Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey

/in , , , , , /by

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.

See More from Best Lung Cancer Care

Related Resource:

How Can I Get the Best Lung Cancer Care?

 If You Have Lungs, You Can Get Lung Cancer Teri’s Story

 What Are the Latest Lung Cancer Treatment Updates?

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.

If You Have Lungs, You Can Get Lung Cancer: Teri’s Story

/in , , , , , /by

If You Have Lungs, You Can Get Lung Cancer: Teri’s Story from Patient Empowerment Network on Vimeo.

Lung cancer patient Teri shares her experience with stage IIIA non-small cell lung cancer (NSCLC). Watch as she discusses the symptoms she experienced, her extended journey to diagnosis, and key learnings that kept her on the path to empowerment.

See More from Best Lung Cancer Care

Related Resource:

How Can I Get the Best Lung Cancer Care?

 Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey

 Lung Cancer Treatment Landscape Overview

Transcript:

​​My name is Teri, and I was diagnosed with stage IIIA non-small cell lung cancer (NSCLC) in June of 2018. My lung cancer diagnosis was delayed as I was helping my mom deal with her own lung cancer journey.

My journey to diagnosis started with severe abdominal pain that was diagnosed as diverticulitis. During my hospital stay for abdominal pain, my scan showed a spot on one lung. In retrospect, I should not have brushed this off, but I wasn’t concerned since I’d never been a smoker. Almost a year later, I had a CT scan that showed my nodules had grown, and I was referred to an oncologist.

My surgery was scheduled to remove the middle and lower portions of my right lung, as each had a large mass. The weekend before surgery, I wanted to find my “baseline” for activity level. So I hiked, rode my bicycle, gardened, and kayaked with no indication that ANYTHING was wrong. My oxygen level was always 100 percent, and my energy level felt normal.

My surgery was successful, and I came away with clear margins and nothing found in my surrounding lymph nodes. I had several rounds of chemo following my surgery and had scans done every 6 months. However at the one-year mark, there were signs of recurrence. 

I felt ready to continue with my life but needed to get the remaining upper lobe removed. My surgeon told me the surgery would be “a morbidly serious procedure.” He said this three times during a single appointment.

The surgery was successful, but I had many “morbidly serious” incidents. I made it through with my husband’s amazing support.

Today, I lead a very full and active life with one lung. I am currently cancer-free. My desire is to be a support person for newly diagnosed lung cancer patients. I want to be a ray of hope for other patients so that they know they are not alone.

Some things that I learned during my lung cancer journey include:

  •   Pay attention when unusual lab results or scans come back even if you’re a non-smoker.
  •   Energy levels will not always be an accurate gauge of cancer in your body.
  •   My husband was an incredible source of support during my lung cancer journey.
  •   I am happy to share my story if it helps even one person feel they are not alone.

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

Stage IIIA Non-Small Lung Cancer Survivor Shares Importance of Listening To Your Body

/in , , , , , /by

Stage IIIA Non-Small Lung Cancer Survivor Shares Importance of Listening To Your Body from Patient Empowerment Network on Vimeo.

Lung cancer survivor Terri has had a long journey to her diagnosis. A “tiny” spot on her lung was initially dismissed and eventually led to her diagnosis a decade later with stage IIIA non-small lung cancer. Learning her tumor was KRAS-positive allowed her to make the most informed treatment decisions for her lung cancer. Watch as she shares her journey and advice for taking control of your health and getting the best care.

Terri’s advice, “Hope shared is hope multiplied. Take control of your journey and get connected. These actions are key to staying on your path to empowerment.”

Transcript:

My name is Terri. I live in Charlotte, North Carolina.  In 2017, I was diagnosed with lung cancer. 

Nearly a decade prior to my diagnosis, I went in for a routine physical. Checking the lungs, the medical staff said they heard something. I was sent for a scan and upon closer inspection, the radiologist confirmed there was a “tiny” spot. The expert who interpreted my results said “there is nothing to worry about, but you might want to follow up on that at some point.” I never pushed, nobody pushed.

 With both experts not concerned, I was relieved. I was too busy with my life and family to worry about “nothing.” I just let it go and began taking the newly prescribed asthma medication.  

Several years later,  I found myself struggling to breathe in humidity.  At first, I thought I was just out of shape, but it persisted. Maybe my asthma was just out of control? Thinking it was allergies, I began feeling worse, lasting the entire summer. My inner voice told me there was something more going on.  Ignoring it through the Autumn,  because I didn’t want something minor to slow me down, I pushed my body until I was nearly ready to collapse from this sinus infection. 

At Christmas, I headed back to the doctor’s office where she could hear the fluid in my lungs. The fluid highlighted a suspicious mass in the scan. Those last few weeks couldn’t pass quickly  enough for my January appointment with a specialist.

January came, and I saw the pulmonologist for closer examination. I’ll never forget his words, “I see CT scans  in and out every day and if I thought this was lung cancer, I’d tell you right now.” I immediately thought about the radiologist who saw the “tiny” spot years earlier and dismissed it as nothing. A few weeks later a biopsy confirmed my worst fears. It was indeed a diagnosis of stage IIIA non-small cell lung cancer.

My oncologist presented my case before a tumor board of experts where they confirmed I had KRAS-positive lung cancer.  This lung cancer biomarker test guided my treatment path.  Learning my tumor was KRAS-positive allowed me to make the most informed treatment decisions for my lung cancer. The best course for me at the time was chemo, followed by a lobectomy. 

Since then, I’ve had other treatments with new outbursts of lung cancer and continue to get regular scans. I can’t go back to the original ”tiny” spot, but what I learned is, “You either fight, or you die.” I had to accept what I couldn’t change and change what I could. 

As a full-time lung cancer advocate, I want to ensure patients feel confident to speak up and ask questions when in doubt and make sure no one feels as alone like I did at the start of my lung cancer journey.  My advice to other lung cancer patients:

  • Tune into your body and listen
  •  Ask the questions to learn from your healthcare team
  •  Take control of your journey
  • Connect with others that have a similar diagnosis, to learn & share

Hope shared is hope multiplied. I’ve made it my mission to empower others by sharing my story. Take control of your journey and get connected.

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