Understanding, Describing Cancer Pain | Online Support Group

Doctor Talking to Patient

When facing a serious illness like mesothelioma, one of the things people fear most is uncontrolled pain.

Today, health care providers have a much better understanding of pain and are well-equipped with tools to help their patients manage their pain. When patients begin tuning in to their discomfort, it helps them communicate specifics — location and intensity of their aches – to their health care team. It’s a valuable tool their physicians can use to more effectively manage that pain.

There are several reasons why someone with mesothelioma may experience pain. Surgical interventions can lead to post-operative pain. Chemotherapies can lead to bone pain and aches and tingling in hands and feet, known as peripheral neuropathy.

Radiation treatments also can lead to painful skin irritation and burning. Fluid buildup in the abdomen or chest creates tightness, pressure and shortness of breath.

Why Do We Feel Pain?

The perception of pain in our bodies is called nociception.

We feel pain when tissue damage is occurring or has occurred. Our brains interpret pain signals as something that is wrong in our bodies. That pain experience is influenced by many physical and psychological factors. It is completely subjective in nature.

Mesothelioma patients may feel pain as a direct result of the cancer itself or as a side effect of treatment. Understanding the location of their cancer and how different treatments affect their bodies can help them better express that pain to their physicians.

How Does Pain Affect Mesothelioma Patients?

The experience of pain can limit one’s activities, such as work, hobbies and chores. It is human nature to avoid movements and activities that cause pain. If it hurts to swallow, we limit our eating and drinking. If we feel pain when we walk, due to bone or muscle pain, we tend to remain still. When an area is painful, our muscles around that area contract and stiffen, causing even more pain.

Uncontrolled pain can affect our sleep patterns, too. When our brain receives pain signals, it is unable to switch into “sleep” mode and go through all the necessary cycles of deep rest.

Studies have linked anxiety and depression to chronic pain. When the brain is constantly receiving pain signals, the levels of serotonin in our brains are altered, contributing to clinical depression. Worrying about when and if the pain will return or worsen, is stressful. Many chronic pain patients have a coexisting anxiety disorder.

Communicating Your Pain

The first step to managing pain is to understand it, and then communicating that experience to your health care team. Pain assessment scales have been very helpful in helping patients and their health care teams comprehend and manage pain. Health care teams regularly ask most mesothelioma patients to rate their pain on a scale of zero (none) to 10 (intense). Physicians and nurses record these ratings in their patients’ medical records.

There are some helpful tips to effectively communicate your pain to your physicians. Most patients feeling discomfort say, “Doc, I’m in pain.” That’s simply too general. Your health care provider needs specific information in order to best manage your pain:

  • Location: Show your physician exactly where the pain is located and where the pain travels.
  • When/How It Began: Describe if onset was slow or sudden and if any event precipitated the episode.
  • Characteristics: Explain frequency, duration and intensity of pain by using words like mild, intense or severe. You can be more specific: Stabbing, throbbing and dull. Communicating pain is not easy, which is why pain assessment scales were developed.
  • What Improves/Worsens Pain: Describe if situations or events like weather changes, stress or lack of sleep reduce or increase your pain.
  • Response to Activities: Tell your doctor what activities increase your pain and those that relieve it. Some people find that prolonged sitting or standing can affect pain.

Log Your Pain

Keeping track of your pain on a daily basis is helpful. Your memory might not be as accurate when you are in your doctor’s office trying to remember specifics of everything you felt.

There are a variety of logs specially tailored for tracking pain that you can find on the Web, print out and record your pain. I recommend the online pain log by PartnersAgainstPain.com to track your aches daily.

Maximizing quality of life is very important while battling mesothelioma.

Poorly managed pain negatively impacts quality of life in all cancer patients. Remember: While you might not be control of your pain, you are certainly in control of understanding and communicating your discomfort to your health care team.

That amount of personal control will help you cope with mesothelioma pains and accomplish the best possible quality of life.

Questions & Answers from the May Online Support Group

Q: My doctor has me on the chemotherapy drug Navelbine (vinorelbine). I’m responding well and have few side effects. What’s the average response in other mesothelioma patients?

A: Most mesothelioma patients respond well to Navelbine. The drug is known for its relatively low toxicity profile, meaning it tends to cause few side effects in patients. How the tumor responds to the drug will depend on whether it is combined with another chemotherapy drug, as well as whether it is give as first-line or second-line chemotherapy. Early-stage mesothelioma tumors respond better to Navelbine than stage III or IV tumors.

However, a Denmark study that combined vinorelbine with cisplatin as a first-line treatment for stage III and IV mesothelioma patients reported an average response rate of 29.6 percent, median survival of 16.8 months and a two-year survival rate of 31 percent. Two complete tumor responses were also reported, meaning that the tumors completely disappeared in two patients.

Q: If mesothelioma is found in the lymph nodes, does that limit treatment options?

A: Years ago, the presence of mesothelioma in lymph nodes tended to limit treatment options for patients. But that approach has changed in recent years. Today, stage III patients are qualifying for aggressive, life-extending surgeries more often than in the past. Chemotherapy and radiation therapy are also options for many patients with mesothelioma in lymph nodes.

Q: Aside from pain medication, what other options are there to reduce pain?

A: There a number of techniques and therapies aside from medication that may help reduce pain in mesothelioma patients. Many people find that combining various techniques with pain medication helps to reduce pain more than with medication alone. Some techniques include TENS therapy, distraction strategies (like mental imagery or listening to preferred music), breathing techniques, yoga, acupuncture and herbal medicine.

This material was shared in the May 14, 2014, mesothelioma online support group.

If you have follow-up questions on anything discussed here, you can call [[+phone]] to speak with Karen Selby, our on-staff nurse.

Don’t miss the next online support group, on Wednesday, June 11. Sign up today!

  1. Sorensen, J.B., Frank, H., Palshof, T. (2008). Cisplatin and vinorelbine first-line chemotherapy in non-resectable malignant pleural mesothelioma. British Journal of Cancer, 99: 44-50. doi: 10.1038/sj.bjc.6604421
  2. Steele, J.P.C., Shamash, J., Evans, M.T., Gower, N.H., Tischkowitz, M.D., & Rudd, R.M. (2000). Phase II study of vinorelbine in patients with malignant pleural mesothelioma. Journal of Clinical Oncology, 18(23): 3912-3917. Retrieved from http://jco.ascopubs.org/content/18/23/3912.full.pdf

Dana Nolan, MS, LMHC, is a licensed mental health counselor who leads The Mesothelioma Center’s monthly support group. She specializes in working with individuals affected by cancer. Dana practices in Altamonte Springs, Fla.

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