[ACT]IVATED NSCLC Patient and Care Partner Stories

From a Swallow Test to an NSCLC Diagnosis: Heather’s Story

From a Swallow Test to an NSCLC Diagnosis Heather’s Story from Patient Empowerment Network on Vimeo.

Transcript:

My name is Heather, and I was diagnosed with stage IV non-small cell lung cancer (NSCLC). My diagnosis came as a shock after going to my doctor due to a sensation of food getting stuck in my throat. It wasn’t the first time that I felt this in my throat, so my primary care physician sent me for a swallow study to further investigate. They also took a biopsy of a stomach polyp at this time, which turned out to be cancerous. 

I was surprised to learn I had cancer but was even more shocked after scans revealed that I had metastatic lung cancer. Of course, I know now that nonsmokers can get lung cancer too. With being a wife and mother, I wanted to get back to my life with my husband and three children. 

Further testing revealed that I had EGFR exon 19 mutation, which causes cancer cells to grow out of control. I was placed on the standard of care treatment of osimertinib (Tagrisso) that I received in three-month increments. Though I experience some treatment side effects, I continue taking the medication as prescribed to continue life with my family. I want to see my children grow up, and I’ll continue with osimertinib as long as possible. I also feel hopeful that clinical trial participation will continue to bring new effective NSCLC treatments to patients who eventually need additional treatment options.

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

• If you feel that something is not right with your health, go see your doctor as soon as possible.
• If you’re unsure about anything with your diagnosis, ask questions to ensure you’re getting all the testing that you need for optimal care.
• Get a second opinion and don’t rush to initial treatment, as it may disqualify you from a clinical trial.
• Clinical trials play a vital role in prolonging life and giving hope to further the number of FDA-approved drugs.

For me, these actions are key for staying on the path to empowerment.

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My Dad’s Lung Cancer Diagnosis Shridhar’s Care Partner Story

My Dad’s Lung Cancer Diagnosis Shridhar’s Care Partner Story from Patient Empowerment Network on Vimeo.

Transcript:

My dad Kisan was diagnosed with stage IV non-small cell lung cancer in September 2021. I’m his son Shridhar, and we live in Mumbai, India. My dad was diagnosed in his late 50s, and his symptoms began with severe headaches that were misdiagnosed by the general physician as symptoms of COVID-19. 

When he went to another doctor about the headaches, his symptoms worsened to the point that he couldn’t even walk. He then received an MRI the next day, and we were shocked to learn that the MRI showed he had 12 to 15 brain tumors, which suggested malignancy.

My dad was then sent to a neurosurgeon who suggested brain surgery for him followed by a PET CT scan to rule out malignancy. We then sought a second opinion from a medical oncologist, and he advised against having the surgery. However, he did recommend getting a PET CT scan done right away. After my dad received the PET CT scan, he received his cancer diagnosis and was referred to a radiation oncologist for SBRT for the brain tumors.

My dad also has an EGFR mutation, and lung cancer has progressed three times, but he’s been able to switch treatments each time and is doing well. His treatments have included radiation, followed by oral targeted therapy of afatinib, followed by chemotherapy and osimertinib, followed by radiation again and then chemotherapy. He then had a biopsy that found he had a MET mutation and is currently on targeted therapy and is doing well.

Even though he was given a prognosis of 6 months left to live by the radiation oncologist, he chose not to believe that and is living a normal life over a year-and-a-half later. I think it’s also important to note that my dad didn’t research on the Internet after he was diagnosed with NSCLC.

Our whole family has learned a lot on his cancer journey. Some of the things we’ve learned on his lung cancer journey include:

Educate yourself and ask your doctors questions. Learn about the available treatment options and discuss each one with your doctor. There’s nothing wrong with asking questions, and doctors expect patients and loved ones to have questions.

It’s always a good idea to seek a second opinion; especially in the cases of risky procedures like brain surgery. Seeking a second opinion is nothing to feel guilty about, and you or your loved one’s life depends on an accurate diagnosis.

Avoid negative doctors and don’t believe a death sentence in a cancer diagnosis. Just because a member of your care team says you don’t have long to live doesn’t mean it’s written in stone. My dad has defied the 6-month prognosis given by his radiation oncologist.

Ignorance can sometimes be bliss. Learning too much about your cancer may lead to a lot of worry, anxiety, and stress. Could it serve your health better for a care partner or family members to learn more about your cancer to ease some of your stress level?

Become comfortable with the idea of death no matter what age you are. Death is a natural part of life. Everyone dies sooner or later. Nobody is immortal. Worrying about death too much causes undue stress, and stress isn’t good for anyone.

As a care partner, these actions were key for staying on the path to empowerment.