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

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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How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities?How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


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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Combat and Courage | A Veteran’s Lung Cancer Battle

Combat and Courage: A Veteran’s Lung Cancer Battle from Patient Empowerment Network on Vimeo.

Derrick, a resilient veteran and lung cancer survivor graciously opens up about his journey, detailing his experience from initial screening and diagnosis through to treatment. He candidly discusses crucial aspects of lung cancer care for veterans and offers insights drawn from his journey. In Derrick’s own heartfelt words, he emphasizes the importance of empowerment through knowledge, stating, “It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.” 

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What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

Persistence in the Face of Dismissive Healthcare: One Patients’ Journey

Persistence in the Face of Dismissive Healthcare: One Patient’s Journey 

What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

Derrick:

Being ACTIVATED in your lung cancer care is a necessity, take it from me. 

After my friend who I served with in Iraq was diagnosed with lung cancer, I knew that it was time to get  serious about my lung cancer screenings at the Veterans Affairs Hospital. As a lung cancer survivor, I want to share my story as a Black military veteran. Lung cancer is the leading cause of cancer-related death in veterans, and Black veterans are less likely to complete lung cancer screening.  However, a recent VA report showed that Black veterans receive equal or superior care through VA hospitals in comparison to Black patients in the general population.

I was already 52 when I received my first lung cancer screening. I only learned later that I should have started receiving screening at age 50 at the VA. It was winter when I went in for my screening. I’d had a nagging cough but didn’t think twice about it. It was a winter season with multiple respiratory viruses circulating at the time. I was shocked when the radiologist informed my doctor that they found a spot on one of my lungs. I felt like I wasn’t old enough to have cancer.

I was really nervous about it beforehand, but I had surgery to remove the tumor from my lung. I felt fortunate to have my friend I served with to talk with about lung cancer, but I know not everyone is this fortunate. I’m sharing my story in the hopes that it will help other veterans. I continue to receive regular scans of my lungs and urge other veterans to start your lung cancer screening on schedule. Ask your doctor or VA administrator if you’re unsure about when you should start. It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.

There have been a lot of recent advancements in lung cancer diagnosis and treatment. I hope that sharing my perspective will make a difference for other veterans. We served proudly for our country, and we deserve the best lung cancer screening and care as part of the respect that we earned.

Stay [ACT]IVATED with these tips. 

  1. Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  2. Ask your care team questions to learn about treatment options and what to expect during and after treatment.
  3. Ask if a clinical trial may be a potential treatment option for you.
  4. Stay abreast of lung cancer treatment options and research advancements

Whether it’s combat in war or fighting cancer, no matter who you are, being proactive is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente from Patient Empowerment Network on Vimeo.

Wanda fue diagnosticada con cáncer de pulmón de células no pequeñas (CPCNP) en la flor de su vida. Se defendió ferozmente incluso después de enfrentar inicialmente una atención médica desdeñosa. Wanda comparte la importancia de “no equiparar una sentencia de muerte con un diagnóstico de cáncer solo porque un miembro de su equipo de atención dice que no le queda mucho tiempo de vida”. Ella comparte valiosas lecciones aprendidas de su viaje por el cáncer de pulmón y la importancia de escuchar su intuición y su cuerpo.

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What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

Mi nombre es Wanda y me diagnosticaron cáncer de pulmón de células no pequeñas cuando tenía poco más de 40 años. Soy una mujer negra y, como muchas otras, mi camino hacia el diagnóstico no fue sencillo. Mis síntomas empezaron sintiéndome fatigada y como si fuera a desmayarme. Mi intuición me dijo que algo iba mal y me hice pruebas para diagnosticar el problema. Me detectaron un nódulo en el pulmón, pero el médico no me dio importancia a pesar de que yo conocía bien mi salud y posibles problemas de salud.

Solicité un escáner para investigar más a fondo el nódulo pulmonar, pero mi médico desestimó mi preocupación y no quiso hacerme la prueba. Después de que me hicieran una tomografía por emisión de positrones (PET), el especialista pulmonar que la revisó desestimó mis preocupaciones y decidió hacerme otra en 6 meses. Durante los seis meses siguientes, mis síntomas siguieron empeorando: fatiga, pérdida de peso y sibilancias.Sabía que tenía cáncer de pulmón y me sentía atrapada porque tenía que esperar a la exploración de seguimiento. 

Cuando por fin recibí el diagnóstico de adenocarcinoma, sentí una mezcla de alivio por tener razón y rabia porque mi cáncer había empeorado en los últimos 6 meses. Después de dos operaciones para extirparme los ganglios linfáticos y una parte del pulmón, estoy bien y me alegra compartir mi historia para ayudar a otras personas que puedan sentirse descartadas por sus médicos.

Algunas de las cosas que he aprendido en mi lucha contra el cáncer de pulmón son: 

  • Infórmate y haz preguntas a tus médicos. Infórmese sobre las opciones de tratamiento disponibles y coméntelas con su médico. Los médicos esperan que los pacientes tengan preguntas.
  • Pregunte sobre las opciones de ensayos clínicos, si es necesario viajar y si habrá gastos que usted o alguien tendrá que cubrir en su nombre. Pregunte si existen programas que puedan ayudarle con los gastos no cubiertos. 
  • Siempre es buena idea buscar una segunda opinión. Buscar una segunda opinión no es algo por lo que debas sentirte culpable, y tu vida o la de tu ser querido depende de un diagnóstico preciso.
  •  Escuche a su intuición y a su cuerpo. Yo sabía que algo iba muy mal, pero mis médicos me ignoraron durante meses antes del diagnóstico.
  • Evite a los médicos negativos y no equipare una sentencia de muerte con un diagnóstico de cáncer. Que un miembro de tu equipo médico te diga que no te queda mucho tiempo de vida no significa que esté escrito en piedra.

Estas acciones fueron clave para seguir en mi camino hacia el empoderamiento.


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Persistence in the Face of Dismissive Healthcare: One Patient’s Journey

Persistence in the Face of Dismissive Healthcare: One Patient’s Journey from Patient Empowerment Network on Vimeo.

Wanda was diagnosed with non-small cell lung cancer (NSCLC) in the prime of her life. She fiercely advocated for herself even after initially facing dismissive healthcare. Wanda shares the importance of “not equating a death sentence with a cancer diagnosis just because a member of your care team says you don’t have long to live.” She shares valuable lessons learned on her lung cancer journey and the importance of listening to your intuition and body.

Download Resource GuideDownload Resource Guide en español

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What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

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Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

My name is Wanda, and I was diagnosed in my early 40s with non-small cell lung cancer. I’m a Black woman, and like many others, my path to diagnosis wasn’t straightforward.

My symptoms began with feeling fatigued and like I might faint. My intuition told me that something was wrong, and I had testing done to help diagnose what the issue might be. A nodule was found in my lung, but I felt dismissed by my doctor even though I was knowledgeable about my health and potential health issues. I requested a scan to further investigate the lung nodule, but my doctor dismissed my concerns and wouldn’t run the test. After I eventually received a PET scan of my lung, the pulmonary specialist who reviewed my scan dismissed my concerns and decided to do another scan in 6 months.  

Over the next 6 months, my symptoms continued to worsen with more severe fatigue, weight loss, and wheezing. I knew that I had lung cancer and felt trapped that I had to wait for the follow-up scan. When I finally received my diagnosis of adenocarcinoma, I felt a mixture of relief that I was right and anger that my cancer had worsened over the last 6 months. After two surgeries to remove lymph nodes and a portion of my lung, I’m doing well and am happy to share my story to help others who may feel dismissed by their doctors.

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

  • Educate yourself and ask your doctors questions. Learn about the available treatment options and discuss each one with your doctor. Doctors expect patients to have questions.
  • Ask about clinical trial options, whether travel is required, and if there will be expenses that you or someone will need to cover on your behalf. Ask if there are programs that can help you with uncovered expenses.
  • It’s always a good idea to seek a second opinion. Seeking a second opinion is nothing to feel guilty about, and you or your loved one’s life depends on an accurate diagnosis.
  • Listen to your intuition and body. I knew something was seriously wrong but was dismissed by my doctors for months before my diagnosis.
  • Avoid negative doctors and don’t equate a death sentence with 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.

These actions were key for staying on my path to empowerment.


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