Tag Archive for: lung cancer patient story

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

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

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

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

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

 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

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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 Guide | Download Resource Guide en español

See More from [ACT]IVATED NSCLC

Related Resources:

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

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

 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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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.

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

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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.

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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.

Lung Cancer: Gina’s Clinical Trial Profile

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Lung Cancer: Gina’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer survivor Gina was shocked after receiving her diagnosis at age 38. Watch as she shares her lung cancer journey including her diagnosis, treatment, clinical trial experience, and advice to other patients. In Gina’s words, “So what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial.”

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Gina:

My lung cancer story is probably not that unique. There are actually a lot of people that are just like me. I was 38 years old, a nurse at the peak of my physical health, and I was actually training for a triathlon. And I just developed a cough, and no one would take me seriously. As a nurse, I felt like something was wrong because I was losing weight, and I wasn’t trying, and eventually I had to self-pay for a chest X-ray, and the chest X-ray showed that I had something going on in my left lung, but they weren’t really sure what it was. So, I took that chest X-ray to the emergency room for exactly what they tell you not to — a cough, and thankfully, the ER doctor took me very seriously and finally that led to a stage IV incurable, inoperable lung cancer diagnosis. As a nurse, I knew the severity of, of the diagnosis, and I knew that also there was a possibility for some new drugs, and so I’m so thankful that my doctor in Memphis knew to do biomarker testing, he found out that I was ALK-positive (anaplastic lymphoma kinase). My very first thing that had to happen was I had brain surgery.

And I feel like I’m a very lucky girl to have survived all that I have, and I watched the pain in my husband’s eyes as I rolled back from brain surgery and the f as I woke up from that brain surgery. And then the next thing was my left lung was removed, and I remember seeing my two boys and as I rolled back, how they were afraid for me to lose my lung, something that they felt like I needed. And so again, we experienced so much joy as I came back from that lung surgery and eventually recovered, and then I remember the first day that I actually was able to run a mile again, and that was so incredibly exciting for me. So now I was diagnosed in 2015, and now it’s 2021 and through the years, I went through each targeted therapy and cancer outsmarted it, and so the targeted therapy failed me eventually. And each one lasted about a year or so, and I think that through these years, I kept thinking that science would keep up with me, and I kept riding that wave of science and research, and I was so thankful. But we knew that it was incredibly important to continue to fund research for lung cancer, because when it comes to lung cancer, it seems like even though it’s the number one cancer killer of men and women and anyone with lungs can get it. The funding for it is so low because there’s still a thought process that smoking is the cause of lung cancer, and while we know that there’s a lot of people that are just like me who have absolutely no risk factors, we know that research is incredibly important for this disease. So, fundraising for lung cancer research and through our group, ALKpositive.org was incredibly important for me.

I just kept hoping that the next thing would happen, but I finally ran out of the last targeted therapy, and so that’s when I started looking for a clinical trial. And right now, it’s not that easy to find a clinical trial. Within our group, we have some amazing volunteers and members who really work to put the clinical trials out there for ALK-positive patients and to make sure that we know that we’re aware of them. And so anyway, I had a great friend who helped me look through the clinical trials, and eventually I found the perfect clinical trial for me. But it required me to travel to Boston, Boston quite a bit, and so that was really difficult raising two young boys and having my husband, who is also working, not be available. It was just really not fitting with our family to be able to travel and be away from my family so much, so I kept looking for clinical trials, and I finally found one that was about 200 miles away. And it still requires me to leave my family about every two weeks or so, sometimes just for a blood draw, but I’m so incredibly encouraged, because we found out that the clinical trial of this combination drug is working, and we found that cancer though it had kind of spread everywhere in my body, in my brain and in my pancreas, and even around my pulmonary artery, all of the cancer had decreased by about 50 percent. So, I’m incredibly encouraged, and that’s where we are now in the journey, and we’re just going to hope that the clinical trial keeps working and that new options are coming down the pipeline for other lung cancer patients.

A clinical trial is something that has, my perception has completely changed about. I thought when I was first diagnosed, a clinical trial was kind of like being a guinea pig, and now I think that it’s more like being a pampered poodle. So, what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial. We know that sometimes clinical trials don’t always pan out to have the best thing, but I see over and over again that clinical trials for patients have a lot of science behind them, and it’s an opportunity for patients to try the latest and greatest.

If you’re considering a clinical trial as an option, the most important thing is for you to become informed, really make sure you understand some clinical trial, really understand what the expectations are of you, and make sure that you’re willing to do what’s required of the clinical trial, make sure, that also that it’s conducive to your lifestyle and to your family. I think those are the things that are the most important. A clinical trial is an opportunity for the latest and greatest, but you also have to make sure that you understand what’s required and make sure that you are okay with the requirements of the trial.

If I were to tell you how I’m feeling today, I would tell you that I’m feeling encouraged that I have so much hope for the future. Being a part of a clinical trial has…honestly, if I’m very, very truthful, it was scary at first. In fact, I even cried when I signed the clinical…the clinical trial consents. It was completely scary, but now that I’ve been into the clinical trial now about nine weeks, my last scans were really good and really promising, and so for me, I feel very, very hopeful for the future, and I’m hoping that this is a drug combination that can be brought to other patients and that they can all benefit from this clinical trial and from my experience.  

Lung Cancer: Donna’s Clinical Trial Profile

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Lung Cancer: Donna’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer patient Donna had a sub-optimal experience with her first treatment regimen. Watch as she shares her lung cancer journey, knowledge and benefits gained from a clinical trial, and her advice to patients seeking additional treatment options.

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Donna: 

I’m Donna, I am 68 years old, and I was diagnosed with lung cancer in 2012. 

When I was first diagnosed with lung cancer, I was put on a regimen of paraplatin (Carboplatin) and bevacizumab (Avastin) drugs. I received that for four or five months and did not do particularly well on it.  My body did not react well to those chemicals, my tumors, however, did respond as long as I was getting the drug. 

After we discovered that my tumors were not going to respond to chemo unless I was getting it all the time, my doctor suggested that I either go on another drug, chemo drug that was even harsher than what I had been on and did not have as good of results or suggested that I might do a clinical trial. I had been told that I probably only had about four months to live. And I decided that, number one, I was in no hurry to be sicker than I already was and number two, that if there was a way I could help future patients by participating in a trial that the trial was the way I wanted to go. I never ever assumed that I would benefit from being in a clinical trial, I was very uninformed about clinical trials. 

A clinical trial is a way that the pharmaceutical company or researchers test certain drugs. They will see if the drug works at all, it moves to humans and out of the laboratory, and everything doesn’t necessarily work the same way or on humans as it did in the lab. So…in the Phase III trial like I was in, by that point in time, they’re learning how in the fairly general population, how the drug is going to react, if it’s actually going to work, how much of a dose is the right dose, and how frequent it should be. The clinical trial is just to provide the information that’s needed to determine whether a drug should go forward into the general population or not.  

One tumor started growing again, and I chose to have radiation, which made me have to get out of the clinical trial. But after radiation, I went back onto the same drug that we had been testing through the clinical trial, because I had responded so well through it, and I stayed on that drug until from 2013 until 2019. And during in April of 2019, I quit having any kind of treatments, and so now I’m just monitored every four months to make sure that my tumors have remained stable and so far, so good. 

I would go into a clinical trial without hesitation if my tumors begin to grow again, my first consideration will be to get into another clinical trial, you are getting the cutting-edge drug. And not only that, while I was in the clinical trial, I had a researcher and I had my oncologist, I had a lot of people really following my health. I had multiple, far more scans done, which some people might look at as a negative, but they were really following me closely to make sure that my response was what it needed to be. You can get out of the clinical trial, you are not stuck in a clinical trial. So, if you get into it and you are either sick or if your tumors are not responding the way you hope they would, you’re not stuck in a clinical trial, and that’s an important thing to know. To me, there will never be another option that I will consider first, I will always consider the clinical trial first. And because I felt that the quality of care I got was higher, and it also saves you a lot of money because at least the drug itself is going to be provided at no cost. 

So that’s a huge consideration too. 

I would not be afraid to look into clinical trials, I would never accept a doctor telling me that there were no options for me. I have friends who had doctors tell them that they just didn’t think there was anything more that could be done, they needed to go into hospice. My advice is to look for a different doctor, because that’s not always true. And clinical trials are not necessarily easy to find, but I would certainly do my due diligence and look into whether there is one that’s good for you. And I would also strongly recommend that you immediately go through genetic testing so that you know what kind of mutations you might have, because that will drive the kind of clinical trial you might be wanting to get into, and also just the treatment in general.