A Closer Look at Lung Cancer in America

When you are diagnosed with lung cancer, it can feel like you have been thrown into a new world of confusing terms and big decisions to make quickly. There are also some inaccurate and insensitive assumptions about lung cancer that can be hard to look past. To broaden our understanding of lung cancer, we asked more than 800 people living with lung cancer to offer a glimpse into life after diagnosis. Community Forum: Diagnosis How well do we know lung cancer terminology? The language of cancer can be hard to understand at times. After being diagnosed, people talk about how they were suddenly thrown into an unfamiliar world with terms and expressions they had to quickly learn. Most people with lung cancer are familiar with general cancer terminology. People felt pretty familiar with terms like immunotherapy (87%), targeted therapy (74%), chemo brain (66%), and biomarker testing (58%), but there are some terms that are less familiar. About half of those living with lung cancer felt unfamiliar with the terms squamous carcinoma and scanxiety. Even fewer people knew about the terms PD-L1 (38%) and precision medicine (21%). Role of second opinions People sometimes assume they cannot change doctors after diagnosis. Whether it is because your doctor is not the right fit for you or because you just want to compare opinions, seeking a second opinion can help people make more informed decisions about their lung cancer management. Second opinions can help at any point during lung cancer diagnosis and treatment. However, only 44 percent of people living with lung cancer have sought out a second opinion. Community Forum: Second Opinions How does biomarker testing fit into lung cancer? Lung cancer treatments are more diverse today than ever. In the past, options were more limited, but treatments now include immunotherapies and targeted therapies. Biomarker testing is crucial in determining whether someone is a candidate for these new treatments. Receiving biomarker testing and knowing about tumor mutations is important when building a treatment plan. However, biomarker testing awareness is low, and many are not even sure they received biomarker testing following their diagnosis. Do you know your PD-L1 expression status? Additionally, the vast majority of people were not aware of their PD-L1 expression status. For those who were tested for PD-L1 expression, 3 percent tested positive but do not recall the expression and 4 percent tested negative. Lung cancer funding awareness How aware of lung cancer were you before your diagnosis? Because lung cancer comes with a heavy stigma, it can be left out of so many important cancer awareness conversations. This lack of awareness and pervasive stigma can be harmful. Lung cancer is the second-most-common cancer (after breast cancer) and has the highest death rate across all cancers in the United States. Since lung cancer is so prevalent and so dangerous, you would assume it would receive adequate research funding in order to support the development of new treatments. However, only 6 percent of federal cancer research funding is spent on lung cancer.1,2 There are many nuances and complexities to a lung cancer diagnosis, and this is why we need to know the facts – to broaden our understanding and promote greater awareness. Tell us more about what you learned about lung cancer after your diagnosis that you did not know beforehand. The Lung Cancer in America survey was conducted online from January through June of 2020. 804 people completed the survey who have been diagnosed with lung cancer. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Battling a chronic condition, like lung cancer, can be stressful and scary. Many individuals with lung cancer report feeling isolated or lonely, and finding a support system may be critical to emotional, physical, and mental wellbeing.1,2 This support may come from your healthcare provider or healthcare team, as well as from friends, family members, and support group members who have gone through similar situations. There are no limits to who (or what) you might find support in, and no option is better than any other. However, it is important to find others who will walk along with you in your journey, whether it be through treatments, appointments, tests, or even just navigating the struggles of everyday life. Community Forum: Finding Support Our 2018 Lung Cancer In America survey took a deeper look into the support systems of those with lung cancer. Over 800 individuals responded with their experiences, and the results were incredible. Who is providing support? Over 80% of participants said that they had at least one other person besides their healthcare team involved in the management of their lung cancer. The most common source of support reported was from spouses or significant others, with over 60% of respondents reporting that they seek aid in these individuals. Roughly 44% said that their child was actively involved in their cancer journey, and 24% said they had at least one friend involved in their care. Siblings, grandchildren, and parents were involved in about 18%, 13%, and 9% of respondents’ care, respectively, and 13% cited another relative or family member as being an active supporter. Peer counselors and support lines were utilized by about 3% of participants and 2% said they rely on a paid caregiver or home health professional. About 17% said no one else was involved in their lung cancer management aside from their healthcare team. What kind of support is received? Common forms of support received, according to 30% or more of respondents, include providing emotional support and transportation to doctors’ or treatment appointments. Additionally, over 20% said that they receive help with household duties, taking notes during medical appointments, and understanding medical care, as well as help in selecting medications or treatment plans. When it comes to areas of support that are still needed, nearly 25% of respondents said that they are lacking when it comes to emotional support, household duties, and finding coping strategies or stress management techniques. Community Forum: Resources & Assistance Programs What does the community say? We asked our community to tell us who helps them most when it comes to their lung cancer journey... Encouragment from loved ones “My husband. I couldn’t have done it without him.” “My wife has been by my side from day one” “My husband, daughter, grands, and family.” “My wonderful friends and family, they are the best.” “Aside from Jesus Christ, my caregiver (spouse and soulmate for 41 years) and too many to mention by name who were compelled to help me financially for travel, housing and meals. I am blessed no matter what.” A supportive healthcare team “My ‘angels’ and, of course, my doctors, oncologists, and nurses.” “My lung group and nurses.” It takes a village “A lot of good and generous folk.” “God and my family and my fantastic oncologist and his nurses and staff.” “So many people! My daughter, a nurse, is always there for me. She answers all the dumb questions I have, and pre-triages all the weird symptoms and lets me know if I should call the doctor. I’m thankful for all my family and friends, and that includes my medical team.” [poll nexus_id="4157"] It’s obvious from these responses that support is so welcomed, and needed, when battling lung cancer. Let us know who helps you along your journey. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Each person’s journey with lung cancer is challenging, no matter what side effects they experience. Some side effects, like fatigue, affect nearly everyone undergoing treatment. Others are less common and, in some cases, even unexpected. In any case, side effects can be hard to predict and can have a big impact on quality of life. Community Forum: Side Effects In our 4th Annual Lung Cancer In America survey, we explored the many side effects that affect people living with the condition. More than 800 people with lung cancer completed the survey, and nearly every single respondent shared that they have experienced a variety of side effects from their diagnosis and treatment. Following the survey, we also turned to community members on our Facebook page and asked them to weigh in with the most surprising side effect they have experienced. Here, we explore some of the side effects that caught them off-guard. Many were surprised by breathing problems Lung cancer makes it hard for lungs to exchange oxygen, causing many to feel short of breath even when they least expect it. A large number of survey respondents noted that they have experienced respiratory symptoms, including: Breathing problems – 45 percent Chronic or persistent cough – 32 percent Wheezing – 31 percent Pneumonia or bronchitis – 22 percent Excessive phlegm – 20 percent “Fatigue and the shortness of breath. I just walk up the stairs and I have to sit down as soon as I get to my room.” “Difficulty breathing in the heat.” “Shortness of breath, especially when it is really hot outside.” Pain in unexpected areas Pain was a common side effect, with 38 percent of respondents noting this symptom. However, many community members were surprised that they experienced pain in areas like their muscles or bones. “Pain in my left breast and sharp pains when I cough or sneeze where the drainage tubes were.” “Muscle pain was not mentioned in side effects...was not prepared for it!!” “Pain in my bones and left side.” “Pain on my cancer-free left chest” The impact of lung cancer on eyes, ears, and teeth A number of survey respondents shared that their eyes, ears, and teeth had been impacted by their diagnosis. Vision changes were experienced by 26 percent of survey respondents. About 22 percent have experienced a ringing in their ears, and another 12 percent have hearing loss. Community members also mentioned that their teeth started to break or fall out as a result of treatment. “I never had trouble with watery eyes until I started chemo. Now water just rolls down my face.” “I had a serious vision issue from steroids used every time I had chemo. CSR, central serous retinopathy, a swelling of the tissue of the retina. Took a long time to resolve.” “My teeth broke off really badly. [I] now have full dentures.” “Hearing loss in my left ear – did not expect that.” Nausea and lack of appetite Even though many cancer treatments can cause nausea and lack of appetite, these symptoms can come at times and in situations when people least expect it. Interestingly, many community members mentioned that certain smells triggered their nausea. Many respondents also shared that they have experienced these types of symptoms: Loss of appetite – 39 percent Weight loss – 35 percent Nausea and/or vomiting – 34 percent “Sense of smell sometimes makes me nauseous.” “Food does not taste good anymore. No appetite, and I have lost 45 pounds.” “I cannot even walk past the deli in the supermarket; it smells so bad I want to puke.” Changes to skin and fingernails Treatment for lung cancer has a far-reaching effect on the body, including on the skin and fingernails. Just over 30 percent of respondents shared that their fingernails became thin or brittle following treatment, while 27 percent noted skin irritation and/or changes. Considering that many treatments weaken the immune system, it is not surprising that 11 percent also experienced slow wound healing. “Itching, under control with Benadryl.” Other surprising side effects While some side effects were not reported by as many survey respondents, these issues show that lung cancer can have a far-reaching impact on the body. Respondents mentioned issues like neuropathy (32 percent), swelling (16 percent), and bleeding and/or clotting issues (8 percent). “Swollen legs and feet that have to be raised and iced in hot, humid weather or when I sit or drive for a couple of hours.” “Neuropathy and cramping in feet is my only remaining side effect, but it sure is annoying!” “Blood clots! I had no idea cancer causes blood to ‘thicken.’” The 4th Annual Lung Cancer In America survey was held online from January through June 2020. 804 people completed the survey. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] As we’re learning more about lung cancer, including how it progresses and how it can be treated, new diagnostic and biomarker testing options have arisen. In addition to typical diagnostic and follow-up tests, such as CT scans, lung biopsies, chest X-rays, MRIs, and more, biomarker testing has gained popularity as a way of learning more about an individual’s cancer and potentially how to treat it. Although biomarker testing is a relatively new option, it may be beneficial in some lung cancer cases, specifically in non-small cell lung cancer (NSCLC).1,2 Community Forum: Biomarker Testing Who gets biomarker testing and what are their results? Within the past year, we conducted the 2018 Lung Cancer in America survey. We received responses from over 800 individuals who either had a diagnosis of lung cancer or were a caregiver to someone with lung cancer. Of individuals with non-small cell lung cancer, just under 40% had some form of biomarker testing. Of these respondents, about 25% tested positive for a mutation, and 13% were tested, but a common mutation was not found. The most common mutation that individuals with NSCLC tested positive for was an EGFR mutation, with 14% of respondents receiving this result. The next most common mutation was an ALK rearrangement affecting 4% of participants. Additionally, KRAS mutations and ROS1 rearrangements both had 2% each, and were the next most commonly reported. About 23% of participants with NSCLC had never been tested for mutations, and over 40% were unsure whether or not they had this kind of testing in the past, indicating that biomarker testing may not be as widely used or known about by individuals with lung cancer, specifically NSCLC. What is biomarker testing? The basic idea behind biomarker testing is to identify any mutations within an individual’s genes. In cancer cells, specific mutations can cause cancer cells to grow, or proliferate, leading to further development and spread. Some mutations may help predict the way a cancer will behave as it progresses, including its aggressiveness. This information may also help predict how a cancer might respond to treatment. Biomarker testing can be done on cells taken for a biopsy. When a biopsy is performed, a small collection of cells are taken out of the body and analyzed under a microscope to help diagnose specific types of cancer. These cells can also be further analyzed in a lab to determine their genetic components. This second step is where specific mutations might be identified.1,2 How can biomarker testing impact treatment? Finding out what mutations an individual’s cancer cells have can greatly impact treatment and lead to a personalized plan of attack for your specific cancer (sometimes referred to as personalized medicine). Some mutations may have FDA-approved medications on the market already that are designed to fight that specific cancer. Other mutations may help predict the likelihood of a cancer returning after radiation and/or surgery and may help determine what the next best steps might be when it comes to procedures or planning. Additionally, some mutations may have treatment options that are being investigated in clinical trials, and your doctor may be able to connect you with a trial you can try to join if you are interested. Examples of mutations that currently have FDA-approved treatments on the market include: EGFR mutation (Epidermal Growth Factor Receptor)ALK gene rearrangement (Anaplastic Lymphoma Kinase)ROS1 rearrangementBRAF V600E mutation1,2,3 Examples of mutations that are being researched in clinical trials and have treatment options in development include: KRAS mutationT790M mutationPresence of PD-L1 protein in cells1,2,3 Talk with your doctor At this time, individuals with NSCLC may benefit the most from biomarker testing, followed by individuals with squamous cell or small cell lung cancer who were never smokers.1,2 However, regardless of what kind of lung cancer you have, or your smoking history, you can still ask your doctor or healthcare team about biomarker testing and if it’s appropriate in your specific case. Biomarker testing may not benefit everyone, and your doctor can explain why it may or may not be an option for you. Learn more about biomarker, tumor, and genomic testing: Biomarker Testing Needs to Keep Up With TreatmentsMust Know Information for Newly Diagnosed Lung Cancer PatientsThe Who, What, When, Why & How of Lung Cancer Tumor Mutations [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Lung cancer is the second most common cancer in both men and women accounting for 13 percent of all new cancers. Approximately 15 percent of all lung cancers are small cell lung cancers (SCLC).1,2 Many of the current cancer surveys out there overlook the lung cancer community and, more specifically, those with SCLC. In order to paint a clearer picture of what life looks like with this aggressive, less common type of cancer we asked the LungCancer.net community to participate in our annual In America survey. A total of 92 people with SCLC responded to our Lung Cancer In America survey. Here is what they shared about life with SCLC. Community Forum: SCLC What is it like being diagnosed with SCLC? The survey found that 61 percent of respondents were diagnosed in the early stage. While 73 percent received a diagnosis within 2 weeks of their first appointment, 27 percent were diagnosed more than 2 weeks after this appointment. The survey also found some common themes in how people are first diagnosed with SCLC. Fifty-five percent were diagnosed after experiencing symptoms and seeing a healthcare provider. Nine percent were diagnosed after a routine medical exam. Another 7 percent were diagnosed after a lung cancer screening. Health care satisfaction matters We know that overall satisfaction during diagnosis and treatment largely hinges on the healthcare team. We found that 76 percent of those with SCLC who took our survey were satisfied with the care they received from their doctor. Information that is easily digestible and understood remains a factor in patient satisfaction. According to the study, 68 percent say that the information given to them by their care team about tests and diagnosis was easy-to-understand. The value of support systems Finding a reliable support system is crucial when facing a lung cancer diagnosis. Of SCLC survey respondents, 59 percent had a spouse actively involved in their care while 49 percent had a child involved. Thirty two percent said a friend took on a major role in supporting them through their diagnosis and treatment. SCLC clinical trial disparities Of the 92 people with SCLC surveyed in the Lung Cancer In America, an astounding 92 percent have never participated in a clinical trial. Cancer clinical trials have strict enrollment criteria, making participation difficult. When asked if they were interested in participating in a clinical trial, 51 percent said they were not interested. What's your experience with SCLC? The results from our survey are only the beginning looks into life with SCLC. Easy-to-digest information from their doctor, good communication, the need for a strong support system, and questions exploring treatment advances are highly important to those living with SCLC. We want to hear about your experiences with SCLC. Did you experience symptoms prior to your SCLC diagnosis? Do you feel supported by your care team? Have you participated in a clinical trial? If you are living with SCLC and have similar (or different) experiences to share, go to LungCancer.net's share your story submission page to tell us more. Share your story About the survey: Developed and administered by Health Union, Lung Cancer In America 2019 surveyed 867 U.S. respondents diagnosed or in the process of being diagnosed with lung cancer, as well as 130 caregivers of current or deceased patients, from January 7 to March 14, 2019. A total of 92 of the 867 respondents were identified as diagnosed with small cell lung cancer (SCLC) and used in the data for this article. 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