What is Mesothelioma Cancer Pain?

There are many ways to define pain. Webster's dictionary defines pain as "physical suffering associated with bodily disorder (as a disease or an injury); also: a basic bodily sensation induced by a noxious stimulus, received by naked nerve endings, characterized by physical discomfort (as pricking, throbbing, or aching)". Whatever definition you prefer, pain is a sensation that hurts, and it has both physical and emotional aspects to consider.

How pain happens. Pain is transmitted through the body by the nervous system when our nerve endings detect damage to a part of the body. The nerves transmit the warning through defined nerve pathways to the brain, where the signals are interpreted as pain. Sometimes pain results when the nerve pathways themselves are injured. You feel pain when your brain receives the signal from your nerves that damage is occurring. All types of pain are transmitted this way, including mesothelioma cancer pain. Pain can be acute or chronic:

Acute pain usually starts suddenly, may be sharp, and often triggers visible bodily reactions such as sweating, an elevated blood pressure, and more. Acute pain is generally a signal of rapidonset injury to the body, and it resolves when pain relief is given and/or the injury is treated.

Chronic pain lasts, and pain is considered chronic when it lasts beyond the normal time expected for an injury to heal or an illness to resolve. Chronic pain, sometimes called persistent pain, can be very stressful for both the body and the soul, and requires careful, ongoing attention to be appropriately treated. Chronic cancer pain can be successfully treated with the drug and nondrug therapies that are currently available.

Remember, mesothelioma cancer pain can be managed. With today's knowledge of pain associated with mesothelioma and the availability of pain-relieving therapies, no one should have to suffer from unrelieved pain. Although mesothelioma pain can be relieved, surveys have shown that pain is often under treated in many patients. This can be attributed to several factors:

Mesothelioma physicians may not be adequately educated about pain control or they may be more focused on control of the disease than on control of pain and other symptoms; patients may be reluctant to report their pain; and both physicians and patients may be reluctant to use morphine and other opioids for pain control because they fear addiction, which is extremely rare in people with cancer.

Quality of Life Issues

To those living with mesothelioma, life is precious. When pain becomes part of one's daily life, however, these days are diminished and quality of life is eroded. Following are some of the effects pain has on quality of life:

  • Sleep is disturbed
  • Ability to work is impaired
  • Exhaustion becomes a constant companion
  • Sadness, depression and worry are commonly felt emotions
  • Appetite diminishes
  • Simple pleasures such as enjoying one’s family are impaired or given up
  • Trips and vacations are uncomfortable or impossible
  • Reluctance to move or exercise is experienced
  • Feelings of isolation from the world increase
  • Family and friends who are caregivers become exhausted

Every mesothelioma cancer patient who has experienced unrelieved pain can provide his or her own examples of the damage pain can do to one's life. Even if you believe that you, personally, can tolerate the pain you feel from mesothelioma or mesothelioma treatments, consider this: by living in pain, you are depriving those who love and care for you the full pleasure of your company. To continue to suffer when pain relief is available not only hurts yourself, but also those who care for you. It's important to understand, too, that mesothelioma pain can undermine your ability to fight your cancer. If pain has you in its grip, your appetite diminishes. This means you may not be receiving sufficient nutrition to retain energy, which, in turn, leads to exhaustion and feelings of sadness and depression. As this cycle continues, a person is worn down gradually, may become more vulnerable to infection, and the ability to with stand necessary cancer treatments may diminish. Talking to Your Mesothelioma Doctor about Your Pain Since pain is a subjective experience, good communication with your mesothelioma doctor or mesothelioma nurse about the pain is an essential part of receiving adequate treatment and an effective dose of pain medication.

To obtain relief, consult your mesothelioma doctor as soon as possible. The sooner you do this, the better, because as pain becomes more severe it may become more difficult to control. Do not let fear of being perceived as a "complainer" stop you from being your own advocate for appropriate pain control. Pain is a real experience for the majority of people with mesothelioma cancer, and it is your right to obtain the best treatment available.

Here is a checklist of things to discuss with your mesothelioma doctor or nurse:

  • Tell them where it hurts, when it hurts, and how intense the pain is.
  • Tell them what makes the pain feel worse and what makes it feel better.
  • Tell them how quickly your pain comes on, how long it lasts and how often it occurs.
  • If you are taking pain medications, be sure to discuss how much relief you get.
  • Discuss how the pain is affecting your life and what activities you are unable to perform because you are in pain. Include information about your appetite, your ability to sleep, and whether you can perform your normal daily functions.

Questions to ask your mesothelioma doctor or nurse include:

  • What types of medication(s) are available for my pain? What are the side effects of each type of drug?
  • How should this medicine be taken?
  • How long should I take it?
  • Are there drug interactions with other drugs I am taking?
  • Can you suggest any nondrug methods to relieve my pain? (Medical professionals, however, are not always the best source for non-drug or alternate therapies for pain control. Many doctors and nurses are not aware of alternative therapies for mesothelioma, or they may not believe that they work. We have included a section on alternative/complementary methods of pain control based on the literature (both printed and electronic) and anecdotal reports from patients about what has worked for them. Click on to the alternative therapy section to learn more about these approaches.)

Assessing Mesothelioma Cancer Pain

Careful, comprehensive assessment of mesothelioma cancer pain is absolutely essential to finding the best treatments to manage the pain. If you remember that pain is invisible, you will quickly understand how important your role, as the mesothelioma patient, is in assessing pain. What you say is of great importance in this process. Here are some guidelines to help you work effectively with your mesothelioma health care providers in assessing your mesothelioma cancer pain:

  • Put it in writing. If possible, written notes about your pain are valuable in providing accurate and comprehensive information.
  • Ask questions. It's important that you fully understand what your mesothelioma treatment options are and what health care professional says to you about your pain. Ask questions until you are satisfied that you understand.
  • Have a note taker. Sometimes it's difficult to talk about your pain, ask questions, and take notes on what's being said to you, all at the same time, especially if you are in pain. Bringing a friend or family member to take notes during the discussion about your pain provides a valuable record for you once the conversation has ended. The same can be said when discussing mesothelioma treatment options and mesothelioma drugs.
  • Make your views heard. Don't be hesitant to offer an opinion about what may be causing or contributing to your pain. No one knows your body as well as you, and your insights can be valuable to your health care providers. These are points to consider as you prepare to discuss your mesothelioma pain and its management with your health care providers:
  • The location of all of your pains.
  • How the pain feels (use descriptive words such as dull, aching, throbbing, stabbing, piercing, pinching, sharp, aching, burning, tingling).
  • The intensity of your pain (when it is at its worst) and whether the intensity changes throughout the day and night.
  • When you have the pain (all the time or occasionally).
  • How quickly the pain comes on (suddenly or intermittently), how long it lasts (a few minutes or several hours), and how often it occurs.
  • What makes the pain worse? Describe conditions under which the pain becomes more intense, such as moving, walking, talking, coughing, laying down, eating, going to the bathroom, etc.
  • What eases the pain? Be ready to discuss anything that has helped you, including medication(s) you have been using, and the amounts you are taking.
  • Medications you are taking. Tell them about your pain medications including any over the-counter pain relievers, any alternative medications like herbs, and any medications you may be taking for other health conditions not related to cancer.
  • Side effects of your pain medications. Tell them what side effects you are experiencing, how the side effects are currently being treated, and if you are satisfied with this treatment.
  • Quality of life issues: what impact does the pain have on your quality of life? Can you work, enjoy your family and friends, eat and sleep well? If not, describe how the pain is limiting your activities. Also tell your health care provider(s) what you want from pain management in terms of quality of life. To keep an accurate record of what you are experiencing, consider creating a simple pain diary. You can do this in a notebook, recording information like the date, time or day, level of pain you are feeling, what you did to remedy or alleviate it (i.e., medications taken, use of ice or heat, and so forth), and the outcome of your efforts to control the pain (did the medication work? For how long? Where there side effects?)

Treating the Pain

Introduction

Significant mesothelioma cancer pain can accompany malignant mesothelioma – especially during the end-stage of the disease. It is one of the major challenges facing patients and their doctors. The emotional distress wrought by the illness and its associated pain can have a major impact on your quality of life.

Today, more than ever anesthesiologists and other health care workers who specialize in pain control are employing state-of-the-art pain management techniques, including implanting devices which deliver pain-fighting drugs directly to the central nervous system to control pain. Dr. Srdjan S. Nedeljkovic, an anesthesiologist at Brigham and Women's Hospital in Massachusetts and Fellowship Education Director at its Pain Management Center states that "our experience suggests a greater than 90 percent effectiveness rate ... with the fewest side effects" in controlling pain caused by mesothelioma.

Progressive Symptoms

When malignant mesothelioma originates in the pleural cavity, the first symptom may be a nagging discomfort or mild pain in the chest area or in the back. If it originates in the lining of abdominal cavity, the first symptom is abdominal or pelvic discomfort. During this initial stage, mesothelioma cancer pain can be eased with over-the-counter analgesics, such as aspirin, Tylenol or ibuprofen (Advil, Motrin). Surgery, radiation and chemotherapy are aimed at stopping the spread of the disease and, thus easing the pain. But the treatment themselves are not exactly pain-free. As the disease progresses and destroys soft tissue and nearby nerves, the patient experiences the most discomfort.

Eventually, when cancer spreads, it grows into the chest wall, muscles and ribs causing destruction and severe pain. The mesothelioma cancer pain changes from mild, general and episodic to severe, localized and chronic as the disease progresses. Usually, severe mesothelioma cancer pain is unresponsive to oral doses, intravenous infusions, or intramuscular injections of analgesics or narcotics. Malignant mesothelioma of the abdominal cavity also can lead to bowel obstruction and its own resultant pain.

Easing Severe Pain:

A Two-Pronged Approach

Mesothelioma doctors, mesothelioma hospitals and other health professionals who specialize in easing severe pain take their jobs very seriously. They will do as much as possible to bring maximum physical comfort and quality of life to all patients who come to the hospital, no matter what stage of mesothelioma a patient is in.

Emotional Support to Help Ease the Pain

Emotional support from family and/or professional counseling play a key role in pain management. Improving a patient's mental health can help minimize the fear, anxiety and depression that can make physical pain feel worse. It is important that care focuses on helping the patient:

  • Accept the reality of the diagnosis
  • Deal with end-of-life issues
  • Cope with the personal impact of the diagnosis and its impact on his or her family
  • Weigh treatment options

The other crucial part of the center's program is evaluating and managing the physical pain of the disease and painful side effects resulting from treatment.

Pain Medication: Epidural Implants

If a mesothelioma patient no longer attains relief taking the strongest oral or intravenous analgesic medications, mesothelioma doctors may prescribe a solution containing local anesthetics and opioid analgesics that is delivered epidurally (outside of the dural membrane of the spinal cord, but still within the spinal canal). The pain-management team surgically implants a thin catheter beneath the skin. Precise doses of the pain-killing mixture are programmed to flow through this tubing into the epidural area of the spinal canal at preset amounts and times. The drugs bind to receptors in the central nervous system at the level of the nerve roots,blocking pain signals.

In addition to controlling pain, the epidural implant reduces the need for in-hospital pain care. By allowing pain to be controlled at home, it offers maximum mobility for patients. Doctors, in conjunction with trained technicians of a private home-health care agency, provide the medication and monitor the ongoing operation of the device. They will do as much as possible to bring maximum physical comfort and quality of life to all patients who come to the hospital, no matter what stage of mesothelioma a patient is in.