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Navigating a Lung Cancer Diagnosis: 4 Key Considerations for Patients

Lisa Cruz, Patient Advocacy Lead, Takeda Oncology, Marcia K. Horn, Exon 20 Group at ICAN, International Cancer Advocacy Network | February 22, 2022
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This article is for informational purposes only and is not intended to provide medical advice. Marcia K. Horn received compensation from Takeda for her participation in the survey, which she directed to ICAN, International Cancer Advocacy Network.

This article was originally published on Cure TodayGo to https://www.curetoday.com/view/navigating-a-lung-cancer-diagnosis-4-key-considerations-for-patients.

An estimated 235,760 people living in the United States were diagnosed with non-small cell lung cancer (NSCLC) in 2021  1.  A lung cancer diagnosis is life-altering, and while we have made great strides in accurate diagnosis and treatment, there is still work to be done to ensure patients with lung cancer feel supported and armed with the information and resources they need to best manage this incredibly challenging journey.

While NSCLC is the most common form of lung cancer,1 less is known about certain rare forms of lung cancer, such as epidermal growth factor receptor (EGFR) Exon20 insertion-positive (insertion+) NSCLC. EGFR Exon20 insertion+ NSCLC makes up about 1-2% of patients with NSCLC, accounting for approximately 35,000 patients diagnosed with lung cancer worldwide each year, including approximately 2,000 to 4,000 in the U.S. alone.  2-4 ­ Some patients diagnosed with EGFR Exon20 insertion+ NSCLC are often surprised that they could even have lung cancer due to their otherwise good health and history of never smoking. On average, patients are between 65-70 at time of diagnosis.

Lisa Cruz, Patient Advocacy Lead, Takeda Oncology shared, “In my 21 years working in patient advocacy, one thing I have learned is that understanding the patient experience is critical in addressing the needs of patients living with cancer so that we can ultimately help improve outcomes for patients, beginning at diagnosis. EGFR Exon20 insertion+ NSCLC has been historically difficult to diagnose and treat. Until recently, there have been no approved targeted treatment options. At Takeda, we aim to continue to educate patients and physicians alike as we look to personal experiences and the latest data as our guide to creating greater awareness around this disease.”

“There is an urgent need to increase both physician and patient education surrounding EGFR Exon20 insertion+ NSCLC, so that physicians are aware of the latest advances in treatment, and patients are able to take an active role in their own care,” said Marcia K. Horn, Executive Director, Exon 20 Group at ICAN, International Cancer Advocacy Network. “Our understanding of this disease has evolved through important clinical research, enabling us to improve outcomes for these patients. Sharing recent progress, as well as insights from patients about their experiences, is critical to ensure physicians are meeting patients with curative intent at all parts of their journey – beginning at diagnosis.”

To identify gaps and to gain insights directly from patients on how to increase education surrounding the disease, Takeda Oncology partnered with two leading lung cancer advocacy organizations, the Exon 20 Group and EGFR Resisters, to conduct a survey with patients who have been diagnosed with EGFR Exon20 insertion+ NSCLC. Results of the survey, which is the largest of Exon20 patients to date, revealed four key areas to consider when facing a diagnosis.

1. Request Biomarker Testing to Ensure an Accurate Diagnosis:

Patients, their care partners and physicians need more information on why immediate biomarker testing is critical for accurate diagnosis and treatment of lung cancer. According to the survey, over 50% of patients experienced symptoms for over three months before receiving a diagnosis of NSCLC. It then took more than one month following initial diagnosis for patients to be biomarker tested and subsequently diagnosed with EGFR Exon20 insertion+ NSCLC.

With the increase of treatments and clinical trials, patient and physician education around biomarker testing is even more critical. Take action by asking for comprehensive biomarker testing following a NSCLC diagnosis.

2.Seek Out a Second Opinion

Emma, a survey participant who was diagnosed with NSCLC in 2018, described this experience in her own journey, reflecting that she “did not feel there was adequate time spent with [me and my care partner] to be sure we were comfortable with our options.”

A lung cancer specialist can be an important part of your team as you are navigating a diagnosis and subsequent treatment. Nearly 70% of those surveyed received their initial diagnosis from someone who did not specialize in lung cancer, such as a primary care physician, pulmonologist or general oncologist. Forty percent of survey participants said they did not receive enough information at their initial doctor visits after diagnosis with NSCLC to make good decisions about what to do next.

If there isn’t a lung cancer specialist near where you live, some doctors may be open to reviewing your case remotely while most of the care is done near you. These doctors can act as a second opinion, making sure your care is complete. Patients should consider seeking a second opinion to ensure comfort with their diagnosis and treatment plan.

3.Lean on Care Partners for Support and Decision-Making

Having a care partner and trusted physician is critical to help patients manage their emotions and to help guide them to trusted sources of information. Our survey found that patients want to be involved in their treatment decisions and planning, but it can be overwhelming to be inundated with information immediately upon diagnosis. Informational support from care partners, including researching the disease and available treatments and brainstorming questions for upcoming appointments, was selected as the type of support that would help patients the most following diagnosis.

The survey also found that at the time of diagnosis, 40% of patients were in a clinical trial.  A care partner can provide support by assisting patients in researching clinical trials that may be available to them. Patients surveyed recommended starting the search for potential clinical trials at Clinicaltrials.gov. Some patient organizations and advocacy groups can also help in your hunt for clinical trials. Your doctor is the best source of information if you are interested in learning more about potential clinical trials that may be right for you.

4.Don’t Underestimate the Power of Community and Care Partner Support

Feeling supported during a lung cancer diagnosis is crucial for the emotional wellbeing of the patient. According to the survey, many patients diagnosed with NSCLC enlist a care partner such as a family member, spouse or close friend to help them through their personal journey.

Many programs from trusted advocacy organizations can help. Some offer a peer-to-peer support network of fellow patients and care partners which can provide hands-on moral support and battle-hardened tips for patients and their loved ones. Recruit a care partner or investigate available programs following diagnosis for additional support and access to trusted information.

To learn more insights related to the challenges, needs and expectations of patients diagnosed with EGFR Exon20 insertion+ NSCLC, please view the full survey results on CureToday.comGo to https://www.curetoday.com/view/hear-my-voice-what-people-with-nsclc-want-you-to-know.

*The names of survey patients have been changed to protect their privacy


 1 Lung cancer - non-small cell - statistics. Cancer.Net. https://www.cancer.net/cancer-types/lung-cancer-non-small-cell/statisticsGo to https://www.cancer.net/cancer-types/lung-cancer-non-small-cell/statistics. Accessed January 7, 2022.

  2 Riess, JW. Diverse EGFR Exon 20 Insertions and Co-Occurring Molecular Alterations Identified by Comprehensive Genomic Profiling of NSCLC. https://www.jto.org/article/S1556-0864(18)30770-6/fulltextGo to https://www.jto.org/article/S1556-0864(18)30770-6/fulltext. Accessed January 7, 2022.  3 Fang, W. BMC Cancer. EGFR exon 20 insertion mutations and response to osimertinib in non-small-cell lung cancer. https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-5820-0Go to https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-5820-0.%20Accessed%20March%202021 Accessed January 7, 2022.

  4Oxnard GR, Lo PC, Nishino M, et al. Natural history and molecular characteristics of lung cancers harboring EGFR exon 20 insertions. J Thorac Oncol. 2013;8(2):179-184. doi:10.1097/JTO.0b013e3182779d18. Accessed January 7, 2022.

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