The Voice

Beyond the Diagnosis: The Daily Reality of Living with Lung Cancer

By Grace Ballenger

Lung cancer statistics and treatment plans paint a clinical picture, but they often overlook the human story. What does it truly mean to navigate daily life with this disease? Beyond the medical charts and mortality rates, a vital question emerges: how does lung cancer reshape the everyday experiences of those it affects?

When doctors ask patients about their quality of life, they ask about how well patients can function physically, psychologically, cognitively, socially, and in their life roles (i.e. as family members or friends). Doctors also want to know how severe the patients’ symptoms are, if they’re experiencing financial burdens and how they’d say they’re doing overall^1,2,4. 

For years, there was little research on quality of life specifically for lung cancer², but fortunately, there’s been more research recently. Although the scale to assess quality of life is subjective, it’s often used along with more objective medical tests, and doctors have found that quality of life helps predict survival¹. Assessing a person’s quality of life is an important part of a multifaceted health evaluation that goes beyond just the clinical evaluation of symptoms. 

Symptoms of lung cancer can include fatigue, loss of appetite, cough, shortness of breath, pain, and coughing up blood¹. Living with any, or all these symptoms is significant, and can affect quality of life psychologically, socially and cognitively. The physical impact of these symptoms is most obvious, as they make it difficult to walk and carry things and have a ripple effect on a patient’s wellbeing. For example, fatigue, shortness of breath, pain and coughing also have a profound emotional and cognitive impact, especially when these symptoms create a lack of sleep. Although it may not seem as severe as the other symptoms, patients have reported that fatigue was the most limiting symptom for them¹. Because there can be side effects to deal with when undergoing lung cancer treatments, it’s important for patients to be prepared and assisted in managing these issues, to maximize quality of life. 

Demographic factors, such as gender, age, marital status and employment status can also impact quality of life³:

• Women were twice as likely to rate their quality of life as “poor” than “good”, with men pretty evenly split between evaluating their quality of life as “good” versus “poor.”  
• People under 52 years old were more likely to report a good quality of life despite treatment, and people over 59 were more likely to report poor quality of life. 
• Patients with less spousal support (i.e. divorced, unmarried) were more likely to report poor quality of life. 
• Patients employed full-time were more likely to report good quality of life, patients employed part-time were less likely to rate their quality of life as “good”, and unemployed patients were about five times more likely to rate their quality of life as “poor” than “good”⁴. 

When doctors recommend lung cancer surgery, they consider not only if it will prolong a patient’s life, but also its impact on quality of life. Immediately after surgery, 81% of patients report poor quality of life overall. Although the statistics about surgery show that most patients can return to similar levels of functioning in 3 to 6 months, some patients will continue to report low quality of life for longer. In some cases, self-perception may not match the medical reality. Perhaps unsurprisingly, patients who were already struggling to function and experiencing serious symptoms before surgery will report lower quality of life after surgery⁴. Surgeons may remove just the tumor and the tissue around it, remove a section (or lobe) of a lung, or remove an entire lung. Patients that had more tissue removed reported lower quality of life. As a result, surgeons have moved toward less invasive and video-assisted surgical procedures. Newer procedures can often be done with smaller incisions than traditional, more comprehensive surgery. The less-invasive procedures led people to score more highly on both physical and social/role-based parts of the quality-of-life assessment⁵.

When patients were diagnosed in earlier stages and are no longer in active treatment, they may still have some level of vigilance to make sure the cancer doesn’t come back, even when there are no longer major symptoms^1,2,6. Health uncertainty comes with great stress. Hildy Grossman, president and founder of Upstage Lung Cancer, reported that even though her lung cancer was diagnosed at Stage 1, she remembers asking herself if she should buy a new pair of blue jeans for fear she may not be around the next year. She said, “It took a couple of years to lessen the worry about survival, although it never goes away completely.”

It’s challenging to simply go about life as though the disease never happened.  When some of the symptoms of the disease are present, patients may see their relationships change as caregivers have ongoing responsibilities. One study attempted to ease the transition into the post-treatment period by developing a virtual program that offered patients cognitive behavioral therapy. The pilot program was generally well received by patients and continued to evolve with patients’ suggestions for improvement. Researchers want to expand this program on a larger scale⁶.

Finally, palliative care is an area of medicine focusing on preventing and treating side effects and ongoing symptoms. Having access to palliative care may improve quality of life throughout the lung cancer journey. It can be used at any point in the process, including at the point of diagnosis.  It can also be used alongside other treatments aimed at slowing or stopping lung cancer progression. Palliative care is provided by teams of doctors, nurses and other healthcare professionals in settings such as hospitals, outpatient centers and homes⁷. 

Be sure to listen to our companion Backstage @ Upstage podcast ”Improvise Life” with our guest James Hiter, of Streak for a Cure. 

Sources:  

1. Quality of life of patients with lung cancer | OncoTargets and Therapy
2. Improving Quality of Life for Lung Cancer Survivors | American Cancer Society
3. Quality of Life After Lung Cancer Surgery | Verywell Health
4. Factors influencing the psychology and quality of life in lung cancer patients | Saudi Medical Journal
5. Does video-assisted thoracoscopic lobectomy for lung cancer provide improved functional outcomes compared with open lobectomy? | European Journal of Cardio-Thoracic Surgery
6. Virtual Intervention for Patients with Lung Cancer | Lung Cancer Foundation of America
7. Palliative Care: Improving Quality of Life at All Stages | GO2 for Lung Cancer