The patient perspective: Living with NSCLC driven by a rare alteration

Living with HER2-mutated NSCLC 

When Elaine Lynch was diagnosed with HER2-mutated non-small cell lung cancer (NSCLC), she had no idea that she had a particular type and rare form of lung cancer.  Elaine’s knowledge evolved as her own patient journey progressed, and she has been able to use this insight to talk to us in this short video about: 

• What it means to her to live with a rare alteration of NSCLC 
• What Elaine would like other patients to know 
• What support she has had access to and how it has helped 

Meet Elaine… 

Elaine Lynch was diagnosed with Stage 4 metastatic HER2 exon 20 mutated NSCLC. 

Elaine tells us that the initial diagnosis came within 24 hours of her first and only symptom and was a massive shock as she has never smoked.

Following her diagnosis, Elaine set out to find others with the same diagnosis in the hope that they could share their experiences together, because Elaine felt having a rare alteration is often a lonely place to be.  

A small group of just three people with the same diagnosis was formed in the UK.   

All three members of the group were women of a similar age, all non-smokers, all seemingly healthy and all diagnosed unexpectedly with Stage 4 lung cancer. Elaine felt their journeys were eerily similar. 

Elaine believes that positivity is a choice and is using that as a focus throughout her cancer journey. Elaine explains how she concentrates on finding the hope in the hopelessness that usually comes with a lung cancer diagnosis. 

Elaine is keen to point out that chemotherapy, targeted therapy and radiation have enabled her to continue to thrive, and although science has done an excellent job of keeping her cancer at bay, Elaine strongly believes that the mental battle is just as important.  She says, “We all have bad days, I just try not to let them ruin the good days, I believe there is still a lot to look forward to”.  

Elaine lives in the UK and is a retired school business manager. She is a member of a number of social media platforms providing help and advice for lung cancer patients in the UK.   Elaine is also Co-Chair of the Exon 20 Group in the UK.  You can visit the Exon 20 Group here and access their new member sign-up form if you'd like to get in touch.

Living with BRAF-mutated NSCLC 

Mayra Marte-Miraz was diagnosed with stage 4 BRAF-mutated NSCLC during the covid pandemic, and therefore at a time when it was very difficult to access the usual team of healthcare professionals for support.   

Mayra uses her own experiences to help other patients living with a rare alteration as she talks to us about; 

• What it means to have a rare alteration of NSCLC 
• What patients should expect at key moments in their journey 
• What patients need to know 
• What support patients living with a rare alternation of NSCLC can access

Meet Mayra… 

Mayra Marte-Miraz is a Lung Cancer Warrior, advocate, and senior healthcare administrator living in Rockland County, New York.  

With nearly four decades of experience in academic medicine, she currently serves as Vice Chair at a renowned medical centre.  

Diagnosed unexpectedly with lung cancer at 49 despite being a healthy non-smoker, Mayra’s journey has been marked by resilience, science, and advocacy. Now in her seventh year post-diagnosis, she continues to thrive, thanks to early detection, biomarker testing, targeted therapies, and clinical trials. 

A devoted wife, and mother of two accomplished sons, Mayra is committed to raising awareness about lung cancer screening, fighting stigma, and protecting critical healthcare funding for the NIH, CDC, and Medicaid. Her mantra, "Your disease is like a train ride... there will always be a new train waiting for you", reflects her unwavering belief in the power of research, community, and hope. 

Currently, Mayra is actively involved with the American Lung Association and has served as the New York Lung Cancer Hero, advocating in Washington, D.C. for the protection of NIH, CDC, and Medicaid for all lung cancer patients. She is also a proud member of the International Association for the Study of Lung Cancer (IASLC) and participates in several organisations supporting lung cancer patients, including LUNGevity, LiveLung, and the Lung Cancer Research Foundation.