Finding Community Through Genomic Profiling: Emily's Story
January 15, 2025 Posted by: Eli Lilly and Company

The Value of Comprehensive Genomic Profiling
Living in North Carolina surrounded by forests and parks, Emily has a true passion for nature and conservation, but these days her energy has shifted onto another great purpose – helping families and people living with lung cancer – a diagnosis she never expected to receive herself.
At age 39, Emily was diagnosed with stage 4 non-small cell lung cancer (NSCLC). Emily had no known family history of lung cancer, and the diagnosis left her and her family in disbelief. Following the news, Emily describes the feeling of waiting for answers as if she was moving through mud. She vividly remembers the night she received a call from her doctor regarding her test results – his voice sounded hopeful as he shared her biomarker status. She had an actionable biomarker for which there are specific treatment options – providing a flood of relief.
Biomarker status can be identified through comprehensive genomic profiling (CGP), the most thorough type of biomarker testing that looks for alterations in the DNA of a patient's tumor cells to better understand the genomic drivers of lung cancer and inform options for targeted treatments. This form of testing falls under an approach known as precision medicine, in which an individual’s differences are taken into account in disease prevention, diagnosis and treatment.
Finding a Support System Amidst the Isolation of a Diagnosis
Initially feeling alone, Emily’s CGP results uncovered a new community allowing her to join a support group and find a safe space amongst those living with her specific type of lung cancer, including many around her age. Through shared experiences, Emily found strength in these new connections. Her support system also led her to RETpositive, an organization whose mission focuses on raising awareness, providing community support and advocacy, and funding medical research for rearranged during transfection (RET)-driven cancer. Emily continues to feel grounded and blessed with the remarkable friendships she has made along this journey.
In taking back control of her health, Emily found her experience presented an opportunity to help others and their loved ones. Now, Emily dedicates her time to helping people understand the value of testing at diagnosis and is committed to working with organizations that are focused on addressing gaps in access to testing across the lung cancer community.
Holding onto Hope and Redefining your Purpose
Today, Emily continues to spread messages of hope in her advocacy efforts. She tells others that cancer does not define you and it is not something to run away from. Instead, choose to deepen your knowledge to understand how you can be your own best advocate.
Emily is hopeful and empowered by the science and research of CGP. While her life may not look exactly like it used to, Emily has continued her passion for travel, gardening and spending time outdoors in the North Carolina mountains.
Alongside the lung cancer community, Lilly is working to educate on the importance of timely CGP to inform early treatment decisions. Lilly is committed to decreasing barriers to testing so that CGP is integrated as the standard of care for patients in which a currently actionable genomic target is detected.
Watch the video to learn more about Emily’s story:
[00:00-00:02]
[MUSIC PLAYING]
[The video fades into a woman speaking to the camera.]
I'm Emily.
[00:03-00:10]
[The woman's name and title appear against a white background, Emily, Living With Lung Cancer, then fades away.]
I was diagnosed at age 39 with stage 4 lung cancer with metastasis to my brain and throughout my spine.
[00:11-00:15]
[Emily continues speaking to the camera.]
I had no known risk factors, no known family history. I'd never smoked.
[00:16-00:18]
[Emily continues speaking to the camera.]
You just feel like the rug has been totally pulled out from underneath you.
[00:19-00:35]
[Emily continues speaking to the camera.]
You feel very isolated and in spite of having a wonderful family and support community in my life, I just felt there was just a gulf between myself and everyone else now that I have this life-threatening health condition.
[00:36-00:50]
[Emily continues speaking to the camera.]
I thought chemotherapy, radiation, surgery, if you're fortunate and, and it's caught early. I didn't have any idea that there were other options.
[00:51-00:57]
[As Emily continues speaking to the camera, a definition of comprehensive genomic profiling fades in next to her. The text says, "Comprehensive Genomic Profiling (CGP): The most thorough type of biomarker testing that enables the detection of genomic alterations in a person's cancer tumor cells to inform treatment decisions."]
Comprehensive genomic profiling was something that my doctor brought up the first time we met with him.
[00:58-01:00]
[Emily stands at a table and prepares food.]
He said we you have a targetable biomarker
[01:02-01:04]
[Emily sits a table and takes a sip of coffee. The definition of CGP fades away.]
and we have a treatment path
[01:05-01:09]
[Emily looks out a window.]
and that was a flood of relief and hope for us.
[01:10-01:21]
[Emily appears back on screen talking to the camera.]
What that means to me is that you're not just treating cancer, you're not even just treating lung cancer. That's where my cancer happened to originate,
[01:22-01:26]
[Emily continues speaking to the camera.]
but you are treating something that is an alteration that is targetable.
[01:27-01:34]
[Emily walks along a path in the forest.]
I exercise, I travel, and I'm able to live my life with this disease not being defined by this disease.
[01:35-01:38]
[Emily opens a door, walks inside, and shuts the door.]
And that's all because of genomic profiling.
[01:39-01:44]
[Emily appears back on screen talking to the camera.]
Lung cancer advocacy is part of my new sense of purpose.
[01:45-02:06]
[Emily continues speaking to the camera.]
I discovered RETpositive and I, through that, made friends with people who are my age who were going through the same thing. Cancer can be so isolating, and that was really important to me. And I didn't even know that I was missing that, I just was feeling a void.
[02:06-02:14]
[Emily continues speaking to the camera.]
It made me feel like, oh, there is a community out there and I'm a part of this community. I'm not going through this disease alone.
[02:15-02:19]
[Emily sits down and opens a book.]
There are many excellent treatments that exist today
[02:20-02:26]
[Emily reads a book.]
that people may not ever access because they aren't getting the precise diagnosis of their condition.
[02:27-02:35]
[Emily appears back on screen talking to the camera.]
It is so much better to know from the outset, I have an alteration and there are these treatments available for that alteration.
[02:36-02:42]
[Emily continues speaking to the camera.]
It's all information critical to our survival as cancer patients.
[02:43-02:50]
[Emily continues speaking to the camera.]
Cancer is hard and it's scary, but you are not powerless and you're not alone.
[02:51-02:56]
[The video fades out and music fades in. A red background emerges, featuring the white Lilly logo centered on the screen.]