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Empowered by Biomarker Testing: Amber’s Journey with Stage IV NSCLC

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Empowered by Biomarker Testing: Amber’s Journey with Stage IV NSCLC from Patient Empowerment Network on Vimeo.

Amber, a 56-year-old living with stage IV non-small cell lung cancer (NSCLC), shares her journey of empowerment through biomarker testing and targeted therapy. From recognizing symptoms and proactive healthcare to managing her condition with the latest treatments, Amber’s story emphasizes the importance of personalized care and staying informed. Her advocacy for biomarker testing and clinical trials aims to inspire others facing similar challenges to take an activated approach in their lung cancer care.

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Transcript:

Embracing an activated approach to non-small cell lung cancer (NSCLC) care is indispensable for every patient. My name is Amber, I am 56 years old and living with non-small cell lung cancer. Recognizing the importance of proactive healthcare and being in good physical condition, I sought medical attention upon experiencing troubling symptoms. 

I was 54 when I started experiencing symptoms of coughing, wheezing, and decreased stamina. I worked as a nurse practitioner and knew lung cancer can happen to anyone with lungs. After getting a CT scan, they discovered a spot on my lung and swollen lymph nodes in my chest. A PET scan and brain scan came next to help determine my diagnosis.

I was shocked to learn I had stage IV lung cancer that spread. My oncologist knew about the latest in biomarker testing and immediately scheduled it, which determined I was EGFR-positive. Even though that sounded frightening, I learned there was targeted therapy that worked well for EGFR-positive patients.  

I’ve been on this EGFR blocker since my diagnosis. My tumor is no longer visible, and my lesions have decreased considerably. I’m monitored regularly and stay active hiking and spending time with my family. I’m so thankful biomarker testing enabled my care team to prescribe targeted therapy. It’s a huge advancement in lung cancer care. And if you’re a former smoker and are unsure when to start lung cancer screening, ask your doctor. Even if you smoked many years ago, you should continue to receive lung scans. 

I hope that sharing my story will help other patients understand the importance of biomarker testing. 

Here are my activation tips:

  1. Ask your care team questions to learn about biomarker testing, treatment options, and what to expect during and after treatment.
  2. Don’t allow stigmas to keep you from getting the best personalized lung cancer care.
  3. Ask if a clinical trial may be a potential treatment option for your type of lung cancer.

Remember, no matter who you are and what kind of health history you have, being proactive is everything. Stay activated by being informed, empowered, and engaged in your lung cancer care.

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Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey

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Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey from Patient Empowerment Network on Vimeo.

Lung cancer patient Carol shares her journey with stage IV metastatic non-small cell lung cancer (NSCLC). Watch as she discusses the symptoms she experienced, how she pushed when her symptoms were dismissed, and key learnings that empowered her on her journey.

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Transcript:

My name is Carol, and I was diagnosed with stage IV metastatic  non-small cell lung cancer (NSCLC) at the age of 53. My initial symptoms were dismissed, but I advocated for myself to receive an accurate diagnosis.

My lung cancer journey began in an emergency room right after New Year’s Day 2022 with severe headache symptoms of head pressure, pain, and vomiting. I knew it was not a normal headache. The ER team started to treat me for a migraine and wanted to send me home. I pushed back and explained that I’d been experiencing symptoms of fatigue, frequent headaches, dizziness, and a weird buzzing sound in my ear over the last few months. I knew that I didn’t feel right and insisted on getting a brain scan.

After waiting hours to get in for the brain scan, they were shocked to find 10 brain metastases. Then a PET scan uncovered the root cause – a tumor in my lung and multiple metastases throughout my body, including leptomeningeal disease. Back when I started having symptoms, I tried to book an appointment with a neurologist, but there wasn’t an opening until February. I shudder to think what would have happened if I had left the ER on January 3 to wait until February. We know our bodies best and need to make sure we push for answers when we know there’s something more to the story. This pushing can be uncomfortable, because no one wants to be labeled “a difficult patient”, but it’s our health – and sometimes our life – at stake.

Following my diagnosis, I received one round of chemo until my genetic testing came back with the EGFR exon 19 deletion result. Then I was switched to a more targeted medication and still receive monthly infusions for bone mets.

Physically my treatment allows me to live an almost normal life enjoying my previous activities of golfing, hiking, and  gardening. And I’ve been surprised by my mental strength and positivity in the face of this horrible disease. Sure… I have times when helpless or sad or angry feelings come up, and I need to embrace and FEEL them, but overall I feel thankful and hopeful.

Some things I’ve learned during my lung cancer journey include:          

  • If something doesn’t feel right with your health, speak up and don’t stop pushing until you get answers.
  • Pay attention to your body when you experience multiple symptoms.
  • Focusing on helping others is another way to take your mind off of your own worries.
  • My friends and family are a big source of emotional support, and we are all going through this cancer journey together. So, I find that it helps them to feel useful when I give them small tasks to do, so they feel like an active part of this journey.

These actions are key to staying on your path to empowerment.