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.

lung cancer research

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.  

lung cancer self advocacy

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:

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

Black Women Study Upstage Lung Cancer
Students Natalie Wing, Alexandra Potter and Andrea Nurko (left to right) pose with INSPIRE study participant Krystal Ogletree

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 15th, 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.

women have higher rates of developing lung cancer

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, MD, clinical pathologist

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. 

closeup of immune cells attacking a cancer cell

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.”

black mother and daughter in waiting room

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.

Scanxiety and Mental Health:
Prioritizing Emotional Well-Being During Lung Cancer Imaging

What Is Scanxiety?

Prioritizing Emotional Well-Being During Lung Cancer Imaging

The anxiety, fear, and apprehension surrounding scans is a condition known as scanxiety. Scanxiety is common among cancer patients, as medical imaging devices like MRIs, ultrasounds, X-rays, and CT/CAT scans are a major part of treatment.

A study of 103 lung cancer patients revealed that 83% felt some level of scan-associated distress. They also reported that their scanxiety directly impacted their quality of life.

A little trivia: “Scanxiety” was coined by a cancer patient who wrote about his experience in TIME Magazine in 2011. The term has been growing in popularity since.

What Causes Scanxiety?

Whether the scans are for diagnosing, monitoring treatment, or checking for recurrence, the emotions associated with these scans can be challenging for cancer patients and survivors. 

The anticipation before a scan, undergoing the scan itself, waiting for scan results, and even thoughts relating to scans (e.g., possible diagnosis or recurrence of cancer) can cause scanxiety. The fear and anxiety can become overwhelming, severely impacting a person’s quality of life.

In some cases, the machines themselves may be a cause of concern. X-ray, CT scanners, and nuclear imaging machines all use ionizing radiation. These high-energy particles and wavelengths get through deep into the skin tissue to reveal what’s inside the body. Although the technology is improving, there is still a risk of regular scans causing cancer at a later date.

Understanding Lung Cancer Imaging

Before diving into scanxiety, it’s essential to understand what scans are used for in lung cancer diagnosis and treatment. The most common scans used for lung cancer are X-rays, MRI, CT scans, and PET scans. These scans allow doctors to get a detailed look at the lungs and surrounding areas to identify abnormalities and monitor the progression of the disease.

While imaging tests are essential for the early detection, diagnosing, and treating lung cancer, they can also cause stress and anxiety for the individuals undergoing them. Patients can often feel overwhelmed, especially if they have never undergone imaging tests. It is crucial to understand the risks and benefits of imaging tests and to prepare for them appropriately.

Impact of Scanxiety During Lung Cancer Imaging

Scanxiety can have a significant impact on the emotional well-being of lung cancer patients. While the symptoms can differ from person to person, a few are more common than others. 

Physical Symptoms of Scanxiety

Some common physical scanxiety symptoms include:

  • Increased heart rate
  • Sweating
  • Shaking
  • Nausea
  • Sleep disturbances

Psychological Symptoms of Scanxiety

Common psychological symptoms of scanxiety that patients can experience include:

  • Distress
  • Fear
  • Sadness
  • Anxiety
  • Depression
  • Panic 
  • Loss of control 

These emotional symptoms can be as debilitating as the physical ones, requiring the same care and attention. Though for some, these symptoms can be temporary and typically go away after the test is completed.

8 Tips for Managing Emotional Well-Being During Lung Cancer Imaging

While scanxiety is a common experience, it is possible to manage its symptoms. Every person handles stress differently, but here are some practical coping strategies that may help improve your emotional well-being.

1. Pre-Imaging Preparation

Learn as much as possible about the imaging test, including what to expect and how to prepare. You can use credible online sites like Mayo Clinic or contact your healthcare provider. Knowing what to expect from your scan can help reduce anxiety and stress.

2. Mindfulness and Relaxation Techniques 

These techniques help calm the mind and reduce feelings of anxiety. Here are some examples of mindfulness and relaxation techniques:

  • Deep breathing exercises are a simple and effective way to reduce anxiety and stress. It requires taking slow, deep breaths through the nose and mouth. It’s important to focus on the breath. Count to 4 as you inhale, hold for 7 seconds, and exhale for 8 seconds.
  • Meditation is a practice that includes focusing on a particular object or thought. It can help to reduce stress and promote relaxation. There are different types of meditation, but a simple way to get started is by finding a peaceful and comfortable place to sit and focus on your breath.
  • Progressive muscle relaxation is a technique that includes contracting and relaxing different muscles in the body. It can help decrease muscle tension and promote relaxation. To practice progressive muscle relaxation, start by tensing and releasing the muscles in your feet and work up to your head.

3. Distraction Techniques 

Another effective way to manage scanxiety is through distraction techniques. Distractions help divert attention from anxious thoughts and focus on something else. Here are some examples of distraction techniques that can help:

  • Listening to music or podcasts can be a great way to distract your mind from your anxious thoughts. Choose music or a podcast that you enjoy, and relax.
  • Reading or watching movies can also be an effective way to distract your mind. Choose a book or movie that you find enjoyable or relaxing.
  • Engaging in hobbies or creative activities can be a great way to distract your mind and promote relaxation. Some examples of hobbies or creative activities include journaling, painting, drawing, or cooking.

4. Self-Care Strategies 

Take care of yourself during this challenging time by eating healthy food, exercising regularly, and getting enough rest. 

A recent study on the connection between exercise and cancer-related mortality found a 40%–50% reduction in patients who exercised often. Exercise also promotes mental well-being. It decreases cortisol (a hormone that increases stress) and boosts endorphins (a hormone that blocks pain and increases feelings of pleasure). 

Like exercise, diet is crucial for anxiety and related symptoms. 

Chemicals like caffeine can make people uneasy and jittery if they consume too much. Junk and processed foods are difficult to digest and have ingredients that cause anxiety and unhealthy cravings. 

Maintaining a healthy diet may also help the treatment be more effective. Swapping junk food with healthy food allows the body to worry about one less thing on the road to recovery.

5. Communicate With Friends and Family

Family and friends can make the best support system. Talking to familiar faces is often a lot easier than with people we are not close to. This is helpful because you wouldn’t need to introduce yourself to a new group of people. 

You can feel more comfortable opening up because friends and family already know you. Thus, they can give better support.

6. Communicate With Healthcare Providers 

Talk to your healthcare providers about your concerns, worries, and fears. They may be able to give additional information or support.

7. Join a Support Group

Joining a support group can provide a sense of community and support during this challenging time. Being surrounded by others with similar experiences can help transform the trauma of cancer and act as a reminder that you are not alone.

8. Post-Imaging Follow-up

Schedule a follow-up appointment with your healthcare provider to discuss the test results. This can help provide closure and reduce anxiety.

Scanxiety and Mental Health

Managing emotional well-being during lung cancer imaging is essential for the patient and their loved ones. While scanxiety is a common experience, there are many coping strategies and tips that can help manage these emotions. 

Remember that the results of scans can provide critical information about lung cancer, which can help guide treatment decisions. Waiting for test results can be challenging, but staying positive and focused on the next steps in your treatment plan is essential.

Seek support during this challenging time. Whether through friends and family, healthcare providers, or support groups, having a solid support network can provide comfort and reduce stress.

Do more than just survive. Thrive. With the proper management and support, you can navigate lung cancer imaging with greater ease and comfort.

Women And Lung Cancer: A Special Focus On Asian Women

How common is lung cancer in women? 

Lung cancer kills more women than any other cancer. “This ‘hidden’ women’s cancer is the least federally funded cancer, in terms of research dollars per death of all the major cancers. It is one of the only cancers where patients are routinely blamed as responsible for their condition.”

According to The American Lung Association, although the overall number of lung cancer cases has across men and women has been relatively steady, the number of women who have been diagnosed with lung cancer has increased by 84%, over the last 42 years. In contrast, the number of men diagnosed with lung cancer has dropped by 36%.  

Every day 171 women die of lung cancer, and it is the leading cause of cancer death among women. According to a 2021 study published in Contemporary Oncology, lung cancer is the second most common cancer in both men and women, just behind breast cancer for women. Unfortunately, lung cancer receives the least federal funding. Although breast cancer is much more common, it is also much more survivable. The Lung Cancer Research Foundation says that lung cancer kills 1.5 times as many women as breast cancer.

Asian women lung cancer

The likelihood of developing lung cancer is particularly high among Asian women, even those who have never smoked. This population is twice as likely to develop lung cancer as than other women who do not smoke. An interview about lung cancer studies on the female Asian population in the Bay Area cited 18 publications and four funded studies that showed that more than 50% of Asian American women who developed lung cancer did not smoke. Complicating matters is the fact that traditional research studies tend to lump Asian women together, when really, they include women from 20 different countries. If you disaggregate the data and look at ethnic groups, the statistics can be even more alarming — the rate of lung cancer is as high as 80% among Chinese women, for example. Detecting the disease in Asian women who do not smoke or seldom smoke is also difficult because they are also not eligible for lung cancer screenings. 

How does lung cancer differ in women and men?

Lung adenocarcinoma is the most common type of lung cancer for both men and women, according to the Lung Cancer Research Foundation. But there are also unique ways in which the disease impacts women. According to a 2021 study published in Frontiers in Medicine, women are more likely to be diagnosed earlier, and to be diagnosed even if they are not smokers. Up to 50% of women with adenocarcinoma do not smoke.

The higher diagnosis rate, despite lower smoking rates, indicates that the carcinogens in tobacco may impact women more than men. The Frontiers in Medicine study also found that 64% of the deaths due to secondhand smoke were in women. The same study also found that air pollution is also likely to cause lung cancer.

The same study continues and states that many medical professionals consider lung adenocarcinoma to be a different disease in women than in men. The presence and absence of estrogen can impact how lung cancer plays out, which not only makes the disease different for men vs. women, it also means that women who have not yet reached menopause respond much differently to adenocarcinoma than women after menopause do.

According to the Frontiers in Medicine study, women who were diagnosed with lung cancer before menopause were usually diagnosed in more advanced stages, had more aggressive tumors and did not survive as often as men and women who were diagnosed after menopause.

What can medical professionals do to treat women with lung cancer?

The good news is that more than one clinical trial has suggested that lung cancer screenings are more helpful for women, according to a 2022 study published in The Annals of Thoracic Surgery. And about 14.5 million Americans qualify for CT scan screenings, according to a 2021 blog post by Penn Medicine.

According to the blog post, people who may qualify for screenings include:

   •  Former smokers
   •  Smokers
   •  Adults with exposure to radon gas
   •  Adults with exposure to asbestos
   •  People with exposure to air pollution
   •  People who are exposed to secondhand smoke.

Researchers in the Frontiers study had several suggestions for women-focused cancer research going forward. They suggested that researchers focus on factors other than smoking that can cause lung cancer, since the number of female nonsmokers who are diagnosed with the disease is high. They also suggest that because women are impacted differently than men, studies should have as many women as possible, and include women who are both before and after menopause. Their third recommendation was to suggest that doctors study the impact of estrogen on lung cancer in more detail.


Sources

GO2-Foundation_women-and-lung-cancer_2022.pdf | GO2 Foundation
Lung Cancer Fact Sheet | American Lung Association
Epidemiology of lung cancer (termedia.pl)
An Overview of Lung Cancer in Women and the Impact of Estrogen in Lung Carcinogenesis and Lung Cancer Treatment | Frontiers
Lung Cancer in Women | ScienceDirect
What Women Need to Know About Lung Cancer | Penn Medicine
Addressing High Lung Cancer Rates Among Female Asian Non-Smokers  | UCSF Helen Diller Family Comprehensive Cancer 

“Tienes cáncer de pulmón”
(You Have Lung Cancer)

“You have lung cancer” is difficult to hear in any language. For Hispanic Americans, this frightening news can be compounded by a number of barriers that make it hard to access high quality lung cancer information and care. (We also address this topic in our Backstage at Upstage podcast “¿Está el doctor?”.)

To begin with, the Hispanic population, which makes up approximately 17-18% of the US population, is not a singular group but includes people who trace their heritage to more than 20 Spanish speaking countries. Each of these countries has its own traditions, beliefs and cultural factors that can lead to barriers in access and affect how a person approaches health issues and medical care. For example, among Hispanic Americans there is a strong sense of family obligation and people often don’t want to burden their families with disease or health concerns. Family attitudes may also impact whether someone even goes to a doctor or seeks a diagnosis in the first place. A belief in folk healing as well as religiosity and spirituality among many Hispanic Americans are also important factors. In Mexican culture, for example, there is a strong conviction that life is in God’s hands and that natural remedies using herbs are the most effective way to heal illness.

Close knit hispanic family
Hispanic Americans have a strong sense of family obligation and people often don’t want to burden their families with disease or health concerns.

Language is often another barrier to excellent medical care. Federal law requires hospitals to provide linguistic services for people who only speak Spanish or who have limited English proficiency. However, in practice many patients find themselves in situations without qualified medical interpreters and may rely on family members for interpretation. Poor communication between patients and providers can contribute to errors, compliance issues and disparities in outcomes for Hispanic Americans. Or cultural attitudes may limit how much information the family member even shares with the patient. Even with a qualified medical interpreter available, it can be difficult for a patient to trust a third party stranger in the room, and the quality of interpretations can vary. In addition, there may be less opportunity for the provider to ask non medical questions that might help build rapport with the patient and provide additional insights into the patient’s situation.

Compounding these cultural and language factors are high poverty and low literacy levels – approximately 24% of Hispanics in America live below the poverty line and 35% have less than a high school education, which can affect their health literacy. Hispanic adults are less likely than other Americans to have health insurance and to receive preventative medical care, which can make them less likely to receive an early diagnosis, when cancer is more easily treated or cured. A further complication exists for those without permanent legal residence. Fears of deportation can lead to reluctance to seek help in the first place.

The good news is that there is growing awareness that more needs to be done and interest in addressing these barriers. Medical schools provide training in which students learn to ask questions that cover all aspects of meeting with patients, including taking their social history for information about occupation, marital status, living arrangements, hobbies, pets, and use of substances including tobacco and alcohol. Medical students also receive training about the social determinants of health, which are non-medical factors that can influence health outcomes. Social determinants of health include income and social protection; education; unemployment and job insecurity; working life conditions; food insecurity; housing; basic amenities and the environment; early childhood development; social inclusion and non-discrimination; structural conflict; and access to affordable health services of decent quality.

Some cancer centers have Spanish language networks and support groups for patients. In addition, there are Spanish language resources available that can help Hispanic patients and caregivers access information about lung cancer to better understand their disease and the treatment options available.

The following government, medical and patient organizations have Spanish-language lung cancer resources and information available; those that offer Spanish-language hotlines are noted with “linea telefonica.”

Behind the Scenes:
The Experience of Being A Caregiver

Although being the caregiver for someone with lung cancer is a very different experience than having the disease, it gives caregivers an intimate look into having lung cancer and the challenges that come with it. There are many lessons to be learned. So, I approached a couple of caregivers and asked them to talk about their experiences and if they had any advice to share with others who are going through the same thing.

lung cancer care giver
Caregivers play such an important role in providing support and comport to the patient. Don’t be afraid to reach out for help.

I spoke with Robin DiPaolo, who has been the caretaker for someone with lung cancer not once, but twice. The first time, it was for her mother, Hildy Grossman, the founder of Upstage Lung Cancer. Hildy discovered her lung cancer at an early stage, by accident, and was able to treat it only with surgery. Robin works as a hairdresser, and her mother’s diagnosis was her first exposure to cancer from someone close, in her family and with someone she loves. She said she had had a number of clients who went through a cancer diagnosis, as well as some who were serving as a caretaker to someone in the family.

Looking back, Robin explained to me how important it is to take a minute to process your emotion when you first hear about a cancer diagnosis. Clearly, that’s true for the patient but also true for those in their support system. For Robin, caring for her mother proved difficult because she lives 1,000 miles away, in a different state than her mom.

“That was hard,” Robin said, adding that “the distance is horrible,” and it was difficult not to be able to be with her for every doctor’s appointment. Although her mother’s treatment was successful, Robin pointed out that it is still difficult for her mother to live the rest of her life with the concern that lung cancer could come back.

Five years later, Robin once again found herself serving as caregiver to a good friend with advanced lung cancer who unfortunately lost his battle. His symptoms were initially misdiagnosed as a sinus infection but turned out to be a grapefruit-sized tumor that spread to his lungs. She wanted to help. She quickly discovered that there is “a lot of detail in caring for someone who has cancer.” Many of Robin’s caretaking efforts centered around helping with her friend’s treatment. She attended doctor’s appointments with him, took notes and was there to help her friend remember all of his questions. She took care of him after surgery, stayed with him as part of a care team, helped with managing medications, monitored his pain levels and eventually decided when it was time to call hospice. She also helped with the emotional aspects of the disease. She tried to help by trying to keep a positive outlook and by making him laugh.

Robin said a frustrating part of being a caregiver revolved around the difficulty of finding information. For example, she said she had to become a detective while serving as her friend’s advocate in navigating insurance issues and researching the best diets for cancer patients. She added, “There just isn’t enough information for caregivers. I wanted there to be a packet of useful information to take home from the hospital when a loved one first got diagnosed with lung cancer”, she said.

Mala Shah mentioned additional issues. She served as a caretaker for her husband who had an
inoperable neuroendocrine tumor. At first, she said that her husband “didn’t want anyone to take care of him” because it felt too much like acknowledging the disease. To avoid additional stress, Mala focused on taking care of things around the house, and having water bottles and tissues placed throughout the car and house to help her husband with intense bouts of coughing. She also served as the notetaker during her husband’s appointments.

As the disease progressed, and her husband transitioned to the hospital for much of the last six weeks of his life, caregiving took a different form by “being in the hospital 24/7, unless someone else was with him.” She continued taking notes in doctor visits as well as other medical staff to help create a summary of his recent treatments for anyone new who came to provide care. She said her key effort was in supporting his medical decisions, including adding massage and acupuncture as part of his treatment, and continue them when he realized how much they helped him feel comfortable.

Another person I spoke with said she had been caring for her father-in-law when he was diagnosed and while he was living with her and her husband. She said, from the start, it was a difficult diagnosis. “I was the first to hear from the ER doctor.” She called an ambulance when he was struggling to breathe. “It gutted me when I heard his diagnosis,” she said. “My husband was traveling for work at the time, so I was the one who had to tell him the bad news.” After that, she became the medical proxy for her father-in-law, taking responsibility for most aspects of his care. She said, “I was well versed, previously, in navigating the medical care of a loved one. Physically, I didn’t mind doing whatever was needed,” she said. “I was happy, actually, because I loved my father-in-law, and he loved me very much. But I struggled with navigating emotional issues that came up, including a strained relationship between my husband and his father. My husband resented his dad for adding more to the burden of our family life with three kids, and for making me, his wife, take care of him.” She explained that, “I come from a culture of unconditionally taking care of your elders and being there for them.” She agreed with her husband that her father-in-law could also be difficult because of his approach to treatment. “He was pretty headstrong and just didn’t really listen to doctors and the advice he was given. He did what he wanted,” she said. “That was the most difficult aspect of caring for him. “I felt I was always trying to get him to see what was best for him, but he wanted to do things his way.”

All three caregivers had advice for anyone who finds themselves serving as a caregiver to someone
with lung cancer. Here are some suggestions:

  1. Order an excellent free book for caregivers, “Lung Cancer Choices” from Caring Ambassadors,
  2. Keep a journal and document everything related to the illness.
  3. Find information to look for clinical trials at the American Lung Association: Find a Trial.
    (see )
  4. Find lung cancer organizations that provide direct support for patients and their families (see LUNGevity, GO2 Foundation for Lung Cancer, The American Lung Association.
  5. Gather other supports for yourself as you try to help your loved one. Being alone with the care, responsibilities and emotional challenges can be overwhelming without support for yourself. You’ll need and want people who can care for you. Don’t be afraid to ask for help.
  6. If you aren’t able, try to find someone who can help advocate for the patient in medical situations. That might include other family members, friends or clergy. If you feel treatment suggestions aren’t the best, having an advocate accompany you to visits can be a big help.
  7. Respect the dignity of the patient as you offer your suggestions. Patients and caregivers both need a voice. Be aware that having a voice is important and being able to listen is important.
  8. Consider discussing palliative care and hospice with the doctor and loved ones if the time comes. While this can be the most difficult part of caring for someone, as well as for yourself, it can provide care and comfort to all.

As Robin said, caring for someone with a serious illness like lung cancer “changes you. You’re never
going to be the same.” As she reflected, “my caregiving experiences, both positive and negative,
taught me about resilience and being strong.” She hopes that she is able to pass that on.

Transforming the Trauma of Cancer and Its Aftermath

I was 32 and a brand-new mom when I was diagnosed with lung cancer. At the time, it was a complete shock and seemed so unexpected. How could I, an otherwise healthy young woman, with no significant tobacco history, have lung cancer? 

Susan Smidley Resilient Souls
Susan Smedley (right) with her adult children

Over time, however, I began to understand how much of what I had experienced in my life, up until that point, had set the stage for coping with a major health crisis like lung cancer. Because I had an interest in alternative ways to help with healing, I followed my instincts and explored acupuncture, Chinese herbs, massage, therapy and reiki to help support a deeper healing. I learned more and explored mind/body connections through the work of pioneer Louise Hay and her book, “Heal Your Life”, where, according to her mind/body theory, “Unexpressed grief and depression can get stuck in the lungs.” I thought about this deeply. With this intense focus on mind/body healing, I  felt in my heart that all the trauma and abuse I had experienced had weakened my body and devastated my health. While shocking, my diagnosis made sense as viewed through a mind/body lens. How thought, beliefs and perspective can help to influence the body for the better or for worse.

I have learned a great deal about focusing on wellness, despite cancer and traumatic circumstances. I have worked for years as a patient advocate, and collaborated with Upstage Lung Cancer on helping to share patient voices at Spring, Sing Out Concert series. Recently I recorded a podcast for Backstage @ Upstage.

It is now twenty-five years since my shocking lung cancer diagnosis, and it feels like the perfect time to share all I have learned through a new organization I have created Resilient Souls, an online resource and platform for women who have received a diagnosis of any type of cancer. In addition, I am launching a brick and mortar studio, Resilient Soul Yoga, in Colorado. The goal is to aim for resilience!

The Power of Screening for Lung Cancer

December 5 – 9 is lung cancer screening awareness week. Screening can save your life or the life of someone you love.

Sixteen years ago, I was lucky enough to have found my lung cancer by accident! My incredible story is on our Upstage Lung Cancer website. It was only though a series of mishaps that I found out I had lung cancer. It was at the earliest stage. Because of that, I’m grateful to say I’m still here to tell the story and celebrate my life with friends and family.

I’ve learned a lot about lung cancer over these years. One thing I know for sure is that we can’t rely on accidental happenings to detect lung cancer. This disease remains the number one cancer killer, for both women and men throughout the world. Fortunately, we now have the opportunity, for those who qualify, to have low-dose CT scans to detect lung cancer earlier.

lung cancer screening

While smoking is still the leading cause of lung cancer, many people are diagnosed each year who don’t currently smoke or who never smoked. Now, we have evidence that annual screenings with low-dose CT (LDCT) can save lives. Currently, the 5-year survival rate can improve from 25% to 64%, if diagnosed early.

People at high risk include individuals 55 to 77 years old, current and former smokers, those who have quit in the past 15 years and meet certain other criteria, those who have a 20 pack-year history, people exposed to cancer-causing substances in the workplace and people who have a personal or family history of lung cancer or who had previous radiation therapy to the chest.

Please talk to your doctor if any of these criteria apply to you. Screening can be free or low cost if you have coverage through the Affordable Care Act, have Medicare and Medicaid Services. You may also check cost with your own insurance carrier.

DON’T WAIT TO GET SCREENED. Symptoms of lung cancer don’t appear until later stages, so get more information today.

To help you find where you can find lung cancer screening in your area, use The American College of Radiology Lung Cancer Screening Locator Tool.

Please share this information. We’re all in this together!

From Impacts to Action: Telling the Stories of ULC Board Members

Upstage Lung Cancer board members are behind every show, grant, podcast and blog post that the organization gets or creates. Inspired by their hard work, I asked them what made them want to join the organization’s board in the first place.

Don Warnock has been with the nonprofit’s board from the beginning. He is active in the Boston creative scene, runs a film company and is involved with theatrical productions and cabaret performances. Don got to know Upstage Lung Cancer founder, Hildy Grossman, through their involvement in music and theater. According to Don, Hildy “knew I was a technical director and asked if I would join the board.” Since then, he has handled the lighting and technical aspects of all of the live shows that Upstage has held.

Upstage Lung Cancer board members
Upstage Lung Cancer Board members gather together regularly, in-person or virtually, to plan the organization’s next big performance event.

He felt motivated to join both because of his friend, Hildy, because health has always been of interest to him, and as a chance to use his creative talents more frequently. “Most people who are in theater would like to do more theater,” he notes. For him, Upstage Lung Cancer is “not just about getting money or putting on a show.” Instead, it can “appeal to people about what else they want to do” in relation to lung cancer, other health issues, and making a difference.

Upstage Lung Cancer’s treasurer, Nancy Swan, joined the board at the recommendation of her sister, Jane, who had lung cancer. When she got the news about her sister’s diagnosis in 2011, it was the last thing that Nancy expected. “It was just a shocking diagnosis for someone who had always taken care of herself, not to mention a never smoker,” she said. Jane was involved in the Boston music community as a classical musician, church organist and choral conductor. “She and Hildy had a mutual acquaintance in the local music world who introduced them. When Jane met Hildy, she mentioned she was looking for a treasurer for the organization and Jane recommended me, as I have some business background and bookkeeping experience,” Nancy said.

Although she first heard of Upstage Lung Cancer through her sister, the cause also appealed to Nancy. “Hildy and I hit it off and share some common interests, I found her story compelling and liked the idea of doing something, however small, to try to change the lack of early diagnosis for lung cancer. So, I’ve been the treasurer ever since!” Nancy explained. In addition to her duties as a treasurer, Nancy initially helped out with organizing the group’s silent auction, selling tickets and merchandise, but has lately shifted her focus exclusively to Upstage Lung Cancer’s finances.

Connections to family and friends who had been impacted by lung cancer also motivated board member Dale Appel to join Upstage Lung Cancer. Her father had a lung disease and was on oxygen, though Dale was never able to confirm that it was lung cancer. The disease’s impact on other people in her life was clearer: Her paternal grandfather and cousin died of lung cancer, and she also knew a friend who was diagnosed with it, but never smoked.

Dale got involved with the board for Upstage Lung Cancer the second year after it started. She went to the first ULC fall concert and helped out as a volunteer with the silent auction. Then she was able to join the board shortly after. As part of the board of directors, she helps out with PR, editing written materials and also pens some of the personalized thank you notes to Upstage Lung Cancer’s donors. Dale points out that many members of the public have little awareness of lung cancer and its affects, but the statistics hit differently once family members are impacted. “Most people are not aware how many people die from lung cancer,” Dale said, adding “when people in your family get it, you ask ‘Why aren’t there more people researching this?’”

She may be unable to change the past, but Dale hopes for future improvements for her relatives’ sake. “As a mother and grandmother with this in my family, I want better options for my children and grandchildren.”

From Survivor to Thriver
A Personal Story

“I don’t feel like myself anymore. What’s the point? What’s my purpose?”

As a life coach for cancer patients, and as a cancer patient — I hear this question all of the time.

I lived this question for 3 years before I found my way to the answer.

I was diagnosed at 34 years old (6 years ago!). Cancer ripped up every root that I had planted. Every single facet of my identity was unearthed & burned to ash. Leaving me with a husk of the vibrant young woman I once was.

Constantly, I asked: what’s the point? What’s my purpose?

Deep underneath was a thought driven by pure terror: I am going to die. If I’m going to die, what’s the point in pursuing a dream, setting a goal or making future plans?

Heather Smith
Coach helping cancer patients find balance in life+treatment to stay present + ENJOY LIFE.

It took disease progression, 3 seizures and a gaping head wound to wake me up.

We say, “Who knows, you could get hit by a bus tomorrow! No one knows when they will die!”, as if this statement is helpful. Conciliatory. Useful. As if it’s supposed to make you feel better.

It’s not. It doesn’t. It’s a cop out. It’s an excuse to avoid big ambitious goals. It’s a sneaky reason to sit back watching the minutes turn into hours, turn into weeks & months.

I woke up in a hospital bed after my seizures and my first coherent thought was that I had NOT been living my life right (and yes, my brain was not grammatically correct.) I was an epic failure at cancer life. I spent three years going to work to pay the bills. Coming home completely wiped out (thanks fatigue!). I grumbled my way through the things that had to get done. I was angry. I snapped at the people I loved the most. I turned inward. I shriveled up and died every single day.

I was NOT my vibrant loving self.

I questioned everything. Should I even bother contributing to my retirement plan? What’s the point in planning a trip? I’ll probably be too sick. Why am I wasting this precious time working for someone else, living to work… and that’s it?

Underneath those questions lurked the BIG question: what is my purpose?

That question is THE question.

It’s the one that fills you with fear. It’s uncomfortable. It gives your brain a ripe breeding ground for scary thoughts to crop up… the thoughts that make you a victim. The thoughts that you could never speak out loud. The darkest fears. The cobwebs that catch you and drag you down.

But, it is also THE question to fuel your internal fire.
I took my understanding “I am not doing my life right”, applied some creativity and a LOT of persistence, to create a purpose. Yes. I created my purpose.

THE purpose.

I am creating a life I love using my mindset tools. I am the proud owner of a “cancer thriver toolbox” filled with all the biggest, shiniest & most useful tools so that I never question whether I am doing my life right.

I became the person I needed back then, when I was skulking through the day… wondering “what is my purpose”? I became a life coach. THE life coach for cancer patients.

I created a belief that the VERY reason why I am living with cancer and why I am here, outliving statistics (twice!) is so that I can BE this person for others. I am a cancer patient because it is my purpose.

With my clients, we work together to create their purpose. To find the little seed, plant it, nurture it, water it and grow it.

Let me be clear. MY purpose is MINE. The purpose for my clients are both grand and small. The common denominator for each person’s purpose is simple.

Creativity.

Stick with me here.

Creativity leads to passion. Passion leads to purpose. Creativity doesn’t mean singing or painting or playing music (although if it does for you, I’m jealous!)

Creativity is using your mind to assess your life to find the things that light you up. It’s being curious: how can I cultivate more of this? Followed by taking action: trying on the things that light you up (even picking up old hobbies) and being creative with what you learn.

Create the life you love by bringing in MORE of the things that light you up. When you do that, you find your purpose.

It’s a pretty easy formula: find the things that light you up PLUS do more of those things, then SUBTRACT the things that suck you dry.

There is no right or wrong way to do this. Go back and read that again.

There is no right or wrong way to do this.

I promise.

You can CREATE the life you love. You can create your own passion. You can create your own purpose.

Your purpose can be YOU, fully present with your family without cancer fear creeping in.
Your purpose can be YOU, making the best memories with your spouse
Your purpose can be YOU, wearing a daring red lip as you reconnect with old friends.
Your purpose can be YOU, pursuing your dream of becoming a yoga instructor.
Your purpose can be YOU, a talented seamstress.
Your purpose can be YOU, adopting a dog & being the best dog mama out there.
Your purpose can be YOU, loving your newly retired life.
Your purpose can be YOU, volunteering your time & skills to a cause you are passionate about.
Your purpose can be YOU, running a business successfully.


If you want to learn more about my signature 1:1 coaching program From Survivor to Thriver, where I can help you create a thriving life that you love, send me an email.
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Linking Our Voices to Make Congress Listen: Research Matters!

Below is a letter to the Department of Defense, generated by members of LungCAN, a collaboration of lung cancer advocacy organizations throughout the USA. ULC has been a member of LungCAN for many years. There is power in linking our voices together, and we urge the DOD to fund desperately needed, significant lung cancer research.


Dear Member of Congress,

As organizations representing lung cancer patients, veterans, caregivers, doctors and researchers, we urge you to support $60 million for the Lung Cancer Research Program within the Congressionally Directed Medical Research Program (CDMRP) in the Fiscal Year 2023 Defense appropriations bill.  

We were deeply frustrated to learn that in FY21, because of a lack of funding, the Lung Cancer Research Program was forced to reject 82 out of 119 research proposals rated excellent or outstanding by reviewers (70%). This represents 82 missed opportunities to advance novel, desperately needed technologies and treatments to fight America’s top cancer killer. A $60 million appropriation could have funded all of these high-quality proposals. We ask you to support lung cancer patients by making this critical funding commitment now.

The past two decades of medical research have brought new hope to the approximately 235,000 Americans diagnosed with lung cancer each year. Diagnostic, surgical and therapeutic innovations have increased the five-year lung cancer survival rate by 14% to 23.7% over the past five years. However, 23.7% lags significantly behind almost every other major cancer. Without a cure, lung cancer patients, most of whom are diagnosed at advanced stages, confront the terrible reality that their current cancer therapies will inevitably fail. Lung cancer patients’ survival depends on significantly more research into everything from early detection to treatments that combat resistance to existing therapeutics.  

Despite many scientific advances, lung cancer remains the country’s leading cause of cancer deaths among women (21%) and men (21%). Each day, more than 350 people die of lung cancer, which is more than those who die of breast, prostate and pancreatic cancers combined. It is 2.5 times more than those who die of colorectal cancer, the second leading cause of cancer deaths.i

Veterans are at significantly greater risk for lung cancer and are diagnosed at higher rates than the general population. The Veterans Health Administration (VHA) estimates that 900,000 veterans are at risk for lung cancer due to age, significantly higher rates of smoking—particularly among those deployed—and toxic exposures during military service and after.  

Even though lung cancer has the highest mortality rate of all cancers, is the second most prevalent cancer among VHA patients (18%), and has by far the most VHA patients (58%) who are diagnosed at stages three or four,iii it received only 3.46% ($20 million) of the $577.5 million in CDMRP cancer funds in FY22, less than every named CDMRP cancer except one.

CDMRP’s Lung Cancer Research Program accelerates high impact, translational research, making it essential to lung cancer patients who are in a race against the clock to find novel, life-saving treatments. While we ask for a major increase for the Lung Cancer Research Program, we strongly support raising the overall federal funding level for all cancer programs. We don’t want new funding of any individual cancer to come at the expense of any other cancer. 

With its history of bipartisan support for NCI, CURES, CURES 2.0, ARPA-H and the Cancer Moonshot, we urge Congress to appropriate sixty million dollars for LCRP to better reflect and respect lung cancer’s real and devastating impact on service members, veterans, and all Americans. Sixty million dollars is a critical, overdue step toward addressing the unmatched burden lung cancer has inflicted upon too many Americans, their families and their communities. We have been at the back of the line for too long.

Thank you for your thoughtful consideration,
A Breath of Hope Lung Foundation
Addario Lung Cancer Medical Institute (ALCMI)
ALK Fusion
ALK Positive
American Association of Radon Scientists and Technologists Foundation (AARST Foundation)
American College of Radiology (ACR)
American Society for Radiation Oncology (ASTRO)
Association of Community Cancer Centers (ACCC)
Biomarker Collaborative
BRAF Bombers
Breath of Hope Kentucky
Breath of Hope Ohio
Burn Pits 360 Veterans
Cancer Survivors Against Radon (CanSAR)
Caring Ambassadors
Cease Fire Campaign
Chris Draft Family Foundation
Citizens for Radioactive Radon Reduction
Clifton F. Mountain Foundation for Education & Research in Lung Cancer
EGFR Resisters
Eon 
Exon 20 Group
Free ME from Lung Cancer
Georgia Center for Oncology Research and Education (GeorgiaCORE)
Georgia Lung Cancer Round Table
Georgia Society of Clinical Oncology (GASCO)
GO2 Foundation for Lung Cancer
International Association for the Study of Lung Cancer (IASLC)
International Cancer Advocacy Network (ICAN)
Kentucky Academy of Family Physicians
Kentucky Cancer Foundation
Kentucky Cancer Link
Kentucky Cancer Program
Kentucky Health Collaborative
Kentucky LEADS Collaborative
Kentucky Medical Association
Kentucky Society of Clinical Oncology
KRAS Kickers
LiveLung
Lung Cancer Action Network (LungCAN)
Lung Cancer Connection
Lung Cancer Foundation of America
Lung Cancer Initiative
Lung Cancer Research Foundation
LUNGevity Foundation
LungLife 
MET Crusaders
Prevent Cancer Foundation
Rescue Lung Society
Respiratory Health Association
RET Renegades
Rexanna’s Foundation
Ride Hard Breathe Easy
Society of Thoracic Surgeons
St. Elizabeth Healthcare
Tennessee Academy of Family Physicians
The Patient Story
The ROS1ders
The White Ribbon Project
University of Hawaii Cancer Center
Upstage Lung Cancer

Lung Cancer Early Detection: Expanded Screening

I met an old friend for dinner recently. She got comfortable in her chair, tucked her purse under the table and ordered a tea when the waitress passed by. Mindy (not her real name) is very petite, short curly hair, quiet and health conscious since childhood. Her mother and father were committed to macrobiotics, a plant-based diet and lifestyle that aims to help people live their best physical, mental and spiritual lives. Ironically, they would chain smoke while grinding their own peanut butter at home. My friend said her family was passionate about eating food that was grown locally and in season, yet rode in a smoke-filled car with the windows rolled up as they drove out to an organic farm where you could pick your own vegetables. The smoking was such a crazy contradiction to their healthy diet, but it was the 70’s. Health consciousness followed Mindy into adulthood as did the shadow of the smoke she grew up around. She had been a smoker herself, for a couple of years as a teenager. She quit when she was pregnant with her first child and never started up again. She and her husband continued the healthy lifestyle she felt so committed to. While I knew this story from early on in our friendship, it came up again when she said she was so angry to have followed someone into the restaurant who had been smoking, blowing smoke she had to walk through and then throwing the butt into the parking lot.

The waitress set tea on the table, and we talked about our day. Mindy said she’d just had a frustrating conversation with her doctor during her annual check-up that afternoon. She started by reminding her doctor that both of her parents, an aunt, and one grandparent passed away from lung cancer. Mindy said she told him she was worrying, because she and her brother were raised from birth in a house filled with secondhand smoke. She told her doctor that she had a friend, me, who was working with Upstage Lung Cancer, and she wanted to have a referral for a baseline low dose CT scan, now that she was forty-five. Her doctor said that as a non-smoker she did not qualify as high risk according to The U.S. Preventive Services Task Force (USPSTF) guidelines. Mindy didn’t know much about the current guidelines for screening, but she had intimate knowledge of how lung cancer can be found far too late. She also knew she had some compelling risk factors that did not fit into current screening guidelines. Mindy told me she was determined to have a baseline scan, even pay out of pocket if she had to. Currently folks like my friend Mindy and others who may have genetic or environmental risk factors must advocate to receive LDCT screening, or pay out of pocket.

Need for Early Detection

early dection CT scan
Low-dose CT scans show small tumors that are not seen on standard Xrays.

For all cancers, early detection is vital to better healthcare outcomes. Currently, screening for lung cancer is only by low dose CT scans. While an x-ray can show larger tumors, a low-dose computed tomography (also called a low-dose CT scan) shows a three-dimensional image put together by the computer combining multiple images taken by a CT machine. Possible tumors are able to be identified at greatly reduced size and with far greater accuracy compared to a standard Xray. Over the past decade the use of LDCT screening has allowed for significant progress in treatment. Early-stage detection of lung cancer is when the disease is most treatable, and those who qualify would benefit from regular screening. If found early, survival almost triples.   

As of February, 2022, the Centers for Medicare & Medicaid Services (CMS) announced a national coverage determination (NCD) that expands coverage for lung cancer screening with low dose computed tomography (LDCT) to improve health outcomes for people with lung cancer. Major changes include

  • Lowering the starting age from 55 to 50 years
  • Extending the age for screening from 77 to 80
  • Reducing the tobacco smoking history from at least 30 packs per year to at least 20 packs per year.

My friend Mindy is a determined person with means. I have no doubt she will get her needs met. Yet, there are many people in the underserved populations and people without adequate access to accurate information who will not yet receive the attention they need.

The expanded scanning criteria allows for greater access to imaging and insurance coverage for more patients who are at risk. However, GREATER EFFORTS ARE NEEDED TO BE MORE INCLUSIVE FOR THOSE WHO WANT AND NEED A SCAN.

Most insurance plans and Medicare help pay for patients who qualify for lung cancer screening tests. Check with your insurance plan to find out what benefits are covered for lung cancer screening. For more information about Medicare coverage, visit medicare.gov or call 1-800-MEDICARE (1-800-633-4227).

For additional resources visit:
Lung Cancer Screening Facts & Figures – GO2 Foundation

When One Door Closes, Another One Opens

Life is not the way it’s supposed to be.
It’s the way it is.
The way you deal with it is what makes the difference.
– Virginia Satir


Alexander Graham Bell said, “When one door closes, another one opens.” However, he added, “but we often look so long and so regretfully upon the closed door that we don’t see the one which has opened for us.” This concept perfectly reflects my experience after being diagnosed with lung cancer in 2007.

Of course, it is natural, after a loss or shocking news, especially a diagnosis of lung cancer, to focus on the proverbial door that’s closed. That was true for me. Did I have a future? It certainly seemed uncertain. I was diagnosed, by accident, at the earliest stage and only had surgery to remove the cancer from my lung. But I focused on my diagnosis, what had just happened to me out of nowhere. I remember wondering if I should buy any new clothes, because I didn’t know how long I would be around. Because of my accidental, early diagnosis, I had good reason for optimism. Still, it took time to feel less anxious about what had happened and what was ahead. I was left with the echoes of the door slamming.

women’s empowerment exchange
Photo of women’s empowerment exchange heads of cancer NGO’s In Brazil

Then, just as my diagnosis seemed to come out of the blue, in 2013 came an invitation for a fellowship in women’s health and leadership. This program involved an exchange program between women heads of NGOs in Brazil and their counterparts in Massachusetts. Our Brazilian participants would partner with counterparts in Massachusetts heading their own cancer organizations. What a wonderful opportunity! I knew almost nothing about Brazil, so the chance to work closely with, and get to know Brazilian women, seemed like a gift dropping down from the heavens. The Brazilians would come to the USA for two weeks and, in turn, we would go to Brazil for 2 weeks. I remember thinking at the time that horrible things happen and wonderful things happen. What a balance in the universe.

I was so fortunate to have two women to work with. Marcelle Madeiros, from Rio, started a cancer organization after her sister lost her life to breast cancer. Her organization focuses on educating women and helping them acquire wigs after losing their hair to chemo. My other partner, Joana Jeker Dos Anjos, was from the capital of Brazil, Brasilia. After this young woman lost her breast to cancer, she used her energy and power to change government health policies to guarantee breast reconstruction surgery. While Marcelle and Joana were in Boston, they worked energetically to help me spread the word about lung cancer, and they were “hands on” in helping with a concert Upstage Lung Cancer was planning that Spring. Working together created a deep, lasting friendship and mutual admiration.

Two weeks later, all of us, Brazilians and Americans, gathered in Sao Paolo, Brazil. Most memorable was what a warm, loving and kind people the Brazilians are. We were greeted with hugs and departed with sweet gifts of remembrance. Our first meeting, at the Governor’s palace, was led by the police commissioner for Sao Paulo who was also president of the State Council on Women. She not only discussed medical care for women, but also described creating the first police station in the world specializing in women. How astounding to have police stations, now many more, protecting the medical and physical health of women (including rape cases) as well as addressing discrimination in the workplace. The purpose was to influence public policy and practices. Wow. Respect and protection for women taken seriously. I felt inspired to be sure to keep this perspective and need in mind, and to address women’s issues in lung cancer whenever I could.

So, the door to Brazil opened to a new vista for me. After meeting a group of wonderful women, locally and in Brazil, I then had the opportunity to travel to Rio and to Brasilia. Both experiences had a huge impact on me.
In Rio, we went to a favella, an area of the urban poor on a hillside on the outskirts of Rio. These areas have been known to be dangerous and home to drug dealers. My friend Marcelle arranged for an afternoon meeting with local residents, where medical professionals came with information about breast cancer and welcomed questions from the audience. This created an opportunity to eliminate any misperceptions in the community about how women get breast cancer and what screening and treatment options offer. After the exchange, there was a van available outside for women to immediately get mammograms, right there in their neighborhood. I thought this concept would be very beneficial to set up in our own communities. I thought about replicating this idea to provide information about lung cancer, and to have screening immediately available in a nearby van. It seems to me the best way to eliminate fears and distorted information is to have knowledgeable people available for conversation and answers. I’m hoping we can be a part of this kind of innovation in the future.

When I joined Joana in Brasilia, I went to see public and private hospitals. In one of the public hospitals, I had the consent of a patient who had recently undergone reconstructive surgery to see her new breast. Her doctor was also present and he spoke of the meaningfulness of this work. Witnessing the gratitude on the woman’s face, and knowing the hard work Joana had done to facilitate the opportunity for this treatment for underserved, public communities, had me crying in the hallway after leaving the woman’s room.
It has been nine years since my trip to Brazil. I continue to have dear relationships with many of the women involved in this project, here and in Brazil. This fortuitous experience opened a door I never expected to have in my lifetime. I’ve seen what it means to give everything you have to make a difference, even when the odds are stacked against you.

Since my diagnosis of lung cancer, I’ve had the good fortune to have made many friends in the lung cancer community: patients, families, medical professionals, advocates and pharmaceutical representatives who also advocate for patients. Because of the many dedicated people I’ve met, I now know the meaning of what it means to be a hero. A hero is someone who faces terrifying odds and still manages to persevere, sometimes a day at a time. I’ve had the honor to have made a friend who lived for many years with advanced lung cancer and who chose to join in several different clinical trials, including Phase 1 trials. Of course, she hoped they would help improve her own situation, but also, she wanted to do it for others who might be able to benefit from her participation and new medication that could become available.

My friend, Betsy Neisner, who was one of the women who was part of our Massachusetts delegation, kept a brilliant account of our journey to Brazil. She shared with me some of the ideas she brought home with her. They included: celebrate the agency of the group and the connections we made; educate those with authority to influence them to create change while asserting our rights and demands for improvement; and find the common bond and weave together diverse strands to create a more powerful movement.

I remain empowered and energized to keep trying to invest in the most excellent early detection lung cancer research possible. Research matters. Also, I’ve opened new doors with our podcast series, blogs and our concerts, Upstage Lung Cancer will continue to get the word out about lung cancer. Lung cancer can happen to anyone with lungs, so be bold and join our effort to do what you can.

Clinical Trials: Courage and Hope

Upstage Lung Cancer recently posted an informative podcast about clinical trials Clinical Trials and Tribulations: Upstage Lung Cancer (Podcast). Guests on the podcast are Diane Legg, Linnea Olson, Lecia Sequist, MD, and Upal Basu Roy, PhD. The discussion included personal experiences with clinical trials, debunking myths about clinical trials and opportunities as well as barriers for patients interested in clinical trials. Whether you are currently undergoing cancer treatment, supporting someone who is in treatment or would simply like to know more about clinical trials, I highly recommend listening to this podcast.

When I finished listening to this wonderful podcast, I thought about how little I knew about clinical trials, beyond their basic purpose to investigate medical, surgical or behavioral interventions for a disease. Listening to the Backstage @ Upstage podcast inspired me to set out to do a little informal research to learn more.

Linnea Olson
Linnea Olson was a tireless patient advocate and a generous spirit who touched and inspired the lives of people all around the world.

Clinical trials are the primary way researchers can evaluate a new treatment. As such, it is possible to learn if a new drug or interventive technology is safe, effective or most suited for certain populations of patients. Health authorities like the FDA regulate clinical trials, and patients are informed about benefits and risks, and can stop at any time. During treatment, patients who volunteer to receive treatment may be able to receive cutting edge treatments, current standards of care, or they may receive a placebo.

Modern clinical trials are not simply offered as a last resort. Today, there are a wide range of reasons for considering a clinical trial. Clinical trials can screen for and prevent disease progression and target those who may best respond to the medication or protocol. Biomarker testing can offer important data to help match a patient with a current trial of targeted therapy. Some patients with advanced disease may prefer a clinical trial over current standard of care to buy more time. In this case, some patients will go on to another clinical trial when it is warranted or gives more hope for effectiveness.   

Unfortunately, in the US, for some time now, estimates are that only 1 in 20 eligible patients enroll in cancer clinical trials. Research suggests that a clinical trial system that enrolls patients at higher rates produces treatment advances at a faster rate and corresponding improvements in cancer population outcomes. So, why do so few patients participate in clinical trials? The answers are complex, and both medical and non-medical. Medical impediments include being too sick to participate in a study, not meeting the requirements, or the trial is offered at a medical facility that is inconvenient for a patient to get to. Non-Medical barriers to participation in clinical trials include a treating physician who will not know about or consider a clinical trial as an option for their patient. There are also financial burdens and hidden costs for both the participant and provider.

If you are interested in a clinical trial, the best course of action is to approach your treating physician and discuss the pros and cons of a clinical trial for yourself or a loved one. It is essential to be aware that there are options and to work as a team with medical staff to help evaluate the pros and cons to each.

Following our podcast on clinical trials, Linnea Olson lost her life to lung cancer. However, as Thomas Lynch, MD said, “Linnea changed the world in a profound and lasting manner. Her courage and grace touched so many.”


Some helpful online resources are:

Finding a Clinical Trial | National Institutes of Health (NIH)

ClinicalTrials.gov

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