NSCLC Stories

Elizabeth’s Outlook Was Changed After a Conversation With Her Oncologist About Biomarker Testing

Path to Diagnosis

In 2016, Elizabeth thought she was in the best health of her life. She had recently been on an international trip, with lots of hiking and walking, but had some persistent hip pain. Elizabeth saw an orthopedist who treated it as bursitis, was given a shot, and was told to come back in 3 weeks. Shortly thereafter, her femur broke because of a metastatic tumor in the bone from her, until that moment unknown, lung cancer. Elizabeth was referred from her local hospital to a cancer center.

Diagnosis: In the Moment

“When you hear those…three little words, ‘You have cancer’…your head is then filled with all kinds of images and all kinds of thoughts and it’s literally just a cacophony of things going on.

Lung cancer carries a lot of stigma with it. So here I was already fighting to say I have lung cancer as a non-smoker, and then I thought okay, I’m a non-smoker but now, according to the doctors, I have these genetic markers in my cancer, and so I’ve caused this.”

Moving Forward: Biomarker Testing and Treatment

“I was very out of it, I was on a lot of painkillers and trying to process. I’m 47 and I’ve been told I have lung cancer which everybody assumes kills people quickly, and so that was where my head was. My husband was pushing, saying I needed to start chemo right now.

Basically, my oncologist was like slow down, we need to get this [biomarker testing] back, because if she has one of these mutations…that changes the treatment plan dramatically.

When [the doctor] said biomarker, he might have used the phrase genomic testing… I thought of it more like you’re checking my DNA to see if I have any of these mutations that make me susceptible to cancer.

But then [my doctor] explained that they weren’t testing my DNA, that they were testing the cancer, it really alleviated some of that…pressure of, ‘Was there something that I could have done to prevent this?’

[I] was fortunate enough to have an oncologist who looked at me and looked at my profile and history and said we’re going to do this biomarker testing on you… I was very fortunate early on to discover that I had the ALK mutation, [and] started on targeted therapy after that.”

No one should be in this alone. Connect with an NSCLC community to hear more from people living with NSCLC.

AJ’s Persistence and a Second Opinion Made All the Difference

Path to Diagnosis

In 2013, AJ had 3 young children at home and a busy job as a legal analyst. For 2 years he had been constantly having to clear his throat. He didn’t think much of it until he coughed up blood. Initial blood work didn’t turn up anything, but when AJ coughed up blood again, he saw a different doctor and pushed to get a CT scan. With the results, AJ was referred to a pulmonologist.

AJ called every pulmonologist within his insurance network until he found one who could see him within a few days, instead of a few months. A tissue biopsy confirmed lung cancer. The pulmonologist wanted AJ to see a medical oncologist and start chemotherapy the next day. AJ said he would think about it and walked out in disbelief. “I wasn’t ready to hear something like that.” After walking out of the pulmonologist’s office, AJ “simmered” for a week trying to process his diagnosis, crying every day.

Diagnosis: In the Moment

“I was immediately overtaken by fear and was threatened with death within 6 months. My youngest was 10 years old at the time. It was all doom and gloom. The invisible thief came into my life and snatched everything that I’ve ever held dear…

I didn’t know where to go, I was completely lost. The doctor didn’t provide any information. I walked away completely empty and then I didn’t know where to begin.’”

Moving Forward: Biomarker Testing and Treatment

AJ finally turned to the internet and started searching for information. While most of what he came across scared him, AJ also found the name and phone number of a lung cancer advocate who assisted patients, and he decided to call.

That phone call changed the entire course of his life.

The patient advocate put AJ in contact with a patient mentor who had been living with advanced NSCLC for 4 years. That patient mentor gave AJ hope for his life and a positive outlook for his care. The patient mentor educated AJ on some key things he needed to know about lung cancer. Importantly, he also urged AJ to ask his doctor about biomarker testing.

The lung cancer advocate also put AJ in contact with a lung oncologist at a national cancer center where AJ was able to transfer his care. Before seeing the lung oncologist, AJ had a brain scan to check for metastatic lung tumors that had spread to his brain. At AJ’s first appointment, the lung oncologist said, “I don’t know how you walked into my consulting room – you have significant tumors in your brain.”

After a lot of quick decision-making, AJ went in for surgery to have the brain tumors removed and sent for biomarker testing. AJ’s tumors were found to be positive for a driver mutation, and AJ started on targeted therapy.

No one should be in this alone. Connect with an NSCLC community to hear more from people living with NSCLC.

Linda Found Hope in Her Support Team

Path to Diagnosis

Linda had already been seeing an oncologist for 2 years for her blood cancer. A lung nodule was discovered on a scan, but it didn’t seem to be growing. Her doctors weren’t concerned, but then Linda started feeling terrible. She had just about every symptom of lung cancer, but they came and went—laryngitis, vomiting, cough.

After a new scan showed growth of the lung nodule, Linda’s doctors recommended surgery. Her care team was thinking the lung tumor would be early stage—stage 1, or maybe stage 2. The morning after surgery, Linda was told the lung cancer was stage 4 because the cancer had spread (metastasized). The surgeon found 4 lung tumors and cancer speckles all on the outer lining of her lung—there was nothing they could do surgically because the cancer had spread.

Diagnosis: In the Moment

“It was devastating… I only remember asking, was it treatable? Was there a cure for it? What was my life expectancy supposed to be, and how I was going to go through life as far as treatment because I was limited to who I had as my support?”

Moving Forward: Biomarker Testing and Treatment

Linda’s oncologist took the time to talk her through her potential treatment plans and how biomarker testing is an important first step.

“I have a really good relationship with my oncologist. First day I went to see my oncologist after surgery, his team had already discussed where they should go, my options, and he sat down with me with a piece of paper and he started drawing. He drew out a diagram of the different biomarkers, the types of cancer, whether non–small cell lung cancer or small cell lung cancer, if I had this particular biomarker where we would go with treatment… He took his time and I was able to ask questions along the way.”

While Linda did not test positive for a biomarker, she has been treated with chemotherapy.

During her first round of chemotherapy, Linda wasn’t feeling well from the side effects and felt ready to give up. Her oncologist helped her find her strength, saying, “I’ve known you and you’re a fighter. You’re physically fit and that’s what’s going to make a difference. I’m going to be here and I’m going to fight just as hard as you’re going to fight, and you’re not going to give up and neither am I.”

Linda recognized that she wanted to talk to others on the lung cancer journey, to have their support and know she was going to be okay. She has found a community of patients with lung cancer that has given her greater hope for her life with lung cancer.

“After reading everything I was so afraid, and the support that I got from listening to their stories…I got to thinking, wow, she went through that and she’s still here and it was so amazing … we’ve gotten to a place where we help each other.”

No one should be in this alone. Connect with an NSCLC community to hear more from people living with NSCLC.