Betsy Hullender Quinn, MSN, MA, RN, OCN
This year has seen an array of new therapies for people with lung cancer. FDA approval of two immunotherapies to treat non-small cell lung cancer (NSCLC), an ever-expanding understanding of the disease’s molecular differences, and new screening guidelines for high-risk patients to detect lung cancer at an earlier, more treatable stage, are helping patients live longer.
Nevertheless, not every patient’s tumor will have the genomic profile to benefit from the targeted agents, and for those who do, coping with treatment-related adverse events can be a challenge. The stigma that comes with lung cancer also endures, with assumptions made that a person with lung cancer must be a smoker, even though recent research is showing that incidence among never-smokers is rising worldwide.
What does this good news–bad news picture mean for the oncology nursing professional practicing today? Nurses will be supporting patients who are living longer with lung cancer (and their caregivers) and also are likely to encounter more patients with the disease as the population ages and knowledge of genomic and other risk factors advances.
Navigating Lung Cancer
One aspect upon which all experts agree is that lung cancer is a complex diagnosis, and a robust navigation program can make a huge difference for patients.
Betsy Hullender Quinn, MSN, MA, RN, OCN, has been the Thoracic Oncology Program coordinator at Memorial Health Care System in Chattanooga, Tennessee, for the past 4 years. She is the point person when a patient’s lung cancer is first diagnosed at her hospital, most often via referrals from an interventional pulmonologist. When they are first diagnosed, “patients are so overwhelmed—they don’t even know what they don’t know,” explained Quinn. She has put together a packet of information, in plain language, that she gives them during her initial visit, and she also helps to connect patients and families with whatever resources they may need, be they support groups, transportation services, financial support, or lodging for patients who may have to travel long distances from the surrounding counties in Tennessee, Alabama, or Georgia, that Memorial serves.
“Basically my job is to make sure that all the pieces of the puzzle are put together ... I make sure the necessary follow-up scans are ordered,” Quinn continued, “and that patients get in to see the medical oncologist, the radiation oncologist; they see them pretty quickly, usually within a week or a week-and-a-half.”
Quinn, who has been a nurse for nearly 40 years, praises the multidisciplinary team approach at Memorial that includes smoking cessation support, licensed oncology social workers, dietitians, and a pharmacy nurse, as well as massage and other complementary support professionals providing services such as acupuncture, mind–body therapy, and tai chi, all of which Quinn said patients find really helpful.
Connecting patients with lung cancer with the resources they need is essential, concurs Katie Brown, vice president of Support & Survivorship for the advocacy group LUNGevity. Brown began her career in patient and survivor advocacy following her father’s lung cancer diagnosis in 2002, a time when treatments for lung cancer had remained stagnant for 40 years and re- sources and support for patients and their families were scarce or nonexistent.
The environment is better now, she said, but newly diagnosed patients, especially, are hungry to learn more about the disease:
“They want to understand more about the reality of their disease, but they’re also looking for something to be hopeful for—to know that there are options, be they a plan B or a clinical trial—a lot of patients tell me that they did not have that discussion with their healthcare provider.”
LUNGevity helps connect patients and caregivers to support groups and other resources in their community, such as rideshare opportunities and copay assistance. While the larger cancer centers may offer an array of psychosocial and other resources for patients and caregivers, Brown noted, “The reality is, a majority of patients are being treated in community hospitals, where there may not be patient navigators or psychosocial support for patients.”
A New Therapeutic Landscape
As the class of agents targeting the PD-1/PD-L1 pathway expands in NSCLC, so does the potential population of patients who would be candidates for the groundbreaking immunotherapy, according to leading experts in the field.
Less than a year after the first agent gained the FDA’s approval in NSCLC, systemic immune checkpoint therapy has become the top choice for second-line therapy for patients with metastatic disease that does not harbor mutations for which there are molecularly targeted drugs.
In fact, patients with negative expression levels for the PD-1 ligand, PD-L1, demonstrate response rates to checkpoint inhibitors that compare favorably with the experience of patients who are treated with second-line chemotherapy without the attendant toxicities.
At her institution, Quinn has been involved in clinical trials evaluating the PD-1 immunotherapy nivolumab in lung cancer, and she has been impressed with the results:
“I have several patients doing well on Opdivo, who have failed on the platinum chemotherapy which is so toxic to patients.”
Quinn added that although side effects are fewer with nivolumab than with traditional chemotherapy, patients do mention fatigue. To address that challenge, she said that it is her job to ask such questions as: Are you eating right, what did you eat today, how much are you drinking, are you getting some physical activity, and are you getting out of the house?
On the targeted therapy front, there is also encouraging news, with the addition of osimertinib for patients with the EGFR
mutation who develop resistance to treatment with a prior tyrosine kinase inhibitor, as most patients do.
Brown said this approval is a welcome development. “For patients with the EGFR
mutation, a really high percentage of them will grow resistant to their targeted therapy, and Tagrisso is the first FDA-approved drug for patients whose lung cancer has developed resistance to previous treatment and developed a new mutation, T790M
“The good news,” Brown continued, “is that this is not the only option for people with lung cancer. There are so many other drugs currently being tested in clinical trials, and there will be more options down the road for people who grow resistant to the drugs they are currently taking ... the progress and the pace of research, it’s very exciting.”
Yet alongside this progress, “even today, lung cancer can be a really isolating disease,” Brown acknowledged. “November was Lung Cancer Awareness Month, but it’s not ‘Pinktober.’ We still don’t have a huge focus on this disease.”
Building awareness is a big part of Brown’s role. She said that when she meets with patients, they often talk about being asked, “Did you smoke? With other diseases, there is not the blame put on the patient as with lung cancer.”
Indeed, there are many causes of lung cancer, though smoking remains the biggest risk factor by far. Quinn noted free screenings her hospital hosted for veterans last year, and she received numerous calls from people worried about their exposure to other toxicants, including Agent Orange and asbestos, in addition to second-hand smoke. She added that she is seeing more patients in their 40s with lung cancer who never smoked.
Still, “the stigma from having lung cancer, especially from smokers, is, ‘oh, I have done this to myself.’”
Brown concurred that the face of lung cancer has changed. “It’s no longer the 75-year-old chain smoker.”
“If smoking didn’t exist, lung cancer would still be the 4th deadliest cancer killer ... We really work to emphasize that lung cancer can happen to anyone, that it’s everyone’s disease, and we need to invest in research—every 2.5 minutes someone is being diagnosed with lung cancer.”
Screening Those at High Risk
Last fall, the Centers for Medicare & Medicaid Services (CMS) announced that it would cover lung cancer screening using low-dose computed tomography (LDCT) for certain asymptomatic former and current smokers, following on earlier recommendations from the US Preventive Services Task Force (USPSTF). The USPSTF decision to give LDCT a “B” rating was a boost for lung cancer screening advocates, because it meant that as of January 2015, insurers must pay for this screening in individuals who meet the high-risk criteria (asymptomatic adults aged 55- 80 years with a 30 pack–year smoking history [equivalent to one pack a day for 30 years or 2 packs a day for 15 years] and who are currently smoking or quit within last 15 years). CMS has also adopted these criteria, although the CMS cutoff for LDCT coverage is 77 years.
Quinn has been involved with this screening program at Memorial since it began, and she has seen positive results. She recently reviewed the screening records for a cancer committee meeting, and reported that 88 screenings had been conducted over the previous two-and-a-half months. Memorial owns several large internal medicine practices in the area which helps get the word out on the benefits of screening.
“A lot of patients are having this done,” said Quinn. I treated a patient who had early screening in June. I spoke with him yesterday, and he’s going back to work, because it was caught very early. He was screened, he was treated, and he’s back to work. That is just one of those things that made my day!”
Reason to Hope
The American Cancer Society estimates that approximately 220,000 new lung cancers will be diagnosed this year, and an estimated 158,000 will die of the disease, reminding us that lung cancer remains the second-most common cancer for both men and women.
Yet, despite these grim statistics, there has never been more reason to hope.
“I have seen more progress in lung cancer research in the past 5 years than there has been in the last 40. It’s a hopeful time,” said Brown.
LUNGevity hosts HOPE summits every year which are 1-day regional events held throughout the country, as well as a 3-day national conference in Washington, DC, each May. In addition to educational sessions and lectures from top lung cancer experts and scientists, these forums offer an avenue for patients and survivors to meet each other and share their experiences.
“When we began our conferences, the only medical professionals that were involved were the speakers, but today, it’s really not uncommon to have medical professionals, industry partners, and nurse navigators attend our summits to learn more about unmet needs for people with lung cancer ... It’s a great way for them to get to know the people they are serving on a different level, to hear their personal stories, and contribute to the patient–expert conversation.”
Looking ahead, Brown said patients will continue to seek more education about their lung cancer, “so they can jumpstart that conversation with their doctor to find out whether a new treatment option is viable for them.”
“What I always tell my patients is to have hope, faith, and a good support system; these are so important with any kind of cancer, not just lung cancer,” said Quinn.
And, as the nurse and point person they see when they are first diagnosed, Quinn plays a central role in that support system:
“At this point in my career, I feel like this is the job where I have made the most difference. These patients are so appreciative, in part because they are so afraid.
“And, they know that they can pick up the phone and call me. I have talked to folks on the phone for an hour, just because they need to vent, they need to cry, they need to scream. I’m here to listen.”
Caring for the Caregiver
Caregivers are often the “unsung heroes” of the cancer experience, noted Katie Brown of LUNGevity. “There is a medical team supporting the patient, but we don’t really have anyone supporting the caregiver.”
To address that need, her organization is collaborating with Celgene Corporation on a new program, “Your Journey Together,” which launched in October.
This enhancement to LUNGevity’s Caregiver Resource Center features a series of videos, tip sheets, and other resources to help caregivers transition into their new roles, take care of themselves, and connect with others on the same journey. In addition, a monthly tweet chat (#LCCaregiver) is held at 7 pm CST the first Wednesday of each month. For more information, visit http://www.lungevity.org/caregiver
2015 FDA Lung Cancer Drug Approvals:
(Alecensa)—granted accelerated approval December 11 for patients with metastatic non-small cell lung cancer (NSCLC) whose disease progressed on crizotinib (Xalkori). (http://bit.ly/1lLNUtP
(Portrazza)—approved November 24 in combination with gemcitabine and cisplatin for first-line treatment of patients with metastatic squamous NSCLC. (http://bit.ly/1TBJKzC
(Tagrisso)—was granted accelerated approval November 13 to this once-daily tablet for the treatment of patients with metastatic epidermal growth factor receptor (EGFR) T790M mutation–positive NSCLC who have progressed on or after EGFR inhibitor therapy. (http://bit.ly/1XD6Rjf
(Opdivo)—approved October 9 for the treatment of patients with nonsquamous NSCLC with progression on or after platinum-based chemothera- py. Patients with EGFR or ALK genomic tumor aberrations should have disease progression on FDA-approved therapy for these aberrations prior to receiving Opdivo. The immunotherapy agent was approved March 4 for treatment of metastatic NSCLC with squamous histology. (http://bit.ly/1LIDGiX
(Keytruda)—received accelerated FDA approval October 2 for the treatment of metastatic NSCLC in patients whose tumors express PD-L1 and whose disease has progressed on or after platinum-containing chemo- therapy. (http://bit.ly/1PBksTR
(Iressa)—approved July 13 for the treatment of patients with meta- static NSCLC whose tumors have EGFR exon 19 deletions or exon 21 (L858R) substitution mutations. (http://bit.ly/21zjACR