All about Ziegfeld! Our New Show and Introduction to The Man and His Work

Why Ziegfeld? He never gave up. His confidence, perseverance, and refusal to allow difficulties or roadblocks to sideline his mission to create outstanding successful productions was one of his gifts. This is just what we need in addressing the need to remain determined to find new, accessible, and affordable methods to diagnose lung cancer early so that we can treat it and save lives. 

I asked my husband once what one adjective he would use to describe me.  He said, “Determination.” So, I had to go ahead and write a musical theater piece with my writing partner, John Lamb. I brought in my friend, Seth Rubin, an amazing sax player and composer. We worked on the tunes to go with the lyrics John and I wrote.  Seth wrote the last song of the show for that version; then he died two weeks later of lung cancer.  Our show, Ziegfeld! is a testimony of the need to stay determined and persevere. 

I am grateful that my new composing partner, Taylor Kirkwood, worked with me to be able to have an updated version of the show and have a table read in March2026. Most recently, we had our first workshop version with a live audience in August 2026. I am happy to report that so many people said they loved it! Having a talk-back with the audience and 14 actors, we received some suggestions to elevate the next performance which is planned for March 2027, hoping then it will go into full production. 

Here is some of my research on Florenz Ziegfeld that might interest you. Our show is fictional but includes many characters who were real performers who were featured in Ziegfeld’s shows. Watch our website for updated information.

What to know about Florenz Ziegfeld, Jr. Ethan Mordden said, “The man who invented show business.” On his business cards, it said, “Impresario extraordinaire.”

Florenz Ziegfeld Jr. transformed American entertainment by turning theatrical revue into an art form. His legacy rests not only on his legendary spectacles, but also on his high-profile relationships with two extraordinary women who helped shape his life and career.

The Visionary: The Ziegfeld Follies Beginning in 1907, the Ziegfeld Follies redefined Broadway. At the suggestion of his first wife, Anna Held, he was inspired by the Folies Bergère of Paris. Ziegfeld combined extravagant sets, elaborate costumes, and top-tier talent—including stars like Fanny Brice, Bert Williams, and W.C. Fields. Famous for his slogan “Glorifying the American Girl,” Ziegfeld elevated chorus dancers into icons of elegance and style, setting the gold standard for American musical theater production.

The Facilitator: Anna Held Polish-born and star of the stage in France, Anna Held was Ziegfeld’s common-law wife, creative partner, and first grand star. Ziegfeld had an innate flair for publicity stunts. He famously created rumors that Anna regularly bathed in 40 gallons of milk to keep her flawless complexion. Women nationwide began trying milk baths themselves to try to achieve her complexion. Anna was the true mastermind behind the Follies. She suggested bringing European-style revues to America, handing Ziegfeld the concept that Ziegfeld built into his empire. Though their tempestuous relationship ended in 1913, her artistic influence permanently reshaped his career.

The Mainstay: Billie Burke In 1914, Ziegfeld married stage and screen actress Billie Burke (later famous as Glinda the Good Witch in The Wizard of Oz). Burke was a Broadway star in her own right. She had celebrity, wealth and fortitude. She brought warmth, sophistication, and stability to Ziegfeld’s volatile world. She stood by him through financial triumphs and disaster, including the 1929 stock market crash. Following Ziegfeld’s death in 1932, Burke spent years managing his substantial debts while continuing her own successful acting career, safeguarding his theatrical legacy.

Ziegfeld’s Legacy: Florenz Ziegfeld Jr. transformed American theater by bridging opulent revue and serious musical drama. Beginning in 1907, his annual Ziegfeld Follies set the gold standard for Broadway entertainment, blending lavish staging and music from legendary composers to “glorify the American girl.” Ziegfeld spared no expense on production quality. Ziegfeld hired Joseph Urban to create extravagant sets in 1915. They worked together and Urban designed over 50 productions for Ziegfeld, including the landmark 1927 Show Boat. He also designed the physical Ziegfeld Theatre at 54th Street and Sixth Avenue, creating an egg-shaped auditorium specifically tailored for optimal sightlines, acoustic clarity, and grand spectacle. Urban transformed the Ziegfeld Follies from a typical vaudeville-style revue into an immersive, Art Deco dreamscape. Ziegfeld spared no expense where costumes for his chorus were concerned. He once defended costly hidden details by declaring, “Irish linen does something to their walk—remember, they are Ziegfeld Girls!”

Ziegfeld’s most lasting legacy lies in producing the 1927 landmark Show Boat. With a score by Jerome Kern and book/lyrics by Oscar Hammerstein II, the show confronted systemic racism and miscegenation, pioneering the modern book musical. On opening night, the solemn ending left the audience in stunned silence. Though Ziegfeld initially panicked, ecstatic reviews and block-long lines followed the next morning. From visual grandeur to social realism, Ziegfeld redefined the ambition of the American stage.

References & Recommended Reading

• Block, G. (1997). Enchanted Evenings: The Golden Age of the American Musical Theatre. Oxford University Press.

• Ferber, E. (1939). A Peculiar Treasure. Doubleday, Doran & Co.

• Kenrick, J. (2010). Musical Theatre: A History. Continuum. 

Something BAD in the Air Tonight: A Look at Air Pollution and Lung Cancer

Cigarette smoking gets most of the headlines when it comes to lung cancer, but the air quality outside our front door tells a much bigger story. Invisible toxins, heavy metals, and fine particulate matter all pose serious risks to our respiratory health. Let’s take a closer look at how air pollution impacts our lungs and identify some of the primary sources filling our skies.

Impacts of air pollution

A 2025 Nature study shows that air pollution causes genetic mutations in non-smokers, which lead to lung cancer.¹ Doctors and medical researchers classify nonsmokers as anyone who has smoked fewer than 100 cigarettes.²

The Nature study looked at the genetic structure of the lung tumors from 871 never-smokers, across 28 locations in Africa, Asia, Europe, and North America. This research investigated the connection between air pollution and genetic mutations, to try to explain the rising global rates of lung cancer, particularly in women, and in Asian populations. The study found that people living in more polluted areas had significantly more mutations present in their lung tumors. ¹

Although the dangers of smoking and secondhand smoke are widely recognized, authors of a study in Nature found that air pollution plays a significantly greater role in lung cancer risk than secondhand exposure. For context, the CDC (Center for Disease Control) links secondhand smoke to roughly 7,000 lung cancer deaths each year, representing 15% to 35% of cases in non-smokers. ² Air pollution, however, extends far beyond passive smoke exposure, arising from industrial sites, motor vehicle exhaust, and household indoor sources.

Industrial Air Pollutants

Scientists have identified 187 air pollutants, but not all these pollutants cause lung cancer.³  Nevertheless, they may have a damaging impact on lungs. Comon air pollutants include:

• Chemicals from vehicles
• Heavy metals
• Arsenic
• Beryllium
• Asbestos
• Some forms of chromium
• Silica³

These chemicals take the form of poisonous gas or dust and cause cancer when people are repeatedly exposed to them. Improper waste disposal also exposes workers to air pollution.³ They are most used in industries like:

• Chemical processing
• Chemical distribution
• Construction
• Coal-fired power plants
• Insulation work
• Mines
• Mills
• Metal production
• Oil production
• Forms of transit that use oil, such as cars, airplanes and ships ³

Outdoor Air Pollution

With wildfire season growing longer and more intense each year, many of us have experienced firsthand what it’s like to breathe in hazy, smoke-filled air. But wildfire smoke isn’t just unpleasant—it delivers fine particulate matter (PM_2.5) and hazardous toxins straight into the deepest parts of the lungs, causing acute airway inflammation. Research shows that repeated exposure carries heavy consequences: it boosts the likelihood of developing lung cancer, accelerates its spread, and reduces survival rates for those currently in treatment.

The Division of Cancer Epidemiology and Genetics (DCEG) is also studying the impacts of outdoor air pollution from traffic. They note that 25% of lung cancer cases occur in never-smokers,⁶ although other sources put that number between 10 and 20%². Scientists and researchers at DCEG are looking at the tiny particles in traffic pollution as one of the major potential causes of lung cancer (and other types of cancer) in non-smokers. One Los Angeles study examined the link between ultrafine particles and lung cancer. The levels of these ultrafine particles can vary quite largely based on where you are, and by using a population that had a high number of lung cancer cases, information on smoking habits and where the subjects had lived before researchers were able to look at the links between these factors.⁶ They found that there was some correlation between people who lived in areas with lots of ultrafine particles and developed lung cancer despite not smoking, or not smoking anymore. Men, particularly older men, were more likely to develop adenocarcinoma, and current smokers were least impacted by ultrafine particles.⁶

If you are concerned about outdoor air pollution, there are ways to limit your exposure. Check your air quality regularly and choose indoor workouts on days when the air quality looks bad. Don’t dispose of garbage by burning it and avoid burning things like firewood as well.²

Indoor Air Pollution

Many cleaning supplies or household products can irritate the eyes or throat, or cause headaches and other health problems. Some products release dangerous chemicals, including volatile organic compounds (VOCs). VOCs are chemicals that vaporize at room temperature. Even natural fragrances such as citrus can react, creating dangerous pollutants indoors. The direct link between indoor cleaning chemicals and lung cancer is primarily established through long-term occupational exposure to volatile organic compounds (VOCs) and specific carcinogens, rather than casual home use. While daily household use causes significant airway irritation and lung function decline, large-scale epidemiological data indicates that professional cleaners—particularly women—face a distinct and statistically significant elevated risk of developing lung cancer.

Cleaning supplies and household products containing VOCs and other toxic substances can include, but are not limited to:

• Aerosol spray products, including health, beauty and cleaning products;
• Air fresheners;
• Chlorine bleach*;
• Detergent and dishwashing liquid;
• Dry cleaning chemicals;
• Rug and upholstery cleaners;
• Furniture and floor polish; and
• Oven cleaners.

Some air pollutants are harmless in certain contexts but can be harmful in others. When uranium breaks down, it produces a gas called radon, which is not harmful when it occurs in soil because the concentrations are so low, but can be harmful in greater concentrations when it occurs indoors.²

Fortunately, there are kits to test for radon, which are even offered for free in some places. If a test reveals that your home is high in radon there are services that you can use to mitigate the issue.²   

Sources

1. Air Pollution May Contribute to Development of Lung Cancer in Never-smokers, New Study Finds |  Lung Cancer Foundation of America (LCFA)
2. Lung Cancer in Nonsmokers: Causes, Risk Factors, Statistics | healthgrades
3. Hazardous Air Pollutants and Chemical Effects on Lung Cancer | Lung Cancer Center
4. Other Lung Cancer Risk Factors | GO2 for Lung Cancer
5. What we study: Air Pollutants | National Cancer Institute (NCI)
6. What we study: Traffic-Related Outdoor Air Pollution | National Cancer Institute (NCI)

Evaluating Success: How Lung Cancer Treatment Outcomes Are Measured

Answering whether lung cancer treatment has been successful involves a complex process. Because success looks different for every patient—ranging from total remission to stabilizing the disease—oncologists rely on a framework of continuous evaluation.

To understand where a patient stands, medical teams look at three critical areas:

What are outcome measures?

To standardize how oncologists measure treatment success, they use a system called RECIST (Response Evaluation Criteria in Solid Tumors). This framework categorizes a patient’s response into four clear stages:

• Complete Response: Also known as No Evidence of Disease (NED), meaning all signs of the cancer have disappeared on scans.
• Partial Response: The treatment is working well, and the tumors have shrunk by at least 30%.
• Stable Disease: The cancer hasn’t shrunk, but it hasn’t grown either; the treatment is successfully holding steady.
• Progression: While “progress” sounds positive in everyday language, in oncology it means the opposite—the cancer has grown or spread despite treatment.¹  

How are cancer treatments measured?

To evaluate how well a treatment is working, oncologists primarily rely on two diagnostic tools: imaging scans and blood-based testing.

• Imaging Scans: Tools like CT, MRI, PET scans, and X-rays allow doctors to visually compare the tumor before, during, and after treatment. By tracking these visual shifts, medical teams can see if a tumor has shrunk, remained stable, or grown, while also evaluating changes in blood flow directly to the cancer cells.
• Blood Tests (Biomarkers): Tumors often shed specific proteins, enzymes, or chemicals into the bloodstream. By monitoring these distinct “biomarkers” through routine blood draws, doctors can track the cancer’s activity. A steady decline in these marker levels is a strong indicator that the treatment is successfully destroying cancer cells and shrinking the tumor.

By comparing scans before, during and after treatment, doctors can see whether lung cancer tumors have grown, shrunk or stayed the same, and even details about blood flow to tumors.¹ Also common are blood tests, where doctors draw blood and are looking for certain proteins, chemicals or enzymes that tumors give off when they grow. If doctors see less of these markers in a patient’s blood, it may indicate that the lung cancer tumors have shrunk.² 

There are also indicators that are more difficult to measure on a medical test, so they depend on self-reports. These include an improvement in symptoms like pain, fatigue or persistent coughing.^2,3 If a patient is experiencing significant bleeding or pain and treatment lessens those symptoms, that may be one of the first signs that treatment is working, well before scans are reliable.²  Or mental/emotional improvements, like decreased anxiety or a more positive outlook.¹ These signs may be easier to capture in a survey or diary than through traditional medical tests.¹ Although wearable fitness trackers won’t be able to measure the impact of treatment on cancer directly, they can give an important idea of patients’ vitals before and after treatment, help to quantify how side effects are impacting patients, and may encourage patients to exercise more, which could have a positive impact on treatment.⁴  This information contributes significantly to quality of life for lung cancer patients.

Treatment type effects speed of results 

How often you need follow-up tests—like blood work or imaging scans—isn’t one-size-fits-all. The timing depends on your specific type of treatment, your cancer stage, and even your health insurance coverage.²

While chemotherapy, targeted therapies, and radiation treatments often use similar tests, their schedules can look very different:

• Chemotherapy & Targeted Therapy: Generally, doctors order scans every 3 to 6 weeks from the start of treatment to see how well it is working. However, if your symptoms change or worsen, they will scan more frequently.¹ Once the cancer stabilizes, that timeline usually stretches out to every 2 to 3 months.
• Radiation Treatment: Because radiation has a delayed effect on tumor cells, doctors typically recommend scans weeks or even months after your treatment ends. However, depending on your specific protocol, some cases may require daily imaging during active treatment for precise targeting.²

Because immunotherapy works differently than radiation and chemotherapy, doctors use a variety of different data points, including a scoring system called iRECIST to evaluate its effectiveness. Usually, imaging is done after three months.³ In radiation, chemotherapy and targeted treatment, tumor growth is seen as evidence of progression, and a serious sign. 

However, in immunotherapy what looks like tumor growth may be immune cells rushing to the area to counteract the effects of tumors. This is called pseudo progression and happens in 6 to 17% of lung cancer cases treated with immunotherapy.³ As a result, if immunotherapy patients see what could be pseudo progression or could be tumor growth they must have another scan in 4 to 8 weeks.³ Fortunately, there are two bloodborne markers that are particularly useful  in tracking the effectiveness of immunotherapy before scans are helpful. These are circulating tumor DNA, which goes down when immunotherapy works, and lactate dehydrogenase which is part of a standard blood test and will usually go down in the first few treatments if immunotherapy is effective.³ 

Although for other treatment types, seeing symptoms disappear is encouraging. For immunotherapy, however, it can be a good sign to see rashes, thyroid issues or other inflammatory responses, as it means that the immune system is active, and hopefully targeting tumors as well. This inflammatory response, however, does not happen in all successful immunotherapy cases. Immunotherapy is also unique in that it activates the body’s immune system to work against cancer cells, and these effects can continue working long after treatment stops. As a result, oncologists have come up with the term durable response, which is mostly used to describe complete or partial immunotherapy treatments where the effects of the treatment last for at least six months after the treatment stops.⁴

Sources 

1. Signs Chemo Is Working for Lung Cancer | Treatment Guide | careyourlungs
2. Is My Radiation Treatment Working? | SERO
3. How to Tell If Immunotherapy Is Working | ScienceInsights
4. Do Wearable Fitness Trackers Help Cancer Patients? | City of Hope

Are There Lung Cancer Vaccines?

Oncologists in Cuba and the UK developed and are in the early phases of testing two vaccines that will boost the immune systems of people who have lung cancer, or who may be at risk of developing it, in an effort to slow or prevent the disease.  

Professor Tim Elliot, the University of Oxford’s Kidani Professor of Immuno-oncology, and the research lead for one of the two vaccines, told Interesting Engineering that often “it’s hard for the immune system to distinguish between what’s normal and what’s cancer.”¹  

Although they work at different times and in different ways, both vaccines in Cuba and the UK are biological response modifiers, because they allow the body to recognize and begin to respond against cancer cells.² Let’s look a little more into two applications of biological response modifiers through vaccines. 

CIMAvax-EGF, a Cuban-developed vaccine: Slowing down late-stage cancer and prevention of recurrence.

In the 1990s, lung cancer oncologists did a lot of research on a molecule called epidermal growth factor receptor, or EGFR.  This molecule is found on both normal and cancerous cells, but medical research teams studied it because they believed it might drive lung cancer growth. It turns out that it does, but only in about 15 percent of lung cancer patients and usually in cases of non-small-cell lung cancer where the patients have never smoked.² 

In 2011, researchers at the Center for Molecular Immunology in Havanah, Cuba, developed a vaccine called CIMAvax-EGF for patients with advanced-stage lung cancer. CIMAvax is not a traditional preventative vaccine. It stimulates the immune system to produce antibodies against EGF, a protein that circulates in the blood that lung cancer cells need to multiply. It slows down the activation of EFGR so that it doesn’t cause more cancerous cells to grow. Although none of the late-stage patients went into remission, the vaccine showed some evidence of slowing the progression of the disease and allowing patients to live for an extra 2-3 months.² Although it is fairly specific to one type of cancer and isn’t a miracle cure, CIMAvax was notable for having relatively mild side effects, and also for being easy to administer outside of a specialized oncology unit, which reduces the demand on oncologists.³

Because the drug was developed outside of the US, the FDA would not recognize trials of the drug performed in Cuba, and in 2017 CIMAvax began US trials at the Roswell Park Cancer Institute in Buffalo, NY.² As of early 2026, the results of these trials are unclear, but Roswell Park does state on their website that they are “the only facility in the country that offers this groundbreaking treatment.”⁴

LungVax: A vaccine developed to prevent lung cancer in high risk individuals or early stage patients to prevent recurrence, University of Oxford, England

The second lung-cancer-related vaccine also uses the immune system, but through a different mechanism and is more preventive or prophylactic rather than something used to treat lung cancer when it has already developed. The technology that enabled this vaccine was developed during the COVID-19 pandemic.⁵

When cells mutate and become cancerous, they produce proteins called neoantigens, which are often seen in non-small-cell-lung cancer and in small-cell lung cancer. In lung cancer in particular, these proteins show up very early in the cancer formation process.⁵ Researchers at the University College London and the Francis Crick Institute at the University of Oxford developed a vaccine called LungVax, which has DNA that teaches the immune system to recognize and destroy cells with neoantigens. This treatment targets lung cancer before it has a chance to develop. 

Clinical trials of LungVax will begin in summer 2026, will last for about 4 years, and will test two different populations: patients who have had lung cancer removed but who may be in danger of it coming back, and people who are enrolled in the Lung Cancer Screening Programmme.⁵

Let’s keep our fingers crossed for positive news out of both of these trials in the future!

Sources

1. LungVax: A lung cancer vaccine in the works that could save lives | Interesting Engineering 

2. What to Know About the CIMAvax Lung Cancer Vaccine | US News, Health

3. Safety and effectiveness of CIMAvax-EGF administered in community polyclinics | Frontiers in Oncology

4. CIMAvax Lung Cancer Vaccine | Roswell Park Comprehensive Cancer Center

5. World’s first trial of lung cancer vaccine launched | University College London

What Happens When Lung Cancer Spreads?

It may come as a surprise to anyone who has ever found themselves with bronchitis or lungs burning after an intense run, but the lungs themselves don’t have very many pain receptors.¹ Unfortunately, this means that in the case of lung cancer, it is often difficult for patients to know that they have lung cancer until the cancer has already spread beyond the lungs. In this blog post we will take a look at what happens when lung cancer spreads, and patient options at that point.

When lung cancer spreads:

The new cancer site is called a metastasis, and when the lung cancer spreads to multiple places, these new occurrences are called metastases.² The most common place for lung cancer to spread is (perhaps unsurprisingly) from one lung to the other.² When cancer has just started spreading and has not yet spread to other locations, it is known as local cancer, or oligometastatic(from the Greek word for ‘few that spread’)¹. If the cancer spreads to nearby lymph nodes this can also accelerate metastasis as the cancer travels through the lymphatic system and settles in other organs.² At that point it is referred to as a distant metastasis.¹ Although lung cancer may spread to places like the bones, it would still be referred to as lung cancer metastasized to the bones.

Types of Lung Cancer and How They Spread:

There are different types of lung cancer, some of which spread aggressively, and others that are less likely to spread quickly. ²   To figure out which type of lung cancer someone has, doctors stage the cancer, which involves looking at the tumor, the nearby lymph nodes and then performing MRIs or PET scans to see if tumors have spread anywhere else (TNM method). 

One 2024 study found that Small-Cell Lung Cancer showed the most distant metastasis (56.74%), followed by Large Cell Neuroendocrine Carcinoma (47.52%), Adenocarcinoma (43.36%), Large Cell Carcinoma (40.61%), Adenosquamous Carcinoma (36.69%), Squamous Cell Carcinoma (26.54%), and at the lowest rate, typical and atypical combined (9.18%).³ Small-Cell Lung Cancer is usually not classified using the TNM system, and is usually categorized as ‘limited stage’ or ‘extensive stage.’

Treatment Options When Lung Cancer Has Spread:

Treatment Options When Lung Cancer Although metastatic cancer is considered advanced cancer and is rarely curable, newer medications are improving palliative care, which still increases patient quality of life and increasing how long lung cancer patients survive. ² 

When lung cancer is oligometastatic, it may be treated with radiation, which targets cancer cells in certain spots with the goal of preventing further spread. Surgeons may also use newer, minimally invasive surgical techniques (using tiny robots and cameras) to target tumors. For certain types of metastatic lung cancer, doctors may be able to use targeted drug therapy. There is also the option of using traditional chemotherapy, or immunotherapy, which boosts the body’s immune system if the cancer tests positive for a certain type of protein, called PD-L1. Even if lung cancer has spread to distant organs, doctors may still recommend radiation or drug therapy to shrink the size of tumors and improve patient quality of life.¹

Special Considerations for Small Cell Lung Cancer: 

Due to its aggressive nature, Small-Cell Lung Cancer may need specific treatments, including combined chemotherapy, with Alex Prossor noting that radiotherapy, chemotherapy and immunotherapy can all help relieve symptoms, while immunotherapy and chemotherapy may shrink the size of tumors as well.⁴

Sources

1. Metastatic Lung Cancer Treatment | University of Chicago Medicine
   
2. Metastatic Lung Cancer: Symptoms and Treatment | Verywell Health
   
3. Distant Metastasis Patterns Among Lung Cancer Subtypes | Nature Scientific Reports
   
4. Metastatic Small Cell Lung Cancer: A Complete Guide | Healthgrades
   

November Is Lung Cancer Awareness Month

November is lung cancer awareness month, and while lung cancer may not be top of mind for everyone, there are some reasons why it’s important to be well-informed about lung cancer. 

It’s estimated that in 2025, 226,650 people will be diagnosed with lung cancer.¹ This accounts for 11.1% of all cancer diagnoses this year.¹ Although 10 or 11% may not sound like the highest percentage, the projected figures put lung cancer in third place for the number of cases diagnosed, behind only breast cancer and prostate cancer.¹ It is also projected that 124,730 people will die of lung cancer this year, which makes up a projected 20% of all cancer deaths.¹  Lung cancer continues to be the #1 cancer killer, as much as breast, ovarian and uterine cancers combined. It’s notable that among the top five most prevalent types of cancer as listed by the National Cancer Institute, lung cancer has the highest number of estimated deaths. This may be because most lung cancers are symptom-free until they have already spread beyond the lungs.²   The average age of diagnosis may also be a contributing factor, as lung cancer or cancer in the bronchi is usually diagnosed between ages 65 and 74.¹ The five-year relative survival rate for lung cancer currently is around 28%.¹

The low survival rate among lung cancer patients is not a new development. Lung cancer has led cancer-related deaths among men since the start of the 1950’s, while it became the leading cause of cancer death among women in the late 1980’s, according to the American Lung Association.³ To this day, lung cancer is still more prevalent among men, with Black men being the most affected.¹  

However, lung cancer rates are rising alarmingly among women, particularly those who have never smoked. Studies indicate that approximately 20% of women diagnosed with lung cancer are lifetime non-smokers, a trend that is especially concerning in younger demographics. This rise is driven by a complex interplay of factors beyond tobacco, including environmental hazards like radon gas and air pollution, as well as genetic predispositions. Biological factors also play a significant role; researchers are investigating hormonal influences, specifically how estrogen may fuel tumor growth. Globally, non-smoking lung cancer is far more prevalent in women than men, with distinct variations in incidence rates across different ethnic groups, family history and biology.² 

If you are concerned about lung cancer for yourself or for a loved one, common first symptoms include a cough that will not go away, coughing up blood, chest pain that gets worse with coughing, taking a deep breath or laughing, a hoarse voice and suddenly losing appetite or weight without trying. ²

For more information on lung cancer resources, the following may be useful to you:  

How We Can Help You | Lung Cancer Research Foundation

Lung Cancer Right Care Center: Overview and More

Sources: 

1. Lung and Bronchus Cancer — Cancer Stat Facts | National Cancer Institute

2. Lung Cancer Fact Sheet for Patients and Caregivers | American Cancer Society

3. Lung Cancer Trends Brief | American Lung Association

Spotlight on surgery as a treatment for lung cancer

Many people are familiar with surgery to replace a knee, or remove an appendix, but people aren’t as familiar with lung cancer surgeries. Here, we’ll explore when lung cancer surgery is used, the different types of lung cancer surgery, and what the experience can be like as a patient. 

Lung cancer is most often treated with surgery when it is detected early – at stage 3A or earlier. If the cancer is found before stage 2, typically, local options such as surgery will be the first and most effective option. At stage 2, surgery will still be the primary treatment but will likely be followed by other treatments such as radiation and chemotherapy. After stage 3A, lung cancer would not be treated with surgery.¹

A surgeon who specializes in procedures for lung cancer patients is called a thoracic surgeon. Dr. Jessica Donnington, a thoracic surgeon in Chicago, has discussed how doctors decide what type of surgery a patient needs. “We define our surgeries for early-stage disease in two ways. One, how much lung we take and two how we get through the chest wall,” Dr. Donnington explained.²

She went on to address surgery for early stages of the disease, saying “the standard answer for patients with stage 1 or stage 2 disease is that we do a lobectomy. That’s [removing] one third of the lung on the right or half the lung on the left.”

Doctors usually prefer to take as little lung tissue as possible, and Dr. Donnington explained that, “for patients with very small tumors, less than two centimeters, that sometimes something called a segment or segmentectomy works, and that is a portion of [the] lobe.”²

However, when doctors remove tumors, they have to balance wanting to be minimally invasive with wanting to be thorough and effective. “You have to take all of the lymph nodes and all of the blood vessels that go to that region to ensure you don’t miss any cancer cells, which may have spread,” Dr Donnington said.²

Lung surgeries can involve removing even more tissue at the advanced stages, as Dr. Shanda Blackmon, of Texas explained to Mayo Clinic. “My patients with advanced lung cancer are often surprised to learn that they can have an entire lung removed,” Dr. Blackmon said.³

She went on to add that the recovery times for various lung cancer surgeries vary widely based on how invasive or intensive the surgery is. 

“If you had a small part of your lung removed, you might be able to stay overnight in the hospital and go home the next day,” says Dr. Blackmon. “However, if you have an entire lung removed, you may need to stay in the hospital for a week or two. If you have a complication, you might need to stay longer.”³

There are primarily two ways thoracic surgeons perform surgery. One is known as a thoracotomy, which is what you might think of as a traditional lung cancer surgery. It involves a surgeon making an incision 8 to 10 inches long, between a patient’s ribs.  

The other way is called minimally invasive surgery. Over the past 20 years, doctors and researchers have developed a minimally invasive technique called video-assisted thoracic surgery, or VATS. This procedure only requires a small incision—usually between 1 to 3 centimeters—and can be done either with traditional instruments or with robotic assistance to remove lung tissue.

In a typical VATS procedure, the surgeon uses long instruments and a tiny camera to operate through the small cuts, watching everything on a 2D screen. With robotic-assisted thoracoscopic surgery (RATS), the setup is a bit different—the surgeon sits at a console and controls robotic arms that offers a high-definition, 3D views and enhanced precision.

Both approaches are safe and effective, and the choice between them often comes down to the surgeon’s training and preference. So far, studies show that VATS and RATS provide similar outcomes when treating early-stage lung cancer. Generally, VATS and RATS surgeries have been described as, “it hurts less, the recovery is faster, and people get back to their normal self so much better.”² According to Dr Blackmon, the less invasive nature of VATS procedures really does make a difference. “I’m a big proponent of minimally invasive surgery.”³

Dr. Thomas Bauer at Hackensack Meridian Health in New Jersey provided a view of how robotic assisted surgery works. As he explained, “the surgeon sits at the console next to the patient in the operating room and controls the instruments, including a 3D high-definition camera. The instruments have wrists which can move the same way that my hand moves.”  He added, “The camera and instruments were placed through small incisions between the ribs. The surgeon removes the lung tissue through one of the small incisions.”⁴

What is the experience like for patients?

For a traditional lung cancer thoracotomy, the hospital stay is between 5-7 days.  One lung cancer patient, Jennifer Toth, spoke candidly about recovering from her lung cancer surgery to remove her entire lung. “The first few days… can be scary and challenging and affect your mind, body, and spirit,” she said.  She added that there were also relatively minor things, like unexpected pain in her shoulder and arm when she woke up, because her left arm was placed above her head for most of the nine-hour procedure.  She also described loss of appetite and constipation from the pain medication.⁵

Perhaps surprisingly, Toth described her chest tubes as more painful than some of the incisions.⁵ Chest tubes are in place for drainage after a thoracotomy for 1 to 5 days, depending on the extent of the surgery. Additional concerns include scarring from the incisions and may deal with fatigue and infection as well.⁶

According to the Lung Cancer Foundation of America, it’s common for patients to experience pain in their chest area. Many patients also experience temporary breathing issues due to swelling. To help resolve this issue, patients are given a small breathing device after surgery called an incentive spirometer. It is a handheld device used to help patients take slow, deep breaths to keep their lungs healthy and prevent complications like pneumonia or atelectasis.  

Along with physical symptoms, there can be an emotional toll, as well. 

“Far too often, I see patients who have gone through surgery, and they’re recovering, but they still have moments when they feel very alone,” said Dr. Blackmon. She recommended support groups and ongoing medical monitoring.³

The five-year period after lung cancer surgery is critically important. Surgical resection remains the standard treatment for early-stage lung cancer. However, according to the National Library of Medicine, the recurrence rate after surgery is unacceptably high, ranging from 30% to 50%. Key risk factors identified include surgical procedure, TNM staging, lymph node involvement, body composition, and tumor characteristics. Despite extensive efforts, accurately predicting the likelihood and timing of recurrence remains a significant challenge.⁷ However, with early stage, with no sign of spread, the cure rate can be greater than 85%.

Although lung cancer surgery can be challenging, one of Dr. Bauer’s patients, William DiStefano, was encouraged by recent developments in surgery and kept the focus on returning to everyday life. 

“When Dr. Bauer explained how the robotic surgery worked and that I would be a candidate, I felt very at-ease. Within a couple of weeks, I was back doing what I loved (working in his garden) and feeling pretty good,” DiStefano said.⁴

Sources: 

1. Types of Lung Cancer Surgery: What to Expect and How to Lower Your Risk for Complications | U.S. News
2. Thoracic Surgery For Early Stage Lung Cancer | Lung Cancer Foundation of America
3. Lung cancer surgery: Types, recovery and survivorship | Mayo Clinic Comprehensive Cancer Center Blog
4. Understanding Minimally Invasive Lung Cancer Surgery | American Lung Association
5. Lobectomy: My Story | LungCancer.net
6. Surgery | Lung Cancer Foundation of America
7. Predicting Postoperative Lung Cancer Recurrence and Survival Using Cox Proportional Hazards Regression and Machine Learning | Cancers

More Than a Song: The Science of Music as Medicine

Upstage Lung Cancer is the first cancer charity to exclusively use music and the performing arts to accomplish our mission to promote awareness, advance understanding and remove the social stigma of lung cancer. Through these efforts we invest in innovative and significant early detection lung cancer research. 

Our musicians who provide such expert and enjoyable music for our educational concerts understand the profound power of their art to move an audience. But what if that power could be prescribed? Emerging research confirms what ancient wisdom has long suggested: music is a potent form of medicine, with a significant positive impact on patients facing cancer. 

Recently, researchers looked at patients undergoing radiotherapy, an anti-cancer treatment that uses radiation to destroy cancer cells.  Facing this treatment is frequently anxiety-producing. So, the research asked if using music therapeutically could help reduce some of the psychological difficulties associated with this treatment. This study showed that a music intervention helped reduce patients’ distress undergoing treatment.¹ Using music in this way is considered music medicine.  Music medicine scientists study how certain music-based interventions impact stress, pain, sleep and mood in patients. They also assess how different music affects surgeons’ performances and medical providers’ wellness.¹

But music therapy and music as medicine are far more than a pleasant diversion. They show how the art of music and the science of medicine can work in tandem. Music medicine and music therapy explore how targeted musical interventions can measurably reduce stress, pain and anxiety while improving mood and sleep. This powerful combination of art and science is not a new idea. Did you know that the Chinese character for medicine also incorporates the character for music? In the 20th century, music was found to be instrumental in rehabilitating the minds, bodies and spirits of World War II veterans.²

 The Clinical Evidence: Soothing Anxiety in Cancer Treatment

Today, rigorous studies are validating music’s role in modern healthcare, particularly for the psychological challenges associated with cancer treatment.

A large-scale study of nearly 2,000 lung cancer patients found that integrating music therapy into their treatment plan significantly reduced anxiety and depression, improved sleep, and enhanced overall quality of life. Based on these powerful results, researchers recommend 30-minute music sessions once or twice daily to alleviate emotional distress during treatment.^{2, 3}

This effect is also seen in high-stress diagnostic settings. For cancer patients, the anxiety before a PET scan—often called “scanxiety”—can be overwhelming. One study targeted this specific fear, providing patients with a 30-minute music therapy session before their scan. The results were clear and physiological: patients in the music group, compared to the group that did not receive music medicine, showed significantly lower heart rates, reduced levels of the stress hormone cortisol and reported less anxiety.⁴

A Tool for Deeper Connection and Comfort

Beyond stress reduction, music can also be a vital tool in palliative care. Researchers in India focusing on palliative care with advanced lung cancer patients found similar positive effects for music as medicine. Patients reported less anxiety, felt less pain, were in a better mood and had more motivation than patients who did not receive music therapy. The authors noted that the very act of selecting music can open a gateway for patients to discuss complex emotions and end-of-life preferences with caregivers and family, providing comfort when it is needed most.⁵

The research confirms what many patients have discovered on their own: in a journey where so much feels out of control, music offers a way to reclaim a sense of agency. It is a deeply personal and powerful act of self-care. Turning on a favorite song is not a mere distraction; it is a conscious choice to lower the heart rate, calm the mind, and create a personal sanctuary of sound, proving that the tools for healing can be as simple as pressing play.

Sources:

1. The Efficacy of Music Intervention in Patients with Cancer Receiving Radiation Therapy: A Systematic Review and Meta-Analysis | Cancers
2.  Music as medicine | Harvard Health Publishing
3.  The effect of music therapy on anxiety, depression, pain and sleep quality of lung cancer patients: a systematic review and meta-analysis | Supportive Care in Cancer
4. Music Therapy and Music Intervention for NSCLC Patients Undergoing PET with Fear of Cancer Recurrence | Integrative Cancer Therapies
5. Harmonising Hope: Impact of Music Therapy on Cancer Pain and Palliative Care | Indian Journal of Palliative Care 

Lung Cancer Awareness: Myths, Facts & the Need for More Research

This blog featuring our very own president and founder Hildy Grossman was written and published by 23andMe. It is part of an ongoing series of posts by 23andMe which highlight the work of the 20+ lung cancer patient advocacy organizations collaborating with them on their recently launched Lung Cancer Genetics Study. Upstage Lung Cancer is excited to be a part of this endeavor.

It’s not as if lung cancer is an obscure disease, and yet facts about lung cancer are not well known.

23andMe wants to spotlight the disease while also highlighting our efforts with our Lung Cancer Genetics Study and the work of more than 20 organizations collaborating with us on this important new research, which aims to identify genetic risk factors that contribute to lung cancer. Ultimately the goal of the study is to improve prevention, detection and treatment for lung cancer.

Lung cancer is the leading cause of cancer death worldwide. In the US, it accounts for one in five cancer deaths and kills nearly as many people each year as colon, breast, and prostate cancer combined. These staggering statistics underscore the urgent need for greater awareness and more research. 

Dispelling Common Myths About Lung Cancer

Our first post in this series looked at the origins of our Lung Cancer Genetics Study and how the collaboration started. This one focuses on myths and facts about lung cancer, and we are again leaning on the expertise of some of our collaborators. This time, we talked to leaders from the LUNGevity Foundation and Upstage Lung Cancer. They shared some common misconceptions about lung cancer and some facts they wished more people knew.

Myth: Only People Who Smoke Get Lung Cancer

No, it’s not just people with a history of tobacco exposure who get lung cancer.

Among lung cancer survivors and advocates, this pervasive myth about lung cancer being only a disease for people who have smoked is particularly vexing, and it’s not true.

Indeed, cigarette smoking is strongly linked to lung cancer, but as advocates like to say, “anyone with lungs can get lung cancer, but no one deserves it.”

Fact: Many Risk Factors Play a Role in Lung Cancer

“All the warnings about the dangers of tobacco exposure, which are totally legitimate, got people to make this very powerful association — tobacco exposure leads to cancer, but it’s not the only cause. Making this connection, we often ignore other causes,” said Upal Basu Roy, PhD, MPH, Executive Director of Research for the non-profit LUNGevity Foundation. “It’s hard to see beyond tobacco exposure.”

“Active tobacco exposure is indeed an important risk factor that’s been well-studied. However, other risk factors, such as radon exposure, passive (or secondhand) tobacco exposure, occupational exposures, air pollution, and genetics, all can play a role in lung cancer development. Often, it is a complex mix of many of those factors that contribute to why some people develop lung cancer”, said Upal.

In 2019, nearly 15% of lung cancers were not related to direct tobacco exposure. To put that into perspective, lung cancer in people who never smoked cigarettes, or LCINS, would be ranked in the top ten causes of cancer deaths if ranked separately from tobacco exposure–related lung cancer. LCINS is on the rise, and more research is needed to have an accurate estimate of the true numbers of LCINS today.

“80 to 90% of people with tobacco exposure never get lung cancer, while many people without tobacco exposure get the disease,” said Upal. “It’s incredibly complex. We haven’t unpacked how much a role all these contributing factors play, and that’s why this genetic study is so interesting. It offers a chance to learn more about the nature of the disease and how these factors might interact.”

Lung Cancer Screening and Early Detection

Myth: There’s No Way to Detect Lung Cancer Early

Current US screening recommendations include:

• Ages 50–80
• 20-pack-year cigarette smoking history
• Currently smoking or having quit within the last 15 years

Lung cancer screening exists — but not everyone at risk is eligible. There is a strong association between tobacco use and lung cancer, and current guidelines consider this history for screening eligibility. Current US guidelines recommend screening for people ages 50 to 80 who have a 20-pack-year cigarette smoking history and currently smoke tobacco or have quit within the last 15 years.

Unfortunately, the vast majority of people who are eligible for lung cancer screening don’t receive it. According to the American Lung Association, only 16% of eligible people were screened for lung cancer in 2024. Much work remains to ensure everyone eligible for screening knows about and has access to this life-saving healthcare measure. And additional progress is needed to expand lung cancer screening to include others at high risk, like those who have never smoked.

Fact: Not Everyone at Risk of Lung Cancer is Currently Eligible for Screening 

While lung cancer in people with a smoking history is more common in men, two-thirds of people diagnosed with LCINS are women. Hildy Grossman, who describes herself as a clinical psychologist by day and a jazz singer by night, is one of those women diagnosed with lung cancer who’d smoked cigarettes as a teenager but quit at age twenty.

Hildy was diagnosed in December of 2006 by chance. She’d slipped on the threshold of a narrow stairway, resulting in pain in her wrist. After a series of missed diagnoses, Hildy eventually had an MRI to determine if a pinched nerve in her back was causing the pain. Instead, the MRI showed two spots on her lungs. A biopsy revealed it was lung cancer. Her doctor told her how lucky she’d been that they caught it early, saying, “Somebody up there likes you!” Since her tumor was diagnosed so early (stage 1A), her treatment only required surgery, which she had in January 2007.

“As I came to terms with (the diagnosis), I asked myself, ‘Why me?’ Not ‘why did I get lung cancer,’ but ‘why was I able to find it so early and survive,’” Hildy said. The question prompted her to start Upstage Lung Cancer, an organization using music and the performing arts to raise awareness and support lung cancer research. Hildy is both the founder and president of the board. 

The Need for Expanded Screening Criteria

While current lung cancer screening guidelines have saved many lives by detecting cancer early, they also miss many others who may be at risk but who never smoked, or like Hildy, who quit cigarette smoking many years earlier. The problem is that there aren’t yet criteria outside of tobacco use for identifying those who are at the highest risk and could benefit most from screening. Without early detection, many lung cancers are not diagnosed before symptoms appear, such as a persistent cough or coughing up blood. And by the time symptoms occur, it’s likely the cancer has spread and will be harder to treat. In contrast, people diagnosed with cancer in its earlier stages tend to live longer or can even be cured. Lingering misconceptions about who is at risk leave many people vulnerable.

“That’s why early detection research (part of the Lung Cancer Genetics Study) is so important,” Hildy said.

Beyond One Disease

Myth: All Lung Cancer is the Same

There are two main types of lung cancer — non-small cell lung cancer and small cell lung cancer. 80 to 85% of lung cancer cases are non-small cell, and 10 to 15% are small cell. Then, there are numerous subtypes within those types of lung cancer, said Upal.

“And the biology is different, which has implications for how the lung cancer is treated,” said Upal.

Fact: Biomarker Testing Can Identify Lung Cancer Subtypes and Guide Treatment

Some lung cancer subtypes are defined by specific changes in the cancer cells, known as oncogenic driver mutations. These mutations speed up cancer growth. Some of these subtypes can be identified through biomarker testing, which looks for genetic changes in specific genes like EGFR, ALK, RET, or HER2. Discovering whether a tumor has one of these mutations — a biomarker — can help doctors choose the best treatment options, including targeted therapies for specific mutations.

However, only some people who might benefit from biomarker testing receive it. For example, one study examined rates of biomarker testing in more than 17,000 people who were diagnosed with advanced non-small cell lung cancer between 2015 and 2021. This study found that while testing rates increased over time, nearly one-third of people did not receive comprehensive biomarker testing by 2020. Barriers to biomarker testing are complex and include issues like cost, time, tumor sample quality, and lack of awareness of the value of testing. These challenges emphasize the importance of insurance coverage for biomarker testing and approved targeted therapies, increased education of healthcare providers, and self-advocacy by patients and caregivers.

Continuing the Conversation on Lung Cancer Awareness

Misconceptions like the ones addressed here represent just some of the many challenges faced by people diagnosed with lung cancer. As part of our lung cancer blog series, we will continue to amplify the voices of patient advocates and raise awareness of these and other little-known facts about the disease.  Visit the Lung Cancer Genetics Study page to learn more about the 23andMe study, our collaborators, and eligibility criteria.

Why Joining Our Efforts Is More Important Than Ever

The recent and ongoing cuts to funding for medical research will have lasting blows to scientists in universities, hospitals, and research centers. These cuts will jeopardize the diagnosis, treatment, and survival for all cancer patients. Lung cancer is the #1 cancer killer. With substantial cuts to scientific research, patients are at an even greater risk. 

How do federal funding cuts impact medical research?

Some of the most obvious barriers to medical research have come in the form of budget cuts. In mid-March, as part of Congressional negotiations to pass a six-month continuing resolution for fiscal year 2025, Congress cut government funding for Congressional Directed Medical Research Program (CDMRP) by 57%, from $1.5 billion to $650 million¹. The CDMRP was founded by Congress in 1992 to benefit both the American public and the military through biomedical research. The organization was intended to fill funding gaps for research organizations ². The program funds lung cancer research, in addition to many other diseases. 

On February 7, 2025, the Trump administration announced that the National Institutes of Health (NIH) would cut the indirect cost payment rate to universities, research institutes, and hospitals from 30% to 15%, capping indirect cost payments at 15% of a grant’s value³. These indirect funds are provided to cover operational expenses, such as renting space, hiring administrative staff, purchasing office supplies, or hiring specialists like lawyers or bookkeepers⁴. These costs are essential for universities to maintain research infrastructure and ensure compliance with regulations, contributing to the overall success of research endeavors. 

A third barrier occurred with the Trump administration appearing to have barred NIH from publishing grant meeting notices in the Federal Register. When NIH funds a grant, it has a two-step process, which includes a preliminary review and a final review and approval. NIH is not allowed to post notices that these final meetings are occurring, which blocks the grants from being approved ⁵.

So, what’s the harm?

The NIH is often acknowledged as the world’s largest public funder of medical research, so the funding cuts and stalled grants will have far-ranging implications. Toby Smith, Senior Vice President for Government Relations and Public Policy at the Association of American Universities, outlined for NPR what funding cuts will mean. Fewer Ph.D. students will be accepted, thus there will be fewer new researchers to fill research jobs. The American Council on Education and the Association of American Universities released a joint statement, saying in part that, “the loss of this American workforce pipeline would be a blow to the U.S. economy, to American science and innovation, to patients and their families, and to our nation’s position in the world as a leader in medical research⁶.”

As universities are being asked to shoulder more of the indirect costs of research, they may have to draw more from their endowments than in the past. But the total endowment draw is often limited, so universities may need to decide how to reallocate funding internally. Unfortunately, many universities will require hiring freezes while they determine how to redistribute their funding. 

With fewer research opportunities available in the United States, many scientists are concerned that students who are interested in science will seek training abroad and contribute to scientific research efforts in other countries. 

How will research cuts impact lung cancer research specifically?

It’s still too early to tell exactly how funding cuts will impact lung cancer research specifically. Groups who work to advocate for a cure, like GO2 for Lung Cancer and ALK Positive, have called for funding to be restored. Speaking to a local news station about lung cancer vaccines that are currently in clinical trials, Dr. Stephen Liu from Georgetown University’s Cancer Center acknowledged the uncertainty, but also said he thinks the funding cuts may have more of an impact on new research than research that is already at the clinical phase⁷. “We don’t really know exactly what the future holds, but I would say that trials that are further along, that are already underway, are not likely to stop,” Liu said. “The investment there is already paid, and those will probably be seen to fruition.” However, the more funding that is cut, the more impact on current clinical trials as we go forward.

What can you do?

When faced with news about the federal funding shortage other sources become necessary. While biotechnology investors could be an important source of replacement funding, the industry’s budget can’t compete with the multibillion-dollar budget that NIH had previously invested. Additionally, biotechnology companies tend to focus on scientific products with practical short-term applications, which leaves emerging scientific research unfunded⁸. Philanthropy, therefore, becomes more important than ever. It won’t be a cure, but it may help lifesaving projects continue.

It’s easy to feel powerless in the face of federal policy decisions. People taking action can make a difference. One way to push back involves legal action. Immediately after the current administration announced the funding cuts at the National Institutes of Health, 22 states sued to stop the funding cuts, which temporarily blocked them. Since restrictions on medical research can impact all of us, your voice can help to make a difference in your community and to your representatives.

Join our efforts to make a difference in early diagnosis of lung cancer by contributing to Upstage Lung Cancer and other lung cancer related organizations. If you also want to contribute through political advocacy, ALK Positive has released a template to reach out to your legislators. The template is written from the perspective of a lung cancer patient with a particular gene mutation but could easily be adapted if someone you know, or love has been impacted by lung cancer. The only way to lose is by doing nothing.

Sources:

1. Fears grow about plan to cut Pentagon medical research fund | Roll Call

2. About Us | Congressionally Directed Medical Research Programs

3. NIH slashes overhead payments for research, sparking outrage and lawsuit  | Science

4. Understanding Indirect Costs: A Brief Overview | Grant Professionals Association

5. Trump administration loophole snags US research grants from Lyme to lung disease | Reuters

6. Universities freeze hiring over federal funding concerns | NPR

7. Amid funding concerns, promising lung cancer vaccines could be available in next few years | WTOP

8. As research funding dries up for US science, few alternatives appear | Chemical and Engineering News

Beyond the Diagnosis: The Daily Reality of Living with Lung Cancer

Lung cancer statistics and treatment plans paint a clinical picture, but they often overlook the human story. What does it truly mean to navigate daily life with this disease? Beyond the medical charts and mortality rates, a vital question emerges: how does lung cancer reshape the everyday experiences of those it affects?

When doctors ask patients about their quality of life, they ask about how well patients can function physically, psychologically, cognitively, socially, and in their life roles (i.e. as family members or friends). Doctors also want to know how severe the patients’ symptoms are, if they’re experiencing financial burdens and how they’d say they’re doing overall^1,2,4. 

For years, there was little research on quality of life specifically for lung cancer², but fortunately, there’s been more research recently. Although the scale to assess quality of life is subjective, it’s often used along with more objective medical tests, and doctors have found that quality of life helps predict survival¹. Assessing a person’s quality of life is an important part of a multifaceted health evaluation that goes beyond just the clinical evaluation of symptoms. 

Symptoms of lung cancer can include fatigue, loss of appetite, cough, shortness of breath, pain, and coughing up blood¹. Living with any, or all these symptoms is significant, and can affect quality of life psychologically, socially and cognitively. The physical impact of these symptoms is most obvious, as they make it difficult to walk and carry things and have a ripple effect on a patient’s wellbeing. For example, fatigue, shortness of breath, pain and coughing also have a profound emotional and cognitive impact, especially when these symptoms create a lack of sleep. Although it may not seem as severe as the other symptoms, patients have reported that fatigue was the most limiting symptom for them¹. Because there can be side effects to deal with when undergoing lung cancer treatments, it’s important for patients to be prepared and assisted in managing these issues, to maximize quality of life. 

Demographic factors, such as gender, age, marital status and employment status can also impact quality of life³:

• Women were twice as likely to rate their quality of life as “poor” than “good”, with men pretty evenly split between evaluating their quality of life as “good” versus “poor.”  
• People under 52 years old were more likely to report a good quality of life despite treatment, and people over 59 were more likely to report poor quality of life. 
• Patients with less spousal support (i.e. divorced, unmarried) were more likely to report poor quality of life. 
• Patients employed full-time were more likely to report good quality of life, patients employed part-time were less likely to rate their quality of life as “good”, and unemployed patients were about five times more likely to rate their quality of life as “poor” than “good”⁴. 

When doctors recommend lung cancer surgery, they consider not only if it will prolong a patient’s life, but also its impact on quality of life. Immediately after surgery, 81% of patients report poor quality of life overall. Although the statistics about surgery show that most patients can return to similar levels of functioning in 3 to 6 months, some patients will continue to report low quality of life for longer. In some cases, self-perception may not match the medical reality. Perhaps unsurprisingly, patients who were already struggling to function and experiencing serious symptoms before surgery will report lower quality of life after surgery⁴. Surgeons may remove just the tumor and the tissue around it, remove a section (or lobe) of a lung, or remove an entire lung. Patients that had more tissue removed reported lower quality of life. As a result, surgeons have moved toward less invasive and video-assisted surgical procedures. Newer procedures can often be done with smaller incisions than traditional, more comprehensive surgery. The less-invasive procedures led people to score more highly on both physical and social/role-based parts of the quality-of-life assessment⁵.

When patients were diagnosed in earlier stages and are no longer in active treatment, they may still have some level of vigilance to make sure the cancer doesn’t come back, even when there are no longer major symptoms^1,2,6. Health uncertainty comes with great stress. Hildy Grossman, president and founder of Upstage Lung Cancer, reported that even though her lung cancer was diagnosed at Stage 1, she remembers asking herself if she should buy a new pair of blue jeans for fear she may not be around the next year. She said, “It took a couple of years to lessen the worry about survival, although it never goes away completely.”

It’s challenging to simply go about life as though the disease never happened.  When some of the symptoms of the disease are present, patients may see their relationships change as caregivers have ongoing responsibilities. One study attempted to ease the transition into the post-treatment period by developing a virtual program that offered patients cognitive behavioral therapy. The pilot program was generally well received by patients and continued to evolve with patients’ suggestions for improvement. Researchers want to expand this program on a larger scale⁶.

Finally, palliative care is an area of medicine focusing on preventing and treating side effects and ongoing symptoms. Having access to palliative care may improve quality of life throughout the lung cancer journey. It can be used at any point in the process, including at the point of diagnosis.  It can also be used alongside other treatments aimed at slowing or stopping lung cancer progression. Palliative care is provided by teams of doctors, nurses and other healthcare professionals in settings such as hospitals, outpatient centers and homes⁷. 

Be sure to listen to our companion Backstage @ Upstage podcast ”Improvise Life” with our guest James Hiter, of Streak for a Cure. 

Sources:  

1. Quality of life of patients with lung cancer | OncoTargets and Therapy
2. Improving Quality of Life for Lung Cancer Survivors | American Cancer Society
3. Quality of Life After Lung Cancer Surgery | Verywell Health
4. Factors influencing the psychology and quality of life in lung cancer patients | Saudi Medical Journal
5. Does video-assisted thoracoscopic lobectomy for lung cancer provide improved functional outcomes compared with open lobectomy? | European Journal of Cardio-Thoracic Surgery
6. Virtual Intervention for Patients with Lung Cancer | Lung Cancer Foundation of America
7. Palliative Care: Improving Quality of Life at All Stages | GO2 for Lung Cancer

KRAS, The Most Common Biomarker For Lung and Other Cancers: What To Know

When patients go to the doctor or hospital for cancer care, they often find information with various abbreviations and acronyms that are common in medical lingo but are a mystery to patients and their families. Upon diagnosis, it is very important to ask your doctor for biomarker testing to see what cancer mutations you have. This can be accomplished by a biopsy of your tumor as well as by a blood test, referred to as a liquid biopsy. KRAS is the most common biomarker of a gene that drives a particular cancer (oncogene). KRAS is the most common biomarker associated with lung (32%), colorectal (40%), pancreatic (85%) and some other cancers. The focus of this blog is on the KRAS biomarker, and we hope to answer some of the questions you might have.

What is KRAS?

Although KRAS is a gene, within the context of cancer it is also considered a biomarker, which is something that can be measured to help diagnose cancer, predict its course, and decide on treatments. Understanding more about a patient’s KRAS mutation can help doctors diagnose a patient’s disease and plan treatment by targeting the biomarker directly. KRAS was identified fifty years ago, and we now know there are different sub-types of KRAS that respond to treatments differently. This is why biomarker testing is so important. In addition, since cancers can also continue to mutate as they grow, which may introduce new biomarkers, it may be necessary to continue biomarker testing over the course of treatment to identify new targets. 

KRAS stands for Kirsten rat sarcoma viral oncogene homolog. It is pronounced Kay-ras. To break down the acronym meaning slightly, an oncogene is a gene that can cause cancer, and when two genes have similar genetic information, they are homologues of each other. 

What does a KRAS mutation do?

The KRAS gene produces a protein that provides important signals to cells related to how quickly they grow, mature and die. Mutated forms can allow cells to grow too much and develop into cancer. KRAS mutations can cause cancer in multiple parts of the body. KRAS mutations also not only cause tumors but also alter the microenvironment around the tumors that they cause, which inflames the area and suppresses the immune system cells that would normally respond to unusual growth in the body.

What are the different types of KRAS mutations? 

There are a few different mutations that can affect the KRAS gene, and the proteins that it produces. The most common KRAS mutations are G12C, G12D, and G12R mutations. Proteins are made up of amino acids, and each of these mutations refer to where and how the amino acids are changed. Different KRAS mutations respond to treatment differently, so it is important for doctors and patients to determine which KRAS mutation the patient has.

How common is KRAS? 

KRAS mutations are very common across multiple cancer types. Doctors and medical professionals see KRAS mutations in about 25% of all solid tumors in the body. About 50% of lung cancer cases with KRAS mutations have the G12C mutation, with the rest having other mutations. Although the incidence of KRAS mutations is somewhat higher in people who smoke, it is not found exclusively in smokers.

Why is KRAS hard to treat?

The first KRAS gene mutation was discovered in 1982, and for almost 40 years, scientists thought that the mutated protein was “undruggable,” because the surface of the protein lacked places for drugs to latch on to. As a result, scientists have had to explore other elements in the tumor microenvironment that KRAS produces as targets for drugs, but these approaches were often imprecise. Finally, researchers found an allosteric site on the mutated proteins that drugs can target. An allosteric site isn’t the active site, but another place where medications could alter the shape of the protein to affect the active site. This allowed them to develop lung cancer drugs that can affect the G12C mutation only.  

How are KRAS cancers treated?

Current standard of care for patients with KRAS positive tumors include surgery, radiation, chemotherapy and immunotherapy, or a combination depending on the stage of their cancer. KRAS mutations have been difficult to treat because uncontrolled cell growth can enable tumors to evolve resistance to traditional chemotherapy treatments. There are currently two targeted therapies approved for G12C, with active new research in drug development. There are also clinical trials offering new therapeutics. It is important to make sure your doctor is up to date on new developments.  

Be sure to listen to the Backstage @ Upstage podcast on ”Kicking Cancer” with our guest Terri Conneran, founder of KRAS Kickers. 

Sources:

KRAS mutation: from undruggable to druggable in cancer | Nature
What’s new in KRAS mutation research? | MD Anderson Cancer Center
It’s KRAS Biomarker Lung Cancer. What Do I Do Now? | Lung Cancer Foundation of America
What is KRAS Cancer | KRAS Kickers
KRAS and Lung Cancer | American Lung Association
KRAS | Fight Colorectal Cancer

A Legacy of Hope in the Fight Against Lung Cancer

This is the first in a series of posts 23andMe plans to publish in order to help raise further awareness of lung cancer. The ancestry service hopes to highlight the work of the 20+ lung cancer patient advocacy organizations collaborating with them on our recently launched Lung Cancer Genetics Study. Upstage Lung Cancer is excited to be part of this endeavor.

A lung cancer diagnosis is often overwhelming, bringing with it a flood of questions — some practical, some deeply existential. From treatment options to family support, patients are often left searching for answers amid difficult news.

For Ilana Stromberg, a mother of five who was diagnosed with lung cancer in 2019, those questions felt all too familiar. She knew firsthand the isolation that can come with this diagnosis and the desire to connect with others who understand. So when an oncologist friend called asking if she’d talk to one of his patients, Susan Troper, Ilana immediately agreed to reach out.

The two women had more in common than just their diagnosis: they were close in age, each raising five children, and shared a Jewish heritage. “We talked about a lot of things, often our kids, but also about symptoms, fears, treatments, doctors…. We became friends.” But there was something deeper they also shared — a determination to change the future of lung cancer for the next generation.

The Urgent Need for Lung Cancer Research

Lung cancer remains by far the number one cause of cancer death in the United States. In 2020, more people died from lung cancer than breast, colorectal, and prostate cancer combined, according to the American Cancer Society. Despite this fact, lung cancer receives only about nine percent of federal cancer research funding, and much of that research doesn’t incorporate genetics.

While most of us know that smoking increases one’s risk, between 10–20 percent of people who develop lung cancers have never smoked or smoked less than 100 cigarettes in their lifetime. Two-thirds of these people are women, like Ilana and Susan.

Both Ilana and Susan shared concerns about the lack of options for patients and the need for more genetic research. They worried for their children, wanting to understand if genetic markers could reveal early signs of the disease. It was out of these conversations that the idea for a large-scale genetics study began to take shape.

Ilana’s lung cancer journey had motivated her family to start a non-profit called The Happy Lungs Project in 2021. The goal of The Happy Lungs Project is to advance research that leads to dependable treatments and a cure for RET-positive, non-small cell lung cancer. RET is a gene that acts as a biomarker — a sign of a specific subtype of cancer. When the RET gene is mutated, it can drive the uncontrolled growth of cancer cells, acting as the primary “driver” of cancers in people like Ilana. RET-positive lung cancer is relatively rare, accounting for about two percent of non-small cell lung cancers. There are many other genes (or biomarkers) associated with different lung cancer subtypes. For some, new treatments help slow the progression of the disease. However, scientists are still wrangling with understanding all the contributing factors in lung cancer.

It quickly became clear to Ilana that patient participation in research was critical for improving understanding of the disease and eventually developing new treatments. Through her work with The Happy Lungs Project, Ilana connected with leaders from other lung cancer advocacy groups, and she heard a common theme — an effort by many to create lung cancer registries, or databases containing detailed information about many people with lung cancer. Ilana recognized that a dedicated, national lung cancer registry serving all of these groups could be a game-changer for research, helping recruit patients for studies more quickly and investigating genetics along with other information about a patient’s cancer.

Although there were efforts in the past to create a broad lung cancer registry, there just wasn’t the means of making it happen, at least not until Susan’s involvement.

A Vision Grows: From Conversation to Collaboration

Susan Troper Wojcicki, who had an impressive career as a former CEO of YouTube and one of Google’s early employees, was also the sister of Anne Wojcicki, 23andMe CEO and co-founder, and Janet Wojcicki, PhD, an epidemiologist and professor of pediatrics at the University of California, San Francisco. Ilana asked Susan if she thought Anne and 23andMe would be interested in partnering on a lung cancer registry, speculating that 23andMe might already have in place the recruitment resources and privacy parameters to ensure robust enrollment and a safe and secure experience for patients.

Excited about this possibility, Susan spoke to her sister Anne about the idea of creating a nationwide genetics study for lung cancer, one that could unite scientists, patients, and advocacy groups in a mission to understand the genetic factors behind the disease.

In early 2023, Ilana got a text from Susan saying it was a go! Troper Wojcicki Philanthropies — the family foundation of Susan and her husband, Dennis Troper — would fund a collaborative effort, and Susan’s sister Anne’s company, 23andMe, could create a lung cancer registry and genetic research study. “Just like that, it was happening,” Ilana said. “It was born out of Susan’s unbelievable resourcefulness, untamed imagination, and staggering generosity.”

Building a National Registry with Patients at the Center

The aim of the Lung Cancer Genetics Study is to uncover genetic insights that could enable earlier detection, more effective treatments, and potentially even prevention strategies for lung cancer. What sets the study apart is its patient-centered approach. From the outset, Ilana and Susan recognized that meaningful change requires input from those directly affected, and they wanted to make sure that patient voices guided the design and implementation of the study.

Marcia Horn, president and CEO of ICAN, International Cancer Advocacy Network, leads several organizations that focus on specific lung cancer biomarkers. She recalls talking with Ilana about a patient registry and lung cancer genetics study that not only would involve all the non-small cell lung cancer biomarker organizations, but that Susan would convene a meeting for all the relevant organizations to participate in the planning.

This collaborative spirit brought together scientists, clinicians, advocates, and caregivers from across the country. At a special summit, expert researchers and representatives from 12 lung cancer advocacy organizations met to hash out the initial vision for the study.

“Ilana and I wanted to make sure that all the major players in non-small cell lung cancer biomarker support groups were invited to this meeting,” Marcia said. It was the first time that all the biomarker patient advocate leaders had ever been in the same room at the same time. “That was very exciting, and we’ve developed closer relationships and collaborations because of that meeting.” Since then, the number of advocacy organizations supporting the study has grown to nearly two dozen, with more than 25 patients and advocates participating as advisors.

After months of hard work, the study launched in July 2024 and enrolled 1,000 participants in less than six weeks, with a goal of reaching 10,000. In order to help more researchers make new discoveries, the de-identified data from the study will be made available to approved nonprofit researchers and institutions at no cost through a controlled-access database starting in the summer of 2025. De-identified data in the scientific database will include genetic data, data from surveys on participants’ lung cancer experience and, in some cases, data from medical records and tumor testing. Combining all these de-identified data types will help researchers investigate how genetics, environment, and other factors impact lung cancer risk and progression of the disease over time. The study is approved by a third-party ethics review board known as an institutional review board, or IRB.

According to Marcia, the Lung Cancer Genetics Study is a gift to patients, care partners, families, clinicians, and biomarker organizations everywhere.

“The results of the study will no doubt dramatically impact the field of lung cancer and could lead to the development of therapies that aren’t even conceived of right now,” Marcia said.

Susan’s Legacy Lives On

Just as the Lung Cancer Genetics Study was taking off, Susan’s health declined, and she passed away in August 2024. Her legacy, however, lives on through this initiative. Her drive to create something lasting and transformative is a testament to her commitment to patients, families, and future generations.

Ilana reflects on the study’s creation with gratitude for the friendship that sparked a powerful movement. “She never gave up. Susan remains the ultimate force of good in our world,” Ilana said. “Susan is a daily reminder of how to live this precious and fragile life, and I feel so very blessed to have known her.”

Today, the Lung Cancer Genetics Study stands as a beacon of hope in lung cancer research. By involving patients, families, and the scientific community, it holds the promise of uncovering insights that could reshape the future of lung cancer care.

To learn more about the 23andMe study, our collaborators, and eligibility criteria, visit the Lung Cancer Genetics Study landing page.

What Are Neuroendocrine Tumors? Why Are They Important?

Neuroendocrine cells specialize in repairing tissues that line important organs, like the lungs. Within the lungs, they produce hormones that regulate air flow and blood flow. Neuroendocrine cells across the body can develop tumors, including the neuroendocrine cells in the lungs. These are known as pulmonary neuroendocrine tumors. Neuroendocrine tumors are classified based on how fast they grow, where they are located in the lungs, and whether or not they release hormones. Neuroendocrine tumors can also grow at very different rates, depending on what type of tumors they are. Some types are very aggressive, and others grow slowly. 

One classification system for neuroendocrine growths measures the tumor, the nodes and metastasis. Doctors measure how large the tumor is, look at the nearby lymph nodes , whether cancer has spread to them or not and whether the tumor has spread (or metastasized) to other parts of the body. Neuroendocrine tumors can also be classified in stages between 1 and 4, based on how many centimeters the tumor measures and whether it has spread to nearby lymph nodes or not. Stages 0, 1, 2 and 3A are considered early-stage cancers, while anything after stage 3A is considered a more advanced stage cancer.    

Symptoms of neuroendocrine tumors include shortness of breath, a cough that won’t go away, a hoarse voice, fatigue, recurring bronchitis or chest infections and chest pain or coughing up blood. Neuroendocrine tumors that release hormones can cause different conditions in the body, each with their own set of symptoms. One, called hypercalcemia, increases the amount of calcium in the blood, which leads to muscle cramps, confusion and can make the heartbeat irregular. Patients with carcinoid tumors sometimes produce too many prostaglandins and too much serotonin, which leads to symptoms similar to asthma, facial flushing or lesions and diarrhea. Neuroendocrine tumors can also lead to acromegaly, or an excess of growth hormone that make the face, hands and feet grow too much. This type of tumor can also cause Cushing’s Syndrome, which causes excessive hair growth, weight gain and darkening skin. 

One major type of neuroendocrine tumors are carcinoid tumors. Like other neuroendocrine tumors, carcinoid tumors are classified in various ways. One classification system describes where the tumors grow, and whether they form near the center of the lungs (central carcinoids) or further away from central air vessels (peripheral carcinoids). Most carcinoid tumors grow slowly and are unlikely to spread beyond the lungs. Some atypical carcinoid tumors are usually found in smokers, and are more likely to spread from the lungs.  Most carcinoid tumors are found in people between the ages of 45 and 55. Doctors diagnose between 2,000 and 4,000 carcinoid tumors each year in the US. They have found that these tumors do not respond as well to new treatments, like immunotherapies or targeted therapy, but that they respond well to surgical intervention and a certain set of medications.  

Small-cell lung cancer tumors are the most common type of neuroendocrine tumors. This type of lung cancer is much more aggressive than carcinoid tumors and is usually not diagnosed until it has already spread beyond the lungs. Doctors refer to the condition as limited stage small-cell lung cancer if it remains in the area of the lung where it first developed, and extensive-stage small-cell lung cancer if it has spread to other parts of the lungs. Although small-cell lung cancer responds well to treatment, it often recurs. Many smokers develop small-cell lung cancer. 

This blog was made possible thanks to our sponsor Boehringer Ingelheim.

Sources:

Neuroendocrine Tumor Stages and Survival Rate | City of Hope

Learn About Lung Neuroendocrine Tumors (NETs) | Neuroendocrine Tumor Research Foundation

8 Common Signs of Neuroendocrine Lung Tumors | Verywell Health

Lung Carcinoid Tumor | Lung Neuroendocrine Tumor | American Cancer Society

If You Have a Lung Carcinoid Tumor | American Cancer Society

Spotlight on Small-Cell Lung Cancer and Other Lung Neuroendocrine Neoplasms | ASCO

New Targets for Existing Drugs May Offer Benefits To Cancer Patients

New approaches to treating lung cancer may already be out there without the medical community knowing it yet, and a process called drug repurposing could be the missing link to such discoveries. 

What is drug repurposing? 

Drug repurposing is using drugs that were originally developed for one condition to treat another disease or condition. Drug repurposing also has several other names, including drug repositioning and drug re-profiling. Drugs that are adapted to treat cancer are sometimes called repurposed non-oncology drugs. As of 2018, 75 drugs had been repurposed to treat diseases or conditions other than the one that they were developed to treat. Some drugs that are repurposed may have the potential to treat multiple diseases or conditions, but have only been tested in one, and some may be found to be more effective when combined with other drugs. 

There are three reasons why scientists and researchers repurpose drugs rather than developing new ones. One has to do with time, one with cost, and one with having knowledge of effectiveness and toxicity of current drugs on the market. According to a study published in Current Oncology in 2023, the average time to develop a new cancer drug is 8.3 years compared to 3 to 4 years to repurpose an existing drug for cancer treatment. Some established drugs can skip a phase I clinical trial, which is a study done in a small group of people to determine whether a medication can be used by humans and the proper dosage for it. (This is not always the case, and sometimes if a drug is used in a different population than the original it will take just as long to test). It is also significantly less expensive to repurpose drugs than to develop new ones. It only costs about $300 million to bring a repurposed drug to market, versus $2 to $3 billion to develop a new one. Also, having knowledge of toxicity of existing drugs allow greater safety going forward. 

Apart from cost and time factors, there are also medical reasons why drug repurposing makes sense. The success rate for developing a new cancer treatment or medication is only about 2%, so it makes sense to explore other uses for drugs that have already been approved for other purposes. 

How do scientists repurpose drugs? 

Be sure to listen to Backstage @ Upstage podcast, “Everything Old Is New Again: Imagine This; Repurposing Existing Drugs for New Uses”, with Jane Wilkinson and Jaime Cheah for a description of exciting innovations in repurposing drugs.

Drugs are usually repurposed in one of three ways: by computational methods, biological methods, and mixed methods. 

When scientists and researchers use the computational method, they collect database information on chemical structures, gene expression, and proteins that would be affected by the drug, or may look into electronic health records of patients who have had experience with the drug. Machine learning approaches help with this type of computational research. Although it isn’t the same as laboratory testing, computational analysis can give doctors and researchers ideas of which drugs may be good candidates for repurposing. The biological method is more experimental than the computational method and involves performing experiments on animals, evaluating the effectiveness of repurposing drugs through clinical trials, looking at how the drug binds to its targets and which targets might be similar enough to be impacted by the drug, or examining the overall function of a group of cells in response to a medication administered to it. Mixed approaches usually start with computational research and later validate or test the results of that research with biological experiments or clinical trials. This makes the development process faster and more effective than biological or computational approaches alone. 

Repurposing drugs to treat lung cancer

This blog post is not intended to be a comprehensive explanation of drug repurposing as it relates to lung cancer but will touch on several recent drug repositioning discoveries that may work to treat lung cancer. 

In July 2024, Science Daily covered a study that explored using a diabetes drug (which has been approved in several countries but is not yet approved in the United States) to treat lung cancer. This drug helps to ensure that non-small-cell lung cancer cells don’t develop resistance to chemotherapy, which extends the usefulness of the treatment. 

Another study in early 2022 looked at the delivery method for drug-repositioning for lung cancer. When patients are given repurposed drugs that typically treat conditions that they may not have, those drugs build up in the liver, kidney and spleen. There are several anti-tumor medications that are usually administered through inhalation; however, those medications also have multiple side effects. One promising development involves loading repurposed drugs onto nanocarriers, tiny particles which can deliver the drugs directly to the lungs. There, smaller particles and larger particles of the medication get deposited in different parts of the lungs, ensuring more even coverage. 

Other research on repurposing drugs for cancer involves beta blockers; using an arthritis medication to block cyclooxygenase or COX enzymes, which allow tumors to more easily metastasize; using cholesterol medication for its tumor suppressing abilities; or using diabetes-related medicine to block the activation of genes that cause cancer. 

Stay tuned for more innovation in repurposing drugs!

Sources:

Drug Repurposing in Non-Small Cell Lung Carcinoma: Old Solutions for New Problems | PMC (nih.gov)

Diabetes drug reduces drug resistance in lung cancer, improving chemotherapy effectiveness | ScienceDaily

Inhalation delivery of repurposed drugs for lung cancer: Approaches, benefits and challenges | ScienceDirect

Drug repositioning in non-small cell lung cancer (NSCLC) using gene co-expression and drug–gene interaction networks analysis | Nature Scientific Reports

Current Landscape of Therapeutic Resistance in Lung Cancer and Promising Strategies to Overcome Resistance – PMC (nih.gov)

Review of Drug Repositioning Approaches and Resources | PMC (nih.gov)

Drug repurposing: a promising tool to accelerate the drug discovery process | ScienceDirect
 

How Did Clinical Trials Come About?

For patients with lung cancer, one treatment option may be a clinical trial. Clinical trials provide valuable insights on how people respond to new treatments or treatment combinations. But how did clinical trials come to be?

It’s taken a long time to arrive at clinical trials in the form that they are today. According to an article inthe journal, Perspectives in Clinical Research, the first record that we have of something resembling a clinical trial comes from The Bible. In The Book of Daniel, King Nebuchadnezzar ordered his soldiers to drink only wine and eat only meat, believing that this would make them the strongest. However, several noblemen objected, as they preferred to eat vegetables. The King allowed them ten days to eat only legumes and water, then compared their performance to that of his meat-eating soldiers. He found that they performed better than the soldiers on his diet, and they were allowed to continue their vegetarian diet.

The first theoretical application of a clinical trial in the medical world comes from Avicenna, an 11^th century Islamic philosopher and poet. In his Canon of Medicine, he describes how a clinical trial should be run: the subjects should not be suffering from unusual complications, and the remedies should be used as they normally would be. Avicenna also advised physicians to test if the results are reproducible. Although he wrote about how to conduct a clinical trial, Avicenna’s writings seem very theoretical, as there is no corresponding record of actual clinical trials that he carried out.

One of the first recorded medical tests that resembled a clinical trial took place not because it was carefully planned and based on deep theory, but out of necessity. In 1537, the famous French surgeon Ambroise Pare was serving with the French army during the War of Spanish Succession. Pare was trying to treat wounded soldiers with boiling oil to sanitize their wounds. However, he did not have enough oil for the wounded. So, he came up with a mix of egg yolks, roses and turpentine to use on some of the soldiers. In his writing, he confessed to being nervous about this improvised treatment, and unable to sleep well because he feared the men were in pain. However, when he checked on patients early the next morning, he found that the egg mixture had not adversely affected the soldiers’ wounds, and that these soldiers had slept more soundly than those treated with the conventional treatment.

One of the first recorded intentional clinical trials was carried out by Scottish physician, James Lind while treating scurvy in sailors in 1747. He ran the trial as a controlled experiment and made sure that the sailors were all kept in the same conditions and fed in the same way. He then tried six different treatments, ranging from seawater, and cider to various elixirs, the recommended treatment of the day, and a diet of oranges and lemons for two of the soldiers. Two soldiers tried each treatment option, and Lind found that the sailors treated with oranges and lemons improved the most. He published his results in a Treatise on Scurvy in 1753.

Between 1753 and the middle of the 19^th century, clinical trials continued to evolve and become more complex, with additional features like placebo treatments, “blind” studies (where neither the physician nor the subject know whether they are receiving an active treatment or part of the control group) and truly randomized assignment of treatments.

It is not widely known who performed the first clinical trial related to cancer. But, according to the Yale School of Medicine, the first clinical trial of chemotherapy came out of military-related studies. As World War II was beginning, the US government had asked Yale to study nitrogen mustard, which had been used as part of chemical warfare in World War I. Two younger pharmacology professors, Louis S. Goodman and Alfred Gilman, began their research in 1942. They noticed that nitrogen mustard destroyed lymph tissue and bone marrow and theorized that it could be used to treat tumors. They experimented first on mice and rabbits, and had promising results, before trying the treatment on a terminal cancer patient with lymphosarcoma. The 48-year-old patient initially saw his tumors regress, and the results (though not long-lasting) were considered promising enough that the study was expanded to 67 patients.  

The National Cancer Institute states that the first major clinical trial that studied lung cancer in a large population started in 1993. The trial studied the effect of screening for lung cancer and other types of cancer such as prostate cancer, colorectal cancer and ovarian cancer. The National Cancer institute also lists the National Lung Screening Trial, which studied two ways of diagnosing lung cancer, as one of the first landmark lung cancer clinical trials.

Sources

Evolution of Clinical Research: A History Before and Beyond James Lind | NIH

From the field of battle, an early strike at cancer | Yale School of Medicine

Celebrating Clinical Trials Day 2021: The Evolution of Clinical Research | PharPoint Research

Milestones in Cancer Research and Discovery | NCI National Cancer Institute

What to Expect From Screening to Treatment

We have narratives and expectations for many life events, like getting married or having a child, but there is no widely understood set of expectations for being diagnosed with a disease like lung cancer. This blog post will describe some of the key stages of the journey for anyone who is being screened, has just been diagnosed, or is in treatment for lung cancer, so that you know what to expect. 

What to expect during screening

Not everyone who is screened for lung cancer will have lung cancer. But screening is an important first step in the lung cancer diagnosis process, and many people may not know what to expect. 

The most common method of screening for lung cancer is called a low-dose CT scan, or LDCT, which makes detailed images of internal organs. Although LDCT is very safe, there are some small risks to be aware of in advance. For one thing, LDCT does involve exposure to radiation, although it is a very low amount, comparable to the amount of natural or background radiation most people are exposed to over the course of six months. The radiation levels are slightly higher than those of other routine screenings, like mammograms. As with screening for other forms of cancer, there is also the risk that the test may show a false positive. According to the American Lung Association, 12-14 percent of screening scans yield a false positive, although that rate is decreasing as doctors learn more about who should be screened. Finally, there is a risk of incidental discoveries, in which the scan finds something in the scanned area that is not lung cancer, but that also requires medical treatment. 

Before the scan, it is a good idea to call the insurance company to make sure the scan is covered. On the day of the scan, there is usually very little preparation required, but you should let your doctor know if you are sick. When it comes time for the scan, you will have to remove any metal you are wearing. You may or may not need to change into a hospital gown. The scan itself will take less than a minute. You may need to hold your breath. 

Depending on what the scan finds, you may need more tests after the initial one, like a PET scan or biopsy. 

Emotions upon diagnosis

When the doctor recommends a lung cancer screening, many people may focus on the physical or logistical things that they need to do, but it is also important to consider the emotional aspect of receiving a lung cancer diagnosis (if there is one). When people are diagnosed, it is common to feel a wide range of emotions and reactions, including shock, angry, afraid, worried, anxious, depressed, guilty or lonely and feeling overwhelmed. In the face of these emotions, it may be helpful to learn more about lung cancer through research or asking questions. There are also many medical professionals who are there to support you, so you don’t have to weather the emotions alone. Finding a patient advocate who has experienced the process before may be useful in managing both the practical and emotional sides of a lung cancer diagnosis. 

Self-reflection can also be a valuable tool in managing the varied emotions that come with a lung cancer diagnosis. If you are diagnosed with lung cancer, you should consider what you most need at that moment and what you want to tell others. 

What to expect from surgery

For many people who are screened and catch lung cancer in an early stage, surgery may be the first step of treatment. Here are some things to expect before and during surgery. 

Before surgery you will need to have tests to see how well your lungs, heart and other organs are functioning, to make sure that they are healthy enough for surgery. You may need to walk a mile or do other physical activity every day to reduce the risk of getting sick after the procedure. If you smoke you will have to stop. Try to avoid getting sick with respiratory illnesses before the surgery. Immediately before surgery you may need to fast and take certain medications. 

There are four types of lung cancer surgery, and they each involve removing a different amount of the lung. Our lungs are divided into lobes, with the left lung having two lobes and the right lung having three. The lobes are also further divided into sections and wedges. In a wedge resection, surgeons take out just the tumor in the lung and some of the tissue around it. In a segmentectomy, they remove a segment. If surgeons remove a lobe, it is called a lobectomy. In rare cases surgeons can remove a whole lung. During lung cancer surgery, surgeons will also remove dime-sized lymph nodes near where they do the surgery to test for cancer. 

Lung cancer surgery is performed in two ways. In the older approach, doctors make a larger incision between your ribs to access your lungs. A newer approach is video-assisted thoracoscopic surgery (or VATS), in which surgeons make smaller incisions and insert a small camera, which they use to help them complete the procedure. 

What to expect when recovering after surgery

After the surgery, you will likely be in the hospital for two to seven days, assuming there are no major complications. Hospital staff will encourage you to move as soon as possible. You may have a breathing tube. The length of your hospital stay depends on which type of surgery you had and whether there are complications. In general, patients who have VATS procedures recover more quickly. If you have an entire lung removed, you may need to stay in the hospital for up to two weeks. 

When you are discharged from the hospital, you may still need a breathing tube as you recover and it may take a few weeks to a few months to return to normal. You may not be able to lift more than 10 pounds for a few weeks after the surgery. As a result, you may need help with everyday tasks like getting groceries. It may also be difficult to sleep for more than 3 to 4 hours, due to the pain, although this will get better over time. Some people also find that the incision site is sore or tight for a few weeks or months. 

Emotional recovery after cancer treatment 

Even if you successfully treat your lung cancer and go into remission or are declared cancer-free, you may still deal with the emotional effects of cancer treatment. With the end of treatment, you may be ready to return to a more normal life. But if you’ve built strong connections with your care team, you may also feel anxious about leaving them behind. 

When you finish treatment, you may be offered a cancer survivorship plan, which is a visit that includes a summary of your treatment and the likely side effects as well as a chance to discuss how you are feeling emotionally. The healthcare professional who does the visit may also be a good resource to stay in touch with going forward. 

Although people may expect to feel positively when they finish cancer care, cancer survivors may still deal with negative emotions in the aftermath of treatment. These include grieving or feeling angry about the time you had to spend in treatment or plans that you missed because of treatment, body insecurities due to scarring and physical changes because of surgery, fear and anxiety about cancer returning, stress, sadness or worry about finances, or a feeling of loneliness, as if no one can understand what you are going through. Cancer survivor groups may help to discuss these feelings and feel less alone. 

Sources

What to Expect from a Lung Cancer Screening | American Lung Association

Lung Cancer Surgery: Types and What to Expect | U.S. News (usnews.com)

Lung cancer surgery: Types, recovery and survivorship | Mayo Clinic Comprehensive Cancer Center

How Long Does it Take to Recover from Lung Cancer Surgery? | healthline.com

Coping With Emotions From A Lung Cancer Diagnosis | Lung Cancer Research Foundation

Emotional recovery after cancer | Mayo Clinic Health System

Lung Cancer Care Today and Tomorrow

Although we’re far from having a cure for lung cancer for all, recent research on many different aspects of the disease and its treatment offers hope today and for the future.

Researchers are still a few years away from being able to have blood tests, as a standard of care, to diagnose lung cancer before symptoms appear. We do have techniques to test blood samples for antibodies, proteins or abnormal DNA that could signal the presence of cancer. Because blood tests are often routine in office visits, and they are much less invasive than some other testing procedures like biopsies, they present an attractive option for potentially detecting lung cancer early. Detecting lung cancer in the early stages is the opportunity for surgical removal and for radiation of the tumor that can lead to a cure. Finding the disease early gives physicians and patients more time to strategize and consider options to treat the disease for better outcomes.

Another important advance in lung cancer is using machine learning to analyze huge datasets to help physicians and researchers understand complex issues around early detection, diagnosis, prognosis, and appropriate uses for chemotherapy, targeted therapy, and immunotherapy. Collaborative research efforts have generated huge lung cancer databases which can be used to facilitate machine learning. Although physicians do not currently use machine learning for an initial diagnosis, it can be used to enable systematic advances in clinical studies of lung cancer. The benefit could be in improving accuracy in interpreting CT scans. Machine learning is a form of artificial intelligence that uses mathematical algorithms in order to make predictions by identifying patterns in the data. It’s been used for years advanced approaches for early detection, cancer type classification, prognosis prediction, and for evaluating drug response. As such, it can also serve as a tool in diagnostic decision making or a second opinion. Machine learning can also help to choose the right targeted treatments for some of the more common types of lung cancer. Machine learning models can better understand the prognosis for a certain type of lung cancer. They can aid in proposing certain types of targeted therapy, chemotherapy and combinations that improve chances of a successful recovery. In addition, immunotherapy, or getting the body’s immune system to attack cancerous cells, has proven a promising new treatment for lung cancer. Since not everyone responds to immunotherapy in the same way, based on how their tumors develop, machine learning experts have developed models to predict how well certain patients will respond to immunotherapy.

There have also been surgical and non-surgical advances in how lung cancer is treated after it is diagnosed. One of the surgical advances involves decreasing how much of the lung surgeons remove. Did you know that your lungs are each made up of different numbers of lobes? Your right lung has three lobes, and your left lung has two. In the past, when people had non-small cell lung cancer, surgeons would often remove an entire lobe of the lung. This was because a 1995 study found that removing only part of a lobe meant that lung cancer was more likely to come back. But with advances in technology in the decades since, doctors and researchers wanted to revisit that finding with a large-scale, international clinical trial. The study found that removing part of a lung lobe was just as effective as removing the whole lobe. While operating on a smaller part of a lung does not necessarily mean the lung will function better afterwards, the less invasive surgery lessens the risk of other complications.

Researchers have also continued studying non-surgical treatments for lung cancer. A study published this year in JAMA Open Network found that early-stage cancer patients that were treated with immunotherapy and chemotherapy at the same time had better survival rates than those who were treated with chemotherapy alone. The patients who were given both types of treatment also were more likely to see all signs of their cancer disappear. Although immunotherapy was developed in 1981 and is not new, it has advanced rapidly in recent years. The results of the study are promising, but more research is needed on whether the findings hold up wide-scale, how effective it is, and which types of lung cancer it can be used for.

Targeted therapy is another promising area of treatment research. It involves finding changes in the DNA that is unique to each patient’s specific tumor and developing treatments to target those changes or cancer cell weaknesses instead of harming healthy and benign cells. One of the targeted treatments involves epidermal growth factor receptor (often called EGFR), a protein which causes cells to grow. However, if there is a mutation that produces too much of this protein, it may cause cancer. Another commonly targeted treatment involves the ALK gene, which helps your body develop its gut and nervous system, but then should get turned off. If the ALK gene gets turned back on again, it can fuse with another gene in a way that causes cancer. The ROS-1 and NTRK genes are other genes that, if they fuse with other genetic material, cause uncontrolled growth, which leads to cancer. Because of this, they are also the subject of new targeted therapies.

Sources

Blood Tests For Detecting Lung Cancer: How They Might Work | healthline.com

Machine Learning for Lung Cancer Diagnosis, Treatment, and Prognosis | ScienceDirect

Lung-Sparing Surgery Effective for Early-Stage Lung Cancer | NCI

Lung cancer treatment takes step forward with immunotherapy and chemotherapy research | Healthing.ca

Targeted Therapies for Lung Cancer | American Lung Association

Elevating the Patient’s Voice in Lung Cancer Treatment

Faced with a frightening diagnosis, an onslaught of technical and medical information, and a variety of treatment options, people with lung cancer can often feel that their voice and needs get lost. However, a combination of self-advocacy and help from others can aid those diagnosed with lung – or any other – cancer make sure their voice is heard throughout treatment.  

While every person with cancer has different opinions and priorities following their diagnosis, a 2018 survey of more than 450 cancer patients found that they valued maintaining their independence (which included having strength and energy to care for themselves and having agency to make their own decisions) and communicating with their healthcare team in a way that is honest as well as understandable for someone who is not in the medical field.

Areas in which patients feel they don’t have a voice.

The survey found that many patients ranked honest conversations with their health care team among the most important priorities and felt that they had a lot of control in that area. Other factors, like whether their cancer would recur, end of life planning, and financial stressors brought on by their cancer, were also important, but were areas where patients felt that they had less control.  

In 2020, the Cancer Support Community updated its 2018 research with results from a survey of the more than 2,500 patients in their Cancer Experience Registry. They found that 1 in 3 patients felt they did not participate enough in their treatment decisions, and only 1 in 2 felt prepared to discuss treatment options with their doctor. Although many patients valued honest communication with their medical team, 1 in 3 did not tell medical professionals about a side effect or symptom. There were also lapses in how doctors and nurses communicated, as 4 in 10 respondents felt they did not have information about long-term side effects of treatment, and the same number felt unprepared to manage those side effects.

The 2020 survey by the Cancer Support Community also included a breakdown of responses from 299 lung cancer patients. Among those patients, 65% felt involved in making decisions about their treatment, but only 39% felt ready to discuss their treatment with a doctor.

What is self-advocacy?

One effective way for people with cancer to address some of the worries and difficulties they face is self-advocacy, which author and cancer survivor advocate Dr. Lynne Eldridge defines as patients taking an active role in their diagnosis and treatment plan. This includes understanding their diagnosis and asking about and considering the risks and benefits of different treatments. The Cancer Survivor’s Handbook from The National Coalition for Cancer Survivorship (NCCS) defines self-advocacy as patients gathering the skills and tools they need to assert themselves and communicate clearly about their care needs, so they have more control over the circumstances. The handbook emphasizes that it is important for patients to be involved in their treatment choice because each person uniquely understands what’s best for them, and which side effects they can tolerate.

Advantages and disadvantages of self-advocacy

By helping people to find their voice and empowering them to make sure it is heard, self-advocacy can improve communication. Dr. Eldridge points out that when patients direct their cancer care plan, it can help reduce some of their anxieties and fears. At least one study of women with advanced cancer found that self-advocacy improved their quality of life and reduced the burden of symptoms.

However, self-advocacy can also be difficult. Some people are not naturally assertive, or dislike confrontation, which may make them hesitant to advocate for themselves. Others may be shy or feel inarticulate and have trouble speaking up for themselves. In addition, many people are raised to be a “good patient” and not ask too many questions that seem to be challenging medical authority.

It seems startling that a third of cancer patients underreport their symptoms, but many may fear coming off as hypochondriacs, or reporting strong symptoms too quickly for fear that later symptoms may be dismissed. Other patients may not have the time or energy to research different treatment options.

How patients can advocate for themselves (if they want to)

Although self-advocacy may not be for everyone (and we will address solutions for those who do not feel comfortable with self-advocacy in the next section), here are some tips on self-advocacy for patients who do want to consider it. The NCCS breaks self-advocacy down into four key skills: information-seeking, communication, problem-solving and negotiation. Dr. Eldridge and the National Coalition for Cancer Survivorship also provide sequential steps for how to self-advocate, but it may be helpful to consider the steps in terms of those four functions as well.

Dr. Eldridge suggests that patients do the following when they are diagnosed:

1. Learn about their cancer. This includes reviewing any information that the medical team provides, doing online research from trusted resources (more on that below), or reaching out to a cancer patient group that knows the latest trends in cancer care.
2. Ask questions. It often takes a lot of clarifying questions to understand cancer as someone without a medical background. Appointments can be a crucial place to ask questions, and Dr. Eldridge suggests that patients not leave appointments until they feel that they understand the answer to every question they had. She also recommends keeping a list between appointments with less-urgent questions.
3. Get a second opinion (and a third if needed). Between 2011 and 2015, more new drugs for lung cancer treatment were approved than in the 40 years prior. It’s difficult for every doctor to keep up with every new treatment and clinical trial, so getting a second or third opinion from physicians who treat a lot of lung cancer patients, especially at a respected medical center, is important. In addition, if multiple medical professionals recommend the same type of treatment, it can provide patients with peace of mind about their treatment plan.
4. Make sure online medical advice is sound. Dr. Eldridge recommends sticking to websites that end in .org, .edu or .gov while researching a diagnosis, as these tend to be reliable organizations that are likely to publish valid information. She also recommends articles that are written by medical professionals in medical publications, and that clearly list their sources or provide places to look for more information.
5. Focus on making a good medical decision. There are a lot of options that are available, but it’s important for patients to remember to take their time (it’s okay to decide within a few days, or even weeks); talk to people who know them, know the treatment options, or have gone through similar experiences; and weigh the pros and cons of each treatment. Patients who do these things are usually able to make good medical decisions, and not ones that are rushed.
6. Approach insurance methodically. It’s important forpatients to read through their insurance policy carefully and consider negotiating with their insurance company on out-of-network care to keep costs down. They can make a case to their insurance if they believe their case should be an exception to a rule, and always call if they don’t understand a bill or see charges they don’t expect (sometimes there are mistakes in the billed amount).

Who else can make sure the patient’s voice is heard loud and clear?

If people with lung cancer feel daunted about advocating for themselves to make their voice heard, there are people and organizations that can help. Cancer groups are not only valuable sources of information, but they also provide resources like support groups, which offer patients the chance to talk to others who have or have had lung cancer.

The following organizations may prove useful for someone with a lung cancer diagnosis:

• Lung Cancer Foundation of America: Research and Awareness
• Lung Cancer Research Foundation
• Go2
• LUNGevity  

A doctor or hospital may also provide information about patient advocates or nurse navigators, who know a lot about the medical and financial context of the disease and are skilled at helping patients understand what their doctors are saying. A friend, loved one or caretaker can also be an effective advocate, as they know the patient well and can discuss with them how they would like their treatment to progress. Friends and family members who serve as advocates may not be medical experts like professional advocates, but they may have time to help with research, or be willing to ask tough questions of doctors if the patient is unwilling to or physically drained after treatment.

For patients, a combination of self-advocacy and turning to resources that are available can ensure that their voice and preferences are heard throughout their treatment process.

Resources

Amplifying the Patient Voice in Cancer Care, Cancer Support Community
Power to the Patient, Cancer Support CommunityVery Well Health
National Coalition for Cancer Care Survivorship
National Institute for Health

Improving Lung Cancer Screening Eligibility for Black Women

Every year, approximately 6,300 Black women in the United States die from lung cancer.¹ Lung cancer is one of the leading causes of cancer-related death among Black women. In fact, among Black women, lung cancer is as deadly as breast cancer: each year, a similar number of Black women die from lung cancer as they do from breast cancer.¹ Nearly half of Black women diagnosed with lung cancer are diagnosed at an advanced stage, when the prognosis is poor and 5-year overall survival is less than 10%.¹

Lung cancer screening with low-dose computed tomography (LDCT) is the most promising strategy to detect lung cancer early and reduce lung cancer mortality. Notably, screening with LDCT has been shown to significantly reduce lung cancer mortality by 20-33% in two large-scale randomized trials.^2,3 Currently, annual LDCT screening is recommended by the United States Preventive Services Task Force (USPSTF) for individuals aged 50 to 80 who have at least a 20-pack-year smoking history and who currently smoke or have quit smoking in the last 15 years.⁴ However, most Black women at high risk for lung cancer are currently ineligible for lung cancer screening. A previous study published in JAMA Oncology found that 60% of Black women diagnosed with lung cancer would have been ineligible for lung cancer screening under the current 2021 USPSTF guideline.⁵ The primary reason Black women with lung cancer were ineligible for lung cancer screening was because they had smoked fewer than 20 pack-years. These striking findings demonstrate the woeful inadequacy of the current USPSTF lung cancer screening guideline for Black women and highlight the need for efforts to improve lung cancer screening eligibility for this population.

To address evidence gaps for lung cancer screening and to improve access to early lung cancer detection for Black women, the INSPIRE (Investigating Screening in Populations with Increased Risk to Improve Equity) study, a prospective single-arm study, was launched. The INSPIRE study aims to screen 400 Black women aged 50-80 years old with any history of smoking for lung cancer in Boston and Chicago. Importantly, the study allows any Black women with a smoking history—regardless of the number of pack-years smoked or the number of years since quitting smoking (if they formerly smoked)—to get a lung cancer screening. By opening up opportunities for screening to women with lighter smoking histories and more remote smoking histories, the study aims to better understand the performance of LDCT screening in this population. The findings of the study will generate key data to inform future revisions to the USPSTF lung cancer screening guideline and, ultimately, improve access to early lung cancer detection for high-risk Black women.

The INSPIRE study is ongoing and actively recruiting. For anyone interested in participating in the study, fill out this form.

References:

1. “United States Cancer Statistics: Data Visualizations.” Center for Disease Control.
2. Reduced Lung-Cancer Mortality with Low-Dose Computed Tomographic Screening. New England Journal of Medicine 2011;365(5):395-409. DOI: 10.1056/NEJMoa1102873.
3. de Koning HJ, van der Aalst CM, de Jong PA, et al. Reduced Lung-Cancer Mortality with Volume CT Screening in a Randomized Trial. New England Journal of Medicine 2020;382(6):503-513. DOI: 10.1056/NEJMoa1911793.
4. Lung Cancer: Screening, Accessed 6/17/2021.
5. Potter AL, Yang C-FJ, Woolpert KM, Puttaraju T, Suzuki K, Palmer JR. Evaluating Eligibility of US Black Women Under USPSTF Lung Cancer Screening Guidelines. JAMA Oncology 2022;8(1):163-164. DOI: 10.1001/jamaoncol.2021.5790.