Lung Cancer Survivors Report Greater Emotional Effects Five Years After Diagnosis

Lung cancer survivors reported that emotional effects are more problematic for long-term survivors after five years, according to recent survey results presented at the International Association for the Study of Lung Cancer’s 19th World Conference on Lung Cancer in Toronto, Canada.

“People with lung cancer have greater unmet physical and emotional needs from the side effects of cancer. They also have higher rates of depression,” Said Maureen Rigney, a licensed clinical social worker and Director of Support Initiatives for Lung Cancer Alliance (LCA).

“This is hugely important when we look at the latest Globocan estimates that there are over 2 million people living with lung cancer across the world right now,” she added. “We know that’s only going to increase as screening is adopted across the world. … People are living longer with lung cancer and so we need to understand more about their disease.”

LCA conducted a needs-assessment survey online, consisting of 122 questions on treatment and smoking histories of the respondents for which patients, survivors and their loved ones could answer anonymously. In addition, 10 long-term survivors answered via telephone.

The group queries as to the most common and problematic symptoms and side effects individuals experienced, as well as their most problematic experiences during treatment, just after treatment ended and in the long-term (five-plus years).

In total, 820 individuals participated, including 471 who self-identified as patients or survivors and 349 who self-identified as caregivers or loved ones of patients or survivors. Of those, 21 percent of survivor respondents were long-term, meaning they were diagnosed five or more years prior.

The most prevalent and problematic experiences during all three periods were dyspnea (difficulty breathing), anxiety and fatigue.

Among long-term survivors, 74 percent underwent surgery, 43 percent experienced a recurrence, 5 percent had joined a clinical trial, none were smokers, only 21.5 percent had survivorship care plans — and worse 12.7 percent did not know about them – and 11.4 percent had palliative care discussions, but only 3.4 percent actually received it.

Physical effects typically included pain, shortness of breath and fatigue, while emotional effects consisted of stress, anxiety/worrying and depression. Moreover, financial effects arose among responses, which included costs of care, transportation issues and loss of work.

Of note, the most common late and long-term symptoms included shortness of breath (39 percent), fatigue (28 percent), short-term memory (27 percent) and anxiety (25 percent).

“The emotional effects were more problematic for long-term survivors, just after treatment ended and even after five more years of survivorship,” Rigney said.

From these results, LCA created a webinar series to help individuals cope with those effects.

“Long-term survivors are only growing in number and we really need to use their wealth of information so that we can understand their experiences,” Rigney added. “We know their experiences are different than other types of cancer survivors, but they are underrepresented in survivorship research. And as we found out through our survey, all we have to do is ask. People are willing to share their experiences with us.”