Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Lindy was diagnosed with stage 4 colon cancer when she was two months postpartum at age 34. During her pregnancy, Lindy experienced severe abdominal pain, changes in bowel movements, blood in her stool, and significant discomfort, all of which she initially attributed to pregnancy. Unbeknownst to her, these symptoms were indicative of colon cancer, which was eventually discovered during a routine full-body MRI for a previous benign brain tumor and spinal tumor.
Doctors identified malignant cancer had spread to her colon, lymph nodes, liver, and lungs. The shock of her diagnosis came at a time when Lindy was navigating the challenges of new motherhood. She took an active role in researching her diagnosis, and while the news was overwhelming, it helped her process the information before meeting with her oncologist.
Lindy’s treatment began swiftly with chemotherapy in January following her December diagnosis. Although surgery was not considered an immediate option due to the cancer’s spread, chemotherapy has been her primary treatment. She transitioned to maintenance chemotherapy, as her body responded well to the treatment with minimal side effects. While she still experiences some numbness from neuropathy, she considers herself fortunate for not facing more severe symptoms.
Throughout her experience, Lindy has been grateful for her medical team, who never dismissed her concerns despite her young age. While colon cancer is typically seen in older individuals, Lindy’s case is part of a growing trend of younger people being diagnosed with the disease. This has prompted her to encourage friends and family to undergo early screening.
Lindy is realistic about her prognosis, understanding that while her cancer is not curable, it is treatable, and she remains hopeful for potential advancements in treatment. She has made practical preparations for the future while focusing on enjoying life with her son and husband. Lindy’s strong support system has helped her navigate both motherhood and cancer.
Lindy emphasizes not spiraling into despair. Instead, she encourages others to seek out a supportive care team, possibly including palliative care to manage pain symptoms, and to focus on living in the moment. Lindy’s outlook remains positive, bolstered by the progress she’s made and the hope for future treatment developments. Despite the challenges, she is determined to live as fully as possible, enjoying time with her loved ones.
Name: Lindy A.
Diagnosis:
Colon Cancer
Staging:
Stage 4
Symptoms:
Blood in stool
Changes in bowel movements
Pencil-thin stool
Severe abdominal pain
Loss of appetite
Rapid weight loss
Anemia
Fatigue
Treatments:
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Found the cancer as a result of family history & early colonoscopy; discovered Lynch Syndrome after genetic testing Treatment: Partial colectomy
NSCLC Biomarkers Jill Feldman and Dr. Lovly Interview
Understanding Biomarkers in Lung Cancer
Discussion: Jill Feldman & Dr. Christine Lovly
Edited by: Katrina Villareal
Jill Feldman lost her mom, dad, aunt, and two grandparents to lung cancer, so she researched the disease and advances in treatment and became an advocate to help save lives from the #1 cancer killer in the country. And then her life completely changed again with her own diagnosis.
Her mission now is to get that research to every cancer patient out there, including topics like the importance of lung cancer biomarkers.
The long-time lung cancer patient and advocate sits down with Dr. Christine Lovly, one of the top lung cancer specialists in the U.S., to ask the questions she believes will help change lives.
Thank you to Lilly for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
What we try to do as doctors is figure out what happened to make a normal cell in your body become a tumor cell.
Dr. Christine Lovly
Introduction
Jill Feldman: I’m a lung cancer patient and advocate. I was diagnosed with lung cancer in 2009. I’ve had quite a journey with different treatments, but thanks to research, I’m sitting here today.
We are joined by Dr. Christine Lovly, a physician-scientist at Vanderbilt-Ingram Cancer Center. Her clinical practice and research focus primarily on the care of patients with lung cancer.
Dr. Christine Lovly: I’m so grateful for the opportunity to connect and have this conversation.
Jill Feldman: Dr. Lovly, when you started, lung cancer wasn’t where it is now. Hope wasn’t associated with and wouldn’t have been used in the same sentence as lung cancer, so that’s what makes it even more remarkable.
Dr. Christine Lovly: We have unbelievable advancements in lung cancer. It’s incredible how fast the field is moving right now and that’s good because the need is high. This is the number one cause of cancer-related deaths in the US. Anyone is at risk for lung cancer.
What are Biomarkers?
Jill Feldman: We both have had a front-row seat to the evolution of biomarkers, which has led to this revolution of advancements in research and treatment, allowing patients to live longer and better.
Biomarkers can be found in tissue, blood, and other bodily fluids, and they’re used to diagnose a disease to determine how aggressive a disease is. Sometimes they can predict how the cancer will respond to treatment, but when we talk about lung cancer, what is biomarker testing? What are biomarkers and why are they important?
When we say biomarker, we’re saying, how did the DNA, the RNA, and the proteins change?
Dr. Christine Lovly
Dr. Christine Lovly: Nobody wants to be in a cancer clinic, no matter how lovely the people you meet, like your doctors and nurses. Nobody wants to be there. We all recognize that and have huge empathy for that. When you’re in a cancer clinic, you immediately start to learn that there’s a whole new vocabulary associated with the world of cancer and one of those words is biomarker. Let’s relate it to something that makes sense in common everyday life before we get into the science.
When you build a house, you need a blueprint, which is a map of how the house is going to be built. A blueprint is how architects design the house and how they figure out all the different components, like the roof, walls, rooms, plumbing, etc.
The cells in your body, including tumor cells, are very similar to that. There is a map of how those cells are made and how they act in your body. Those maps are the DNA, RNA, and protein. You need to have a blueprint to build a house. You need to have DNA, RNA, and protein to build a tumor cell.
Biomarkers look at those elements: the DNA, the RNA, and the protein. They are the architecture of the tumor cell. What we try to do as doctors is figure out what happened to make a normal cell in your body become a tumor cell. Cancer is our bodies gone wrong. It’s not something foreign. It’s our body where the blueprints have changed. When we say biomarker, we’re saying, how did the DNA, the RNA, and the proteins change? And can we detect those changes to help us pick a better therapy for our patients?
Jill Feldman: It’s hard for people to grasp that. I like that you use an analogy that everybody can relate to and emphasize the difference between inherited or germline biomarkers that are present in our DNA and all of the cells in our bodies and what’s called acquired or somatic mutations, which are biomarkers found only in cancer. They cannot be passed down to your children that we know of now. We are looking at some inherited biomarkers. We’re doing research in that area for lung cancer. We are not there yet, so the biomarkers we are talking about are the DNA, the RNA, and the protein of the cancer cell.
Dr. Christine Lovly: Exactly right. In the overwhelming majority of cases, the biomarkers that we’re looking at are something that’s changed during your lifetime and not something you’re born with. Something changed to make a normal cell become a tumor cell. The biomarkers we measure are not something that you’re born with and not something that you pass on to your children and grandchildren, but something that’s changed for a variety of reasons, some of which we don’t understand honestly, that’s caused a normal cell to become a tumor cell.
The Importance of Biomarkers in Lung Cancer
Jill Feldman: How do you test for biomarkers and why are they important in lung cancer specifically?
Dr. Christine Lovly: We’re not doing all these tests because it’s an area of academic interest. We test for biomarkers in tumors because it helps us pick the right therapies. For example, if you have biomarker A, then you get drug A, or if you have biomarker A, you don’t get drug B.
It’s important when we talk about precision medicine or personalized medicine. Lung cancer biomarkers are at the heart of driving personalization of care. We’re talking specifically about cancer, but other areas of medicine have biomarkers to help select therapy as well, so this is not exclusive to cancer.
In the context of cancer and lung cancer specifically, we’re looking for biomarkers because they help us pick the right therapy for our patients to deliver personalization of care and that’s important. There are decades of experience teaching us that we can become more refined in how we treat lung cancer when we look for these biomarkers. The goal is to put more treatment options available on the table for our patients because none of us want to say that there are no options for treatment.
Biomarkers are at the heart of driving personalization of care.
Dr. Christine Lovly
We want to be able to deliver treatments in the most precise way based on the characteristics of the tumor. That’s the goal, but there are other circumstances where biomarkers play a role. Sometimes we use them to help with prognosis, which is not the same thing as picking a therapy. But for the context of this discussion, we’re going to say we’re looking at biomarkers because we’re trying to pick a therapy for our lung cancer treatment algorithms.
Testing for Biomarkers
Dr. Christine Lovly: There are different ways to test for biomarkers and this area is evolving as well.
Let’s start with the tumor biopsy. When patients get a diagnosis of lung cancer, we have to do that biopsy by looking at whatever the abnormality is, like a mass in the lung. They take a piece of it and look at it under the microscope.
The traditional way is to look for biomarkers in the tumor specimen. You grind up the tumor and extract the building blocks: the DNA, RNA, and protein. There are ways to measure each one of those building blocks.
More recently, there’s been an explosion of technology where we can sometimes find circulating pieces of tumor in the blood. The majority of the time, we’re talking about pieces of circulating tumor DNA in the blood. This is a very rapidly emerging and evolving field. The technology is changing monthly to refine technologies for what we call circulating tumor DNA or ctDNA.
It does not replace having a tumor biopsy. A tumor biopsy is still necessary. It can help us to find the biomarkers, but not every patient has circulating tumor DNA. If we find it, it can help us make treatment decisions, but it is not exclusive. Tumor testing and blood testing to find ctDNA in the blood are complementary and not exclusionary of each other.
Not Everyone Has a Biomarker
Jill Feldman: I want to touch on a very sensitive topic in the community, which is the science behind lung cancer biomarkers and targeted therapies, matching the right treatment with the right person. It is exciting and I understand why it’s exciting, but a large number of people don’t have biomarkers or there isn’t information found, but that doesn’t mean that there isn’t necessarily a biomarker or there isn’t a great treatment option. Can you expand on that a little bit?
Dr. Christine Lovly: This is an important point. We don’t want to set the expectation that every single patient with lung cancer will have a biomarker. In the bounds of this conversation, it’s hard to get into all the details needed to understand these biomarkers. There are conferences where people spend days talking about all the different biomarkers—the DNA biomarkers, the RNA biomarkers, and the protein biomarkers—and we would need to talk about each one of those separately.
Let’s take the scenario of DNA biomarkers. Right now, there are about 10 DNA biomarkers in lung cancer that have matched therapies that are FDA-approved. Ten approved therapies are a lot for cancer, but not every lung cancer patient is going to have one of those. That doesn’t mean anything good or bad. It simply means that maybe there isn’t a DNA-matched therapy for that lung cancer patient, but there are other tools we can use, like chemotherapy and immunotherapy.
Everyone with lung cancer should have a tissue sample to do staining for PD-L1, which is a marker we use for immunotherapy. There are different levels of biomarker testing.
Right now, there are about 10 DNA biomarkers in lung cancer that have matched therapies that are FDA-approved.
Dr. Christine Lovly
Jill Feldman: That is important. When I was first diagnosed in 2009, they had recently started testing for two mutations. What was interesting about that was I was originally stage 1 and I was going to do chemotherapy after surgery as adjuvant therapy because I was young, had a family history, and my kids were little. Even though it was minimally beneficial, I needed to do everything in my power.
Everyone recommended that I do biomarker testing. All of a sudden, chemotherapy might not be the right option. It might be this targeted therapy. Taking targeted therapy as adjuvant therapy was one of the best decisions because the cancer kept coming back. Maybe it slowed down the growth of the cancer or prevented it from metastasizing. The information or the lack of information is needed to guide it, so it’s incredible.
Dr. Christine Lovly: You mentioned no information and to clarify, no information in the context that Jill is using means you had biomarker testing, but none of the biomarkers were detected. No information means you had the test, but none of the biomarkers were found. That is very different than not having the test at all. It’s incredibly important to have testing done.
How Does Biomarker Testing Get Brought Up with Your Team?
Jill Feldman: How does the conversation about biomarker testing get started?
Dr. Christine Lovly: There are multiple different ways to do the testing. Different companies can do the testing and there are different ways that different health systems do the testing. The endpoint for every patient should be the same, which is getting tested. How do you get to that end? It’s going to vary based on where you’re getting your care.
Who orders the actual biomarker testing is different from place to place…The most important take-home message is the endpoint should be the same.
Dr. Christine Lovly
It’s very common for patients with lung cancer to have a team of doctors. I’m a medical oncologist, so I’m the doctor who gives chemotherapy, immunotherapy, and targeted therapies. You may also be seeing a thoracic surgeon, a doctor who cuts out lung cancer. You may be seeing a radiation oncologist, a doctor who gives radiation to help treat lung cancer. You may be seeing a pulmonologist, a doctor who is specialized in doing procedures like bronchoscopies where they put a tube down your throat to help get a biopsy of the tumor.
There are doctors who you don’t even meet, like pathologists who look at the cancer under the microscope and radiologists who read your CT scans and MRIs. There’s a huge team of people who are thinking about every single patient’s case and bringing it together to come up with the best plan for every individual.
Who orders the actual biomarker testing is different from place to place, so I can’t say how everyone does it, but I can say how we do it at my center. Sometimes I’m the one ordering it. Sometimes it gets what we call a reflex, where the biopsy will be done and the pathologist will reflex the order, which means they’ll put the order in before I even see the patient.
The most important take-home message is the endpoint should be the same. The patients should get biomarker testing. This is a discussion that ultimately is going to be one that your oncologist has with you because we’re the ones prescribing the biomarker-directed therapies.
If you have your list of questions in advance, people leave feeling more empowered afterward, like you’ve checked all the boxes and addressed all the questions you wanted to address.
Dr. Christine Lovly
Advice on Talking to Your Doctor
Jill Feldman: People always ask me: when should I start talking about it? How do I start talking about it? I always say that the most important question to ask is: was biomarker testing done? If it’s before taking a biopsy or before surgery, make sure biomarker testing will be done. If people are hesitant or don’t even know where to begin, what would be your advice on how and when to bring it up with their doctor?
Dr. Christine Lovly: It’s fair to ask: is my tumor going to get tested for biomarkers? Whoever you’re meeting with, chances are that the doctor is talking to the other doctors on the team as well. If they can’t answer it, then they will refer you to another doctor on the team.
My bigger advice would be to write down your questions. What happens so commonly is when you go to a doctor’s visit, the time feels very short, and it can feel very overwhelming. If you have your list of questions in advance, people leave feeling more empowered afterward, like you’ve checked all the boxes and addressed all the questions you wanted to address. There’s a huge comfort in saying you entered with all your questions and you left with all of your questions being answered to the best of the ability of the doctor or care team.
Jill Feldman: Communication is key.
Mutations in DNA act the same way. One little change in one little letter of the DNA changes the way the DNA reads.
Dr. Christine Lovly
Having a Biomarker Without An Approved Therapy
Jill Feldman: Because of the rapid advancement, you have biomarker testing. If you have a biomarker with an approved therapy, then there are steps that doctors are supposed to follow and you’re put on that particular therapy.
What happens if there are biomarkers found, but there isn’t an approved targeted therapy for it? Those can be called different things on the reports and it’s always a source of anxiety. What does that mean? If you could talk about clinical trials in this context, that would be great.
Dr. Christine Lovly: Jill mentioned a word that’s an important word that we haven’t gotten into, but it’s a cousin of the word biomarkers and that word is mutation. Biomarker testing looks for mutations. What is a mutation? A mutation is simply the word that we use for the change that happens in the DNA.
If I say DNA, which is the blueprint of our cells, the DNA reads like a sentence. If I tell you a sentence, “The big dog ran,” you would understand that sentence. It makes sense to us all. If I change one letter in one word, like if I change d-o-g to d-i-g, it becomes, “The big dig ran.” The sentence doesn’t make sense anymore. That little change changes the word dog to dig and changes the sentence.
Mutations in DNA act the same way. One little change in one little letter of the DNA changes the way the DNA reads. That’s what we’re looking for when we look for mutations in DNA. It’s as simple as that. It’s changing the way the DNA reads and the sentence doesn’t make sense anymore. It’s not what it was intended to be. That’s what a mutation is.
I’ve lived with lung cancer for 15 years and I’m alive because of these advancements. I have benefited from them.
Jill Feldman
The Hope in Lung Cancer
Jill Feldman: My family history illustrates hope, progress, and everything that we’ve talked about with lung cancer. When my parents were diagnosed, they had three treatment options: chemotherapy, radiation, and surgery. The benefits were often minimal and the treatments were worse than the cancer itself.
I’ve lived with lung cancer for 15 years and I’m alive because of these advancements. I have benefited from them. I have benefited from targeted therapies and I’m grateful for that, but we still have a long way to go. What’s your take on the future? What do you see as being most promising and hopeful for people?
Having novel treatments, especially treatments that can activate your body’s immune system to keep the cancer at bay, will be incredibly important.
Dr. Christine Lovly
Dr. Christine Lovly: If you think about any aspect of our lives, how things are now versus five years ago, 10 years ago, and 20 years ago, things are vastly different. When I was a kid, there was no Internet and now we’re completely dependent on it. The possibilities are amazing. There is a world in our lifetimes where cancer will be a chronic, treatable condition similar to other diseases, like diabetes, hypertension, and HIV. I don’t think that’s out of the realm of possibility. How do we get there? There won’t be one solution. It’ll be many and it won’t be medicines alone.
Lifestyle factors are hugely important. We don’t talk about it enough. I’m certainly not an expert in diet or exercise, but this is incredibly important. Primary prevention and screening are incredibly important. How do we screen for lung cancer or any cancer? Are we going to be able to prevent every single cancer?
Having novel treatments, especially treatments that can activate your body’s immune system to keep the cancer at bay, will be incredibly important. We already see this. I see this in my clinic every day. Patients have dramatic responses to therapies that activate their immune system to fight cancer. It’s remarkable.
There is unbelievable hope in the future for this dreadful word we call cancer, for lung cancer and other cancers. There’s still a long way to go and a lot of work to be done, but we have so much optimism that we will get there.
Jill Feldman: I’m grateful for the hope you provide.
It takes one candle to light a dark room. Light one candle and see how many are lit from that candle.
Jill Feldman
Conclusion
Jill Feldman: Thank you for joining us, Dr. Lovly. It was so wonderful to have this conversation with you. Thank you for the hope that you provide to patients and families.
Dr. Christine Lovly: Thank you so much. There’s nobody better to host this than you. You inspire people around the world and are so beloved by the lung cancer community and the cancer community in general, so thank you so much for all of the inspiration you give us.
Jill Feldman: Thank you. My mom used to say that it takes one candle to light a dark room. Light one candle and see how many are lit from that candle. That’s why I keep going.
It’s not easy, but it’s okay to not be okay. There are days when I don’t want to get out of bed. There are days when I feel like I can conquer the world. With where I am now in my advocacy, I didn’t get here overnight. It’s been years. I’m not always okay and that’s okay, as long as we keep moving forward. That’s my why, but at the end of the day, my real why is my family.
Special thanks again to Lilly for supporting our independent patient education content. The Patient Story retains full editorial control.
Background: Chris' wife Keasha passed away from stage 4 lung cancer one month after they married. He's been a passionate lung cancer advocate ever since. Focus: Leading with love, making connections to grow lung cancer community, NFL liaison
Background: Jeff was diagnosed with stage 4 lung cancer and given months to live, but his wife, Rhonda, fought for a specialist that led to biomarker testing and better treatment options Focus: Education of biomarker testing for driver mutations, patient and caregiver self-advocacy
Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients 1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)
Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients 1st Symptoms: Heaviness in arms, wheezing, fatigue Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
When Andrea was 50 years old, she heard the words no one ever imagines they’ll hear: “You have cancer.” It wouldn’t be the first time, either. Ten years later, Andrea learned her rare cancer, essential thrombocythemia, turned into a different one, myelofibrosis. Andrea made the difficult decision to have a stem cell transplant, which would later save her life.
Andrea and Denise share their journey through Andrea’s diagnosis of essential thrombocythemia, its progression to myelofibrosis, and the life-altering decision to undergo a stem cell transplant. Andrea offers insights into living with a rare blood disorder, participating in clinical trials, and embracing life post-transplant. Denise provides a heartfelt perspective as a care partner, highlighting the emotional and logistical challenges of supporting a loved one through treatment.
Together, their story underscores the importance of advocacy, resilience, and unwavering support in the face of adversity.
Name: Andrea S.
Age at Diagnosis:
50
Diagnosis:
Essential thrombocythemia (ET), later progressing to myelofibrosis (MF)
Symptoms:
Fatigue
Anemia
Treatments:
Targeted therapy: JAK inhibitor
Blood transfusions
Allogeneic stem cell transplant
Thank you to Karyopharm Therapeutics for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I felt young, vibrant, and energetic, and I had no symptoms, so I thought I’d get over this and it would be fine.
Andrea
Introduction
Andrea: My passion has always been sports in some way. I played rugby in Chicago. I have been riding a bike for as long as I can remember, which was made very difficult by my disease. I had to make some modifications. When it comes to this disease, modifications are the way of life.
How My Essential Thrombocythemia Was Found
Andrea: I didn’t have any symptoms. I was feeling great. Luckily, I had insurance, so I would go for a health checkup once a year to make sure everything was well. My doctor said, “Your platelets are a little high. I’ve been looking at the trend and I don’t like what I’m seeing. Why don’t I send you to a hematologist-oncologist?”
My platelet count was not as high. Normally, they don’t treat until your platelet count is 100,000 or more. I was at about 600. When I went to the hematologist-oncologist, he said, “They say not to treat this low, but I’ve had some bad experiences, so I would like to treat you.” I agreed. I felt young, vibrant, and energetic, and I had no symptoms, so I thought I’d get over this and it would be fine. I had no issues for 10 years.
I started feeling fatigued, but I blamed it on everything else, like not sleeping enough or not eating right.
Andrea
My Essential Thrombocythemia Morphed Into Myelofibrosis
Andrea: It was very slow and insidious. I started feeling fatigued, but I blamed it on everything else, like not sleeping enough or not eating right. I have a group that rides on Sundays, and we bike about 55 miles around the DFW airport. I was so fatigued that I had a hard time keeping up with the group. I said to my partner, who was riding with me, “Man, they are picking up the pace.” She said, “No, Andrea, I think it’s you.”
I went to my local doctor and told him that I didn’t know what was going on. He saw that my hemoglobin was going down. We tried different things and they didn’t work. He said, “You have to have a bone marrow biopsy. I can do it, but I think you should go to a center of excellence, like MD Anderson.”
Going to a Rare Blood Cancer Specialist
Andrea: It was scary. You walk in, and there are all sorts of people. This is going to sound strange, but while walking through the halls, I thought, “Hey, look at me. I’m healthy. Look at these poor people.” I was thinking that I was so lucky. I’m not in a wheelchair, nor do I look like I’m going to keel over. I’m walking to my appointment, so things can’t be that bad.
Dr. Verstovsek gave me plenty of time, talked me through what I could have, and told me the tests I was going to be required to take so they could give me a proper diagnosis, and then we’d see what would happen from there.
I had a bone marrow biopsy, which can be very daunting and scary, but I have a high threshold of pain. I’m the type who doesn’t need anesthetic when I go to the dentist, so I thought the bone marrow biopsy wasn’t a big deal. It was a little difficult in the beginning because you’re very tense and scared, but it’s easy.
When I got my diagnosis, he told me that there were several different things we could do. We can watch it, but at that point, the only thing they could offer was a clinical trial.
The fatigue was difficult, and I was working to push through it. It’s interesting how your body adapts.
Andrea
Being in a Clinical Trial
Andrea: I wanted to get better. It was a selfish motive, and it was also a pay-it-forward motive. I thought this disease was so rare that even doctors didn’t know about it. If I can contribute to the overall landscape, I’m happy to, as long as it doesn’t kill me or make me worse.
I was on two trials. The first one didn’t work at all. The second one worked for a while, but then it was so toxic to my system that we had to stop. I was having connective tissue issues, and it was causing all sorts of problems.
I was on another trial that didn’t make much difference. It didn’t make me sick, but it didn’t cure the anemia, which was my main problem. The fatigue was difficult, and I was working to push through it. It’s interesting how your body adapts. I was still going out and riding my bike, which wasn’t at the level I was before, but I wasn’t going to let it stop me.
Bringing Up a New Clinical Trial to Her Doctor
Andrea: I stopped the drug. I got acute back pain and shingles. They put me on another drug, and that didn’t work either. I met with a local transplant doctor around 2011, but we determined that I wasn’t quite ready for a transplant at that point.
It worked for me for six years. I wasn’t great, but I was better than I was. I felt much more confident and alive. You have a 5- to 6-year window, until death ensues, to be perfectly honest about it, and so I made sure that I was seeing people and living life as well as I could.
After six years, my blood count started to drop. I became transfusion-dependent. I was having transfusions first every two months, then every month, and then every three weeks. That’s when Dr. Verstovsek said, “I think it’s time we looked at a transplant.”
If you’re looking at transplant centers, being close to home is not that important. What’s important is the experience of the center, the support staff of the center, and your comfort level.
Andrea
Starting to Discuss a Stem Cell Transplant
Andrea: I went to see the local transplant doctor. We talked, and then I thought, “Maybe I should get closer to home.” I went to two local hospitals that claimed to be transplant centers. They do general transplants, but when I talked to them, one center told me they were very focused on the number of successes. They weren’t sure that I would be a good candidate and that I could ruin their numbers. I couldn’t walk fast enough out of there.
I went to another hospital, and they were very good, but I thought I needed someone who specialized in my disease. I’m not having an organ transplant. This is completely different.
I also learned that what’s important is not only the transplant doctor but the support staff. They’re the ones who are with you all the time. If you’re looking at transplant centers, being close to home is not that important. What’s important is the experience of the center, the support staff of the center, and your comfort level.
Denise: We knew that there was no cure for myelofibrosis. Since there were no options, we had no choice. It was either do the transplant or don’t and continue suffering. Her quality of life was suffering from anemia.
When we made the decision, she did a lot of research. She had a lot of conversations with other transplant patients. What was it like? How was the transplant itself? What was the care like? What’s important? There wasn’t a lot of information out there at the time. Through that, that’s when we said we have to do it.
I was taking my life into my own hands, and that’s what the scariest part was because if it didn’t work, I had nobody to blame except myself.
Andrea
Getting Ready for the Stem Cell Transplant
Andrea: Once I decided on MD Anderson, I felt great. You have to go to the hospital about a month ahead of your transplant date to get chemotherapy. The night that I was supposed to have chemotherapy, I texted my local doctor and Dr. Verstovsek and asked, “Should I do this?” Up to the last second, I was so scared. He said, “There’s nothing left. This is what you need to do.”
While it wasn’t easy, it was the best thing I ever did. I had to change a lot of things, but here I am.
Overcoming the Fear
Andrea: I didn’t know if it would work. Fortunately, my sister was my donor, and she was a 10/10 match. Prior to the transplant, I had my will set up and got all my affairs in order because I didn’t know if I’d live or not.
The scary part about it was that I was making the decision. I wasn’t in an accident. I wasn’t forced to do this. I was taking my life into my own hands, and that’s what the scariest part was because if it didn’t work, I had nobody to blame except myself.
Luckily, I had support when I came home. I don’t know what I would have done without my sister and Denise.
Andrea
Life After the Stem Cell Transplant
Andrea: I spent four months in the hospital. Luckily, I had support when I came home. I don’t know what I would have done without my sister and Denise. Denise handled all the medication. There’s no way I could have done it.
Slowly but surely, I got better, day by day, week by week. It was very scary. Am I always going to be like this? Am I always going to have a lack of energy? Is it my age, that’s why I can’t remember this? Is it my disease? You’re scared to death that you’re going to not make it, but if you hold on, you see it gets better.
At around six months, I went back to work. I knew I wasn’t performing at the level that I thought I should be. They never said anything, but I said it was time to go.
Talking with My Doctors
Andrea: The doctors came in once a week with 5 or 10 people. I didn’t have a lot of communication with the nursing staff, but they were incredible. They were there when they were supposed to be there. They were always available. Denise and my sister were both there. Denise kept a spreadsheet of all the medications. The staff could not have been more knowledgeable.
I got mouth sores in my throat. The only thing I could taste was Oreo cookies. It was very hard to walk. They had all these incentives. MD Anderson and the nurses did so much to encourage people because the last thing you want to do is eat or walk.
When my blood count started to increase, they could see that the stem cells from my sister were beginning to work. They had a party and cheered. It was very positive. I never felt like the nurse told me something just to answer me. If they didn’t know, they didn’t know, and they would come back with the answer.
If you let the disease get to you, it will. But if you fight it with everything going on, it is not a death sentence.
Andrea
More Hope for MPN Patients
Andrea: The area of MPNs is growing exponentially. When I had the disease, there were no treatments available. Now, there are FDA-approved treatments. It’s come an enormously long way. Don’t give up hope. Keep a good attitude.
Do your research. Don’t be a victim of the disease. Look at the disease as it is and fight for it. Fight for your life, whatever you have to do. Talk to friends. Talk to doctors and get different opinions. Don’t immediately accept what somebody says. Make sure you feel comfortable with whatever that is.
Denise: From my perspective, it was a big deal. She’s here. It was the right decision, and I’m so grateful. We’re all going to die someday, but now, you get to enjoy life fuller and enjoy the little things. We did it.
How I’ve Changed
Andrea: My identity shifted. I was much more guarded and careful. I didn’t let my emotions show nor speak about how I was feeling necessarily. I felt embarrassed about it.
I don’t feel that way anymore. It changed my life. It’s not a death sentence. It’s very hard when you start reading and doing your research. It’s changing every day.
Don’t give up. Don’t sit and say you’re going to die. I can’t emphasize that enough. Your attitude is who you are and who you’re going to be. If you let the disease get to you, it will. But if you fight it with everything going on, it is not a death sentence. You will make it.
Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.
Together in Treatment: Strengthening Your Myeloma Care Team
Edited by: Katrina Villareal
Together in Treatment: Strengthening Your Myeloma Care Team
Hosted by The Patient Story Team
The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Join myeloma patient advocate Michelle and her doctor and myeloma expert, Dr. Caitlin Costello, as they discuss what makes their patient-doctor teamwork truly effective.
The relationship between a patient and their doctor can make all the difference. A strong partnership leads to more informed decisions, personalized care, and a greater sense of control. Myeloma patient advocate Michelle and her doctor and myeloma expert Dr. Caitlin Costello discuss what makes their patient-doctor teamwork truly effective.
Learn how to build trust and open communication with your healthcare team. Understand the role of shared decision-making in multiple myeloma care. Hear first-hand experiences of navigating a chronic cancer with your doctor by your side. Discover practical tips for advocating for yourself or a loved one in the treatment process. Explore how teamwork fosters a supportive environment for long-term care.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Sanofi for supporting our patient education program. The Patient Story retains full editorial control over all content
Tiffany Drummond: I’m an advocate who has worked in cancer research for 20 years, but more importantly, I became a care partner advocate when my mom was diagnosed with endometrial cancer in 2014. Her journey led me to find out as much as I could to help with her care. Information wasn’t easy to find, so I’m honored to join The Patient Story in putting on programs to help people navigate life after diagnosis.
This program is hosted by The Patient Story, where we aim to help people navigate life before, at, and after diagnosis through empowering patient stories and educational discussions where we focus on how patients, caregivers, and their partners can best communicate with their doctors as they go from diagnosis through treatment with myeloma.
We want to thank The Leukemia & Lymphoma Society for its partnership. The LLS offers incredible free resources, like their Information Specialists, to help you communicate with members of your healthcare team and provide information about treatment options.
We want to thank our sponsor, Sanofi, for its support, which helps us host these programs for free. The Patient Story retains full editorial control over all content. I hope you find this information helpful, but please keep in mind that this program is not a substitute for medical advice.
We have two special guests from whom we can learn more about the patient-physician partnership. We have Dr. Caitlin Costello, an associate professor of medicine at UC San Diego Health and a hematologist-oncologist specializing in blood cancers, including myeloma, lymphoma, and leukemia. We also have our patient advocate, Michelle, who is a multiple myeloma fighter and a survivor.
Initial Multiple Myeloma Symptoms and Diagnosis
Tiffany: Let’s start back to your initial diagnosis. What was that experience like for you?
Michelle: I was diagnosed in 2016 at the age of 35. I had a five-year-old and a one-year-old at the time. The year leading up to my diagnosis, I had on-and-off back pain, which they said was because my muscles weren’t strong after having a baby. I was starting to lose weight, which they attributed to breastfeeding. I ended up having other symptoms that led me to go to the doctor more.
But then I ended up having severe stomach pain, which at times made me want to drive myself to the ER. I also ended up having itchy scabs all over my body. I went to the dermatologist and my general physician. They both started digging, and my general physician started ordering lab work, which eventually led to the diagnosis of multiple myeloma.
Tiffany: You knew in your gut that something wasn’t right. What did it take for you to advocate for yourself? And when you were referred to a specialist or a hematologist-oncologist, what was your initial experience like?
Michelle: My husband travels for work. was at home with my one-year-old and five-year-old when I was having stomach pains. I didn’t know what to do. I almost drove myself to the ER one day. I took a breath, pulled over, and the pain stopped. I called my doctor and told him he needed to see me the following day. I had already seen the dermatologist about the scabs all over my body. She looked into things and I didn’t know if any of my symptoms were related.
The doctor called and said, “You need to come in right now.” My husband was home, so we picked up our one-year-old and drove to the doctor’s office. My husband stayed with our one-year-old so I could listen to what the doctor was saying.
When we got home, we started making calls…. They all led us to Dr. Caitlin Costello… She fit me in right away, and we never looked back.
Michelle
He said, “You have multiple myeloma.” I asked, “Is that cancer?” He said yes, explained what it was, and sent me to a hematologist-oncologist in their group, who was not at UCSD then. They got me in that day, and the hematologist-oncologist did a bone marrow biopsy.
When we got home, we started making calls. I called my boys’ pediatrician, who I loved and whose opinion I valued, and we reached out to several other people. They all led us to Dr. Caitlin Costello, so we gave her a call. She fit me in right away, and we never looked back.
Explaining Multiple Myeloma to Patients
Tiffany: Doctors all explain myeloma differently, so Dr. Costello, how do you explain myeloma to your patients?
Dr. Caitlin Costello: For many people, when they hear of and think of cancer, they think of a lump, like breast cancer, or there are symptoms associated with a tumor. But when you’re talking about blood cancers, no tumor can be picked up on routine screening tests, of which there aren’t any for myeloma.
With more “typical cancers,” we’re so used to having public health initiatives for screenings like mammograms and colonoscopies. Multiple myeloma, however, while it’s the third most common blood cancer, doesn’t come anywhere near number-wise in terms of how many patients are affected in the United States each year. For that reason, for better or for worse, I don’t think we have good epidemiologic advances to say that everyone should have a blood test screening looking for this.
There’s ongoing interest in screening wide groups of populations. In Iceland, they’re screening the entire country for all patients over the age of 40 to see if they can figure out how many patients have what looks like the beginnings of multiple myeloma. And if they’re not myeloma at that point, they want to understand if it makes sense to screen patients.
Patients are going to live with this for the rest of their lives, so there’s no greater importance than understanding and knowledge.
Dr. Caitlin Costello
For the most part, that means that most patients are diagnosed with multiple myeloma when they develop a symptom of some sort. Many people have not heard of myeloma. When a doctor says to a patient that they have multiple myeloma, they ask, “What does that mean?”
When I describe multiple myeloma to a patient, I say, “What we have identified is a form of a blood cancer called multiple myeloma based on your blood tests and your bone marrow tests.” A lot of my consultations with patients are to explain that diagnosis because.
We have a wonderful problem with myeloma. This has turned into a chronic illness. Patients are going to live with this for the rest of their lives, so there’s no greater importance than understanding and knowledge so that patients know what it is that we’re talking about, know how to follow their blood tests, understand the successes of therapy or perhaps early signs of failures of therapy, and advocate for themselves.
There’s so much to say of the educated patient, which doesn’t mean Doctor Google. There are very good patient advocacy groups and platforms like The Patient Story, where patients can get great information to help them understand their disease and their journey with it.
When I explain myeloma, I explain that it’s a form of blood cancer that comes from a plasma cell, which is part of your immune system. The plasma cell is designed to produce the weapons needed to protect our body. The bone marrow is like the armed forces. We have an army, a navy, an air force, and all these different branches with different weapons designed to protect you. One branch went rogue when one plasma cell went rogue and started producing extra bad guy weapons that don’t work well and cannot protect the body and cause damage.
Bones are the most common way that myeloma can affect a person’s body, and therefore, that’s one of the most common ways that patients are eventually diagnosed because they come seeking help for pain. As Michelle experienced, back pain is one of the most common ones. We think the bones in the middle of our body are more often affected than elsewhere. The classic story is someone had back pain, their doctor did X-rays, but they didn’t see anything, or they were referred to physical therapy, but the pain got worse.
Everyone’s allowed to hurt, but pain that doesn’t go away, came on for no good reason, and is persistent needs to be evaluated. Michelle did all the right things because she had what we can say are typical symptoms with pain, some atypical symptoms with the skin and the belly discomfort, but she asked all the right questions to get her to the right people who could help her.
Common Questions After a Multiple Myeloma Diagnosis
Tiffany: I love that you talk about patient education. I believe that part of patient education is learning all the medical terms you probably weren’t familiar with before. How receptive are your patients in terms of wanting to learn all that? What are the top three common questions you get after someone is diagnosed with myeloma?
Dr. Costello: The top three questions are: How did I get this? What can I do to make it go away? Is it genetic?
Everyone wants to feel empowered that they can make some lifestyle change, for example, to make things better or help rationalize this to some degree to say X caused Y. It would be fair if there was some culprit, but it’s unfair because there is no culprit. We think this is a random thing that happened for no good reason, by no fault of anybody’s. Nature changed the makeup of your bone marrow and the part of your immune system.
Getting Involved in the Decision-Making Process
Tiffany: Michelle, when you first met with Dr. Costello and as she was explaining your treatment options, how involved were you in the decision-making process? What did that experience look like?
Michelle: Dr. Costello presented me with what the standard of care was for multiple myeloma at the time. I was very receptive. I sought a second opinion and reached out to another multiple myeloma specialist in the vicinity. She confirmed the same thing, so we went with what everyone was recommending.
Factors to Consider in Shared Decision-Making
Tiffany: Dr. Costello, when you approach your patients about their treatment options, what are your thoughts? How do you approach shared decision-making with your patients? What factors do you consider to help them come to that process with you?
Dr. Costello: Every person is different. People process information differently. People hear information differently. Some people want to know more, and some people don’t want to know more.
An important part of any conversation is to level set and say, “What do you want to get out of this conversation? What is it that you want to know?” More often than not, the patient has something in mind, and the family members have something different in mind. It’s important to gauge the group to determine what it is that they’re hoping to get out of the appointment so that I’m not overstepping boundaries.
Once we are able to establish how much will be shared, my job is to give the information. What is the standard of care? What is the typical approach? Once we’ve laid the groundwork, then we can determine treatment recommendations based on the patient and the details of their health, caregiver support, and the biology of their disease. Very specific details can make treatment recommendations slightly nuanced for any individual person.
My job is to help them be as informed as possible so that they can make the best decision for themselves.
Dr. Caitlin Costello
I love that Michelle got a second opinion. I have no ego. When you are diagnosed with something life-changing, you need to feel very confident in what your next approach is going to be. The more people think about you, the better. Like many myeloma specialists, this is what we do day in and day out, but it’s nice to have a fresh set of eyes so nothing’s missed. Yesterday’s information may have been different from a month ago’s research.
The approach is standard, but the shared decision-making is where things may be slightly different. I can make all of my recommendations and say, “This is what’s standard. These are the slight modifications I would make for you.” Sometimes, the patients will take that information and say, “I’ll get back to you.” Some people will say, “Let’s do this. Whatever you say, doc.” Some people will say, “No.”
I’m not in their body. I’m not making decisions for them. My job is to help them be as informed as possible so that they can make the best decision for themselves. I may not agree with their decision, but that’s not my job. My job is to help them arrive at the best decision that’s for them.
Tiffany: You said everything that I wanted to hear personally, especially when it comes to seeking a second opinion. For a lot of patients, especially if they like their physician in the first meeting, they feel like they’re turning their back on their physician. Thank you so much for encouraging patients to seek a second opinion.
Multiple Myeloma Treatment Journey
Tiffany: Michelle, where are you in your treatment journey?
Michelle: I did four months of the initial treatment regimen and went into an autologous stem cell transplant. Unfortunately, it wasn’t successful and the myeloma returned within the 100-day mark. We regrouped, went back on one treatment for the summer, regrouped again, and did a more aggressive approach.
The MRD testing at the beginning of 2024 showed that the myeloma was slightly coming back. It was affecting my quality of life and I was ready for something different, so we regrouped again. The doctors agreed that I could take the summer off. We did a repeat bone marrow biopsy, so I would have some initial data to compare against when I start my new treatment plan.
Tiffany: Did the pandemic affect your treatment at all?
Michelle: It gave me a lot of anxiety, but I had to be persistent. Even when everything closed down initially, we were on the phone asking, “Am I coming in?” She said yes, so I went in. I went in every other week all through the pandemic.
Coordinating Care with Multiple Healthcare Providers
Tiffany: When it comes to cancer, you have more than one healthcare provider. Your healthcare team is very vast. Is that specific to UC San Diego or do you have local providers that you also go to? You’re always receiving a lot of information, so how do you coordinate that among yourself and your medical team?
Michelle: I don’t live in San Diego anymore, so I have a local hematologist-oncologist in Sacramento where I now live. This is my disease and my choice. I’ve always sought second opinions, especially when making big decisions about changing treatment plans and what to do next.
Thankfully, the multiple myeloma world is small, so they all know each other. I’ve always been able to discuss with each physician. Even if I don’t agree with a treatment plan, I can seek a different opinion. They have been very kind and take into account my quality of life and what I would like.
Getting the information is best. I seek opinions, weigh out what I want to do and how the treatment is going to affect my life, especially with raising two active boys, what I can handle as far as raising them and having a great quality of life, and then make my decision of how I want to proceed based on their recommendations.
Managing Patient Care From Afar
Tiffany: Dr. Costello, for someone like Michelle who doesn’t live in your area, how do you approach seeing patients from afar? Is that something that you do? I had a conversation recently about how large academic centers are more specialized and how you share information with local providers who may not have the same knowledge that you would have. How does that work for you?
Dr. Costello: I don’t feel like Michelle gives herself enough credit. From everything that she said, while raising two young children amid a pandemic, I told her to jump, and she said, “How high?” She has such a commitment to her health and her family.
She got her care at UCSD where we have myeloma-dedicated physicians, but most myeloma patients are taken care of in the community. They see an oncologist, who is possibly a general oncologist who’s seeing them right after they see someone with breast cancer and right before they see someone with lung cancer. Often, they’re good with myeloma, but it’s hard to be a jack of all trades also, and that’s where the importance of a myeloma specialist comes in. I don’t know how they do what they do, seeing so many different cancers. I have difficulty keeping track of one, let alone all of them.
The importance of the connection between the community oncologist and the academic myeloma specialists can’t be underlined enough because we have different tools at our disposal.
Dr. Caitiln Costello
Myeloma is a team sport. Your team includes the patient, myeloma specialist, general oncologist, nurse navigator, nurse, and social worker. There’s a whole team of people who are trying to come together to hold hands with our patients to get them through this whole process.
I can’t speak for other places, but a lot of that can be a little insurance-driven, especially in California. Some insurers will require you to stay with your community oncologist and if that’s the case, the patients get referred for their stem cell transplant, CAR T-cell therapy, or whatever treatment we have to offer at the academic center that perhaps the local oncologist cannot offer. That allows us to maintain that relationship with our patients as well. I have a list of phone numbers of all my local community oncologists down here because we are constantly talking about our patients behind the scenes.
The importance of the connection between the community oncologist and the academic myeloma specialists can’t be underlined enough because we have different tools at our disposal. Myeloma is complicated. There are so many drugs, which is a wonderful problem, but that means that it can be complicated to understand which drug to use and in what order. The connection between the oncologist in the community and the myeloma specialist is absolutely paramount to navigate this whole thing.
I want to be well and healthy to see my boys’ future, and I want to do that with a great quality of life.
Michelle
Importance of Quality of Live in Driving Treatment Decisions
Tiffany: I used to be a caregiver, so I understand the importance of quality of life. Michelle, you were able to take some time off treatment. How important was your quality of life in driving treatment decisions?
Michelle: I want to be around for my children. That’s my top priority and however I’m going to get there, I will get there. I will cross that finish line no matter what it takes. I want to be well and healthy to see my boys’ future, and I want to do that with a great quality of life.
I started not feeling well after treatments. I was dragging myself and making myself nauseous before even getting to treatment. It was psychosomatic. I realized this wasn’t good and I needed to switch things.
I’m very fortunate where I have a lot of flexibility in my time, so I’m able to make doctor’s appointments and do my treatments during the day when my boys are at school. I try to lead my life in a way that doesn’t affect my children. I’m not in the infusion center when they’re home and going to bed, and I’m very blessed to have that opportunity.
Data That Looks at Quality of Life for Multiple Myeloma Patients
Tiffany: Dr. Costello, is there increasing data that looks at quality of life when it comes to myeloma and treatment options?
Dr. Costello: I don’t even know how to emphasize quality of life enough. People ask, “Is it quantity of life? Is it quality of life? Is it both?” I ask that to some degree to find out about their goals. People’s goals are different. It’s realistic though to say that some of our treatments are not that great. They’re inconvenient and take up a lot of time even though they work. We need to have a conversation to find out their deal breakers. Some patients don’t want to be in an infusion center and only want to take a pill, even if it means it’s not as effective because that’s what’s meaningful to them.
As far as research goes, fortunately, a lot of different studies are looking at new drugs or new drug combinations, including what we call patient-related outcomes. People may hate it because there’s a lot of surveys that happen in the midst of clinical trials asking them, “How’s today? How’s your body image? How do you feel like this? Are you content with this treatment? How do you perceive the side effects of treatment? How much time has this taken out of your day to do this?”
There is more interest in expanding on what we’ve always relied on to evaluate the safety and efficacy of drugs, to incorporate how these drugs can change people’s lives positively and negatively, and to help guide doctors in making treatment decisions and help patients understand if that’s a deal breaker.
Approaching the Clinical Trial Conversation
Tiffany: You brought up clinical trials, which is one of my favorite topics. Oftentimes, I’ll hear patients say they don’t want to go on a clinical trial because they think that’s the last resort. Dr. Costello, how do you approach the clinical trial conversation with your patients?
Dr. Costello: I first dispel the myth that placebos still exist. Some people still have it embedded in their mind. I always say that it isn’t ethical. We don’t do that anymore. Clinical trials are designed to give you what we consider the best available treatment right now and/or compare it to something that we think is as good or potentially better. I tell patients they’re potentially getting the best of both worlds no matter what they get assigned to at clinical trials.
Part of clinical trials is to help patients understand that there are various phases. Some are randomized where we don’t get to say in what treatment the patient will get. They get assigned to one or the other, but both are great options. There’s an earlier phase trial, which evaluates the safety or efficacy of these treatments and every patient will get the exact same treatment.
There are great benefits that can be reaped by participating in trials, which include getting access to cutting-edge therapies.
Dr. Caitlin Costello
There’s a thought that participating in a clinical trial is purely altruism and to some degree, yes. You are helping the future of myeloma therapies, but you’re getting the benefit yourself from it. Clinical trials are not always designed to be testing the next best thing when a patient has no other options. It’s improving all the steps of treatment that currently exist because we can always do better.
When the conversation about clinical trials comes up, a lot of it is dispelling myths and helping people recognize that it’s not just for others. There are great benefits that can be reaped by participating in trials, which include getting access to cutting-edge therapies that I otherwise cannot write a prescription for.
Seek other opinions and make the best informed decision for yourself.
Michelle
Key Takeaways
Tiffany: Michelle, what would you tell a patient who is newly diagnosed? Honestly, it seems like you did everything right, so I want to commend you.
Michelle: You are your best advocate. Do your research. Seek other opinions and make the best informed decision for yourself.
Tiffany: Dr. Costello, how do you help a provider to be an active participant and proponent of informed decision-making and shared decision-making, especially junior providers who are coming into the fold? What advice would you give providers to be the kind of person who has relationships with their patients like you and Michelle have?
Dr. Costello: Thank goodness that the paternalistic approach to medicine is a thing of the past. While there may still be a bit of it out there, there has been such an important message about customer service with medicine. You have to understand that this is a give-and-take relationship to some degree. The patient deserves to hear all the information and it’s the physician’s role to give all that information.
There’s been such an important emphasis on compassion and communication. If the physician can put themselves in the shoes of a 35-year-old newly diagnosed mom walking into a cancer center, we can all step out of our bodies and our egos to understand that there is more that can be improved in terms of developing that relationship and the importance of communication. We need to understand that we have much to offer, but our patients have so much to offer us as well.
Conclusion
Tiffany: Thank you, Michelle and Dr. Costello, for such an engaging and empowering conversation. I learned a lot about both of you personally and professionally. What you’ve had to say is going to resonate with our audience.
Dr. Costello is truly a testament to what makes a great physician partner. Witnessing her and Michelle interact was refreshing since we know the patient-physician conversation isn’t always light-hearted when it comes to cancer care. It is important to be empowered so that you and your caregivers can make informed decisions about your care.
Thanks again to our sponsor, Sanofi, for its support of our independent patient program and to our partner The Leukemia & Lymphoma Society. Check out the links on their website, including their information resource center, which provides free one-on-one support.
Filipe’s Stage 4 Lung Cancer with EGFR exon 19 Deletion Story
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Filipe was diagnosed with stage 4 lung cancer at 36. He reflects on the challenges and critical decisions that shaped his treatment path. Being a nonsmoker, he was shocked by his diagnosis following a severe headache that prompted a brain MRI, revealing multiple metastases in the brain and a primary tumor in the lung. Despite disbelief and seeking second opinions, doctors confirmed the advanced stage of his condition.
The treatment began with brain surgery to address a 4 cm metastasis. Biomarker testing revealed an EGFR mutation, enabling targeted therapy that initially worked well. However, disease progression after nine months necessitated further interventions, including chemoablation for kidney metastases and SBRT for lung activity. Eventually, a new line of treatment with a bispecific antibody offered hope when options dwindled.
Managing side effects became a significant focus, especially as the current treatment led to severe skin issues and nail problems. Adjusting the treatment schedule provided some relief. Emphasizing the importance of second opinions and advocating for personalized care, Filipe highlights the need for patients to be informed and assertive. Despite setbacks and fears of running out of options, he remains hopeful, crediting research and innovation in lung cancer treatments for extending his life.
Name: Filipe P.
Age at Diagnosis:
36
Diagnosis:
Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
EGFR exon 19 Deletion
Symptom:
Headache
Treatments:
Surgery: to remove brain metastasis
cryoablation: to remove kidney metastasis
Targeted therapy
SBRT
Bispecific antibody
Thank you to Johnson & Johnson for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I was diagnosed with stage 4 lung cancer at the age of 36. I’m married and I have a daughter. I have electronic hobbies.
Before my diagnosis, life was well. I was an IT systems administrator for an insurance company. My daughter was five years old when I was diagnosed.
The MRI revealed seven brain metastases and a 4 cm metastasis on the back of my head.
How I Found Out I Had Lung Cancer
I used to say I’m healthy all the time. I don’t have behaviors that justify my diagnosis, so it was a shock.
I was very lucky because my diagnostics took one day. When I had a headache, I went to the doctor and the first thing the doctor asked me to do was a brain MRI. When I was in the MRI machine, the technician asked me to wait because he wanted to call the doctor. I asked him why because the result takes at least one week. He said the doctor needed to see it.
The MRI revealed seven brain metastases and a 4 cm metastasis on the back of my head. For the doctors, it was very easy to diagnose because there was evidence. I had brain surgery two weeks after my MRI. They told me that the primary cancer would probably be lung because lung cancer usually metastasizes to the brain very quickly. They did a CT scan and biopsied the primary site and confirmed that I had stage 4 lung cancer.
At the appointment with the doctor, my wife was with me. When he said that it was cancer, I didn’t want to believe it because I never smoked in my life. I was healthy. I usually don’t go to the doctor, so it was very awkward for me. I started thinking about second opinions, but the doctor said there was no doubt about it. It was a shock.
Preparing for Brain Surgery
I went to the hospital. They double-checked everything with a CT scan and confirmed that it was lung cancer.
The first CT scan showed lesions on my liver. Fortunately, it was benign, but they found cancer in my bones, my left lung, and my head. They told me that I needed brain surgery right away because the 4 cm metastasis on my brain wouldn’t go away with other therapies. The brain is the last place a patient wants to have surgery.
The doctor said it was a very easy surgery. When they removed the bone, they were able to immediately take it out.
I started at a private hospital where I was diagnosed. They wanted me to undergo radiotherapy for my brain. I asked for a second opinion at a cancer center and they said the brain metastasis would not respond to radiotherapy and that I needed to have brain surgery. Because I’m a nonsmoker patient, I will probably have a mutation and if I’m eligible to undergo targeted therapy, usually the metastases respond very well to this kind of therapy.
I started to be treated at the cancer center. I had brain surgery to remove the biggest metastasis. After it was confirmed that I had the EGFR mutation, I started with a targeted therapy that’s very common for EGFR patients.
Second opinions are very important. There is a small margin of error in this disease. If you don’t choose the treatment well, you may not be able to choose another treatment. Listening to the doctors is very important. Get a second opinion or even a third opinion.
There were no other options for me at the time. I was very lucky because the metastasis was on the surface, so the doctors didn’t need to navigate into my brain to remove it. It only took 50 minutes. The doctor said it was a very easy surgery. When they removed the bone, they were able to immediately take it out. They didn’t need to do a whole lot.
Brain surgery is tough to think about, but it needs to be done. I wrote a letter saying goodbye to my family for them to open in case I die. Fortunately, everything went well and 24 hours later, I was standing up and walking.
Learning About Biomarkers
At the time, I didn’t understand why biomarkers were so important. Knowing your biomarker will define what kind of treatment you can have. It’s an expensive exam, but it’s very much needed because the biomarker will allow you to choose the best treatment for your cancer. The biomarker could save your life.
Targeted Therapy Worked for Nine Months
The average progression-free survival of the targeted therapy that I underwent is 18 months. I had a very short run. It only worked for nine months. The first few months were very good because it cleared four brain metastases. It also cleared my bone and reduced the cancer in my primary site.
After three months, I started to have early progression. A metastasis appeared in my kidney. We did a needle biopsy and a biomarker test to confirm if it was the same cancer because it’s very unusual for lung cancer to metastasize on the kidney. When it was confirmed that it was the same cancer, we did cryoablation on the kidney. We froze the metastasis with argon to kill the cancer cells. I also had SBRT on my lung because my lung started to have activity on the primary site based on a PET scan.
After nine months, in August 2023, I had severe progression. At the time, I had no other options on the market.
Knowing your biomarker will define what kind of treatment you can have.
Finding Another Line of Treatment
I was very lucky because my current treatment, which is a bispecific antibody, is only used for EGFR exon 20 and I am exon 19. I was very lucky because I had no options left. Amivantamab appeared and I had a great response to it.
I was very lucky because the drug came out. It’s frightening to think about running out of options and only relying on drugs that aren’t effective for your disease.
It’s similar to the sensation of when you receive the diagnosis thinking that you’re going to die, but this time, I have more information. I know exactly what my options are and even though they’re very few, I’m more aware of what’s happening. In the beginning, everything is new and you start to collect more information. But when I had the progression, I knew exactly what was going to happen.
Side Effects of the Current Line of Treatment
With targeted therapy, you can take one pill a day at home and have a normal life. With amivantamab and chemotherapy, you need to stay at the cancer center for six hours every three weeks. It’s not targeted, so it attacks the cancer cells but also the healthy cells, so you need to deal with the side effects.
It’s not as comfortable as targeted therapy. You need to reorganize your life according to the infusion days. If the toxicity is too high, I can postpone for one week, so sometimes I do four-week intervals instead of three. The major side effect is the skin and that’s why I have these pimples all over my body. I also have a lot of nail problems.
The side effects started to manifest weeks after taking the drug. It started with pimples and because I’m on blood thinners as well, everything was full of blood. After two or three months, I reached the peak of my side effects, and the side effects started to smoothen. Right now, only the nails are my major problem.
I used to have various scalp problems, pimples, and blood, but after almost 11 months, it’s only the nails and scalp. I control it with topical corticoids. I used to put a lot of cream, but it wasn’t enough. I need to take corticoids when I have treatments; otherwise, the skin becomes very red and has sunburn-like pain.
The rash is very tough because, for example, when I take a bath, I cannot use a towel and rub my skin. After all, it hurts a lot. I need to dry it very carefully with a towel. I stopped wearing white because you will see blood sometimes. The pain is also associated with that. Sometimes I’m unable to do normal things when I experience the peak of my side effects. For example, I cannot wear sneakers because it’s closed and I have nail problems on my feet, so I wear flip-flops all the time. The main problem is it doesn’t heal. Whatever you do, it doesn’t heal 100%. It can get better, but it never heals.
The toxicity starts to accumulate. In the beginning, it’s only one or two nails. Nowadays, it’s all of them. I only have one finger without problems. The rash is tough, but at some point, it starts to be manageable because you know your body, so you know what to do and know to avoid some troubles.
I’m a stage 4 lung cancer patient with brain metastasis. Forget the skin.
Communicating with My Doctors About the Side Effects
Doctors need to be careful with how to deal with their patients. They usually say that if they cannot control the side effects, treatment may be stopped and the patient starts to hide their side effects because they’re afraid of stopping treatment.
My dermatologist told me that in the beginning. If my skin becomes very bad, we need to stop treatment. I asked her, “What is the threshold?” I’m a stage 4 lung cancer patient with brain metastasis. Forget the skin. I started to understand when things go very bad with the rash and why we may need to stop treatment.
Treatment can be flexible. Instead of every three weeks, you can do it every four weeks, like I do now. One week can make a lot of difference for patients. A patient needs to know that everything is flexible.
I’m very happy with my current doctor, who’s my third doctor. You need to advocate for yourself. With all due respect, doctors need to understand that they are working for us and not the other way around. The patient has the power. He can stop treatment. He can postpone treatment. It’s our life, so we have a say and we need to be heard. Otherwise, we can change the doctors or change the medical team. Everything can change.
The Fear of Running Out of Treatment Options
Running out of options is scary. Research is very important. Without research, people would run out of treatments. Treatment can save lives. I’m an example of that. I believe that if it wasn’t for the drug I’m currently on, I wouldn’t be here, so it’s very important to have options.
Cancer is a monster, but there is hope.
My Biggest Advice for Lung Cancer Patients
There has been more development in lung cancer in the last five years than in the last 50, so there are a lot of things happening. Don’t look at the statistics. The data online is outdated. There is a lot of hope. Cancer is a monster, but there is hope.
Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.
Rachel was diagnosed with stage 3B ovarian cancer when it was discovered after a year of trying to conceive. She was having annual gynecological check-ups and normal blood work, so she dismissed her symptoms as common female issues. It wasn’t until she underwent fertility testing that a mass on her left ovary was discovered, confirmed by a high level of CA-125. Surgery was quickly scheduled, during which the tumor and her left ovary were removed, and she was diagnosed with stage 3B ovarian cancer.
Before starting treatment, Rachel underwent two rounds of IVF to preserve her fertility, producing five embryos. She began chemotherapy, underwent a second surgery to remove her remaining ovary and undergo HIPEC, and finished her treatment with another three rounds of chemo.
Throughout, Rachel relied on her strong support system, including her husband. They moved back to Pittsburgh to be near family during her treatment. Mentally, she found strength in the temporary nature of her ordeal, journaling, daily devotionals, and staying physically active when possible. A friend’s advice to shift her mindset from “I have to” to “I get to” was a crucial part of her coping mechanism.
Despite the initial relief of finishing treatment, Rachel faced the disappointment of learning that, despite her tumor not being genetic, it resembled BRCA-positive cancer, requiring her to be on a PARP inhibitor for two years. This affected her plans for immediate motherhood, with the possibility of using a surrogate for their first child while she heals.
Rachel’s experience transformed her perspective on life. She values her connections with others more deeply and approaches life with greater intention and appreciation. While she acknowledges the challenges and fears of cancer returning, she emphasizes that this difficult experience has made her stronger, more fulfilled, and more grateful for the life she has.
Name: Rachel D.
Diagnosis:
Ovarian Cancer
Staging:
Stage 3B
Symptoms:
Infertility
Night sweats
Severe periods
Bloating
Treatments:
Surgeries: oophorectomy (initially to remove the tumor & left ovary then the right ovary after IVF)
Chemotherapy: CarboTaxol (carboplatin and paclitaxel) & HIPEC
PARP inhibitor: Zejula (niraparib)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Pressure on bladder, throbbing pain, could feel growth on right side of abdominal area Treatments: 5 surgeries (official diagnosis after 3rd) ...
Symptoms: Extreme bloating, pinching pain in right side of abdomen, extreme fatigue Treatments: Surgery (total hysterectomy), chemotherapy (Taxol once a week for 18 week, carboplatin every 3 weeks), concurrent clinical trial (Avastin) every 3 weeks ...
Rylie began experiencing symptoms in the months leading up to her diagnosis with Hodgkin lymphoma. Initially, she dismissed her symptoms, which included severe back pain and night sweats, attributing them to a waist trainer she had been using. Despite increasing discomfort, she continued with her daily activities, including travel, only to find the pain becoming paralyzing.
After multiple visits to the ER, where doctors suggested her pain was due to a pulled muscle or kidney infection, Rylie still found no relief. It wasn’t until she consulted a general practitioner, who immediately recognized the severity of her condition and sent her for further tests, that she was diagnosed with stage 3 Hodgkin lymphoma. The diagnosis came after months of misdiagnoses and escalating symptoms, including difficulty breathing after consuming alcohol, intense night sweats, low energy, and excruciating back pain.
Upon diagnosis, Rylie faced the emotional turmoil of confronting cancer while also considering future fertility. Since she had not yet had children, her oncologist advised undergoing fertility treatment before starting chemotherapy. After completing the process, she began her chemotherapy treatment, which consisted of 12 rounds of ABVD over six months.
The treatment, though grueling, provided some initial relief from her symptoms, especially after the first round when she was finally able to breathe easier. However, she also experienced common side effects such as nausea, hair loss, and neuropathy in her hands. After four rounds of chemotherapy, follow-up scans showed that the treatment was effective, allowing her to continue the same regimen.
Five years after her diagnosis, Rylie reached the significant milestone of being officially cancer-free. Reflecting on her experience, she stresses the importance of vulnerability and honesty, particularly in asking for support from loved ones. She believes that opening up and being raw about one’s feelings can strengthen relationships and help others better understand the emotional toll of serious illness. Through this difficult time, Rylie has learned to embrace vulnerability and encourages others to do the same, noting that it can lead to deeper empathy and connection with those around you.
Name: Rylie G.
Diagnosis:
Hodgkin’s Lymphoma
Staging:
Stage 4
Symptoms:
Severe back pain
Night sweats
Difficulty breathing after alcohol consumption
Low energy
Intense itching
Treatments:
Chemotherapy: ABVD (doxorubicin hydrochloride, bleomycin sulfate, vinblastine sulfate, and dacarbazine)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Eve shares her story of facing prostate cancer while embracing her gender identity. Diagnosed at age 57, she recounted how her health scare intertwined with her self-realization and how confronting cancer pushed her to live authentically.
Her cancer diagnosis was unexpected, identified during a routine physical when a PSA test began to rise from 4 to 12 by the following year. A biopsy revealed an aggressive Gleason score of 5+4.
She underwent a robot-assisted laparoscopic prostatectomy (RALP) in early 2018. The surgery affected her physically, removing erectile function and leaving her feeling disconnected from her former male identity, pushing her deeper into her non-binary reality.
Despite surgery, the cancer persisted. Radiation therapy followed, involving 18 rounds over several months. Her PSA initially decreased but started climbing again. Realizing that testosterone fueled the cancer, she decided to remove her testicles, undergoing a bilateral orchiectomy. Although it slightly reduced her PSA, it wasn’t a definitive solution. A significant turnaround came with an oncologist who devised a plan that stabilized her PSA to undetectable levels for four years.
Embracing life, she acknowledged cancer’s role in catalyzing her authenticity and resilience. Facing a traditionally masculine disease as a transgender woman highlighted the need for inclusive medical practices. She advocated for gender-sensitive language in healthcare and called for the inclusion of trans women in prostate cancer research.
Name: Eve G.
Age at Diagnosis:
57
Diagnosis:
Prostate Cancer
Gleason Score:
9 (5+4)
Symptom:
None; elevated PSA levels detected during annual physicals
Thank you to Johnson & Johnson for supporting our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
My prostate cancer and my gender transition were intimately related.
Introduction
I’m a transgender woman, I’m married, and I’m fighting prostate cancer. I was diagnosed in 2017 at 57 years old. I faced my mortality, so the best I could do was to live my life happily. I bought a 42-foot sailboat and moved to Texas.
I’ve been telling a lie about my authentic self for almost 60 years. I recognized my authentic self, which was freeing. I don’t have any secrets anymore. I don’t have anything to hide from anymore. I faced my demons.
My prostate cancer and my gender transition were intimately related. I might not have transitioned if I didn’t think I had to. I might have gone on enjoying my male privileges. I enjoy some female privileges now but not as many. I’m a member of a discriminated-against minority.
Getting the Cancer Diagnosis
In 2016, I went for my annual physical with my primary care provider. They did a PSA test. It was the second or third that I’d done, but it had gone up to a 4. They didn’t think it was of great concern.
The following year, I went for another test and it was a 12. It started going up to 18 and they said, “We think it’s cancer.” I had a biopsy and they said it was a Gleason 5+4 or a 9. The maximum you can have for a Gleason score is 10 (5+5), so there were a lot of cancerous cells in my biopsy.
They took the nerves on one side of my prostate gland, the nerves that control a male’s erection, and I lost my erection. It left me feeling less than male.
Treatment Options
They told me that my choices were radiation or surgery. I told them to remove the gland. When they did, they took the nerves on one side of my prostate gland, the nerves that control a male’s erection, and I lost my erection. It left me feeling less than male. I was always non-binary and my wife always knew that since our first date.
When they said, “You can’t have your testosterone anymore,” I started having hot flashes. I went through something similar to menopause. I coined it androgenopause.
It was a rough few years. I decided that I was going to transition. If I only have a few years left and I don’t feel male anymore, I better live it authentically.
My cancer was aggressive. I underwent surgery in January 2018 called a robot-assisted laparoscopic prostatectomy (RALP). The pathology report indicated that the margins were positive and there were some cancerous cells in my bladder neck. My PSA didn’t go all the way down. They expected it to go to 0 after they removed the gland.
They recommended adjuvant radiation, so I saw the radiologist. They gave me a little tattoo right where they would hit their beam. I did 18 rounds of radiation over a few months. The surgery and radiation took their toll on me.
I was already non-binary and I had begun my transition hormonally, so if I don’t need my testicles, they’re not my friends anymore.
Removing Both Testicles
The cancer still didn’t go away. My PSA went down to 0.15, but it started climbing back up. Before we knew it, it was 4.5. I said, “Testosterone is not my friend.” I was already non-binary and I had begun my transition hormonally, so if I don’t need my testicles, they’re not my friends anymore. I did a bilateral orchiectomy. I had a difficult time with that surgery. My body did its job and I started feeling better, but it still didn’t bring down my PSA. It took it down a little bit more, but it was still rising.
Urology referred me to oncology. The first oncologist I saw talked to me after I had sent her an email before my consult. I told her I’m a trans woman, I’ll be presenting feminine, and these are my pronouns. I hadn’t changed my name yet because I had to wait a while before I could do that, so she still saw my former name in my chart.
She wasn’t sure how to deal with a trans woman with a traditionally male disease, so she referred me to an oncologist at Rice University. He saved my life. My PSA went down to 0 and I’ve been on treatment for four years. I’m surprised that I survived this long, as aggressive as my cancer was. I thought I had maybe two years. I made some changes. I’m happy and I’m trying to keep a good attitude. My cancer hasn’t killed me yet and as far as I know, my PSA is still close to zero or undetectable.
My prostate cancer influenced me to live more authentically… With my diagnosis, I got lemons and made lemonade.
Reaction to Being Diagnosed with a Masculine Cancer
I rationalized it as a bunch of cancerous cells in my body that don’t define who I am and that I didn’t have much control over. Things happen. I didn’t have control over having cancer.
I knew that I was non-binary, but I had to come out to the world when I transitioned. I don’t blend in and I don’t care if I don’t. I’m going to be me. Everybody’s got a little ugly in them and everybody’s got a little pretty in them. Nobody’s perfect. I decided to be my authentic self.
My prostate cancer influenced me to live more authentically, to live more honestly, to be braver, to have greater confidence, to be a richer person, to be a more beautiful person I hope, and that’s been a gift. With my diagnosis, I got lemons and made lemonade.
Trans women exist. They also have prostate glands, even after gender reassignment surgery.
The Importance of Including Transgender Women in Prostate Cancer Research
What I would like to help happen is for them to find new treatments that address prostate cancer without androgen deprivation therapy. I’d also like for the whole profession to quit talking about men with prostate cancer. I don’t consider myself male. Why don’t we talk about people with prostate cancer, patients with prostate cancer, or individuals with prostate cancer? Why all the mispronouns?
I’d like to change society so that they realize that pronouns are important. I correct people when I get misgendered. I used to get irritated; now, only if it’s done cruelly. If it’s accidental, I correct them and float right down the road.
With the community at large, the reason I do interviews is so that we can talk about patients with prostate cancer and recognize that trans women exist. They also have prostate glands, even after gender reassignment surgery. They don’t remove the prostate. I’d like to educate more people, more trans women specifically, to get their PSA checked and to monitor it.
I’d like to encourage the medical community to be aware that trans women have prostates too. Ask people what their preferred pronouns are. Put it on the forms that patients fill out. Practice using them.
I’d like to educate more people, more trans women specifically, to get their PSA checked and to monitor it.
Words of Advice
Secrets are toxic. Closets are places where you keep your clothes and not where you live. They’re dark and cramped. Authenticity is knowing who you are, being who you are, and being comfortable with who you are. It’s a gift that you give yourself.
Celebrate yourself and love yourself. I still have some masculine traits. I still have my masculine memories. I learned to love myself as this magnificent blend of masculinity and femininity. Whether it’s magnificent or not, it is to me. I like that I’ve been able to do that with myself. If you don’t love yourself, nobody’s going to love you. Go have fun, explore it all, and enjoy what you like.
Special thanks again to Johnson & Johnson for supporting our independent patient education content. The Patient Story retains full editorial control.
Nina, diagnosed with stage 4 metastatic breast cancer at 34, shares her experience of navigating the complexities of her illness and advocating for her health. She initially noticed a hardening under her left armpit. A year later, the lump grew and her breast showed signs of dimpling. A mammogram and ultrasound finally revealed an abnormal lump and a biopsy confirmed stage 3 breast cancer. Shortly after, scans showed the cancer had spread to her spine, escalating her diagnosis to stage 4.
Nina quickly shifted into a problem-solving mode, managing her treatment plan, scheduling appointments, and staying organized amidst the overwhelming process. She expressed how emotionally challenging it was to balance her feelings while supporting the emotions of those around her.
Her treatment plan included chemotherapy, followed by a lumpectomy, and radiation on both her breast and spine. She continues to undergo regular infusions and medications to keep the cancer at bay. While the chemotherapy caused a lot of side effects, including hair loss, neuropathy, mouth sores, fatigue, and brain fog, she found strength in adapting to these challenges. Despite needing to remain in treatment indefinitely, her current scans show no evidence of disease.
One of the most challenging aspects of her cancer experience was induced menopause, which affected her physically and emotionally, particularly the loss of her ability to carry children. The lifestyle changes brought about by cancer were also difficult for Nina. However, she found solace in documenting her experience online, helping others understand the realities of living with cancer, especially young women and women of color.
Sharing her story became a way to raise awareness and a form of therapy. Nina’s advice to others is to advocate for themselves and to practice radical acceptance of the life changes that cancer brings. She emphasizes the importance of self-love and reevaluating what truly matters during difficult times.
Name: Nina M.
Diagnosis:
Breast Cancer
Staging:
Stage 4
Symptoms:
Hardening under the armpit
Lump & dimpling in the left breast
Treatments:
Chemotherapy
Surgery: lumpectomy
Radiotherapy
Hormone-blocking medication
Targeted therapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Lung cancer doesn’t discriminate. While a majority of cases are linked to a history of smoking and diagnosed over age 65, it can affect anyone, regardless of lifestyle, background, or age. In this new series, Anyone with Lungs Can Get Lung Cancer, we bring you real stories from patients who never thought they’d hear the words “you have lung cancer.” Through these impactful videos, we aim to shed light on the journey of lung cancer patients and the realities of this disease.
Whether you’re a patient, a caregiver, or simply looking to understand more about lung cancer, these stories can offer hope, perspective, and perhaps a new outlook on what it means to be affected by this illness. Join us as we uncover the strength and resilience of the voices of those facing lung cancer head-on while we help raise awareness and break stigmas.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content
Amanda and Ashley were both young and active, yet each faced the life-altering diagnosis of stage 4 lung cancer. They share the difficult journeys that led them to answers, highlighting how early signs were easily mistaken for minor health issues.
From Amanda’s experience of being diagnosed just 10 days after delivering twins to Ashley’s persistent symptoms that were initially dismissed, their stories underscore the reality that lung cancer can affect anyone, regardless of age or lifestyle.
Introduction
Amanda: Before the diagnosis, I lived in my bachelorette apartment with my dog. I was a runner. I worked out. I lived my best life all the time from 30 to 36. It was incredible.
Then the big transition of the diagnosis and a life change happened because, in February 2022, I got pregnant with twins! Then 10 days after I delivered them, I was diagnosed with lung cancer.
Ashley: I was the mom of a boy and a girl who were five and two at the time. I was working full-time. I love going on nature trails and hiking. I was also working out with a personal trainer and weightlifting up until the day the pain started.
Your only prerequisite for getting lung cancer is having lungs. You don’t need to smoke. It doesn’t matter how active you are or how healthy you are. If you have lungs, you can get lung cancer.
Amanda
Initial Symptoms
Ashley: My husband and I were working out with a trainer and one morning, we did a hard HIIT workout and backyard swimming. I noticed that I couldn’t be underwater for a very long time. I went on about my day and started having sharp pain in my right abdominal area in the rib cage area. I thought it was strange but I ignored it.
That evening, we were hosting a small group of roughly 20 people or so. As we were eating, I felt a sharp pain in my right abdominal area and my right shoulder area. I was wondering if it was something I ate or if I had gallstones. The pain was unbearable.
The next day, we went to a local ER. They did a workup and noticed that my lung was full of fluid. Because I was 34 and a nonsmoker, they said, “You have pneumonia and you have a lung full of fluid.” They sent me home with 12 prescriptions.
Amanda: My first symptom was in November 2021, which was a breathing episode that I had overnight. To this day, we still aren’t very sure what it was related to because it felt like I couldn’t breathe all of a sudden and it lasted for about 20 seconds. It was very scary.
I went to my primary care doctor. They did a chest X-ray and a breathing test, and everything came back fine. She said, “You’re 35. We can do more diagnostic testing, but the truth is it was probably some crazy fluke that happened.” I let it go.
A couple of months later, I got pregnant and now I had a new health issue that I needed to deal with.
We kept holding on to hope that this could be wrong. I don’t have cancer. We were in disbelief.
Ashley
Hearing the Words “You Have Cancer”
Ashley: My lips started to turn blue. My husband didn’t tell me then because I was an anxious person in general, but he said we needed to go back to the ER.
They said, “You have a large pulmonary embolism,” and they immediately put me on a blood thinner. I will never forget the doctors’ faces because they were surprised that I survived this. It was only by the grace of God that I went to this hospital because the first hospital completely missed my pulmonary embolism.
All signs were pointing toward cancer. The moment the doctor came in and confirmed it, I completely lost it. I was bawling my eyes out and uncontrollably shaking. It was so unbelievable. I was so taken aback.
I had stage 4 lung cancer. It’s inoperable and it’s terminal.
Amanda: I had no energy left. My heart rate was high all the time. Sometime during my pregnancy, I developed a cough that didn’t go away. All the doctors told me, “Don’t worry, the cough will go away. When you deliver the babies, your heart rate’s going to go down.” Everything was because I was pregnant.
I ended up in the emergency room because of the cough. They did a chest X-ray and found fluid in my lung. The pulmonologist came in and said, “You’re not hallucinating the heaviness that you’re feeling in your chest. There’s fluid in your lung.” Once again, I was told I was so young, so this was probably a fluke. They didn’t know what it was, but they’ll send it to pathology.
I said to myself, “There’s no way this is cancer. There’s no way.” It seemed impossible. I’m a runner. I worked out until I was eight months pregnant with twins. I was 36 at the time of my diagnosis. There was no way this was cancer.
The next day, he called and said it was lung cancer. The lymph node in my right clavicle was swollen to the point that I could feel it. I told him, “I’m going to be diagnosed with stage 4, aren’t I?” He said, “Yes. The fluid is already considered a metastasis.”
Where we’re going to be in 10 years is not where we were 10 years ago, so there’s a lot of real hope.
Amanda
Living with Stage 4 Lung Cancer
Ashley: This has impacted me most with my kids. I quit my full-time job so that I can soak up all the time with them.
It’s also a shift because I’m such a data-driven, logical, realistic person. Cancer has taught me to live with optimism and hope.
Amanda: Everyone around me forgets that I have lung cancer. No one treats me any differently until I tell them what’s up. I’m training for a 10K. I work out every day. I chase after my children at the park. I don’t look any different than anyone else.
That’s where the science is today. If I can get all of the medicines to push me out long enough, if I can get 10 years, where we’re going to be in 10 years is not where we were 10 years ago, so there’s a lot of real hope.
There is HOPE with This Disease
Ashley: Have hope. My faith is everything. Think positively. Think that you are healed. Keep walking like a healed person. Keep working out like a healed person. Keep doing life like you are healed.
Advocate for yourself. Prepare. Don’t trust one doctor. Get as many eyes on the glass as possible. Your life is worth it.
Amanda: Hopeful is the only way I know how to be. I’m a glass-half-full optimist all the time. I try to find a good balance between the hope of science and medicine and the reality of my situation. The amount of research going on in lung cancer is amazing, hopeful, and incredible.
The Power of Knowledge: Biomarkers
Jill and Luna share their intertwined journeys with lung cancer. For Jill, a history of lung cancer in her family led her to advocate for early detection, and she was diagnosed at 39. Meanwhile, Luna offers her own experiences and perspective on navigating life with lung cancer.
Together, they discuss the emotional impact, the advancements in genetic testing, and how targeted therapies have reshaped their lives.
Introduction
Jill: My story is quite different than most people because it started long before I was diagnosed. When I was 13, I lost two grandparents to the disease within weeks of each other. After six months, my dad was diagnosed with lung cancer and he died three months later at the age of 41. When I was in my 20s, both my mom and my aunt died of lung cancer.
Luna: I never had lung symptoms. The week before I was diagnosed, my family and I were on an incredible trip to Machu Picchu. Two days after we returned, I had incredible abdominal pain. I wascertain I had some infection from drinking bad water in South America. My husband’s a pediatrician and he decided that I needed to be seen in an ER. From there, we did imaging and I was found to have advanced cancer.
My doctor said, ‘I don’t think it’s a coincidence. You should get a scan for a baseline and we will go from there.’
Jill
Jill: I remember trying to understand how this happened and that it could not be a coincidence. That’s when I started advocating without even knowing it by pushing doctors. Finally, my doctor said, “I don’t think it’s a coincidence. You should get a scan for a baseline and we will go from there.”
I got a baseline scan and the scan was clear. I was 30. Everything looked good. Then I had four kids, so I skipped and waited five years. I got another scan at that point and they found a nodule. Now, at that time, we learned about ground-glass nodules, so we watched it.
I got follow-up scans six months later, another one six months later, and then a year later. Sure enough, a year later, that ground-glass nodule took a nasty turn and that was when I was diagnosed.
Getting the Official Diagnosis
Luna: He said, “We found a lesion in your lung, liver, and bones. We want to admit you so we can figure out the origin of these tumors.” Finally, I said, “Time out. Are you telling me that I have cancer?” And he said, “Yes.”
I was stunned. I had always been such a healthy person. They told me that they thought I had lung cancer. I couldn’t believe it because I had no risk factors for lung cancer. Back then, I was ignorant enough not to realize that people who never smoked could even get lung cancer.
My doctor suggested that I get tested for this newly described gene mutation… I was positive for ROS1.
Luna
Jill: All I could think about was that I was diagnosed with the same disease that killed my mom and my dad. I still get emotional when I think about it because those were the two most difficult times of my life.
The only thing worse than being diagnosed with cancer is watching the people you love suffer and the fear in their eyes because of your diagnosis. I could almost feel it because I could identify with it.
But then I thought, “Okay,I’m going to be the story of hope. I’m going to be the poster child for early detection.”
Biomarker Testing
Luna: The next step was to do a biopsy. In 2012 and early 2013, they started testing for tumor markers. At the time, there were only two, but I came back negative for those.
I started traditional chemotherapy and when we did follow-up imaging, I had disease progression, so it was not helping me at all. That’s when my doctor suggested that I get tested for this newly described gene mutation, ROS1. It was new and it accounted for about 1% of people with adenocarcinoma of the lung. I thought that meant a 99% chance that I wasn’t going to have this mutation. My husband and my oncologist talked me into it because they said, “If you have it, there is an oral chemotherapy for it.”
I was positive for ROS1. We wrangled with our insurance company, but as soon as we got that, I started crizotinib. I have been on it for almost 12 years now and it’s controlling my cancer. I responded well to the medication and I’m among a handful of people who are getting long duration on this oral chemotherapy.
The true value of all this research for patients and families is hope. Hope represents a chance and every patient deserves a chance.
Jill
Jill: I got the testing done and I was EGFR positive. It guided my treatment from there because adjuvant therapy for lung cancer at the time had very minimal benefit, but I needed to be able to look my kids in the eyes and know I did everything in my power. I had already planned that I would look at adjuvant therapy after surgery as insurance. I needed to do it. I discussed it with my doctor and I ended up going on targeted therapy.
Living with Lung Cancer with Hope
Jill: My dad died three months after he was diagnosed, which was a few weeks before I graduated 8th grade. My mom died six months after she was diagnosed, which was six months before the birth of my daughter.
There’s so much stigma surrounding smokers. Even if I did smoke, I do not deserve lung cancer.
Luna
But because of advancements in research and treatments, I have lived for15 years. I have celebrated moments and milestones with my family. Those are the treasured milestones that were stolen from me and my parents because they did not have the treatment options that are out there now. The true value of all this research for patients and families is hope. Hope represents a chance and every patient deserves a chance.
Luna: Neither one of my parents had a cancer diagnosis. There are a lot of people who have asked me, “Do you ever wonder why you?” I take that and flip that. I always wonder, “Why not me?” I never took it personally. It’s better for me, too, because there’s so much stigma surrounding smokers. Even if I did smoke, I do not deserve lung cancer.
The Many Faces of Lung Cancer
Donnita, Sydney, and Calvin share their journeys with lung cancer, debunking the myth that only smokers are at risk. Despite quitting smoking 14 years prior, Donnita faced a stage 1 lung cancer diagnosis, while Calvin and Sydney—both never-smokers—also received shocking diagnoses.
These survivors emphasize that lung cancer isn’t just a disease of someone with a smoking history. Their stories encourage awareness, empathy, and early testing to prevent lung cancer from continuing to be the number one cancer killer.
Introduction
Donnita: I was diagnosed with stage 1A2 non-small cell lung cancer adenocarcinoma at the age of 68. I always thought that it was a possibility because I had a significant smoking history. I was hoping that because I had quit smoking 14 years prior, I had mitigated my risk.
Sydney: I’m a physician and patient living with stage 4 lung cancer. I was diagnosed at the age of 33 in 2017 when I was going through my medical internship for residency. Getting the diagnosis was a big slap in the face. It was so ironic that I was so anti-smoking, trying to prevent lung cancer, and then I got diagnosed with it anyway.
Calvin: I was diagnosed with stage 1 lung cancer at the age of 33 in 2020. I’ve never had major surgery. I’ve never only lived with one lung. I don’t know what the reality of that is.
I was hoping that because I had quit smoking 14 years prior, I had mitigated my risk.
Donnita
Initial Symptoms
Donnita: I had no symptoms before my lung cancer diagnosis. In 2018, I read in the benefits brochure of my insurance that it was one of the wellness checks and that I was eligible for it. They said, “You need to get to a pulmonologist immediately. It’s urgent.” From the time I had my screening to the time I was on the table for surgery was six weeks. It happened quickly. My head was spinning.
Sydney: I’m originally from Jamaica and I was working in the medical system there. I recognized that something was off when I was running and felt like I was huffing and puffing like an old man. For me, that was unusual. I woke up one night feeling like I was having difficulty breathing.
Calvin: My daughter is allergic to peanuts. We were at an allergy and asthma center getting her tested and I asked her doctor, “Can I get a meeting with you? Because I supposedly have had adult asthma for the last few years.” She gave me some asthma tests and she said, “You need to get X-rays right now.” Then they said I needed to go to a pulmonologist.
I went to the pulmonologist and did a bunch of tests. She said, “You have one of three things. Either you have this fatal lung disease and you’ve got maybe 6 to 12 months, you have cauliflower lung, which is what a lot of people get from vaping, or you have lung cancer.”
I woke up one night feeling like I was having difficulty breathing.
Sydney
Navigating a Lung Cancer Diagnosis
Donnita: They found a suspicious nodule. I didn’t even hesitate to think it was lung cancer. It was an immediate thought in my mind, but I’ll never forget how very calm I was. I didn’t connect the dots at that point. I didn’t realize that I had been a victim too.
I was born in the mid-50s and I had been a victim of the glamorization of the tobacco industry. I didn’t realize that’s the way society was and I was pulled into it. I didn’t understand how addictive it was. I didn’t connect the radon exposure. I didn’t connect the asbestos exposure. All of that was part of my growth.
My heart still breaks for those who are diagnosed at a later stage, but I’ve managed to get past my survivor guilt as I realized that I was a victim too and that I didn’t deserve to get lung cancer.
Sydney: When I was diagnosed, my father was pretty upset because we missed it in Jamaica, but I look at it differently. I don’t want to say everything happens for a reason. What reason would there be for me to get lung cancer?
Being diagnosed when I was in the US gave me access to all of the tests. It gave me access to learning that I had a biomarker and that I didn’t have to do surgery or chemotherapy. I started on targeted therapy straight away.
Even though my diagnosis is stage 4 and that sounds so scary, I have fortunately been pretty functional, even with my metastasis to the brain. It could’ve been found earlier, but my quality of life probably wouldn’t have been as good as it is now.
Calvin: When we went in, our surgeon said there’s a small chance they can save half the lung. He walked through the process and said, “I need you to give me permission that no matter what, I can do what I think is best.” I said yes.
Shortly after, he says, “It’s worse than I thought. It’s in another area. I could try and save half the lung, but if I do, you’ll probably be back here in two years to take it out. Not worth it.”
I had to relearn how to walk, how to urinate, everything. I wasn’t able to see anyone else, particularly my daughter and my mom. If I had known four years prior when I was first getting sick, would they have immediately diagnosed and figured it out? I don’t know that I would have cared as much because I didn’t have my daughter then. Now, I knew I need to get back to as best as I can be because I’m her dad. I’m the one who she plays with. I need to be able to still do these things.
If I had known four years prior when I was first getting sick, would they have immediately diagnosed and figured it out?
Calvin
Breaking the Stigma Surrounding Lung Cancer
Donnita: When I was about 11 months old, my mother had a professional portrait taken of me. She had me all dressed up in a pretty pink dress, but I was cranky and fussy.
My mother was a smoker. Back then, women always had their cigarettes in a cigarette case. She took her pack of cigarettes and put the pack in my hand. There for eternity is my beautiful baby photo with me sitting with a pack of cigarettes in my hand. That shows you how the norm was and how acceptable that was to do that. She thought nothing of putting a pack of cigarettes in my hand for a professional photo.
Sydney: Lung cancer is evolving and we need to get rid of this stigma. Too many times, when I tell someone of my diagnosis, the first question is: did you smoke? The answer is always no, but should that matter?
I find that there’s a general lack of empathy for lung cancer patients and that’s what translates into the resources that lung cancer patients have. The research is underfunded even though it’s the number one cancer killer for both men and women. Having younger and younger faces come up and showing that anyone with lungs can get lung cancer will help to break this stigma so that we can get the awareness that we deserve.
You don’t need to be a smoker to have lung cancer.
Calvin
Calvin: None of us are standard anymore. You don’t need to be a smoker to have lung cancer. There are people still running triathlons who have lung cancer. If you think there’s something wrong, get checked and get tested.
Donnita: When I first found out I had lung cancer and when I first found out others who had lung cancer that didn’t have a smoking history, I felt incredible shame. Nobody should feel shame because nobody deserves lung cancer. Smoking is a very addictive habit. There are other risk factors too. I had the risk factors of exposure to radon and asbestos. I had a smoking history, but that does not mean that’s what caused my lung cancer.
Doctors on the Frontlines
Dr. Jeff Velotta, a thoracic surgeon, and Dr. Nasser Hanna, a medical oncologist, share their insights into the evolving landscape of lung cancer treatment and awareness. Together, they shed light on risk factors like secondhand smoke, radon, and air pollution, while offering practical advice on prevention and early detection.
They discuss the challenges of early diagnosis, the impact of stigmas around lung cancer, and the critical need for expanded screening criteria.
Introduction
Dr. Jeff Velotta: I’m a thoracic surgeon in Northern California. My wife’s a primary care doctor and we have two young boys.
In my first five years, I was operating almost every day and was always in the hospital. Even though I was mostly operating and seeing patients, I was interested in coordinating the research part of it with who I saw. I started that early but on the side. I was seeing a lot of women and a lot of nonsmokers with lung cancer. I thought, What’s going on here?
Dr. Nasser Hanna: I’m a medical oncologist at Indiana University. My wife Amy and I have four children.
After you’ve done this for a while and you’ve borne witness to the things that you’ve seen, like the patient’s difficulties and suffering, you wake up thinking about how you can make a difference.
I take care of patients two days a week. I lead a number of research efforts to try to find better treatments for lung cancer. I chair End Lung Cancer Now and we do a tremendous amount of advocacy work.
Early-stage lung cancer usually does not have any symptoms. They are only two ways that you can discover early-stage lung cancer: lung cancer screening and luck.
Dr. Nasser Hanna
Signs and Symptoms of Lung Cancer
Dr. Hanna: There are hundreds of thousands of people in the US right now who have lung cancer and don’t know it, and that’s because early-stage lung cancer usually does not have any symptoms. There are only two ways that you can discover early-stage lung cancer: lung cancer screening and luck. Unfortunately, we don’t get lucky very often.
Stage 1 lung cancer usually has no symptoms. It’s usually a radiographic finding on a scan. As the cancer advances, you can begin to have symptoms. I categorize them in two ways: local symptoms or systemic symptoms.
Local symptoms are things like the tumor irritating the airway and you cough, maybe the tumor bleeds and you cough up blood, or maybe the tumor obstructs an airway and you get short of breath.
Systemic symptoms are a general feeling of being unwell. You are feeling tired, losing strength, losing your appetite, or experiencing unexplained weight loss.
National Cancer Institute
Lung Cancer Screenings
Dr. Velotta: Women who are younger are unfortunately diagnosed at a later stage because there’s no screening test for them. We know that lung cancer screening is covered by the government, but you have to be 50 to 80 and either a current smoker or have at least a 20-pack year smoking history, which is a pretty significant amount of smoking history. To make it on top, you have to quit within the past 15 years. How many people can calculate that and figure that out? A lot of people don’t do that.
Women don’t smoke as much as men, but they’re more prone to getting cancer per se. However, they’re not getting screened because they don’t qualify since all the studies were done on men.
Lung cancer screening is the single most effective screening modality that we have.
Dr. Nasser Hanna
Dr. Hanna: Lung cancer screening saves lives. If we look at all of our cancer screenings—mammography, colonoscopy, PAP smears—lung cancer screening is by far the easiest to do. There’s no IV. You don’t have to get undressed. You don’t have to drink any prep. You can eat breakfast. You can take your medicines that day. You don’t even have to take your shoes off. There’s no poking, no squeezing, no prodding, no embarrassment. You literally lie down to go through a scanner and it takes 15 seconds.
Lung cancer screening is the single most effective screening modality that we have. The number of people needed to screen to save a life with a lung scan is far fewer than that of all other cancer screenings.
Being Diagnosed at a Later Stage
Dr. Velotta: We have so many patients now who live for years and years with stage 4 lung cancer. Before, almost everybody was dead. Everybody was assumed dead in six months. This is totally not the case anymore.
People are living way longer than they used to. It’s not a death sentence like it was before. Yes, it’s still the number one cancer killer, but we’ve made huge strides particularly in late-stage lung cancer with better drugs, targeted drugs, and biomarkers, so people are living way longer.
I have patients who are at 10 years with stage 4 lung cancer. Five to ten years ago, you would never say that. With earlier stage, we’re doing better because we have better ways to catch it. We have more lung cancer screening tests and we’re coming up with blood tests to see if you have lung cancer. If we can catch it early, you can live a normal life.
Cancer Research UK / Wikimedia Commons
We’ve made huge strides particularly in late-stage lung cancer with better drugs, targeted drugs, and biomarkers, so people are living way longer.
Dr. Jeff Velotta
Dr. Hanna:My youngest patient was 19. She was starting college. I won’t give out too much information because the family is still suffering pain more than 15 years later. Her grandmother died of lung cancer when she was 12 years old. She sang at her grandmother’s funeral. Seven years later, she was diagnosed with lung cancer and at the age of 21, she passed. I’ve had many, but you don’t forget your patients. She’s my youngest. I’ve had some in their 20s and too numerous to count in their 30s.
Staying Positive
Dr. Velotta: Have hope and positivity. Surgeons tend to be a little bit more positive. We say we can cut the tumor out, but there’s always the possibility that it’s going to come back. I never say that. Let the patient ask.
The psychosocial part is so important. Patients care if they can communicate with you. They care that you listen to them. Honestly, a lot of them care if you’re positive or not.
With earlier stage, we’re doing better because we have better ways to catch it… If we can catch it early, you can live a normal life.
Dr. Jeff Velotta
Breaking Down Barriers
Dr. Hanna: Lung cancer is unique in that it is heavily stigmatized. Patients feel guilt and shame. No one deserves lung cancer. No one brought it upon themselves. It’s cruel and inhumane for society to have the attitude of thinking someone got lung cancer because they were a smoker, and have more sympathy for someone who got lung cancer and never smoked.
We should feel equal sympathy for people who are victimized by this horrific disease and suffer incredibly. People with lung cancer unfortunately bear this cruel mark. It’s important to advocate for them. Most people with lung cancer aren’t even currently smoking. Most people have quit.
There are many causes of lung cancer. If you look at Asian women, 80% of Asian women with lung cancer have never smoked. In this country, over 20% of women with lung cancer have never smoked. Why do they get lung cancer? Why do men who’ve never smoked get lung cancer? It’s because other things cause lung cancer.
Other Risk Factors to Lung Cancer
Dr. Hanna: Secondhand smoke can cause lung cancer. If you’re in a workplace where you’re inhaling dozens of carcinogens or you have a family member who smokes who you’ve been around for decades, those can cause cancer. Radon is the most common cause of lung cancer in nonsmokers. And we cannot forget air pollution. Air pollution can cause lung cancer.
The other major risk for lung cancer is having a first-degree relative with lung cancer. If any first-degree relative was diagnosed with lung cancer—your mother, father, brother, sister, or child—then that greatly increases your risk. We should expand eligibility criteria for lung cancer screening because, believe it or not, 50% of people diagnosed with lung cancer don’t meet the screening eligibility criteria.
The Power of Us: The Story Behind The White Ribbon Project
Heidi, a lifelong health educator and fitness trainer, was shocked to be diagnosed with Stage 3A lung cancer despite having no symptoms or risk factors. Learn about the importance of early detection, the stigma surrounding lung cancer, and how advocacy is making a difference in the lives of survivors.
Introduction
Heidi: I was diagnosed with stage 3A lung cancer in October 2018.
I’m a lifelong health enthusiast, health educator, and fitness trainer. I’ve been married to Pierre for 38 years. He’s my high school sweetheart. He’s a retired primary care physician. We have three adult children who are all independent throughout the United States. We are now happy grandparents to two little girls, one from my son and daughter-in-law and one from my daughter and son-in-law.
How I Found Out I Had Lung Cancer
Heidi: My lung cancer diagnosis was a complete shock. I didn’t even have any symptoms that one would characterize as things you would look for with lung cancer. I had an ovarian cyst that seemed a little suspicious, which was unusual for my age, but what was shocking was a mass found in the upper lobe of my left lung and some plump lymph nodes in the middle of my chest.
I was told I had 4 to 6 months most likely and to get my affairs in order. I was in shock.
Heidi Onda
The Shock I Felt
Heidi: I was inoperable based on having multi-station disease, meaning the lymph nodes were in two different stations. The only treatment option I had was chemoradiation.
I couldn’t believe what I was hearing. How could I have lung cancer? I did not have risk factors or symptoms, so how could I be at a late stage? I was told I had 4 to 6 months most likely and to get my affairs in order. I was in shock.
Looking Back at My Childhood
Heidi: I was a goody-goody. I sat right next to the bus driver. I felt stigmatized back then. All the cool kids smoked and participated in this very common behavior even though they were not old enough. It was the cool thing to do. I was the kid who wasn’t invited to birthday parties and was never invited to hang out.
The irony is, all these years later, I am the one with late-stage lung cancer. It shattered a perception that I had of somebody who had lung cancer. I was also very embarrassed. Here I am, a health educator trained in prevention and my husband is a primary care physician trained in prevention. If we didn’t know that people without a smoking history could get lung cancer, why would we expect the general population to know that?
As time went by and I learned more, I began to realize that these were teachable moments. It was important to educate people. If we were not educated as people trained in prevention, the rest of the world would not either.
If we didn’t know that people without a smoking history could get lung cancer, why would we expect the general population to know that?
Heidi Onda
How I Started to Advocate for Lung Cancer Patients
Heidi: I was very focused on getting better and being compliant with all the treatments and everything that I should do to maximize the potential for the treatments to be successful. After over a year, I thought to myself, “I have not met another person with lung cancer. Why do I feel alone?”
I met a couple of people in Colorado who were much younger than me. While these young people were putting themselves out there and trying to get media attention, I was sitting on this quiet story that had been very self-serving. I wanted to get through treatment and see my children.
I started to think about our story: a health educator and a primary care doctor with no knowledge of this. My first thought was it was very irresponsible to stay quiet.
How did a very shy, introverted person end up sharing their story so loudly? That came later. We had efforts across the country. We were meeting up with advocates, survivors, and caregivers. When we asked healthcare teams what they were going to do for lung cancer awareness month, the responses were very dismissive. They said they would get back to us, but they never did. They were ignoring our outreach.
This came almost full circle in September 2020. I got an email saying that they have white lights in their parking lot that get turned on every night and their doctors wear white coats, so they recognize lung cancer more than any of the other cancers. I thought to myself, “Why was it okay to communicate with me disrespectfully and in such a humiliating manner because my cancer originated in my lung?”
Anyone with lungs can get lung cancer. No one deserves it. Today, there is great hope, even with a late-stage diagnosis.
Heidi Onda
Creating The White Ribbon Project
Heidi: I spend many of my waking hours advocating and that’s when the white ribbon was born. I screamed at Pierre to make me a big white ribbon out of wood to throw on the front door so I could get my neighborhood to understand. “Hey, remember me? This is Heidi, your local fitness trainer. Someone in this house has lung cancer and guess what? It’s me!”
Pierre: She started posting on social media and within a day, other survivors started seeing that, asking where she got the ribbon, and if they could have one as well. She asked me if I could make more. Then more requests started coming in and she started making them as well.
When she came into contact with other lung cancer survivors, caregivers, and lung cancer advocates, they got together and said, “Let’s work together on this.”
What We Stand For
Heidi: There are 3 main points that The White Ribbon Project wants to make sure everyone hears. Anyone with lungs can get lung cancer. No one deserves it. Today, there is great hope, even with a late-stage diagnosis. I’m sitting here, proof of concept that research matters.
If you’re eligible for screening, you want to get screened because it could get caught earlier and you’d be doing a lot better than I’m doing six years out. You have a high chance of hitting that 5-year survival or being cured with surgery if it gets caught early. Focus on the hope in research. We’re doing better and living longer. Screening is available and people need to know that this is all within reach.
Heidi: Aside from raising our family, this has become our life’s work. It’s important work and has been in the shadows for way too long. There is no excuse for it when it’s the number one cancer killer, which was one of the most outrageous things that I didn’t know and no one else seemed to care about that.
Pierre: I’m so incredibly proud of her. I feel bad because I don’t know if she realizes that I’m in awe of what she’s accomplished and how she’s channeled her anxieties and fears. If the roles had been reversed, I probably would have retreated inward and not gotten involved. I would have had a much more challenging time dealing with my condition and would not have spent my time as productively and not as grateful.
Bringing Community Together
Heidi: Look at The White Ribbon Project as a flag. There were all these efforts in different silos going on, but what was missing was this symbol of hope for people to literally wrap their arms around.
Sometimes, I look at this white ribbon as trying to tie that whole community of lung cancer together—people with mutations, people with smoking histories, people without a mutation, people undergoing immunotherapy, people who have had surgery, and then all the key players that take care of us, like the advocacy organizations, the physicians, the nurses, and the healthcare teams. If we can all unify and work together, what could we accomplish?
We are accomplishing things. Getting people in organizations to work together seemed impossible. Now, we are watching this happen in real time and seeing progress. We are seeing positive change. We still have a long way to go, but the future looks bright.
