By Bianca Bye, 35, a mental health clinician and co-founder of the Young Lung Cancer Initiative, as told to Keri Wiginton
In January 2023, I was newly pregnant after years of infertility. Around the same time, my 63-year-old mom went to the emergency room with what we thought was a kidney infection from a UTI. She was in a lot of pain, but we had no idea how sick she really was.
Doctors diagnosed her with stage IV non-small-cell lung cancer (NSCLC) shortly after she was admitted to the hospital. She passed away three weeks later.
My dad, who was 59 years old at the time, asked for a lung scan right after my mom's diagnosis. She smoked, and he had anxiety about secondhand exposure. His primary care doctor denied his request for any kind of exploratory imaging since he wasn’t symptomatic.
Fast forward to June 2023 when my dad developed a dry cough. I reassured him by pointing out that he goes to his checkups, he’s in good shape, and he doesn’t smoke.
Long story short, the day my daughter was born, my father was diagnosed with stage IV EGFR-positive lung cancer. People with EGFR mutations tend to have minimal to no smoking history. He found out because he went to the ER and they did a CT scan. That was just 5 months after my mom died. The doctors called it an “unfortunate coincidence” since their cancers were completely unrelated.
Learning About Lung Cancer in Young People
I was glad to dive into research and advocacy after my father’s diagnosis. But last New Year’s Eve, I found myself confused and emotionally overwhelmed. I’d talked to three or four young women that day, all recently diagnosed with lung cancer, most still in their 30s and raising children.
Before my dad got sick, I didn’t even realize that people without a significant history of tobacco use could get lung cancer, let alone someone around my age or younger. I just couldn’t wrap my mind around it and wondered why more people weren’t talking about this.
As I thought about the unique needs of people in their 20s, 30s, and 40s, it struck me that they face different challenges than those diagnosed at 65 or older, the average age for lung cancer.
So on Dec. 31, 2023, I started a Facebook group for people under the age of 50 with lung cancer: Young Lung Cancer Patient & Caregiver Support Group. It grew quickly, providing a safe space for younger people to find peer support and learn how to balance life with lung cancer.
People come to our group seeking answers to all kinds of questions, including:
- How do I tell my kids I have lung cancer?
- Do I have to quit my job during treatment? What if I need it for health insurance?
- How do I manage child care, working, and treatment?
- Can I still get pregnant or have kids after lung cancer treatment?
- How do I manage traveling?
- Do I need to cash out my 401(k)?
- How can I accomplish my hopes and dreams now?
- What is palliative care? When do I need it?
From the Facebook group, I met and partnered with a group of lung cancer survivors and fellow advocates to launch the Young Lung Cancer Initiative, a nonprofit dedicated to sharing patient stories and providing information about early diagnosis, treatment, and research.
The response has been amazing. People often tell me they feel less alone and more hopeful once they connect with others who know what they’re going through.
Raising Awareness and Breaking Down Data
As a lung cancer advocate and mental health clinician, I’m used to reading research and simplifying medical information. I do this regularly for members of the Young Lung community, especially when they have questions about new treatments or clinical trials.
I’m also involved with EGFR Resisters, a patient-driven community focused on the type of lung cancer my dad is being treated for. I help manage some of their social media accounts and I'm active in their private Facebook group. I answer direct messages. And when I come across an article that might be helpful to the group, I post a summary in easy-to-understand terms.
I always remind people that I’m not a doctor or a researcher, but I share information they might want to discuss with their doctors if it relates to their mutation (specific DNA changes in their cancer cells) or resistance mechanism (how cancer cells adapt and respond to treatment).
I also like to share clinical trial results, particularly when they bring promising news about treatments. When it comes to living with lung cancer, even small nuggets of hope can make a big difference.
Lung Cancer Resources: Where to Find Research and Support
You may be able to find someone like me through other groups focused on your specific type of lung cancer. That’s why I always recommend seeking out biomarker-specific communities. It’s important to know what they offer and have access to their resources.
For example, the EGFR Resistors website links to news about research and treatments, along with a clinical trial database. You’ll also find links to their YouTube channel and social media accounts.
Here’s a list of some biomarker-specific lung cancer groups:
- ALK Positive
- EGFR Resisters
- RETpositive
- Oncogene Cancer Research
- KRAS Kickers
Other groups I’ve seen mentioned a lot on social media include:
- The ROS1ders
- Exon20 Group
- NTRKers
- Braf Bombers
- MET Crusaders
- The Happy Lungs Project (a RET-positive group)
If you’re newly diagnosed and haven’t done biomarker testing or gotten a biopsy yet, or you don’t know your treatment plan, general lung Facebook groups or organizations can help you find people to talk to. Some organizations to start with include:
- The LUNGevity Foundation
- The GO2 For Lung Cancer Foundation
- The Lung Cancer Research Foundation of America
These sites are great resources if you’re early in your lung cancer journey. They can help you figure out questions or topics to discuss with your cancer doctor, for instance.
If you’re a parent or guardian seeking ways to help kids process a diagnosis, check out the Pickles Group or Camp Kesem. Both groups offer peer support and resources for children who have a caregiver facing cancer, including lung cancer.
You can also ask someone on your care team, like a social worker or nurse navigator, for tips on how to connect with local or national lung cancer resources.
Lung Cancer Looks Different: Why That Matters
The biggest thing I’ve learned is that while all lung cancers start in the same organ, the cancer can differ on a cellular level. These DNA distinctions are important and affect which treatment works best.
For example, NSCLC tumors in people who have a smoking history often have a higher tumor mutational burden and respond better to immunotherapy (treatment that helps your immune system fight cancer) than those in people who have never smoked, including EGFR-positive cancers like my dad’s.
Your doctor should explain these differences to you, including what higher tumor mutational burden means for your type of cancer. And if you come across new research about a drug, ask for their thoughts. It’s crucial to have information that applies to your situation and to feel like a partner in your care.
If your doctor dismisses you, speak up. Let them know you’re not satisfied with how they’re addressing your concerns. And if you feel they’re not prioritizing your health, don’t hesitate to find another provider.
Changing the Conversation Around Lung Cancer
There’s a widespread misconception that only smokers get lung cancer. I come across this all the time when I share patient stories on social media. While it’s true that smoking is the main risk factor, it’s not so black and white. Your lifestyle, genes, and immune system all play a role in whether you’ll develop any kind of cancer. Why would lung cancer be any different?
I want to be clear: I’m not saying people who smoke deserve to get sick. Lung cancer is a horrible disease, and no one deserves it, no matter how much you smoke. And there shouldn’t be any stigma or blame attached to a diagnosis under any circumstances.
Through the Young Lung Initiative, we’re working to change the face and narrative around lung cancer. Anyone who gets this disease is worthy of compassion, early diagnosis, and access to effective treatments.
That said, while research has come a long way in a short time, we still need better ways to detect lung cancer early in people without a smoking history.
Right now, science isn’t where it needs to be in terms of screening for this group, which includes people like me: those who have never smoked but have a strong family history of the disease. But I’m hopeful that will change in the future.
People are living longer with lung cancer. We have people as young as 18 in the Young Lung community. And most young people are diagnosed with advanced disease, when curative treatment is less likely. We need to understand and rank risk factors so we can develop early screening programs in addition to better treatments.
And if you have an ongoing cough or other persistent respiratory problems, push your doctor to explore further. It’s OK to say, “I’m really uncomfortable that these symptoms aren’t going away like you said they would. You say there’s no way I have lung cancer because I’m only 25 and I don’t smoke. Well, you need to prove that to me.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Bianca Bye, LICSW, mental health clinician; co-founder, Young Lung Cancer Initiative, Dracut, Massachusetts.
American Cancer Society: “Key Statistics for Lung Cancer.”
Lung Cancer Foundation: “What Kinds of Specialists Are Part of a Lung Cancer Care Team?”
Frontiers in Oncology: “Impact of Smoking History on Response to Immunotherapy in Non-Small-Cell Lung Cancer: A Systematic Review and Meta-Analysis.”
