the pain down from 10 to 9 to 8 and so on until there would be a balance between adequate pain relief for you and your quality of life, balanced with acceptable side effects.
There are difficulties with the 0 to 10 pain scale. You can only compare people to themselves. Pain experienced as 5 for one person may be a 9 for another. In addition, the nature of pain can be difficult to describe. The practitioner would ask how the pain is affecting you, is it affecting your ability to talk, think, sleep, etc. If the pain is extreme and the patient can only grimace, the practitioner knows that this is excruciating pain and needs to be relieved immediately.
Today in most hospitals, along with temperature, pulse, respiration and blood pressure, pain is looked at as the fifth vital sign. So understanding the kind of pain will influence the drugs that will be prescribed.
The general causes of pain in the cancer journey
You may have a tumor pressing on a nerve. You may have post-operative pain, pain that is acute for the moment but dissipates at the site where the surgery heals. Pain is also associated with treatment of the disease—nerve damage pain caused by chemotherapy—or by radiation therapy, now less frequent because of smaller doses.
And as you age, you can experience pain from arthritis from any part of your body.
You may have pain from the treatment of your disease. Or pain from the active disease itself or pain totally unrelated to the cancer treatment. The meaning of the pain may be different and thus the treatment may be different.
There are two major categories of pain: acute pain, short, severe, like a sprained ankle, or chronic, persistent pain that lasts three months or longer.
If you have chronic pain, you may be taking a slow release medication, but the pain returns before the 12 hours is up. In this case the practitioner would need to increase the dose or decrease the interval between does.
With breakthrough pain, you have controlled chronic pain but you have periods when acute pain breaks through. The pain might be associated with constipation, for example, and treatment would not be more pain medication but something to take care of constipation.
Neuropathic pain is caused by compression or injury to nerves, chemotherapy agents, and surgery. Damage from radiation has been much reduced because of lower doses now used.
Peripheral nerves, those outside the brain and spinal cord, are either motor or sensory. The motor fibers are the larger fibers that enable us to walk, maintain muscle tone and mass. The sensory fibers are the much smaller fibers and there are many more of them than motor fibers; they are responsible for the sensation of pain and temperature. Chemotherapy may damage the sensory fibers so there is sometimes difficulty in finding a reflex, as you may have experienced at your doctor's. Sensory fibers help you to know where you are in space, and also influence your bowel and bladder function. Chemotherapy is more likely to affect these small fibers.
Today pain management is a team approach—with a pharmacist, physical therapist, nurse practitioner, doctor, social worker dealing with a whole person, who is also a critical part of the team.
Describing your pain correctly is important. For example, for post-mastectomy pain, if the words used to describe the pain include sharp, shooting, burning, electric shock—the practitioner would know that this is typical of nerve damage pain.
Along with pain medication, physical therapy is extremely important in dealing with neuropathic pain. With many of these syndromes there's not just one modality. There are multiple reasons for pain. The whole body in interacting—there is the pain stimulus, the meaning of the pain, the suffering component, and the effect on quality of life. If pain medicine is just used alone the pain will not be well controlled.
Peripheral neuropathy symptoms depend on what nerves are involved—whether it's the large diameter or the small diameter fibers that control temperature, reflex, bowel and bladder function. Constipation can be related to neuropathy, and also to medications. Many chemotherapy agents can cause neuropathy. When doctors design the cocktail they try not to use too many medications at the same time that could cause neuropathy. Some neuropathy disappears after the treatment. Your doctor will talk to you about the risk/benefit. Severe neuropathy is enormously debilitating. If you are losing feeling in your feet, have numbness under the arm, can't do up your buttons, experience tingling, itching, tell your doctor so that the chemotherapy can be adjusted.
Polyneuropathy occurs on both sides of the body and begins in the feet and in the hands. Sometimes it is temporary but may persist and become chronic. There are many risk factors; age is one. Polyneuropathy may not develop initially but may do so with repeated doses of chemotherapy. If you are a diabetic, you are more at risk for neuropathy; other people have genetic risk factors. Drinking alcohol increases the risk. You will be screened for risk factors for neuropathy before you start treatment.
Treating pain with drugs
Pain medications include anti-depressants, steroids, anticonvulsants and opioids, used alone and in combination. Anti-depressants, though not designed for this use, have been found to be useful in certain pain syndromes. Anticonvulsants or opioid drugs are introduced if necessary.
The need is to understand the mechanism. Understanding the causes of pain makes it possible to choose the drug that works best. Doses will vary since everyone metabolizes drugs differently. With topical medications, such as capsaicin cream, Emla cream, Lydocaine patches, you put the medication where the pain is. With a Fentinel patch the medication is absorbed systemically.
Pain is multi-dimensional and approaches need to be multi-dimensional.
Many people find incorporating relaxation imagery helpful. For a burning arm… imagine cool blue water. When receiving Taxol, some patients find using the cold cap, cold mitts and booties for hands and feet during the treatment help prevent neuropathy and hair loss.
Bio feedback, relaxation, physical and occupational therapy, meditation, guided imagery, acupuncture, nerve stimulators, cranial sacral therapy—many can be very helpful as can a visit to a pain anesthesiologist.
You should always tell your oncologist what you are doing and how you are feeling. Make sure they know.
Keep a pain diary.
You're the expert on your pain. The practitioner's job is to sort out what is causing the pain and to address your suffering, not just give medicine. Keeping a daily record will help you identify the sources of your pain and discover what works. Who should you talk to? To your oncologist, certainly, and especially to his or her nurse practitioner. This is the person who will best communicate to your doctor and who should be your advocate. Form a strong alliance with this person.
Write down the level of pain before and one hour after you take your pain medication by mouth. Note when your pain is at its best and at its worst on average. What do you do other than take your medication to manage your pain? What makes it better or worse—mood, stress, constipation? Write it down.
Sometimes pain reveals itself. Where is the site? Are there different sites? Mark an X on the body chart in the doctor's office. Describe the pain. Is it dull? An ache? Sharp shooting? Which pain bothers you the most? Was the pain shooting, now it's dull? Is the pain worse lying in bed? Does getting up make it better? Is it episodic? Are there other symptoms with the pain? Sweat? Nausea? Write it all down in your diary. How you communicate puts you more in control.
If you are worrying about the side effects of medication, if you have financial concerns, talk to someone. Write down any questions to ask your doctor or practitioner on your next phone contact or visit. Not keeping your pain under control may interfere with your treatment. You'll learn from your diary what makes pain better and what makes it worse.
Start using what works.