Camila’s Stage 4 Non-Small Cell Lung Cancer Was Misdiagnosed for a Year

Camila was 24, healthy, active, and volunteering at a clinic in Puerto Rico when she coughed up a teaspoonful of blood in the middle of the night. It was her only symptom, but one that drove her to see a doctor. A chest X-ray showed a 4-centimeter nodule in her lung, but for a full year, doctors told her it was anything but non-small cell lung cancer. She was told it might be gastritis, an infection, or even a fungus. She was put on antibiotics and treatments that made her lose her hair because she was allergic to the medication. She says she was labeled as anxious, attention-seeking, or too young for it to be serious.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Camila kept pushing. She brought research papers to appointments, questioned if lab results were contaminated, and pointed out that her nodule had grown from four centimeters to six. When she was too exhausted to keep going, her mom stepped in and asked for a PET scan, which can help flag cancer cells that act differently; it came back positive. Even then, her doctors suspected pneumonia. It took a surgery she was told was 99.9% likely to rule out cancer to finally confirm it: non-small cell lung cancer, stage 2B.

Eight months into remission, she coughed up blood again. A new care team found a recurrence and restaged her at stage 4. Her team ran biomarker testing, which hadn’t been done earlier. It showed a KRAS G12V mutation and PD-L1 below 1%. This low PD-L1 score, a protein biomarker that cancer uses to hide from the immune system, likely explains why the immunotherapy didn’t work. There are currently no targeted therapies for the KRAS G12V mutation. Camila then went through five sessions of radiation therapy, six more cycles of chemotherapy, and is now on a different type of targeted therapy that cuts off the blood vessels to the tumor, which she gets every 21 days for maintenance.

Today, Camila has no evidence of disease (NED). She creates lung cancer content in Spanish, so other patients do not feel as lost as she did. Camila is waitlisted at a medical school in Puerto Rico, where she wants to become an oncologist who not only treats but also advocates for her patients, being a lung cancer patient herself.

Watch Camila’s video or read the edited transcript of her interview to find out more about her story:

• A single teaspoonful of blood coughed up once was Camila’s only symptom in an otherwise young, healthy, active adult. After a year of being dismissed, she finally got answers. A symptom that seems small and happens only once is worth getting checked out, and often requires extra self-advocacy to feel seen and heard.
• If having children is in your future, always ask about fertility preservation before starting chemotherapy; don’t assume it will be offered. Camila’s oncologist never brought it up, telling her that saving her life was the priority. Today, she doesn’t know if she will be able to have children.
• Camila says it was harder to manage the healthcare system and the disbelief around her age than to manage the disease itself. When a pharmacy tried to charge her a $35 deductible her plan shouldn’t have required, she refused to pay and they dropped it.
• Camila describes herself as soft spoken, passive, and calm. Speaking up to her doctors felt so out of character, but learning to advocate for herself has now become one of her strengths, and it is driving her back to medical school.

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Camila’s Diagnosis Facts

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This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

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Meet Camila: Diagnosed with non-small cell lung cancer at 25

My name’s Camila, I’m from Puerto Rico, and I was initially diagnosed at 25 with stage 2B non-small cell lung cancer.

Coughing up blood: The first sign that something was wrong

I was volunteering at a clinic and had come off my shift. I felt a little bit tired, but I chalked it up to the fact that I was working, watching patients, and was also outside. During the night, I randomly coughed up a teaspoonful of blood. That’s where everything started.

I hadn’t had any other symptoms up to that point. I’ve always been healthy, active, involved with volunteering, and living a normal life for a 25-year-old. We had to rush to find the nearest doctor, someone who could give me an order for a chest X-ray, to see what it was and if I had hurt myself. When I went in to get the X-ray order, that’s when chaos started.

I experienced age discrimination because the doctor thought that I probably hurt my mouth brushing my teeth or something, or it was some kind of gastritis. I couldn’t remember if I did something to cause the blood to come out. After having the chest X-ray, I went to my primary care doctor. He read the results and there it was: a small 4-centimeter nodule.

He said, “Listen, you need to go to a pneumologist to get evaluated.” (Editor’s Note: A pneumologist is commonly known as a pulmonologist, a doctor who specializes in diagnosing and treating conditions of the respiratory system.) I go to the pneumologist, who orders a chest CT, and the mass is still there. He didn’t think it was a tumor, so he started putting me on different treatments and antibiotics. I ended up losing my hair and developing serious side effects because I was allergic to the medication. I still am. It was horrible, because it was a back and forth of trying to prove myself, finding a diagnosis, and getting the right treatment.

In all that time, a year went by. Everything started when I was 24. My mom questioned my pneumologist and asked him to give me an order for a PET scan, which came back positive. I lit up like a Christmas tree and even then, they didn’t believe it was lung cancer. They thought it was some kind of pneumonia, like a fungus. We had to pay for that out of pocket, because the doctor wrote the note and all the diagnosis codes incorrectly. It was still during the COVID pandemic, when we were transitioning back from lockdown, so it was horribly difficult to find somebody who could do things for you.

We found a lung surgeon and he decided to operate on me. He tells me, “This is probably 99.9% not cancer, and only 1% that it is.” When I went in for surgery, everything went well. After I came back, that’s when he told me, “Camila, I’m sorry, but this is lung cancer. We found a tumor. It came back positive for non-small cell lung cancer. We also think you might have metastatic cancer. It may have spread.”

I was relieved at that point, because I finally had a diagnosis, but I didn’t know it would cost so much and that I would struggle so much to get there. People labeled me as crazy, attention-seeking, or anxious, or that perhaps because of my medical background, it was anxiety induced by my studies.

It was shocking at first, because I felt like I was pushed into an entirely different dimension. It was new for me. I was the first in my family to get cancer. We heard the word cancer for the first time the day that I was diagnosed.

“This isn’t normal”: The fear behind my first symptom

I was literally shaking. In my mind, I went, “Oh, this is not normal.” I immediately called my mom. Our mind blocks things sometimes, but I think I cried because I knew this was serious. I also thought, “This could be COVID or some kind of virus or bacteria.” Lung cancer actually went through my mind, but even I disregarded it because of my age. I don’t fit the typical diagnostic pattern for lung cancer. It felt so surreal. It didn’t feel like it was my blood. I felt like I wasn’t in my body at that time, like I was observing it from another realm, if you could put it that way.

A year of being dismissed: “I felt like I was going crazy”

I felt crushed. It’s not the same to have a diagnosis and be treated for something versus not knowing what it is. I struggled with my mental health that year because of the anxiety of not knowing. I couldn’t sleep. I lost my hair completely, so I was bald without even going through chemotherapy. I felt like I couldn’t trust myself, like I was going crazy, because it was suggested all the time that I was probably faking it or that I was too young.

If I didn’t keep pushing, I don’t know where I would be today. I wasn’t in the right spot mentally to fight with so much that was going on in my life at that time and trying to seek some normalcy in between. That time was rough. I was in anguish.

Bringing research papers to appointments: How I learned to advocate for myself

One of the things that helped me most was my knowledge. I had already finished a master’s degree, which was the equivalent of a first year of medical school, so that knowledge helped me to keep researching. I went online and started reading research papers. Every time I would go to a doctor’s appointment, I would bring him new things. I would ask him, “Oh, doctor, but don’t you think it might be this?”

I would also question results. For example, one time we had a negative. He made me provide some sputum samples; sometimes they use them to look for bacteria. They came back contaminated with a lot of bacteria that were, from my knowledge, not normal. They were usually found in hospitals and at that time, I hadn’t been in a hospital. I would question him, “Hey, this is usually a pathogen that’s located in hospitals. I haven’t been in a hospital. Do you think this might have been contaminated? I don’t think we’re going in the right direction here.”

After the imaging came back a couple of times, I was like, “Hey, the radiologist is saying that this grew from four centimeters to six. Shouldn’t we be alarmed?” I would constantly try to plant the direction he should take it. Unfortunately, most of the time, he didn’t listen. Thankfully, my mom stepped in for me, which was key because I was so exhausted by the time I had my PET scan. I wasn’t in the right space to deal with so much, especially because it wasn’t normal. I knew it wasn’t normal. Something in my gut told me that I had to keep pressing.

I started to develop the strength to raise my voice. When you hear me, I’m soft-spoken, passive, and calm, so it was so out of character for me to speak up and challenge. Now, it’s my strength.

Navigating cancer care, Medicaid, and health insurance in Puerto Rico

I believe we have the brightest minds available here, so I wanted to complete my treatment here. Also, I didn’t have the means. Right now, I’m on Medicaid because it’s the best coverage that cancer patients can have. We mostly get everything covered. We still have to fight for some things.

It’s rough out here, as Puerto Rico is a little bit behind in the ways the system operates and in communication across the island. I’m from the south of the island and all my doctors are in the north, so I travel about an hour and a half to get treatment. The biggest problem here is dealing with insurance companies and medical personnel who haven’t been trained on how to process my healthcare plan coverage.

My case is unique because I started at 25 years old. Even when I would get treated, I would face bumps because people would not believe me because of my age. During my initial treatment, my chemo did not cause my hair to fall out, so I had to fight with the image people have of how a cancer patient should look versus how a cancer patient can look. The colors of the rainbow won’t cover everybody.

It was harder to manage the system — and it still is — than it is to manage the disease itself, which was so crushing. I was so bright-eyed and bushy-tailed. I didn’t know I would face so much trouble. I thought that cancer itself was a big word, so everything would be easy and would be open for you.

When I got my first chemo, my plan was supposed to cover it. I didn’t have to pay any deductibles on any treatment. I received a call from the pharmacy that dispenses my meds — I joke with my mom that it was worse than a boyfriend because they call almost every day — and they wanted to charge $35 as a deductible for my meds.

I was tired that day, or I was in pain. It was so close to my second surgery. I said, “No, I’m a cancer patient. I don’t have money to pay you, and I’m not going to pay you $35. You’re not going to charge me that amount.” I don’t know how exactly I phrased it, but the person gave up and didn’t charge me anymore.

I know people who have to pay thousands a month. People are used to getting stepped on so much that they stop fighting and let the system overpower them. Sadly, that’s what’s happening in Puerto Rico. It’s not that we don’t have the resources. It’s that we have a system that is oppressing its patients, literally.

From stage 2B to stage 4: A recurrence doctors almost missed

It started as stage 2B. During the first surgery, they were able to take out part of the lung where the tumor was, but they didn’t get clean margins. I had to go in for another surgery three months later to have the right upper lobe of my right lung removed.

Then I went for treatment. I get chemotherapy. I started immunotherapy. What happened is that immunotherapy failed because my biomarker was not compatible with that treatment. I was put on a regimen that was normally used for that stage in non-small cell lung cancer. Since I’m KRAS G12V, there’s no targeted therapy. They considered my lung cancer to be non-actionable, so I was put on something broad and non-specific.

I only lasted in remission for eight months. Then the coughing up of blood started again. I thought, “Oh no. This is cancer again.” I was rushed into the ER and my CT scan came back positive for another tumor. My oncologist didn’t think it was cancer, which was mind-blowing, because it’s as if she deleted my entire medical history from her brain or didn’t look at my file completely.

When I found my new team, thanks to my pneumologist, I learned what a bronchoscopy was. I had never gone through that before. Then I found a new oncologist, which is when I learned that it was oligometastatic. Usually, lung cancer spreads fast. Thank God it has been controlled. [Editor’s Note: According to UT MD Anderson, oligometastatic cancer describes an intermediate stage of cancer between localized and widely spread disease, classified as a subclass of stage 4 cancer, and means cancer has spread to fewer than five sites in the body.]

Right now, there are no cancer cells in my body, so I’m in remission. With my recurrence, I was classified as stage 4, but it’s because they haven’t been able to put me inside a box, as my case has been so strange. I haven’t met anybody in my same age group here in Puerto Rico who has the same cancer as I do.

The isolation of being the youngest lung cancer patient I know

It’s extremely isolating. I’m a homebody. I’m not like my friends. I’ve always been different. Not having somebody you can relate to or somebody who looks like you on screen or in the media has been hard. I didn’t know how to navigate the road. I didn’t have a map. I didn’t have somebody to look up to, somebody who would tell me, “Hey, you should do it this way,” or, “You can do this and this and that.” I had to learn everything by myself and do everything by myself.

I’m grateful that I have the best support system in my parents, my family, and my closest friends, the few who stuck around. As you know, most of us go through a period where people leave and there’s a massive jumping off the ship situation going on.

It was frustrating and it still is, because I had to put a lot of things on hold. I haven’t been able to finish my studies in medicine. I haven’t been able to do a lot of things that normal people do. I feel like I’m 10 years behind everybody else. It’s been hard.

The only thing that helped me was the online community. I’m still new to it, but it’s been so welcoming. People are so kind. It’s so different from what I experience on a day-to-day basis. I still find my little angels, as I call them, who are other cancer patients, even if they have other types of cancer. They have been so kind and looked after me.

Therapy, faith, and treating cancer as a whole-body disease

Not only was I told that it was lung cancer, but I was told that I had six months to live because they thought it had spread to other places in my body. The only way I could hold all this huge mess and accept what I was going through was through therapy and my faith.

I’ve been with a therapist since day one. For me, managing cancer as a multisystem disease has been the key, as cancer affects everything in your life. I take care of my body, mind, and spirit, so I can heal.

I have a therapist whom I see monthly and talk it out. At first it was weekly and then it became at least once a month. I had somebody tell me that it was okay to feel the way I was feeling, because I had a lot of anger, frustration, and sadness. It was a dark place. I didn’t want to even move from my bed during the first month I was going for chemo, both the first and second time. Having that covered has been extremely helpful.

I love to read, especially fantasy and dystopian. I’m a huge fan of “The Hunger Games.” I finished “Sunrise on the Reaping” in four days. I haven’t been able to touch anything yet.

Having my family was important. My dad would sit with me and watch TV until I would go down. I’m a documentary fan, so we would watch documentaries. There was the old “Star Wars.” There were a lot of movies and TV shows coming out then; “The Mandalorian” was a huge hit at that time. I had a lot of things that I could look forward to, even if they were small.

I also connected with the few friends who have stayed since day one. I try to focus, as my psychiatrist says, on the day-to-day, taking everything one day at a time. It’s the only thing I’ve proven that works for me. If I start looking to the future, that’s when I notice things get shaky. I might get irritated, angry, or sad. So I take it one day at a time.

Undergoing two surgeries, chemotherapy, immunotherapy, and radiation

I had the first surgery in September 2022. Then in December 2022, I had the second surgery; I spent Christmas in the hospital, which sucked. Puerto Rico Christmas is something that you have to celebrate. It lasts like three or four months over here, so it was hard.

In January 2023, I started my first chemo cycles. From January to April, I had four cycles of chemo and immunotherapy. It was the two chemo drugs plus immunotherapy. After that, I stayed only on the immunotherapy for about a year or so. I only reached about 12 cycles when I coughed up blood again.

I went through a bronchoscopy and more scans. I had done next-generation sequencing (NGS), which I had never had done before. That’s when my oncologist found the other target, PD-L1, which was low at less than 1%. Unfortunately, that’s why my immunotherapy didn’t work.

I never had a chemo port until my second time. It was never offered, nor was fertility preservation. My first oncologist said that it wasn’t necessary and that saving my life was the priority. Right now, I don’t know if I’ll be able to have kids because of that. After they placed my chemo port, I started my six cycles of chemo.

This chemo was intense. He wanted to go as strong as he could in his approach. That’s when I lost my hair again, completely, but this time, I lost every single hair on my body. It was intense. It was six cycles with one cycle every 21 days. I experienced a lot of side effects. I gained a lot of weight, which I’m still trying to lose. I’ve lost a lot actually, because I’ve been trying to work on that.

Before chemotherapy, I went through stereotactic body radiotherapy (SBRT). I had five high-intensity sessions, which I think made chemo harder than it had to be. After chemo, I started on targeted therapy, which is what I’m currently on. It targets the blood vessels of the tumor, so that they break and the tumor dies. Every 21 days, I get my maintenance therapy. And there’s no evidence of disease.

Having no evidence of disease but still undergoing lung cancer treatment

It doesn’t feel real, especially for the type of cancer that I have. Lung cancer is the number one cancer killer. (Editor’s Note: According to the American Cancer Society, lung cancer is by far the leading cause of cancer death in the US, accounting for about 1 in 5 of all cancer deaths. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined)

Fast forward to now, being able to survive and be as healthy as I am, even with more treatments, it feels unreal, but I’m so grateful. Sometimes it gets heavy because I experience survivor’s guilt. I’ve seen a lot of people pass away, unfortunately, so I’m grateful for every day. I know that this disease isn’t going to knock me down or take me out, so I’m excited for what the future brings.

I’ve been trying to forcefully push myself to come back to life again, as I put it. I lost my spark and I’m trying to get it back. It feels amazing being able to drive again, even if it’s just to go to the grocery store or fill up my gas tank. The little things bring me the most joy.

I applied again to med school and I’m currently waitlisted. I’m praying I get in. It’s been an uphill battle, trying to break the glass ceiling and make people see the reality that people like me exist. I’m trying to create the space that I belong in because it’s not the same thing to reclaim it. It’s been eye-opening.

Creating lung cancer content in Spanish so no one feels alone

When I’m asked about creating content in Spanish, my why is that I don’t want anybody else to go through the hell that I went through. I don’t want them to feel lost. I want to be the face and the voice that people could see and listen to and know that they’re not alone.

Things like this happen, but it’s going to be okay. I’ve been at this fairly recently, but the amount of feedback and the stories that I’ve heard and read have been shocking. I never thought I would be receiving so much attention or that my story would be impactful. I was gaslit and made to feel unimportant, like I was another number and simply another case file.

I have people who have been recently diagnosed with lung cancer tell me that they feel calmer after my story touched them. They feel at peace knowing that everything is going to go well. That’s one of the comments I received. People thanked me for sharing my story. They didn’t feel alone after losing their young daughter to cancer, for example, because people didn’t listen to her. That happened to one of my followers who shared that story with me.

I see people from other countries, like from Venezuela. I have a doctor who I’m helping to get meds because she doesn’t have access because of the earthquakes right now. She has lung cancer too. I never thought I would reach other countries, like Mexico, Spain, and Venezuela.

It feels like a full-circle moment, which is part of the legacy that I want to leave. If something were to happen to me, I would like to leave photos and videos that people could go back and listen to, and think, “Hey, I’m going to try, because she tried,” or, “Hey, I’m going to keep fighting, because it’s possible. She did it, so I can do it too.”

Going back to med school

It’s my driving force, because it lit a fire inside of me. I was so shy and reserved; I fight for everything now. Because I can feel the frustrations as a patient, I can connect with other patients in ways that I couldn’t do before I was diagnosed with cancer. I didn’t understand how other people felt. I was naïve and ignorant. In the cancer world, only another cancer patient knows what a cancer patient goes through. And that’s my why.

I believe in being a doctor who not only treats, but facilitates, especially in oncology. I want to be an oncologist. I don’t want my patients to struggle so much dealing with their healthcare plan. Now I have the tools to fight back against insurance companies.

Recently, my dad got diagnosed with prostate cancer. If I hadn’t known from my experience how to navigate the healthcare system, I don’t know what would have happened to him. Prostate cancer is treated so lightly here in Puerto Rico, even though its incidence is growing at an alarming rate.

I could put these tools to use and make a difference when you know the system inside out and have been through things yourself versus having zero background. That’s what makes me not want to give up. Even if schools make it difficult for me, even if academia or medicine is not ready for me, I know that I have to do this. I have to continue to work as hard as I can, even if it costs me years of my life, because it probably will. I’m alive today, so I want to make it count and make it worth it. I have to give back what I’ve learned.

My message

I hope that whoever watches my video or learns about my story leaves with more peace and a bit of spark in them. I want to inspire people and help them. That’s the only thing I want to do.

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This interview has been edited for clarity and length. The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story. This content does not replace professional medical advice.

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