Nurses Lead the Way in the New Era of Chronic Lung Cancer Care

When Beth Sandy, CRNP, started her career at the Abramson Cancer Center at the University of Pennsylvania 23 years ago, the clinical landscape for lung cancer was a stark contrast to the modern era. "I’ve seen a lot in lung cancer from the start when we only had just a couple of drugs," Sandy recalls.

In those early days, a diagnosis was often a rapid crisis, with nursing care focused on high-intensity interventions and preparing patients for a very limited life expectancy.

Today, the paradigm has shifted entirely. With the advent of targeted therapies, immunotherapies, biomarker testing, and bispecific antibodies, Sandy and her colleagues now treat patients who are living 5, 10, or even 15 years with active but controlled disease.

This evolution has fundamentally transformed the oncology nurse’s role from managing an acute terminal event to building a multiyear partnership centered on long-term survivorship, quality of life, and the management of a chronic condition.

The Chronic Disease Paradigm: From Crisis to Long-Term Care

The statistical reality of lung cancer in the United States is undergoing a dramatic shift. According to the American Cancer Society, the 5-year relative survival rate for localized non–small cell lung cancer (NSCLC) has reached 67%[1]. Even for the traditionally more aggressive SCLC, survival rates are improving, with localized disease showing a 34% 5-year survival rate. As of January 1, 2025, it was estimated that over 680,000 lung cancer survivors are living in the US, with a significant portion of them—approximately 82%— aged 65 or older.

Jennifer Hull, RN, a research nurse at New York University Langone Health with 18 years of experience in thoracic oncology, notes that the life expectancy question is no longer the inevitable focus of initial patient visits.

"We’re treating this like a chronic disease," Hull explains, comparing modern lung cancer management to the long-term treatment of diabetes or high cholesterol. The clinical goal has moved from short-term survival to maintaining quality of life over potentially lifelong treatment cycles.

Pam Plasket, RN, BSN, OCN, CHPN, an oncology nurse navigator at Wellstar Health System, observes that this shift requires rethinking the very phases of survivorship. Historically, survivorship was categorized into acute, extended, and permanent phases, or "living with," "living through," and "living beyond" cancer.

However, Plasket argues that many patients with lung cancer now exist in a unique, unclassified space: They are "surviving" while remaining on active treatment for the long haul. This living-with-cancer state requires oncology nurses to be constantly vigilant for the cumulative effects of disease, the late-occurring adverse effects of treatment, and the impact of comorbid conditions such as chronic obstructive pulmonary disease or cardiovascular disease[2].

The Transition: Graduation to Survivorship

At Memorial Sloan Kettering Cancer Center (MSKCC), the transition from active, aggressive treatment to long-term monitoring is framed as a significant milestone: "graduation." Amy Devigne, NP, who has spent over 3 decades at MSKCC, explains that patients typically move to the thoracic survivorship program after reaching 2 years of disease-free status.

In this survivorship model, the relationship between the provider and the patient shifts. The surgeon takes a backseat role, and the nurse practitioner becomes the primary longitudinal provider.

"It’ll be a relationship with a nurse practitioner reviewing if you’re up to date with all of your screening studies," Devigne explains. This transition is specifically designed to move care from a cancer-focused lens to a holistic approach that prioritizes overall quality of life[3].

Monitoring is lifelong because lung cancer survivors face a dual risk: the potential for recurrence and a persistent 1% annual risk of developing a second primary lung cancer. Nurses play a critical role in educating survivors about which symptoms to watch for without causing unnecessary panic, focusing on routine surveillance scans every 6 months for the first 2 years, and annually thereafter[4].

Mastering Long-Term Symptom Management

As survival times extend, the oncology nurse's expertise in managing cumulative toxicities becomes paramount. Sandy points out that while some adverse effects—such as the acneiform rashes associated with EGFR inhibitors—often wax and wane or resolve after the first few months, others are much more persistent[5].

One of the most challenging long-term adverse effects to manage is edema, particularly for patients on MET, ALK, or ROS1 inhibitors. "Edema is our most difficult [adverse] effect to manage," Sandy says, noting that it is often a third-spacing of fluid rather than a simple fluid overload. Because standard diuretics often fail, nurses must lead patients through lifestyle interventions, such as the consistent use of compression stockings and elevating lower extremities. In some cases, this toxicity can become a dose-limiting factor that impacts both quality of life and treatment adherence.

Devigne manages a suite of "itises"—immune-related adverse events such as pneumonitis, thyroiditis, or hepatitis. Her role involves ensuring patients are integrated with various specialists, such as pulmonary or endocrinology doctors, to manage these chronic inflammatory responses. For patients on advanced bispecific T-cell engager therapies, Plasket guides them through initial high-stakes risks such as cytokine release syndrome and neurotoxicity.

Once those early hurdles are cleared, the focus shifts to the nearly universal burden of fatigue, which affects up to 90% of lung cancer survivors. Nurses must differentiate between fatigue caused by the cancer, the treatment, or organic disorders such as thyroid dysfunction or depression[6].

Addressing Financial Toxicity and Practical Barriers

The cumulative cost of years of specialized targeted therapies and immunotherapies creates a heavy burden known as financial toxicity. Sandy emphasizes that nurses must be proactive in screening for this, even if the topic feels awkward to broach.

Medicare Part D patients are particularly vulnerable at the start of each calendar year. "In January and February, they’re going to get hit with that co-pay," Sandy warns, noting that a Medicare cap of $2,100 annually for high cost medications, which can be paid all at once or spread out as a monthly payment, can be a significant hurdle for many older adults. Oncology nurses serve as the primary link to pharmaceutical company financial representatives and free drug programs, ensuring that patients do not skip doses because of cost concerns.

Beyond medication costs, Plasket focuses on practical financial needs that can disrupt long-term care. This includes navigating grants for groceries and travel expenses, and providing gas cards for patients who must travel significant distances for treatment over many years. Research indicates that more than 2 million US cancer survivors have forgone needed medical services due to financial concerns, highlighting the critical nature of nurse-led financial navigation.

The Role of Education in Self-Care

With the rise of oral oncolytics and self-administered maintenance therapies, a significant portion of long-term care now occurs outside the clinic. Hull emphasizes that patient and family education has shifted to ensure survivors are empowered over years of self-care.

Nurses must ensure patients understand the half-life of their medications—warning that missing just a week of certain oral pills could allow the cancer to grow or trigger new adverse effects. This education is the foundation of adherence and safety in a chronic care model.

The Psychological Burden: "Scanxiety" and Emotional Resiliency

Despite improvements in survival, the psychological toll of lung cancer remains high, with up to 80% of survivors reporting psychological distress—a rate 3 times higher than that of other cancer types. A primary driver of this distress is "scanxiety," the intense anxiety felt in the week leading up to surveillance imaging. Devigne acknowledges that while scanxiety rarely disappears entirely, nurses can help patients manage it through proactive coping mechanisms such as yoga, walking, meditation, and simply "talking it through."

Hull notes that as nurses form deep, multiyear bonds with patients, they often begin to feel like family. This closeness allows nurses to help patients reframe their lives and find a "new normal." By reminding patients of their past stable scans and their continued physical well-being, nurses help ease the emotional hurdles of transitioning from aggressive treatment to long-term surveillance.

Specialization, Stigma, and the Future of Care

As Sandy looks toward the future of the profession, she highlights 2 critical areas that require more attention: the lasting impact of posttraumatic stress disorder and the persistent social stigma of lung cancer. "Society has created this stigma around lung cancer [for both] smokers and nonsmokers alike," Sandy notes, explaining that many patients feel blamed for their illness and choose to suffer in silence rather than seek support.

Sandy’s vision for the future includes the subspecialization of cancer counseling services. "A patient with lung cancer, their counseling needs may be very different from a patient who has leukemia or breast cancer," she says.

While Penn Medicine is currently piloting lung-specific counseling programs, Sandy believes the key to the future of the nurse-patient relationship lies in the simple, yet profound, act of being a present and nonjudgmental listener.

For the modern oncology nurse, the mission has moved beyond helping a patient survive a crisis; it is about helping them persevere and find meaning in a life that may now span decades beyond their initial diagnosis. In this new era, the oncology nurse is not just a clinician, but a long-term partner in survival.

References

1. Lung cancer survival rates. American Cancer Society. Updated June 27, 2025. Accessed July 17, 2026. https://www.cancer.org/cancer/types/lung-cancer/detection-diagnosis-staging/survival-rates.html
2. Rajapakse P. An update on survivorship issues in lung cancer patients. World J Oncol. 2021;12(2-3):45-49. doi:10.14740/wjon1368
3. Lung cancer continued care. Memorial Sloan Kettering Cancer Center. Accessed July 17, 2026.https://www.mskcc.org/cancer-conditions/lung-cancer/continued-care
4. Long-term care of lung cancer patients: a novel thoracic survivorship program. J Oncol Navig Surviv. 2017;8(2). Accessed July 17, 2026. https://www.jons-online.com/issues/2017/february-2017-vol-9-no-2/long-term-care-of-lung-cancer-patients-a-novel-thoracic-survivorship-program
5. Sacharian K. Nursing considerations for lung cancer survivorship care. Oncology Nursing Society. August 5, 2021. Accessed July 17, 2026. https://www.ons.org/publications-research/voice/news-views/08-2021/nursing-considerations-lung-cancer-survivorship-care
6. Vijayvergia N, Shah PC, Denlinger CS. Survivorship in non-small cell lung cancer: challenges faced and steps forward. J Natl Compr Canc Netw. 2015;13(9):1151-1161. doi:10.6004/jnccn.2015.0140