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.

Among Non-Smokers, Women Are Twice as Likely To Get Lung Cancer Than Men

Lung cancer, and its impact on women has received little attention until recently. It has long been known that there are several actors in Hollywood who have been diagnosed, but many are not willing to make their illness public for fear of the stigma. In the January 15^th, 2024, issue of People magazine, actress Susan Sullivan, the mother in the TV series, “Castle,” describes her experience with lung cancer diagnosis and treatment. Her candor and courage to discuss her personal journey is inspiring.

Historically, lung cancer was considered a man’s disease because cigarettes were first marketed to men, and many men were exposed to carcinogens in the workplace. However, the October 2023 study in the Journal of The American Medical Association (JAMA) Oncology edition compared how much lung cancer impacts men and found that in the last 50 years lung cancer in women between the ages of 35 and 54 is more common than it is among men in the same age group. While cancer rates for both women and men are decreasing, (the projected diagnoses were around 117,000 for men and 121,000 cases for women in 2023), lung cancer is still the number one cancer killer, and takes the lives of 1.5 times more women than breast cancer, which continues to shock most people.  

Causes of Lung Cancer in Women

What is still unclear from the JAMA study and other medical literature is why lung cancer seems to be impacting women at a slightly higher rate than men. Doctors and medical researchers have several theories that may explain this finding. Although fewer people and fewer women are smoking, smoking damages lung tissues and exposes smokers to carcinogens, and doctors believe that women may metabolize cigarette smoke differently than men do. Women who do not smoke are still susceptible to exposure to carcinogens from their environment and could explain the higher diagnosis rate. Family history and gene mutations can both play a role in developing lung cancer. Mutations in a gene called the EGFR gene can lead to lung cancer, even in people who have never smoked. Women, and particularly Asian women, are more likely to have mutations in the EGFR gene.

In a November 15, 2023, interview of Dr. Helena Yu by Julie Grisham on Memorial Sloan Kettering studies mutations in the EGFR gene at the Memorial Sloan Kettering Cancer Care Center website, she was quoted saying that as the number of smokers decreases, the number of lung cancer cases among nonsmokers will increase. But because many of the women who have never smoked don’t have the same risk factors as smokers, and because only 20% of lung cancer cases are found in non-smokers, women who do not smoke may not be recommended for screenings, or may have their cancer misdiagnosed as asthma, pneumonia or bronchitis, before it is diagnosed as cancer. This means that they lose critical time to treat the disease before it progresses.

Prevalence of Lung Cancer in Women

According to the Lung Cancer Research Foundation (LCRF), 1 in 17 women will develop lung cancer in their lifetimes. The LCRF also states that among nonsmokers, women are twice as likely as men to be diagnosed with lung cancer than men are. Lung Cancer is also responsible for more deaths than breast cancer, ovarian cancer and cervical cancer combined.

What Will Help Women with Lung Cancer?

A bill called the Women and Lung Cancer Research and Preventative Services Act. This bill would require the Department of Health and Human Services to conduct an interagency review of the status of women and lung cancer. The review must

• report on the status of existing research and current knowledge gaps.
• identify new opportunities for collaborative research to determine the causes of lung cancer and advance prevention, screening, diagnosis, and treatment; and
• provide recommendations for a national cancer screening strategy and public education campaign.

The bill was introduced in 2021, and as of early 2024 is still in the legislative process. In the meantime, women can be extra vigilant about their own health, especially if they lose weight suddenly and unexpectedly, have a cough that lasts more than six weeks, or are coughing up blood.

Dr. Yu also has two suggestions for helping women with lung cancer. She sees that stigmatizing lung cancer as a “smoker’s disease” is something that is harmful and needs to change.

“There is a stigma around lung cancer because of its connection to smoking. But anybody with lungs can get lung cancer. I don’t want patients to ever feel guilty or responsible for their cancer diagnosis,” Dr. Yu said in a Memorial Sloan Kettering post.

She also believes that education is key, both for breaking the stigma and for saving lives.

“I hope that by educating people about lung cancer and its causes, we can decrease the stigma while increasing awareness about early detection and new treatment options.”

Falcon Crest’s Susan Sullivan on Lung Cancer Surgery
People Magazine

Lung Cancer in Women and Nonsmokers: What To Know About Symptoms, Diagnosis, and Treatment
Memorial Sloan Kettering

The Burden of Lung Cancer in Women Compared With Men in the US
JAMA Study / October 2023

Higher rates of lung cancer in women are a mystery for researchers
CNN / October 2023

Lung Cancer Research Foundation

Why People with Lung Cancer Need Biomarker Testing – and Why They Aren’t Getting It

Over the past decade, there has been renewed hope for cancer treatment with the introduction of precision medicine. The practice of precision medicine is just as it sounds: using aspects of a patient’s tumor, often genomic changes in that tumor, to guide a specific therapeutic treatment plan. The application of precision medicine has led to better outcomes and longer survival for certain patients with advanced cancers, including metastatic non-small cell lung cancer (NSCLC).

In the U.S., there are several approved therapies that target known alterations in the gene alterations present in NSCLC. However, despite the availability of these therapies, data shows that nearly half of patients with advanced NSCLC don’t get their tumors assessed through genomic biomarker testing, which are tests that allow your healthcare team to better understand your cancer’s DNA. This means patients are not getting the important opportunity to try therapies that target their specific kind of cancer early in treatment — or ever.

Biomarker Testing Barriers

The use of comprehensive and high-quality biomarker testing at the time of diagnosis and early in the treatment journey can allow patients and their doctors to have better conversations about treatment options. But many people with NSCLC are not receiving a biomarker test, often due to operational and financial challenges that prevent them from accessing it.

From an operational standpoint, biomarker testing takes many steps that can occur at different institutions and even in different states, making continuity of care and the testing itself difficult. First, the interventional radiologist gets the tumor tissue sample, a pathologist makes the diagnosis slides, and the oncologist orders the test. Then, a laboratory does the testing and sends the results, and ultimately, the oncologist and patient determine a treatment plan based on the findings.

On the financial side, despite the decreasing cost of genomic testing in recent years, testing prices remain high, and out-of-pocket costs are a barrier for many. Insurance coverage of comprehensive biomarker testing is variable and often based on metrics that don’t reflect the comprehensiveness of tests (the most important part) — only the number of biomarkers tested.

Moving Forward

As a molecular pathologist, an employee of an oncology company advancing precision medicines, and the son of a father whom we lost too soon to cancer, I am amazed by the progress we have made as a field in oncology, thanks to targeted therapies and the diagnostic testing that informs their use. And we as physicians, patients, and caregivers must strive to make sure that financial and operational barriers don’t stand in the way of accessing life-enhancing medicine.

People living with lung cancer, caregivers, and advocacy organizations can continue to push for broader insurance coverage policies to allow for more timely access to biomarker testing and ensure appropriate, effective therapies are prescribed. Oncologists and pathologists can work to understand which diagnostic test is most appropriate for their patients, and patients can elevate these conversations by asking whether the testing for their tumor is comprehensive and relevant to NSCLC.

Finally, from an institutional perspective, we must build systems and processes to solve operational and financial problems and get patients tested with the right test at the right time. This is what we’re trying to do at Loxo@Lilly, the oncology unit of Eli Lilly and Company, an institution that is working to open the door for better treatment of NSCLC with our Tempus Sponsored Testing Program, a program that offers no-cost, comprehensive next-generation sequencing (NGS) for eligible advanced NSCLC patients.
To hear more about overcoming barriers to biomarker testing, tune into Have You Heard of Biomarker Testing? of the Backstage @ Upstage podcast.

Guest Author Bio:

Anthony Sireci, M.D. is a board-certified clinical pathologist and a practicing molecular pathologist. Prior to joining Loxo, he was an assistant professor of pathology and cell biology at Columbia University and a medical director in the Laboratory of Personalized Genomic Medicine at Columbia Medical Center. He is an active member of the Association for Molecular Pathology (AMP), where he serves as the vice chair for new codes and pricing on the Economic Affairs Committee. He is also a member of the Pathology Coding Caucus in the College of American Pathologists (CAP) and the Molecular Pathology Advisory Group in the American Medical Association (AMA). Dr. Sireci received a B.A. in chemistry from New York University and an M.D. from the Johns Hopkins University School of Medicine. He completed his residency training in Clinical Pathology at the New York Presbyterian Hospital-Columbia University Medical Center, where he also served as chief resident. During this residency, he also received an MSc in biostatistics from the Mailman School of Public Health at Columbia.

Doctors Enable Patients’ Bodies to Fight Lung Cancer Via Immunotherapy

Boosting the immune system can be an important part of lung cancer treatment, so today let’s dive into how the immune system works, and how doctors strengthen it to help treat lung cancer.

The two types of immune responses

There are two types of immune responses, the innate immune system and adaptive immune system, and they respond to germs and viruses in different ways and have different goals. Your innate immune system is made up of your skin and the mucous membranes or moist areas of your body (such as your mouth, eyes and nose). It feels gross when you sweat or sneeze, but from an immune system perspective it’s very effective at keeping germs and viruses from entering your body. Your innate immune system acts as the first line of defense against germs and viruses and responds to them within a few hours. It can prevent germs and viruses from entering the body, but if they do enter it cannot stop them from spreading, it can only try to flush them out. 

The adaptive immune response works more to stop bacteria and viruses once they are already in the body and cannot be flushed out by the innate immune system. The adaptive immune system works through a special type of white blood cells called scavenger cells, which can enclose germs and digest them. The scavenger cells travel through veins and arteries, and once they sense that a cell is a foreign body, they activate enzymes that set off a chain reaction. The first scavenger cell marks the invading cell and calls other scavenger cells in the bloodstream to neutralize the harmful invader. If bacteria or viruses do manage to affect the cells of the body, then we have natural killer cells that identify and destroy cells that are infected or likely to become a tumor.

The adaptive immune system is slower than the innate immune system because it takes so much time to identify which of the millions of cells in our body are germs. However, an adaptive immune response means that the body will “remember” that harmful organism so the body can respond faster the next time that germ or virus tries to enter.

Important components of the adaptive immune system

The adaptive immune system is made up of three types of cells: T lymphocytes (also called T cells), B lymphocytes (also called B cells) and antibodies. The strongest defense in this immune response comes from T cells. They are made in the bone marrow and activate other cells to start the immune response. They can detect and destroy cells that have been affected by viruses, and “remember” previous cells that the body has fought off.

B cells are also found in the tissue between the body’s cells, while antibodies are found in the blood and other bodily fluids. Antibodies detect germs and viruses and attach to them, to prevent them from attaching to the body. Antibodies also attract other immune system cells to help with the adaptive immune response. 

How can the immune system be used to treat lung cancer?

Immunotherapy is a treatment that uses the cells of our immune system to treat lung cancer. There are three major types of immunotherapy treatments.

The first treatment type is called immune checkpoint inhibitors. In a normal immune response, immune checkpoints work with T cells to make sure the body’s immune response (which can cause inflammation and other symptoms of being sick) isn’t too strong or damaging to healthy cells. It is like an off switch for T cells. However, sometimes with cancer, the immune checkpoint proteins send that signal at the wrong time and prevent T cells from destroying the cancer cells. Checkpoint inhibitors are drugs that block these malfunctioning checkpoint proteins and allow the T lymphocytes to kill cancer cells.

The second treatment option is called therapeutic vaccines. Many of the vaccines that we think of are to activate the adaptive immune system and prevent us from getting sick. Therapeutic vaccines use the sick person’s immune system to fight diseases that are already in the body. This type of immune therapy uses lab intervention to train white blood cells (T cells) to attack cancer cells more actively. Doctors take blood from their patients, expose the white blood cells to proteins that are often found on tumors, and then infuse those cells back into the patient’s blood. The modified T cells attack proteins that are only found in cancer cells and very rarely found in other cells.

The third immune-oncology approach, adoptive T Cell therapies, involves taking a patient’s cells, multiplying them, and reinfusing them to make them better able to fight cancer. There are two types of adoptive T cell therapies. The first is called tumor-infiltrating lymphocytes because these T cells go into a tumor instead of remaining in the bloodstream. In this treatment, doctors take blood from the patient, test the T cells in a lab to see which ones best recognize tumor cells and then multiply those successful lymphocytes and infuse them back into your bloodstream.

The other adoptive T-Cell therapy is called CAR T-Cell therapy, and it also works using the T cells in your bloodstream. “CAR” stands for chimeric antigen receptor. CARs allow the T cells to attach to specific proteins on the surface of the cancer cells, improving their ability to attack the cancer cells. CAR T-Cell Therapy works by changing your T cells so that they produce more chimeric antigen receptor proteins.

People with lung cancer should discuss with their oncologist which treatment options, including immunotherapies, are best for their specific type and stage of lung cancer. For more general information on the costs and benefits of immunotherapy, and where treatments may be headed next.

See
Upstage Lung Cancer’s podcast conversation with Dr. David Barbie

Sources
The innate and adaptive immune systems | NIH Library of Medicine
Immune Checkpoint Inhibitors | NCI
Lung Cancer Immunotherapy | American Lung Association

Medical Mistrust Can Have Serious Impact on Lung Cancer Outcomes

When faced with a frightening diagnosis like lung cancer, many people turn to and lean on their doctors for advice and support. But imagine facing such a diagnosis if you did not trust your doctor or feel that they supported you. This is a reality for many people who do not have faith in the medical system, which experts call “medical mistrust.”

What is medical mistrust?  

Laura Bogart, a doctor who has studied and written about medical mistrust, defines it as “an absence of trust that health care providers and organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best possible results.”

Medical mistrust is often connected to race. Specifically, many Black Americans mistrust the medical system because of how medical professionals and systems mistreated their ancestors. Historically, the Eugenics Movement and racist beliefs led to the involuntary sterilization of women of color in the United States in the twentieth century. Six hundred African-American men were chosen for the “Tuskegee Study of Untreated Syphilis in the Negro Male,” launched during the Great Depression. They were told they had “bad blood,” and many underwent painful spinal taps and other medical procedures. Of those 600 men, 399 had syphilis. Even after the U.S. Public Health Service in 1945 approved penicillin to treat the disease, the study that began in 1932 would continue until 1972 without the men being treated – all in the name of medical research. The study’s participants experienced severe health problems including blindness, mental impairment and death. Unfortunately, members of the Black community continue to face problems today. For example, studies show that Black patients in America are still undertreated for pain compared to white patients. It’s not surprising that there is mistrust when and if a person of color seeks medical attention. 

It’s important to note that the term, “medical mistrust” is problematic because it blames the African American community for their lack of trust in the medical system. Calling it medical mistrust, “puts [the blame] on the community when in fact the community has been let down by the medical system and by providers who continue to discriminate,” says Kimlin Tam Ashing, the director of the Center of Community Alliance for Research and Education at the City of Hope cancer center. However, the term is still widely used in medical literature.

How does medical mistrust factor into lung cancer treatment?

Lung cancer screenings are one of the most effective tools to reduce lung cancer mortality rates, by catching the disease in the early stages. However, The American Cancer Society 2022 “State of Lung Cancer” report shows that only 5.8% of all eligible Americans have been screened for lung cancer, and some states have screening rates as low as 1%. A 2022 study of lung cancer and medical mistrust suggested that lung cancer screenings may be more successful if medical professionals address the causes of medical mistrust.  

The study used focus groups and interviews to explore how medical treatment could be made more equitable. In the interviews, researchers found that many people did not know much about lung cancer screening, but took the idea seriously once it was presented.  

One participant in the interviews said, “You hear about getting tested for colon cancer and other cancers, but nothing about lung cancer.”

After learning about lung cancer screenings, some participants were confused and frustrated that they had not heard of it from their primary care doctors, even if they had been with them for a long time.

Participants also said that they were more hesitant to seek screenings or medical care because they had previously been misdiagnosed, or had doctors dismiss serious symptoms that they were experiencing. And, if patients had not had a negative experience with the healthcare system themselves, many felt that they had vicarious negative experience because of the way they had seen other people treated.

Other sources suggest that healthcare providers often dismiss symptoms of lung cancer, leading to misdiagnoses and delays in treatment. Delays can mean missing the ability to treat the cancer when it is still in the early stages and allowing the disease to progress, which affects prognosis. Ultimately, the policies and practices that uphold structural and systemic racism change the disease risk (e.g., smoking patterns), as well as resource allocation, and access to health care services such as screening. Ultimately, these overt or covert policies lead to people of color not being included in the highest levels of healthcare opportunities and treatments.

What can medical professionals do about medical mistrust?

Although medical mistrust is pervasive, and its consequences are serious, there are some things that doctors can do to address these barriers.  Research on medical mistrust shows that in general, people who mistrust the medical system as an institution may be more trusting of healthcare providers as individuals. Indeed, many of the proposed remedies for medical mistrust happen at the physician level. One solution is for physicians to speak to patients from a place of empathy, rather than simply confronting them with information. Some programs that allow patients and medical practitioners to get to know each other through conversations outside of the exam room have also had success in revealing common interests and emphasizing humanity, which helped combat medical mistrust.

For more information on medical mistrust and lung cancer, see Upstage Lung Cancer’s Podcast, which features an interview with Raymond Osarogiagbon, MD, FACP, who has worked extensively with poor, rural black communities about lung cancer, and in Memphis, Tennessee, an area with a disproportionately high lung cancer rate.

Sources:

Understanding and Ameliorating Medical Mistrust Among Black Americans
Commonwealth Fund

Medical Mistrust Among Patients & the Impact on Lung Cancer
Oncology Times (lww.com)

Misdiagnosed Lung Cancer: Factors & Delayed Diagnosis Risks
verywellhealth.com

Access to Healthcare in Rural and Black Communities
Upstage Lung Cancer podcast

Making Strides to Take Advantage of Lung Cancer Screening 

In previous Backstage @ Upstage podcasts, Jordan Rich and Hildy have been joined by guests to discuss the importance of low dose CT scans to detect lung cancer early. In a recent podcast, the focus was on “failing grades” for efforts to help those who are eligible for low dose screening take advantage of the opportunity. The Lung Cancer Screening Trial notes that if eligible individuals were to receive low dose screening, we would reduce lung cancer mortality by an estimated 20% to 33% for high-risk individuals. Approximately 10,000 to 20,000 additional lives could be saved each year!

Clearly early detection is critical in being able to diagnose and then maintain and extend the lives of people with lung cancer. It is shocking that of all those eligible nationally, only 3% receive low dose CT screening – clearly a failing grade! Here in Massachusetts, we’re leading the pack, but the percentage of people getting scans is only 17%. We all agree that we must do better.

Guests on our recent Backstage @ Upstage podcast, Dr Jacob Sands of Dana Farber and Dr. Andrea McKee of Lahey Hospital and Medical Center, discuss the origins of “Rescue Lung, Rescue Life,” a program to address some of the barriers to screening. The goal of this program is to broaden access to lung cancer screening with no cost to patients. Dr McKee started this program at her own medical center and was able to make this program available throughout the United States. 

The Rescue Lung Society is a multidisciplinary, not-for-profit, caregiver-driven voluntary organization providing team-based solutions to empower lung health and reduce health disparities through prevention and early detection of lung cancer. It was established to eliminate barriers to screening adoption through public/provider education, advocacy, research, and the development of novel tools which streamline high quality program implementation and management.

The mission of the Rescue Lung Society is to save lives of people at risk for lung cancer through high-quality CT lung screening today and pioneer early detection innovations tomorrow. For decades lung cancer has been the number one cancer killer in the United States, leading to the deaths of more men and women than breast, colon, and prostate cancers combined. The good news is that with CT lung screening we finally have a proven method to find lung cancer early, when it is curable.

Please visit Rescue Lung Society for more information on the society mission and vision and the Board of Directors who founded the Society.

Our Backstage @ Upstage podcast is an important conversation about what opportunities we can create to help save lives. Years ago, lung cancer was seen as a death sentence. Now, lung cancer screening can detect the disease early, when lives can be saved and extended.