Total cancer pain

Sr Rowan Robinson describes the different types of pain caused by cancer and treatment thereof as well as the concept of total cancer pain.

“It’s complicated” was the response given when I asked my patient to tell me about her cancer pain. It seems that pain is an extremely personal experience that can only be described by the person who is hurting: the cancer patient themself. 

Pain experiences can vary from day to day and from moment to moment depending on a variety of factors. These include emotional states, past experiences, fatigue and fear. In other words, pain can be experienced differently by the same person, under different conditions.

Causes of pain related to cancer

According to statistics, more than half of cancer patients will experience pain at some point. Although it may have been an unexplained pain that made you seek medical advice even before your diagnosis was made, there are several causes of pain associated with having cancer. 

>> Disease-related pain

This is the most common cause of pain. Especially if the tumour involves the bone or spreads into soft tissues causing nerve compression or injury. 

The experience of cancer pain may vary according to the type of cancer, where the cancer is in the body, and whether it has spread to other organs. For example, a patient that has cancer in the lining of the lung may not have any pain. But, another patient with cancer in the lining of the mouth may experience pain as the presenting symptom of the disease.

>> Medical procedures

Needle pricks, tissue sampling, surgical and other cancer treatments can also be painful and may be experienced as anything from mildly uncomfortable to extremely distressing. 

>> Side effects from treatments

This is also true for side effects of treatments, such as skin reactions, mouth sores, phantom pains and headaches amongst others.

Two types of physical pain

Physical pain can broadly be divided into two categories: nociceptive or neuropathic. 

1. Nociceptive pain, from the Latin word ‘nocere’ (meaning ‘to hurt’) is a sensory response to pressure, extreme temperatures, and chemical or toxic substances. When the nociceptive sensory messages are sent from the skin, bone, muscle and joints, the resulting pain is often described as throbbing, burning or crushing. 

The pain can be continuous or flare-up every now and then but the area that is painful can be easily identified. However, if the sensory messages are sent from the internal organs, words like deep, dull or cramping may be used to describe the pain that is often difficult to pinpoint.

2. Neuropathic pain is caused by damage to the nerves due to trauma, inflammatory processes and by certain chemotherapies. Words used to describe neuropathic pain may include burning, shooting, pins and needles, hot or cold. This type of pain may occur spontaneously in response to something that doesn’t usually cause pain. For example, a light caress, or it may create a heightened sense of pain, such as a finger prick being far more painful than would have been expected.

Deeply emotional experience

However, it appears that cancer pain is indeed a lot more complicated than physical pain alone. 

Pain is both a sensory and emotional experience to actual or perceived injury, telling us that something is wrong. 

So, therefore pain is not just caused by physical injury. But, it is also a deeply emotional experience, often influenced by fear, depression, anger, isolation, altered body image and changing life circumstances. 

Have you noticed that you can have blood drawn on one day with very little discomfort, but on another day the experience is different? Especially if you are feeling tired or if the coping mechanisms are spread a little thin on that day.

Understanding total cancer pain

The idea of total cancer pain includes physical pain as described: psychological pain from emotional distress; fear and uncertainty; social pain from feelings of isolation or abandonment; financial pain from expensive treatments and unexpected costs; and even spiritual pain from searching for the meaning of life and continued purpose. 

The barriers to management of cancer pain

Worldwide, the management of cancer pain remains a challenge. Barriers include patient-related factors, such as fear of medication (like morphine); addiction or dependence concerns; failure to report the pain; or the belief that pain is inevitable and part of the disease process which must be borne. 

Healthcare professionals may also present barriers, such as lack of knowledge about cancer pain; inconsistent pain management practices; inadequate communication between members of the multi-disciplinary team; and heavy workloads. 

Finally, available support systems may not be known and certain treatment options may not be available.

How can we help one another?

Cancer pain affects a person’s quality of life. Therefore, it should be a priority of care. So, how can we help one another? What questions should we be asking to better understand your total cancer pain and what words could you use to help us understand what you are feeling? 

Choosing the right words that best describe the different pains experienced can give clues as to the source of the pain and potentially provide a guide to the best treatment options. 

Some of these options may include very specific pain and other medicines prescribed by your doctor. But, other options can include interventions to improve the quality of sleep, or help with specific movements, improved exercise and breathing techniques. 

Sometimes just having someone listen to you can ease a hurting soul. Talk to trusted loved ones and members of the healthcare team and consider joining an established support group. Please don’t walk your cancer journey alone.

Sr. Rowan Robinson is an oncology/haematology nurse and educator with over 20 years’ experience. She currently leads a team of oncology nurse navigators at the Cancer Care Division of Netcare Ltd. She is passionate about caring for patients with cancer and finding ways to improve their journey within the healthcare system.

MEET THE EXPERT – Sr Rowan Robinson

Sr Rowan Robinson is an oncology/haematology nurse and educator with over 20 years’ experience. She currently leads a team of oncology nurse navigators at the Cancer Care Division of Netcare Ltd. She is passionate about caring for patients with cancer and finding ways to improve their journey within the healthcare system.

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