Survivorship

Lung cancer survivors are still an underrepresented population in both available resources and research. As Deborah Benton, a lung cancer survivor, states, ‘I quickly found there were no support groups and pink ribbons for lung cancer [67].’ While definitions of cancer survivorship vary from person to person, with Pozo et al stating that ‘the most accepted definition includes from the day of diagnosis to end of life and may involve family members and caregivers’ it is still common for patients to consider end of treatment or remission as a sign of survivorship [68].

The reality with any cancer is that it is a lifelong journey. Effects from the cancer and its treatments can linger or appear later on, symptoms can appear, disappear or reappear over time, comorbid conditions can be present themselves and second or secondary cancers may appear [69]. This is not to paint a bleak image of survivorship but rather to help patients and their loved ones understand the importance of approaching lung cancer survivorship and managing it as another aspect of the cancer journey.

Lung cancer survivorship care is complex, survivors and their care teams have to consider, among other things, factors like lung cancer survivors’ greater risk for developing a second cancer or tobacco exposure increasing the risk of developing related diseases such as chronic obstructive pulmonary disease (COPD) and cardiovascular disease [70]. A survivorship and care plan developed between the patient, their care team and their primary care doctor is ideal, as it provides a more certain path for the patient and can promote cooperation between the care team [71].

Long-term treatment impact

Treatments from surgery, radiation and chemotherapy can affect the quality of life of lung cancer survivors. Although some symptoms subside, treatment can have long-term or late term effects that can impact the life of the survivor. Around twenty per cent of cancer survivors experience a deficit in their quality of life, a number which Pozo et al say could be even higher among lung cancer survivors, who undergo intense, often aggressive treatment regimens [72].

Lung cancer survivors are also often older; approximately 68 per cent of lung cancer diagnoses are among those aged 65 years and older. Thus, the effects of aging and accompanying health problems can complicate and worsen their quality of life [73].

Cancer pain, dyspnea, and coughing are a few of the symptoms that may occur as a result of treatment or the cancer itself.

Dyspnea

Dyspnea which describes difficulty breathing or short labored breath is a symptom common to lung cancer. Surgical resection of the lungs often results in dyspnea along with other side effects like reduced lung capacity [74]. Dyspnea can be caused by airway obstructions, other lung illnesses, fluid buildup around the lungs or heart, stress and anxiety or inflamed or damaged lung tissue caused by radiation tissue (radiation pneumonitis) [75].

The Lung Cancer Alliance suggests a variety to help manage dyspnea and reduce breathlessness [76]:

  • If you smoke, try to quit. Your healthcare provider can help. Avoid smoky places.
  • Try to stay healthy. Wash your hands frequently, and stay clear of people who are sick.
  • Talk to your doctor about whether using an incentive spirometer (a device designed to improve lung function) might help improve your breathing.
  • Drink lots of liquids to stay hydrated. This can help thin mucus and make coughing easier.
  • Using a humidifier or a vaporizer may help thin mucus and make coughing easier.
  • Try light exercise, if possible. Exercise can help increase the flow of oxygen to your blood.
  • Sleeping with your head raised (on pillows) may make it easier to breathe.
  • Manage anxiety by taking slow, steady, deep breaths, and try to visualize to a setting that relaxes and calms you. Try to stay focused on the setting and breathe slowly.
  • Talk to your doctor about whether supplemental oxygen may be helpful.

Fatigue

Fatigue is described as a continuous lack of energy that impairs daily functioning and mood. Fatigue is very common, affecting up to about 90 per cent of cancer survivors [77]. In patients with lung cancer, fatigue is often seen with other symptoms like dyspnea, a depressed mood, and anxiety. Other lung cancer symptoms like changes in breathing, other health conditions, psychological distress and sleep disturbances can all contribute to fatigue [78].

Here are some of practical tips to prevent and manage cancer-related fatigue [79]:

  • Exercise regularly, as approved by your doctor.
  • Conserve your energy by planning tasks ahead, spacing tasks out over time, and asking for help.
  • Seek treatment for depression, pain, problems sleeping, or other conditions that may be adding to your fatigue.
  • Make sure you are eating enough food (especially protein!) and drinking lots of liquids.
  • Keep an activities journal and note your energy and fatigue levels at different times of day and with different activities. Finding patterns may help you to plan your day to minimize those activities that fatigue you the most.
  • Pace yourself.
  • Get plenty of rest, but don’t overdo it; short periods of rest are best.
  • Ask for help with tasks when you need it.

Coughing

Coughing is another common symptom of lung cancer and may remain as a symptom into survivorship. A persistent cough can interfere with the quality of life of survivors by making speech, eating and sleeping unpleasant or challenging [80].

Cancer-related pain and post-thoracotomy pain syndrome

Cancer-related pain is an unfortunate, distressing symptom for lung cancer survivors. Lung surgery, while offering the best survival outcomes to many patients, can cause a mild, but chronic pain in lung cancer survivors; known as post-thoracotomy pain syndrome, it is seen in up to 80 per cent of lung cancer patients [81]. Up to 45 per cent of patients report inadequate pain control and 40 per cent of five year survivors report cancer pain [82].

As a surgical procedure thoracotomy involves opening up the chest cavity and penetrating several layers of muscle tissue, neurovascular bundles and other soft tissue structures of the chest region [83]. Post-thoracotomy pain syndrome can cause pain that resembles nerve pain (neuropathic pain) which can be described as burning, shooting, tingling or the sensation of having something crawl underneath your skin [84].

Acute pain from thoracotomy is severe so often opioids are given to help with early stage pain management. Traditional non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, aspirin and naproxen can be used to provide relief from mild to moderate symptoms of post-thoracotomy pain [85].

Long-term psychological impact

Distress

According to Pozo et al, the overall psychological burden of cancer is referred to as distress. Cancer types are one of the best predictors of psychological distress [86]. In fact, lung cancer patients were identified as being three times more likely to experience distress than patients with other cancer types. Levels of distress follow the course of the disease and factors such as a previous history of mental health issues, a lack of social support, a lack of economic resources, long-term and late onset symptoms, and other conditions all contribute to a survivor’s ability to cope and manage psychological distress [87]. In addition, depression in cancer survivors has also been identified as a serious problem. Reported rates of depression among lung cancer survivors vary from 11 per cent to 44 per cent. Positive adaptation to distress is associated with a patient’s perceived social support and a positive coping style [88].

Anxiety and fear of recurrence

Anxiety is a common, anticipated response to a cancer diagnosis but survivors must also struggle with the anxiety and uncertainty of a cancer recurrence. As discussed above, lung cancer survivors are at a risk of developing a secondary cancer with non-small cell lung cancer (NSCLC) patients susceptible to a second malignancy, including second lung, larynx, and bladder cancers. Recurrence can occur within the first two years after diagnosis, but the risk remains elevated for up to ten years [89]. Cancer-related fear and anxiety do tend to decrease over time but it varies from person to person and can be triggered by the onset of an unexplained symptom, related medical appointments or external factors that remind survivors of their cancer [90].

Stigma

Like lung cancer patients, survivors have to cope with the stigma that accompanies the disease. As lung cancer is perceived as a preventable disease, the blame is therefore seen to fall directly on the patient’s shoulders. How the health system treats lung cancer survivors, how the society treats them, how support networks treat them and how they perceive themselves all has a direct impact on the health status of lung cancer survivors [91]. Perceived stigma, real or imagined, has been to shown to lead increases in depression and depressive symptoms in those with lung cancer. Stigma can also elevate levels of stress associated with the disease, social and psychological stressors, lack of access to care and social support. Resources for research funding and psychosocial support for both lung cancer patients and survivors alike are still sorrowfully lacking [92]. As Pozo et al state there needs to be recognition of the huge impact that stigma has on disease and psychological burden when developing strategies and resources for lung cancer patients and survivors [93].

References

[67] Benton, Deborah. “Living Life AC (After Cancer).” Lung Cancer Alliance. Lung Cancer Alliance, 22 Jan. 2015. Web. 16 May 2016.
[68] Pratt Pozo, Christie L., DHSc, Mary Ann A. Morgan, PhD, and Jhanelle E. Gray, MD. “Survivorship Issues for Patients With Lung Cancer.” Cancer Control: Journal of the Moffitt Cancer Center 21.1 (2014): 40-50. Medscape Multispecialty. Medscape, 2014. Web. 16 May 2016.
[69] ibid.
[70] ibid.
[71] ibid.
[72] ibid.
[73] ibid.
[74] ibid.
[75] “Shortness of Breath (Dyspnea).” Lung Cancer Alliance. Lung Cancer Alliance, 2016. Web. 17 May 2016.
[76] ibid.
[77] Pratt Pozo, Christie L., DHSc, Mary Ann A. Morgan, PhD, and Jhanelle E. Gray, MD. “Survivorship Issues for Patients With Lung Cancer.” Cancer Control: Journal of the Moffitt Cancer Center 21.1 (2014): 40-50. Medscape Multispecialty. Medscape, 2014. Web. 17 May 2016.
[78] ibid.
[79] ibid.
[80] “Tiredness (Fatigue).” Lung Cancer Alliance. Lung Cancer Alliance, 2016. Web. 17 May 2016.
[81] Pratt Pozo, Christie L., DHSc, Mary Ann A. Morgan, PhD, and Jhanelle E. Gray, MD. “Survivorship Issues for Patients With Lung Cancer.” Cancer Control: Journal of the Moffitt Cancer Center 21.1 (2014): 40-50. Medscape Multispecialty. Medscape, 2014. Web. 17 May 2016.
[82] ibid.
[83] “Post Thoracotomy Pain.” Pain Doctor. Pain Doctor, 2016. Web. 17 May 2016.
[84] “Types and Causes of Cancer Pain.” Cancer Research UK. Cancer Research UK, 12 Feb. 2015. Web. 17 May 2016.
[85] “Post Thoracotomy Pain.” Pain Doctor. Pain Doctor, 2016. Web. 17 May 2016.
[86] Pratt Pozo, Christie L., DHSc, Mary Ann A. Morgan, PhD, and Jhanelle E. Gray, MD. “Survivorship Issues for Patients With Lung Cancer.” Cancer Control: Journal of the Moffitt Cancer Center 21.1 (2014): 40-50. Medscape Multispecialty. Medscape, 2014. Web. 18 May 2016.
[87] ibid.
[88] ibid.
[89] ibid.
[90] ibid.
[91] ibid.
[92] ibid.
[93] ibid.