Lung Cancer Patient Stories | The Patient Story

Lung Cancer Patient Stories

Unsure of what to do after a lung cancer diagnosis? Explore in-depth lung cancer patient stories from our community members who share everything from first symptoms to navigating life with cancer.

Also hear from lung cancer experts, like an oncologist who specializes specifically in all lung cancer cases and talk about developments in targeted therapies that have helped decrease the number of NSCLC deaths in recent years.


Lung Cancer Stories

Non-Small Cell Lung Cancer Stories

Non-small cell lung cancer makes up about 85- to 95-percent of all lung cancer cases. Explore non-small cell lung cancer stories below.

“Under the umbrella of non-small cell lung cancer, there are now sub-categories based on molecular changes,” Dr. Camidge explains. “That means it’s not just based on what it looks like down the microscope, but if you suck DNA out of the cancer, you can find different mutations that act differently. “


Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R.
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Small Cell Lung Cancer Stories

Small cell lung cancer (SCLC) is only about 12-percent of lung cancer cases according to Dr. Camidge. Explore small cell lung cancer stories below.


Montessa L., Small Cell Lung Cancer



Cancer details: Small cell lung cancer
1st Symptoms: Chest pain, lingering cough
Treatment: Chemotherapy (Cisplatin switched to carboplatin, etoposide), chest radiation, brain radiation (prophylactic)
...
The White Ribbon Project Series

The White Ribbon Project is a grassroots organization is powered by lung cancer patients, caregivers, healthcare providers, researchers – anyone who wants to help raise lung cancer awareness. The group creates and distributes wooden white ribbons as a symbol of its powerful movement to shift the narrative on lung cancer and break stigmas.


Heidi Nafman Onda



Background: Diagnosed with stage 3 lung cancer, started The White Ribbon Project to push awareness of anyone with lungs can get lung cancer
Focus: Encouraging lung cancer story sharing, inclusion of everyone in the community

Dave Bjork
Background:Underwent stage 1 lung cancer surgery, in remission for decades, hosts own cancer researcher podcast
Focus:Encouraging lung cancer story sharing, passionate advocate for early screening and biomarker testing

Anne LaPorte



Background:Spent 35 years as nurse, then caregiver to father & daughter both diagnosed with cancer, before diagnosed with stage 4 lung cancer, herself (EGFR+)
Focus:Encouraging patient and caregiver advocacy, biomarker testing for more treatment options, early detection

Bonnie Ulrich



Background:Focused on family and being the "fun grandma," 3x lung cancer survivor with a smoking history
Focus:Building empathy for all patients, regardless of smoking history, and encouraging early detection for everyone to save lives

Rhonda & Jeff Meckstroth



Background:Jeff was diagnosed with stage 4 lung cancer and given months to live, but his wife, Rhonda, fought for a specialist that led to biomarker testing and better treatment options
Focus:Education of biomarker testing for driver mutations, patient and caregiver self-advocacy

Pierre Onda



Background:Primary care physician whose wife, Heidi, diagnosed with stage 3A lung cancer. Built first white ribbon for The White Ribbon Project.
Focus: Building empathy for all patients, regardless of smoking history.

Chris Draft



Background:Chris' wife Keasha passed away from stage 4 lung cancer one month after they married. He's been a passionate lung cancer advocate ever since.
Focus:Leading with love, making connections to grow lung cancer community, NFL liaison
Lung Cancer Oncologist

Lung cancer oncologist, Dr. D. Ross Camidge, is an expert in small cell lung cancer and the latest treatments.

In this interview, he details immunotherapy and treatment options, including for EGFR (Osimertinib), ALK (Alectinib), ROS1 (Crizotinib), BRAF (Dabrafenib & Trametinib), and NTRK.


Dr. D. Ross Camidge, M.D., Ph.D.



Role: Thoracic oncologist, Director of the Thoracic Oncology Clinical Research Programs
Focus: Lung cancer, small cell (Immunotherapy), EGFR (Osimertinib), ALK (Alectinib), ROS1 (Crizotinib), BRAF (Dabrafenib & Trametinib), NTRK
Provider: Univ. of Colorado

Lung Cancer Background

Lung cancer is the third most common cancer in the United States and includes two main types: non-small cell lung cancer (NSCLC), which make up about 75- to 75-percent of lung cancer cases, and small cell lung cancer (SCLC), at about 12- to 13-percent.

Lung Cancer Treatments

There are new treatment breakthroughs happening for different lung cancer types.

The 12-percent (small cell) is desperately in need of a breakthrough. They’ve been using the same chemotherapy for about 30 years. The first real breakthrough happened in October 2018 when they started adding immunotherapy.

Dr. D. Ross Camidge
Smoking and Stigma

It’s important to note that people with a wide range of smoking backgrounds – no history, some history, history of heavy-smoking, can all develop lung cancer. 

More recently, there have been a growing number of campaigns to raise awareness about lung cancer and how anyone can be impacted. One popular message is, “If you have lungs, you can get lung cancer.”

“It becomes incredibly frustrating as an oncologist when people assume all my patients are smokers. My youngest patient was 14 when she was diagnosed, and people went, ‘Was she a smoker?’ Of course she wasn’t a smoker,” shares Dr. Ross Camidge, a lung cancer oncologist.

That prejudice is a way of removing empathy. We should educate people that that’s actually a very rude question to ask.