Management of Pain for Mesothelioma Patients: What You Need to Know to Get Started

Communicating With Your Health Care Provider:

Since pain is subjective, it is essential to communicate with your mesothelioma doctor or mesothelioma nurse in order to receive adequate relief.  Because of the chronic nature of pain associated with mesothelioma, you should consult with a medical professional as quickly as possible.  Also, left untreated, mesothelioma pain often becomes more severe, making it more difficult to control.  

You definitely should not let worries of being perceived as a "complainer" prevent you from seeking relief.  You are your own best 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 relief available.

General guidelines when talking to your doctor about mesothelioma pain:

• If possible, keep written notes or a journal documenting your pain, and questions you would like answered.  These notes should be comprehensive and accurate. 

• Make sure you express your views. Do not hesitate 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 are very valuable to your health care providers. See below on what you need to tell your doctor.

• Ask questions. As with other aspects of your treatment, it is very important that you fully understand what is causing your pain and your relief options. There are no stupid questions. See below for what you need to ask your doctor.

• During discussions with your health care provider, have a loved one take notes for you.  For most people, it is difficult to talk about pain, ask questions, and take notes at the same time. This will allow you to focus your concentration on your discussion.  (The same can be said for discussing mesothelioma treatment options.)

What you need to tell your doctor:

• How your pain feels: Use descriptive words (such as dull, aching, throbbing, stabbing, piercing, pinching, sharp, aching, burning, tingling.)

• The patterns in your pain: At what time of day is it worst? Is there regularity with regard to changing intensity?

• The frequency of your pain: Do you have symptoms all the time or occasionally?

• The timing of your pain: How quickly does the pain come on (suddenly or intermittently)? How long does it last (a few minutes or several hours)? How often does it occur?

• What makes your pain worse:  Describe conditions when your pain becomes more intense (such as moving, walking, talking, coughing, laying down, eating, going to the bathroom.)

• What eases your pain: Talk about anything that has helped you, including medications you have been using and the amounts you are taking.

• What medications you’re taking:  Tell your doctor 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 your cancer. 

• How the pain is affecting your life: Describe the activities you no longer are able to perform, such as effects on your appetite and your ability to sleep.

What questions you need to ask your doctor about available medications for mesothelioma pain:

• What types of medications are available? 

• What are the side effects of these medicines? 

• How often and how long will I need to take it? 

• Are there harmful reactions when combined with other drugs I am taking?

• Can you suggest any non-drug methods to relieve my pain?

(Medical professionals, however, are not the best source of knowledge on non-drug or alternate therapies for pain control.  Therefore, 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 here to learn more about these alternative approaches.

Management of Pain for Mesothelioma Patients: Available Treatments

As discussed above, significant pain often accompanies mesothelioma, particularly during the later stages of the disease, challenging the patient and his or her family to struggle not only with the illness, but also with a new way of living. 

Fortunately, today more than ever, health-care workers who specialize in pain control are employing state-of-the art techniques to successfully fight pain. 

Pain associated with mesothelioma changes from mild, episodic, and localized, to severe and chronic as the disease progresses. The first symptoms of pain depend on the type of mesothelioma.  For pleural mesothelioma, the initial symptoms are a nagging discomfort or mild pain in the chest area or in your back. For peritoneal mesothelioma, the first symptoms are abdominal or pelvic discomfort, and, in some cases, bowel obstruction and its resultant pain.

During the initial stages of mesothelioma, pain can be relieved with over-the-counter analgesics, such as aspirin, Tylenol or ibuprofen (Advil, Motrin).

As mesothelioma progresses and destroys surrounding soft tissue and nearby nerve endings, the pain increases considerably.  If the mesothelioma spreads into the chest wall, muscles or ribs, you may experience severe pain.

Pain Management Techniques

Doctors have several options for treating mesothelioma pain.  Initially, with the assistance of the patient, the doctor assesses the pain and develops a treatment plan.   

Non-Invasive Drug Therapy

Drug therapy is the primary method for treating mesothelioma pain.  There are 3 types of medicines used for pain relief:

• Non-Opoids are pain-relieving medicines such as acetaminophen (Tylenol) and NSAID’s, such as ibuprofin, which can be purchased over-the-counter and taken orally.  These are usually the first choice for mild pain.  Because of certain side-effects, however, doctors do not recommend anything greater than the maximum daily dosage.

• Opoids are the strongest medicines available to treat pain.  Opoids, such as codeine, morphine, oxcodone, fentany, and hydromorphone are very effective in relieving mesothelioma pain.  These drugs also have side effects, and managing these side effects is an important part of pain management.  Opoids are administered orally or intravenously.

• Adjuvant analgesics are medicines intended for purposes other than pain relief.  A number of these are used to alleviate symptoms associated with mesothelioma, such as antidepressants, anticonvulsants, and steroids. 

Epidural Implants

If orally or intravenously administered drugs are not effective in easing pain, mesothelioma doctors may prescribe a solution containing local anesthetics and opioid analgesics that is delivered epidurally, that is, 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, permitting 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.

For additional information on pain management, and to obtain a copy of Cancer Pain: Treatment Guidelines for Patients, which was released in January, 2004 by the American Cancer Society and the Comprehensive Cancer Network, call us at 1-800-362-1479.

Emotional Support to Help Relieve Pain

As with all aspects of mesothelioma, emotional support from family and / or professional counseling can play a key role in pain management.  Improving a patient's mental health helps minimize the fear, anxiety and depression that can make the physical pain worse, or feel worse.

To find out more about emotional support, click here.