Although more research is needed, biomarker discoveries and advances in molecular diagnostics and drug development have ushered in the age of personalized medicine in the field of oncology and brought hope to countless patients, especially those with mutations that not long ago were considered “undruggable.”

, we spoke with two patients whose EGFR exon 20 insertion mutations were detected via next-generation sequencing. Thanks to two agents approved by the Food and Drug Administration in just the last 11 months, they can now receive more personalized and effective treatment. 

Further studies, however, are required to determine why the mutations can be so unrelenting, as one patient experienced after some time on the drug.

We also talked with two other patients about how they have benefited from vigilance and strict adherence to screening schedules that can 

. They show us the importance of follow-up throughout the cancer journey, even during survivorship.

Also in this issue, as part of CURE®’s 20th anniversary series, a cancer center director highlights the 

 in patients with lung cancer, which has also opened the doors to further development of effective treatments. She highlights the progress that has been made during the past 20 years and outlines what needs to be accomplished in the next 20 years to make it a more effective target.

“There’s real potential to be able to manage lung cancer in the future with fewer deaths than we have now, even though we are doing much better than we did back in 2002,” Joann Sweasy, director of the University of Arizona Cancer Center in Tucson, said in an interview.

Other topics addressed in this special issue are exercises for at-home 

, surgical treatment decision-making in early-stage lung cancer and the effect that a delayed diagnosis can have on patients.

As always, we hope you find our stories inspirational and informative. Thank you for reading.

For more news on cancer updates, research and education, don’t forget to 

Articles

From the Chairman

A Glimmer of Hope for Those With Lung Cancer

According to the Centers for Disease Control and Prevention, the symptoms of lung cancer can include chest pain, coughing and shortness of breath. 

Unfortunately, they can also be symptoms of other conditions such as pneumonia and bronchitis. Not only that, but the latter can also present as cancer on CAT scans and X-rays, thus resulting in delayed diagnoses.

“A provider’s first inclination might be to think of those conditions before thinking of lung cancer,” Dr. Akshu Balwan, assistant professor of pulmonary and critical care at The University of New Mexico School of Medicine in Albuquerque, told 

Lung cancer is often diagnosed by biopsy, but imaging tests are generally used to determine in which direction to proceed.

“For certain patients, I see the CAT scan, and (I think), this is cancer until proven otherwise,” Balwan explained. “And there are other ones that we see, and (it) looks more like inflammation and pneumonia than a cancer. But there’s considerable overlap in both the conditions and how they look.”

Delays in the diagnosis of lung cancer can affect whether patients see the right specialist and even the treatment they receive.

“Nowadays, most cancer centers have a multidisciplinary team, and ... with diagnosing lung cancer, we try to avoid those delays,” Balwan noted. “Instead of seeing everybody in the pathway, we want to try to get them to the treatment as soon as we can. We discuss and we try to get them to the right physician, whether it’s an oncologist, a surgeon or a radiation oncologist, in the shortest amount of time.”

That’s not to say that health care professionals cannot determine what lung cancer is and isn’t, but their conclusions may depend on the patient’s medical history, including smoking status.

“Most providers should be able to identify the chronicity of symptoms and would think about the diagnosis such as lung cancer in a patient who has smoked or has other risk factors for lung cancer,” Balwan told 

®. “Sometimes diagnosis can be challenging in patients who develop lung cancer despite being nonsmokers.”

Most physicians are receptive to what patients think, especially if they’re concerned about lung cancer and have the risk factors for it. 

But that doesn’t mean patients are immediately biopsied. Doctors tend to start with chest imaging to spare patients from such unnecessary complications as pain, infection and blood clots.

Balwan recommends that patients describe their symptoms in detail and seek care early on instead of waiting to see what happens.

“(It’s important to be) aware of your bodily functions and what is normal or abnormal for you to avoid any delays,” he explained.

Sometimes, he added, symptom duration can help a physician diagnose a patient in a timely manner, especially if that patient received treatment for another condition but saw no improvement.

“If your symptoms persist despite treatment for the diagnosis that you received, and are in line with possible symptoms with lung cancer, you should discuss (it) with your health care provider, especially if you have risk factors for lung cancer and consider chest imaging,” Balwan concluded.

Patients should describe their symptoms in detail and seek early care for suspected lung cancer, especially since the disease may resemble pneumonia and bronchitis on imaging tests.

'Considerable Overlap’ in Appearance of Chest Abnormalities May Delay Lung Cancer Diagnoses

Patients with non-small cell lung cancer who undergo surgical removal of a pulmonary lobe must exercise to avoid such complications as collapse of the unaffected lung and the pooling of secretions that may obstruct air passages if not cleared by coughing due to postoperative pain.

Light exercises, which can be done at home, may also be beneficial for patients who require additional therapy like chemotherapy or radiation because exercise helps reduce the toxicities that can occur with these treatments.

® spoke with Dr. Scott L. Shofer, a pulmonologist at Duke Cancer Center in North Carolina and Durham Veterans Affairs Medical Center, and Susan Blackwell, a physician assistant in the thoracic oncology program at Duke Cancer Center. Both suggest that patients speak with their cancer team before starting to exercise.

Patients can work on movements from sitting to standing, which allows them to move in a controlled manner.

“(For a patient who is) early post-op, (if they) want to start moving a little bit but (they’re) not quite ready to get into a (rehabilitation) program, things we often do are things like sit to stand (exercises), working from the chair,” Shofer said.

Patients can walk outdoors on flat ground (tracking how much they walk with a pedometer) or on a treadmill. A pulse oximeter, which measures blood oxygen saturation and estimates heart rate, can allow patients to gauge how much more they can exercise.

“(Patients) can probably think about working in a level of intensity that’s maybe 20% above their baseline heart rate,” Shofer said. “If their normal heart rate is in the 80s or 90s, and they’re exercising up to the 110s or 120s, that’s a reasonable level of exercise for people to start with.”

Blackwell added, “I tell patients to start out slow so they don’t get overwhelmed and they don’t quit. ... I do not want them to get discouraged and stop exercising.”

These elastic bands, which come in different levels of resistance, can be used to do arm curls, leg lifts and other exercises.

“Start with (a band) that allows you to complete eight to 10 repetitions of a particular exercise, and aim for three sets of eight to 10 repetitions,” Shofer said. “Increase band resistance as you become more accustomed to the exercise.”

An incentive spirometer is often given to patients at the hospital, which can be taken home for further use.

“It has a volume measurement ... (that shows) how big the breath is on inhalation,” Shofer explained. “(Patients) can continue to work on getting (the volume) higher and higher to a defined target level.”

Stay adherent to respiratory medications to help clear secretions, open airways and lead to more effective breathing.

Patients may be pushing themselves too hard if they feel lightheaded, sweaty or clammy, or if they feel like they can’t catch their breath. If a patient experiences these feelings, find a place to sit and rest until these symptoms resolve. If they don’t go away after several minutes, consult with a doctor or get emergency attention before restarting an exercise program.

Light exercises, which can be done at home, may be beneficial for patients with lung cancer. 

Improving Breathing After Lobectomy

After spending a warm spring day in 2022 pulling weeds and planting perennials, Renata Muller, 66, tucked herself into bed and noticed that she was short of breath. When she woke up the next morning, she felt pressure in her chest. 

“I figured I overdid it with the garden work,” she says. But her symptoms didn’t subside. They got worse. 

As the day went on, she felt overwhelmingly tired, was unable to go up the stairs without becoming winded and began struggling to breathe. Concerned, her husband, Ralph, took her to the emergency room that evening.

“After 11 hours of waiting and tests, the doctor told me I had a buildup of fluid in the space around my heart and I needed immediate surgery,” Muller recalls. 

Four days later, she learned she had stage 4 lung cancer.

Lung cancer is the leading cause of cancer death worldwide, and non-small cell lung cancer (NSCLC) accounts for 85% of those deaths. 

In recent years, immunotherapy drugs have dramatically extended the lives of patients with advanced lung cancer, so Muller’s oncologist was optimistic. 

He ordered comprehensive genetic testing called next-generation sequencing (NGS). With this kind of sequencing, doctors can detect 4 million variants, some of which can be targeted with treatment.

“My doctor wanted to put me on an immunotherapy drug called Keytruda (pembrolizumab) right away, even before the (next-generation sequencing) results came back, followed by several cycles of two chemotherapy drugs,” she says.

But when Muller realized that starting the treatment regimen would prevent her from participating in a clinical trial, she transferred her care to Stanford. By then, she had the NGS results, which indicated that her cancer was driven by a rare mutation called epidermal growth factor receptor (EGFR) exon 20 insertion, which is often described as an “undruggable” target in the lung cancer world. 

For the 1% to 2% of patients with NSCLC who have these mutations, immunotherapy agents offer limited benefit and can even cause additional harm.

Muller’s decision to transfer care opened the door for her to participate in a clinical trial investigating an agent that specifically targets EGFR exon 20 insertion mutations: Exkivity (mobocertinib), a small-molecule kinase inhibitor approved by the Food and Drug Administration (FDA) in November 2021. Six months earlier, the agency had approved another drug targeting the same mutations, a bispecific antibody called Rybrevant (amivantamab).

“For the first time, we have options that target these rare genetic mutations, and that’s a game changer for patients,” says Dr. Estelamari Rodriguez, a thoracic oncologist and clinical research lead of the Thoracic Site Disease Group at Sylvester Comprehensive Cancer Center at the University of Miami. 

“In the past, after patients failed chemotherapy, we didn’t have much to offer. ... Now we have these new targeted therapies that are currently used for what doctors call ‘salvage therapy,’ after patients don’t respond to chemotherapy.”

The drugs are the first FDA-approved treatments to specifically target EGFR exon 20 insertion mutations, but several more are in the pipeline, and they may buy patients more time so that science can effectively catch up to them.

EGFR is a protein in cells known as a growth factor receptor, which helps them grow. Some mutations in the EGFR gene can activate the receptor and lead to uncontrolled cell growth, thus leading to or accelerating cancer. 

With NGS, doctors can uncover the changes in the DNA that might be fueling (driving) cancer. In NSCLC, EGFR mutations are one of those oncogenic drivers.

Think of DNA as an instruction manual. If there’s a typo in the manual, cells receive incomplete or incorrect instructions and may become cancerous. Doctors look for those typos to determine whether a patient is a candidate for therapies that target them specifically. 

Besides misspelled words (point mutations), there may be other mistakes, like missing words (deletions) and added words (insertions). EGFR mutations include all three.

Mutations in exon 19 and exon 21, which are often referred to as “classical” EGFR mutations, account for about 85% of EGFR mutations in NSCLC. 

Doctors treat them with drugs called tyrosine kinase inhibitors, which block the action of enzymes that preferentially signal cancer cells to divide and grow. 

Up to 80% of patients with classical EGFR mutations respond to tyrosine kinase inhibitors, which can keep the cancer at bay for an average of 19 months — and much longer for a subset of patients.

“Unfortunately, the treatments we use for classical EGFR mutations aren’t effective in patients with EGFR exon 20 insertions,” says Dr. John V. Heymach, chair of thoracic/head and neck medical oncology at The University of Texas MD Anderson Cancer Center in Houston. 

The additional insertions in these mutations cause defects in the drug-binding pocket, reducing sensitivity to tyrosine kinase inhibitors.

That’s why it’s important for patients with lung cancer to characterize their disease before beginning treatment. For NGS, doctors place tumor tissue in a machine that can rapidly sequence the tumor’s DNA and identify a large number of biomarkers all at once. 

If patients can’t undergo a traditional biopsy for NGS, doctors may use a liquid biopsy to search for the biomarkers by analyzing tumor DNA in the bloodstream.

“PCR (polymerase chain reaction) testing is not sufficient to pick up certain mutations, including EGFR exon 20 insertion mutations,” Rodriguez says. “So it’s extremely important for patients to get NGS or a liquid biopsy upfront, so they can take advantage of new treatments that can extend their lives.”

Experts say that NGS should be standard of care following a diagnosis for all patients with lung cancer because treatments vary depending on the mutations they have. According to some estimates, however, only half of patients know this critical information when they begin treatment.

Many patients with EGFR exon 20 insertion mutations have never smoked, so they’re not flagged for lung cancer screening. By the time they develop symptoms, they have advanced disease and surgery is no longer an option. And radiation won’t work because the cancer has spread throughout the body and there are too many targets to treat. 

That leaves two options: cutting off the fuel that is driving the cancer and/or killing the cancer cells.

Doctors typically start with traditional platinum-based chemotherapy, but in patients with EGFR exon 20 insertion mutations, chemotherapy shrinks tumors by only 20% to 25%, which may provide patients six months on average, according to Heymach. 

Now, however, doctors have two additional treatments.

Delivered by infusion every two weeks, Rybrevant targets both
EGFR and an oncogene called MET. Instead of disabling the ATP-binding kinase activity of EGFR, as tyrosine kinase inhibitors do, the antibodies in Rybrevant go after the EGFR protein on the cell surface to disable the receptor and allow the body’s natural killer cells to attack the cancer. 

Studies show a response rate of up to 40% with Rybrevant, and a median progression-free survival (the length of time during and after treatment when a patient with cancer lives without disease worsening) of seven months.


Approximately 65% of patients have an infusion reaction, which may include becoming flushed, feverish and short of breath, so the first infusion is often delivered very slowly, says Dr. Jyoti D. Patel, medical director of thoracic oncology and assistant director for clinical research at the Lurie Cancer Center of Northwestern University in Chicago. 

Most patients have a reaction only to the first or second infusion. Other side effects include rash (86%), paronychia, an infection of the nail bed (45%), and diarrhea (12%).

Exkivity is active against both EGFR and human epidermal growth
factor receptor 2 (HER2). A capsule taken orally, Exkivity is specially designed to accommodate the narrow binding pocket of the EGFR exon 20 insertion mutation.

“It attaches to the internal part of the EGFR receptor, interrupting signaling from the receptor downstream,” says Dr. Lyudmila A. Bazhenova, a medical oncologist at Moores Cancer Center, University of California, San Diego.

The response rate with Exkivity hovers around 28%, and the median progression-free survival is seven months. 

Its side effects are similar to Rybrevant’s but more pervasive, with up to 82% of patients experiencing diarrhea, 46% rash and 39% nausea and vomiting.

There hasn’t been a head-to-head study comparing the safety and efficacy of these drugs, so doctors aren’t sure which works best. 

But they know that both eventually stop working.

“Patients can develop secondary mutations that prevent the medications from binding appropriately, or the cancer becomes more resistant and learns to bypass EGFR,” Heymach says.

Without a clear advantage, patients typically decide whether they want to start with an oral medication or an infusion. Because they have different mechanisms of action, doctors usually sequence the drugs, starting with one and then turning to the other when the disease progresses.

“Unfortunately, neither of these drugs show(s) significant activity in the brain or spinal cord, and most patients with EGFR mutations suffer from metastases to the brain,” says Patel. “So there’s a huge need for new drugs that can penetrate the central nervous system, and some of the drugs under development are being designed specifically for that purpose.”

In the meantime, patients like Muller whose have brain metastases are affected turn to Gamma Knife radiation treatments that deliver multiple radiation beams simultaneously to kill cancer cells while sparing healthy tissue.

“To ensure the rays are focused on the tumors, they stretch a mask over your head and face, making you look like a superhero,” says Muller, who has had two Gamma Knife procedures, each in under an hour.

Once her brain lesions were addressed, she started on Exkivity and has been taking the drug ever since. “As long as I’m able to tolerate the medication, and it’s keeping the cancer at bay, I’ll stay on it,” she says.

On Feb. 15, 2021, Jeff Battles, 53, felt odd chest pains. They became so intense that he went to the emergency room at 2 a.m., during a blizzard.

A computed tomography scan revealed large tumors in his chest and throughout his rib cage. Battles had stage 4 lung cancer.

A local oncologist ordered NGS genetic testing on his tumor, and while Battles awaited the results, he did two cycles of chemotherapy. 

“A few weeks later, when testing showed I had the EGFR exon 20 insertion mutation, we started looking into clinical trials,” says Battles, who owns a medical device manufacturing company in Meadville, Pennsylvania.

The trial, ZENITH20, at Cleveland Clinic was designed to assess the efficacy and safety of poziotinib.

“I took an 8-milligram pill daily, and it stalled disease progression for about seven months,” says Battles. “But when the cancer began growing and spreading again, my doctors put me on (Rybrevant) infusions.”

As he had with poziotinib, Battles experienced a noticeable reduction in tumor size during the first month, but after seven months on Rybrevant, the effects leveled off. When his disease began progressing again, Battles did two more rounds of chemotherapy.

“We’ve used most of the tools in the toolbox at Cleveland Clinic, so now we’re investigating other trials and treatments,” he says.

Unfortunately, Battles’ experience is common among patients with EGFR exon 20 insertion mutations. 

Targeted treatments like Rybrevant and Exkivity can control the cancer for months or even years, depending on the patient and the drug, but they will not cure it.

The hallmark of cancers driven by EGFR exon 20 insertion mutations is “acquired resistance,” meaning that they learn to outsmart treatments. 

When resistance is acquired, doctors often repeat biopsies and order biomarker testing to identify new mutations they can target with different therapies — and for the first time, patients with these rare mutations have options.

“This is the beginning of the story,” Rodriguez says. “It’s our first attempt at getting at this mutation for patients who had previously been bundled into the EGFR category. But since we’re getting a response from targeted treatment after patients (progress on) chemotherapy, we know these are effective agents.”

Now that scientists have established EGFR exon 20 insertion mutations as a targetable mutation, the next step is learning how to improve response rates with currently approved drugs. That starts with understanding the different drug responses within EGFR exon 20 insertion mutations. For instance, emerging research suggests that the insertion location within EGFR mutations affects how patients respond to treatment. 

The more scientists learn about these responses, the better equipped they’ll be to target them.

The good news is that the pace of research is rapid. Several drugs that target EGFR exon 20 insertion mutations are under development, and a few are already available. And, unlike other drugs, these treatments can work quickly, with patients responding systemically within six weeks in some cases.

Previously, overall survival of only two to three years was probable. But patients on Exkivity and Rybrevant are living much longer.

“And there’s a host of other new drugs coming down the pipeline,” Heymach says. “The exciting thing is, it’s very likely there’s going to be multiple options for these patients in the future.”

In the meantime, the goal for these patients is to stay one step ahead of the cancer by using Rybrevant and Exkivity as a bridge to the next best therapy.

“When I was diagnosed ... I didn’t anticipate I’d be doing this well several months later,” Renata says. “My blond hair is more gray these days, and I don’t have the high energy I used to, but I’m able to do most of my usual activities, including gardening.” Next up: a trip to Indonesia with her husband. “I’d like to go scuba diving,” she says.

To learn more about Jeff Battles' experience with lung cancer, 

New treatments may stall lung cancer progression in patients with EGFR exon 20 insertion mutations.

Targeting the 'Typos' for Lung Cancer Harboring Rare Genetic Mutations

In 2002, 53-year-old David Sturges made an appointment with a cardiologist to screen for heart disease, which ran in his family. He underwent electron beam computed tomography (CT) to check calcification in the arteries, an indicator of the disease.

Although significant calcium buildup was not detected, he saw something else in the results.

“It was literally a note that said, ‘We noticed this mass ... on the lower lobe of the right lung,’” Sturges, now 75, recalls. “If it’s being followed (by a physician), good, keep following it. If not, we suggest the patient go in for further follow-
up,’ which I did.”

Sturges’ biopsy was performed in February 2002 and showed that he had stage 1a non-small cell lung cancer. He underwent a lobectomy to remove the lower lobe of his right lung and continued with follow-up exams and scans, per his oncologist’s instructions, for a year after diagnosis, when another suspicious nodule was detected.

Some eight months later, his then-surgeon recommended the tumor be removed. 

Unfortunately, the night before surgery, Sturges had a heart attack, and the procedure was not performed. He ended up seeing another oncologist, this time at UCLA, who did not recommend surgery. 

Monitoring continued until late 2016, when imaging showed that the tumor had grown. Surgery was once again on the table and was finally performed in August 2017 at Mayo Clinic in Rochester, Minnesota.

The follow-up schedule that Sturges’ oncologists suggested, which included CT scans and blood tests, allowed them to monitor not only tumor growth, but also cancer recurrence.

There are two main types of lung cancer: non-small cell lung cancer (NSCLC), which constitutes some 85% of cases, and small cell lung cancer (SCLC), which accounts for the other 15%. 

According to Dr. Malcolm DeCamp, chair of the Division of Cardiothoracic Surgery at the University of Wisconsin School of Medicine and Public Health in Madison, SCLC usually grows and spreads more quickly and is often treated with chemotherapy and radiation because tumors are too large or widespread for surgical removal.

“Non-small cell lung cancers are broken down into stages 1, 2, 3 and 4,” DeCamp says. “If it’s under 5 centimeters without lymph nodes involved, it’s stage 1 and treated primarily with surgery, assuming the patient is fit enough. Stage 2 disease is typically treated with surgery plus chemotherapy, as lymph nodes within the lung near the tumor are now involved. Stage 3 disease is locally advanced and requires chemotherapy plus radiation or plus surgery, or maybe all three. Then stage 4 is metastatic disease that has spread outside the chest. This stage is rarely, if ever, cured and treated primarily with chemotherapy, (targeted therapy or immunotherapy) to extend survival.”

Catching a tumor in the early stages, when it can be removed, is optimal since it is potentially curable. Because Sturges’ cancer was diagnosed at stage 1a, he only underwent surgery and needed no further intervention, although afterward he learned that a different treatment plan may have been more beneficial.

“It was probably two or three years after my initial surgery when (doctors) said they were finding that adjuvant therapy in combination with surgery probably gave a better outcome for people in my situation,” he says.

As with many other cancers, the fear of recurrence can linger long after treatment is over. But how likely is lung cancer to come back, and how can doctors monitor it?

Dr. Xiuning Le, assistant professor of thoracic/head and neck medical oncology at The University of Texas MD Anderson Cancer Center in Houston, explains that the disease typically does not return for most patients with stage 1 non-small cell lung cancer. The five-year survival rate for patients with stage 2 disease is 40% to 60%, which decreases to 15% to 35% in patients with stage 3 disease.

According to the American Cancer Society, most doctors recommend that patients who no longer show evidence of disease come in for follow-up, which may include CT scans and blood tests, every three months during the first two years, every six months for the next three years, and at least once annually after five years.

Dr. Dennis Wigle, clinician scientist and chair of thoracic surgery at Mayo Clinic in Rochester, puts it this way: “With the higher stages and potentially higher recurrence rates, we want to look more frequently right after someone’s finished ... treatment so that we can detect recurrences as early as possible.”

Screening with low-dose CT scans is also done to detect new cancers, not recurrences, which are more common in current and ex-smokers (for about five to 10 years, then the risk decreases). But new cancers are more curable than recurrences, which are rarely curable.

“Small cell lung cancer has a reputation of early metastasis and early recurrence,” Le says. “It often spreads to the brain.” 

The five-year survival rate is 29% if the cancer is localized, 18% if it has spread in the chest and 3% if it has spread beyond the chest.

“We don’t have a good way to predict where the cancer is going to recur,”
Le says. “It can recur at the same location, spread to the other side of the lung or spread to other organs like the liver, adrenal glands and colon. Most thoracic oncologists do a CT scan that includes the lungs but also the upper part of the abdomen because these are the high-risk locations for metastasis.”

Additionally, Le notes that oncologists say they don’t know exactly why NSCLC is more likely to spread to certain organs than others, but some experts hypothesize that it is because these locations are rich in blood circulation.

If a patient has a recurrence, Le takes a multidisciplinary approach.

“We start by evaluating the pattern of recurrence,” she says. “If the cancer comes back in one location, we may be able to offer local treatment, but if it comes back in multiple locations, there is still a role for aggressive treatment. In that case, we need to consult with medical oncology, surgery and radiation oncologists.”

After Sturges’ heart attack, his doctor recommended he have CT scans every three months and then yearly until late 2016, when the scan showed his tumor had grown. In August 2017, he underwent a wedge resection in the upper lobe of his right lung and has been disease-free ever since.

So how do physicians catch lung cancer in the beginning or in the early stage of a recurrence?

DeCamp says that people at high risk should be on the lookout for voice changes or a cough that doesn’t go away or worsens. However, by the time symptoms appear, the disease may already be advanced. So the best way of detecting early-stage tumors is with CT scans. This is primarily considered in individuals at high risk due to smoking history.

Wigle agrees and points to the National Lung Screening Trial, in which 53,454 patients who were current or former smokers were assigned to undergo regular CT scans or chest X-rays. Investigators found more lung cancers in the CT group, and those patients had better survival outcomes.

“Increasing the buy-in to screening, at least in the at-risk population, is the lowest-hanging fruit and is the easiest way to improve survival,” DeCamp says. “The next lowest-hanging fruit is preventing people from smoking and getting people who smoke to quit. Then it’s going to be getting a better understanding of that group that gets cancer despite not smoking.”

The U.S. Preventive Services Task Force recommends annual screening for adults aged 50 to 80 years who have a 20 pack-year smoking history.

Wigle says that much of his job entails determining the risk level for each patient’s lung mass. 

“The frequency of having any kind of nodule is relatively high,” he says. “I always tell patients if we randomly did 100 scans in people at risk for lung cancer, 25 would have some kind of lung nodule that would require more investigation, but (fewer) than one of those would actually have a lung cancer.”

Currently, there is no approved screening test for nonsmokers, but some interesting plans are in the works.

“Dogs have an incredible sense of smell,” DeCamp says. “Some can actually smell ... cancer (if they are trained to do so). We’re trying to understand what those neural pathways are in the canine. Then we can create a device that a patient can breathe into that can detect some of the byproducts of cancer metabolism to use as a screening test.”

DeCamp also says that because the entire respiratory tract can be at risk for lung cancer, it may be possible to develop a test that looks for a particular structure of cells swabbed from the nose or mouth that will show whether an individual is predisposed to it.

And there are a number of companies looking for molecular markers present in the blood of patients with cancer that disappear when the tumor is removed. If found, such biomarkers could be used to screen for lung cancer and test for recurrence.

Wigle suggests that this type of blood test could be used in combination with standard screening. “It might even take over as the screening protocol, meaning you wouldn’t get a CT scan until you had a positive result on some kind of blood test.”

Sturges had smoked for about 17 years but had stopped 15 or 20 years before his diagnosis.

“There’s ... an attitude that there’s nothing you can do for those patients,” DeCamp says. “That’s wrong. There’s something to do for almost all of them. And then there’s the stigma. ‘Oh, they did it to themselves; they smoked, right?’ Well, a growing population of lung cancer patients have never smoked. So we need to change the face of lung cancer. Our society views a woman with breast cancer as a victim. But people don’t often look at lung cancer patients as victims.”

According to DeCamp, of the 200,000 people in the U.S. who develop lung cancer every year, about 15% (30,000 patients) do so without having any known cancer risk. 

Two-thirds of those 30,000 are women, but it is not known why.

But is the number of nonsmokers with cancer growing, or is the number of smokers who are diagnosed with lung cancer decreasing?

“The epidemiology is changing over time,” Le says. “Smoking overall has declined in (the) U.S. ... in the last decade. We definitely see more nonsmoker lung cancer patients, but I don’t think this number is growing. They are proportionally more of the patients we see in the clinic.”

According to Wigle, lung cancers are the deadliest cancer in America and lead to more deaths annually than many other cancers combined. Nevertheless, research in the field suffers from low funding from the National Institutes of Health and other government agencies.

After undergoing two surgeries and witnessing the benefits of screening for himself, in 2009 Sturges and two others set up the Lung Cancer Foundation of America. This nonprofit organization raises money for research into innovative treatment modalities that may one day lead to a cure.

“I’ve been very active in terms of sounding the alarm on the need for research and money to support research,” Sturges says. “We started our foundation because we were concerned that we weren’t getting ... a fair share from the National Cancer Institute and others, not enough money, not enough focus. ... And we need the money for research, and hopefully we can find a cure or at least as many treatment options as other cancers, so we can live and go forward.”

To learn more about David Sturges's story of getting diagnosed with stage 1A non-small lung cancer from a footnote of a CT scan and hear his thoughts on how lung cancer treatments have changed in the past 21 years,

listen to this "Cancer Horizons" podcast episode

Feature

Tumors can spread from one lung to the other and beyond. How are possible cancer metastases diagnosed in early stages?

Lung Cancer 2 | CURE

A Glimmer of Hope for Those With Lung Cancer

'Considerable Overlap’ in Appearance of Chest Abnormalities May Delay Lung Cancer Diagnoses

Improving Breathing After Lobectomy

Targeting the 'Typos' for Lung Cancer Harboring Rare Genetic Mutations

Detecting Lung Cancer on the Move

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