Your part in controlling your mesothelioma pain
Your pain is unique to you. Only you know where your pain is located, how it feels, how much it hurts, how long it hurts and what makes it better. The key to getting the best pain relief is talking with your doctors and other members of your treatment team about your pain. They will want to know how much pain you feel, where it is, and what it feels like.
The first step: talk about your pain
Telling your care team in detail about your pain is one of the most important things you can do to help in your mesothelioma treatment. Some patients don't receive the best treatment for their mesothelioma pain because they don't let the people treating them know enough about their pain. Talking about your pain is not complaining or whining. It's giving your care team information they can't get any other way, and that they need in order to be helpful to you.
Dr Ann Berger, director of the Pain and Palliative Care Service at the National Institutes of Health Clinical Center, and herself a cancer survivor, strongly recommends that patients talk to their doctors about their pain. About assessing pain in cancer patients, she says “I don't think it's difficult, but to assess pain, you do need time. Total pain is physical pain plus psychological issues, social issues and spiritual issues, and to get at all of that you need more than the average ten-minute visit. If an oncologist has only a few minutes with a patient, naturally the discussion will center around what is going on with the cancer and they won't be able to deal with the other issues.”
Pain management specialists know that treating mesothelioma pain successfully requires constant reassessment and fine tuning. They need to ask specific questions of their patients. It may not be sufficient to just ask, "How are you doing today?" For proper assessment, clinicians need to help patients talk about the impact that pain is having on their daily lives. More specific questions, such as, "How have you been sleeping?” or “Tell me about your work routine" can open up the discussion.
The discussion should include questions about the physical symptoms of the mesothelioma pain and how the patient experiences it: Is it sharp, burning, numbness, tingling? Dr Berger also asks questions about the person's emotional state, social issues, family issues, what kind of losses have they had in life, and how religion and spirituality fits into their lives. She wants to know how the important people in the person's life had died, what the death was like, and how has the person dealt with other losses in their life; and how they deal with stresses.
She encourages patients to start thinking about these questions and talking to their doctors. Your doctor should know whether you are spiritual or religious, what kind of personal community you have, and what importance spirituality plays in your life. All of these dimensions affect how a person experiences pain and what will be helpful in managing it.
Why your mesothelioma pain should be treated
Pain can affect you in many ways. It can keep you from being active, from sleeping well, from enjoying the people you love, and from eating. Pain can make you feel afraid or depressed. Pain may also prevent you from fully participating in rehabilitation programs, and it may actually slow your recovery from treatment.
Most pain from mesothelioma can be controlled with pain management medication and other techniques. When you are experiencing less pain, you will probably feel more active and interested in doing things you enjoy. Tell your doctor or nurse right away if you are feeling pain. Getting help for mesothelioma your pain early can make pain treatment more effective.
Describing your pain
Answering the questions below will help you communicate with your health care provider about your pain. After discussing your pain, your doctor or nurse may want to examine you or order x-rays or other tests that will help them find the pain's cause.
To communicate how you feel, ask yourself the following questions:
Where is the pain?
You may have pain in more than one place. Be sure to list all of the painful areas. Sometimes locating the pain on a diagram of the body will help you show where it is.
What does the pain feel like?
Does it ache, throb, burn or tingle? You may wish to use other words to describe your pain.
How bad is the pain?
You can use a number scale to rate your pain) from 0 to 10, where 0 means no pain and 10 means the worst pain you can imagine. Or, you can describe your pain with words such as "none", "mild", "moderate", "severe" or "worst possible pain". You may find these scales useful for keeping track of how your pain changes in response to treatment, activities or the time of day.
Has the pain changed?
You may notice that your pain changes over time. It may get better or worse or it can feel different. For example, the pain may have been a dull ache at first and has changed to a tingle. It is important to report changes in your pain. Changes in pain do not always mean that the cancer has come back or grown. Describe how the pain was before and how it is now.
What have you found that makes the pain better or worse?
You may have already found ways to make your pain feel better (for example, using heat or cold, or taking certain medicines). You may have also found that sitting or lying in certain positions or doing some activities affects the pain.
If you are being treated for pain now, how well is the treatment working?
You may want to describe how well the treatment is working by saying how much of the pain is relieved, such as all, almost all, none, etc.
Have a plan
Just giving a pain medication is not enough. Dr Ann O'Mara of the National Cancer Institute emphasizes that there must be continuing discussions between patient and the treatment team to determine how the medication is working and how the patient is coping.
Work with your doctor or nurse to write a pain control plan that meets your needs. In a pain control plan, you and your doctor or nurse plan your pain control activities, including a schedule for when you take your medicine, how and when to take extra medicine, and other things you can do, such as rest, heat or cold, meditation or guided imagery, to ease and prevent your pain.
Your doctor or nurse may also list medicines and other treatments that will help with side effects of treatment and other aches and pains you may experience, unrelated to your mesothelioma, such as headaches.
Many different medicines and treatments are used to treat mesothelioma pain. For some patients it takes some trial and error to find the regimen that works best. If a particular medicine or the way you are taking the medicine doesn't work for you, your doctor and nurse need to know that so they can help you find the medicine or approach that will help the most.
It can be very helpful to keep a record of how the medicine is working. Many people use a simple notebook to record what they're taking, and how it's working. Showing that record to your doctor or nurse will help them see what's working and what's not, and help them fine-tune your pain management plan to make it more effective for you.
Taking your mesothelioma pain medicine
Take your medicine on a regular schedule (by the clock) and as your doctor tells you. This will help to keep pain under control. Do not skip a dose of medicine or wait for the pain to get worse before taking your medicine. The goal is to prevent the pain. If you wait until you feel the pain, it will be harder to get it under control.
Your doctor will usually give you additional medicine for "breakthrough pain" (a brief and often severe pain that occurs even though you're taking pain medicine regularly). If some activities make your pain worse, for example, sitting, or standing or riding in a car, you may need to take extra doses of pain medicine before these activities. Talk with your doctor or nurse how and when to take extra medicine.
Call your doctor or nurse immediately if your pain increases or if you have new pain. Always call your doctor in plenty of time to secure a refill of pain medicines. Do not let your pain medicines get below three or four days' supply.