A surprising cancer demographic warrants increased attention and support.
Sharon Cavone, BSN, RN, OCN,
When it comes to lung cancer, recent statistics published by the National Cancer Institute show progress in the right direction. For the past 10 to 15 years, rates of new cases and number of deaths from lung cancer in both men and women have steadily declined, and 5-year survival percentages have increased.1 Overall, the numbers are encouraging and reflect well on efforts to increase public awareness regarding the risks associated with smoking and secondhand smoke. This is good news. Even so, lung cancer remains the leading cause of cancer death in the United States.
In 2018, an estimated 154,050 people will die from the disease, more than from cancers of the breast, prostate, and colon combined. Six out of every 100 adults living in the United States will receive a diagnosis of cancer of the lung—more than 234,00 during this year alone.1 The median age at diagnosis and death, respectively, is 70 and 72; however, a surprising demographic is drawing the attention of clinicians in the United States and throughout the world. These patients are much younger, in their 20s, 30s, and 40s; tend to be women; are otherwise fit, with few or no comorbidities; and—perhaps most troubling—are nonsmokers.2,3
Oncology Nursing News® interviewed several cancer care experts to learn more about how the medical community is addressing this trend, the unique issues facing these young adults, resources available and those yet needed, and the pivotal difference nurse navigators make for patients along their unforeseen lung cancer trajectory.
DIAGNOSIS IS OFTEN INCIDENTAL
Diagnosing lung cancer early improves outcomes, but doing so is challenging, particularly among young, healthy patients with no high-risk factors. “Looking for lung cancer is generally not on anyone’s radar,” says Sharon Cavone, BSN, RN, OCN, oncology nurse manager at Penn Medicine Princeton Health in Plainsboro, New Jersey. She tells providers, “Look for the outliers. When some­body doesn’t fit the profile—question.”
Cavone is seeing more young adults diagnosed with lung cancer, many of whom are women. In this population, the disease is often found inciden­tally, following an evaluative x-ray or CT scan for some other condition, catching patients and even clinicians off guard. She has seen it happen time after time: “They developed a cough, went in for treatment, and their cough continued. First they took cough syrup, then an antibiotic, followed by another. Eventually they had an x-ray, and suddenly, here they are with me—shocked, in a panic, and completely overwhelmed.”
For others, it starts with abdominal pain, hip pain, an accident, or a sports injury that leads them to an emergency department, sends them to an imaging room, and ends with them in an oncol­ogist’s office, asking if they are going to die.
Young people are more likely to be symp­tomatic at diagnosis and have advanced-stage disease.3 Lung nodule programs, like the one at the Main Line Health (MLH) regional acute-care hospital system in Philadelphia, Pennsylvania, help providers capture lung cancers earlier by identifying suspicious nodules found incidentally during imaging scans. Because lung cancer begins as a nodule, follow-up screening and tracking allow clinicians to monitor incidental nodules for changes and conduct further testing when needed. Upon discovery of a lung nodule, the patient’s primary care provider is notified by a nurse navi­gator, who informs them of the tracking program and offers patient referral to a pulmonologist. For those who opt in, the program’s team of experts evaluate, plan, and coordinate care on a case-by-case basis, according to standardized criteria.4
Rosemarie Tucci, MSN, RN, AOCN, a lung cancer nurse navigator at MLH, describes the success of the program, which she coordinates: “Over the past 4 years, stage at diagnosis has shifted dramat­ically from being predominantly III/IV [advanced] to I/II. All were found incidentally.” It is important to note that most lung nodules (95%) are benign.5 Although this statistic is comforting, it should also serve as a catalyst for developing strategies aimed at intercepting the remaining 5%.
The service is unquestionably valuable when it comes to improving survival through early detec­tion. Most costs associated with the program are covered by insurance, excluding co-pays. For those without insurance, other options, such as clin­ic-based services, are available.
PHYSICAL, SOCIAL, AND FINANCIAL ISSUES
The most common type of lung cancers seen in young adult nonsmokers are non—small cell adeno­carcinomas with ALK rearrangements or EGFR mutations.3,6 Treatment options vary and include surgery; chemotherapy; and, more recently, immu­notherapy, which Tucci says “has taken over in the last year or so.” She says she has seen “phenom­enal results,” as has Chelsea Simpson, BSN, RN, OCN, a lung nurse navigator at Wesley Medical Center in Wichita, Kansas, which also has an inci­dental lung nodule program in place.
“There is a lot about immunotherapy we still don’t know, such as long-term effects,” Simpson acknowledges. For example, certain advanced tumors testing positive for PD-L1 expression, but not for EGFR or ALK mutations, are treated with FDA-approved pembrolizumab (Keytruda), which helps the immune system detect and attack cancerous cells. “Side effects often don’t appear early in the treatment, as it takes some time for the immune system to respond to the drug,” Cavone says. “During the first 2 months, the tumor continues to grow. Once the therapy begins to work, [adverse events; AEs] kick in. Think anything ‘-itis’: colitis, thyroiditis, arthritis, pneumonitis, uveitis. These may be managed initially by stopping the drug and later, by steroid dosing.”
AEs from immunotherapy treatment can go beyond annoying for patients; they can also be isolating, such as an acneiform rash. “The rash can appear anywhere, including the face. It is painful and can worsen, even causing infec­tions,” Simpson says. “Steroids can counteract [AEs] from immunotherapy; reducing the dose of treatment is also an option. For patients, going off treatment is terrifying. It becomes a balancing act to find the best dose with the least amount of adverse [events].” The rash can lead to insecurity about going out in public, as can diarrhea, which can be so severe that patients may find it impos­sible to even commute to work.
In addition to the physical ramifications of cancer treatment, young people must deal with pyschosocial and financial issues. Most of these patients work full time. They may be married with small children and have busy lives. Cancer treatment is time-consuming and expensive. Their families may depend on 2 incomes to make ends meet. Juggling the demands of work, family, and treatment adds another level of stress. Resources, although limited, are available to help patients deal with issues regarding work; for example, Cancer and Careers offers advice, education, and online tools for working through treatment. “It’s a great resource,” Cavone says. “They help patients answer many of the questions they have, such as ‘What can I say to my employer? What should I say? What if I don’t want to tell them?’”
Social workers like Angelique Caba, MSW, LCSW-R, director of social work administra­tion at CancerCare, also provide a wide range of comprehensive services to help patients manage the practical and psychosocial challenges related to cancer and its treatment. For young adults, the issues accompanying lung cancer diagnoses are numerous, and supportive resources are limited.
“Cancer of any kind is stigmatizing, but when you are not a smoker and have lung cancer, the isolation can be overwhelming,” Caba says. “In addition, young adults, particularly those in their 20s and early 30s, often feel like they don’t fit in, particularly in their treatment settings. They are either treated in a pediatric depart­ment with patients who are quite a bit younger, or they are treated in an adult setting where a good portion of the patients are typically quite a bit older.”
Connecting patients with other patients their age, even if they have different cancer diagnoses, helps normalize their situation. The Lung Cancer Foundation of America’s website offers stories of diagnosis and survival, told by patients themselves.
Relationships are extremely important for young patients, as is independence. They may have just moved away from home. They worry about dating, college, money, and fertility. They may be working but not yet in a career. Finances can be a real struggle; the cost of treatment is often overwhelming when added to the cost of housing and other necessities. Social workers are well versed in accessing vital resources for patients and helping them identify points of contact, such as case managers, patient and finan­cial navigators, and patient advocates. Often, however, resources are either stretched too thin or not readily available.
Younger women may want to discuss how cancer will affect their ability to have children. Women in their 30s may wonder how to tell their chil­dren they have cancer. Caba encourages patients to bring any medical questions to their medical team. She also urges clinicians to do their best to help patients focus on the present: “Look at the person as an individual. Where are they in their life? What would be most helpful? Remember to support them in the trajectory of their life, not solely the trajectory of their cancer.”
ONCOLOGY NURSE NAVIGATORS: MAKING A DIFFERENCE
Few play a more pivotal role for patients living with cancer than oncology nurse navigators. For young adults with lung cancer, they are difference makers. Although it is difficult to prioritize the many responsibilities of the nurse navigator, key among them are education and coordination of care. To be most helpful to their patients, navigators should stay informed about best practices, disease trends, current treatment options, barriers to care, and available resources. Participating in case reviews, local and national conferences, and continuing education opportunities is imperative for main­taining an up-to-date knowledge bank from which to draw when educating others, including patients.
Effectively communicating information to young adult patients includes addressing their fears, ques­tions, and options in ways they can understand. In addition to explaining the staging and treatment process, nurse navigators facilitate decision making by educating patients about expected outcomes and possible AEs from therapy. Because AEs from immunotherapy differ from those associated with chemotherapy, it is important for nurse navigators to stay aware of and educate their patients about these differences and what to do should they occur.
Patients expect that if they go to the emergency department or their primary physician with a cough, diarrhea, a rash, a headache, or fatigue, the nurses and doctors will either know what to do or will contact their oncologist or nurse navigator. This is not necessarily true, according to Cavone. “There is a real need for immunotherapy education for emergency department and primary care staff,” she says. “When patients on immunotherapy get sick, clinicians need to think outside the box. Instead of spending time waiting for blood cultures, sputum cultures, or C diff [Clostridium difficile] results, these patients need to get started on steroids.” Instructing patients to contact their oncologist or nurse navi­gator can decrease delays in treating AEs.
Smoking is well recognized as the leading risk factor for lung cancer. Addressing the stigma of lung cancer is a new challenge facing health educators, who are encountering more patients who have never smoked. Researchers do not know the reason young nonsmokers develop lung cancer.6 Despite the unknowns, healthcare professionals should prepare themselves to identify and care for this unique demographic through research, education, and advocacy.
Ellen Rice Tichich, MFA, MSN, RN-BC is a clinical nurse educator and freelance health writer.