Tag: Self-advocacy

How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

Post author By Katrina Villareal
Post date September 8, 2025
No Comments on How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

September 8, 2025

How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

When Amina was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021, her life as a 21-year-old dancer in New York City turned upside down. She had been training in school while navigating the pandemic when her health began to slip in confusing ways. At first, she thought it was stress, COVID, or exhaustion. But when she couldn’t climb stairs without feeling faint, woke up drenched in night sweats, and lost her appetite, she knew something was wrong.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

Unfortunately, getting answers wasn’t easy. Without a primary care doctor and stuck between pediatric and adult care systems, her diagnosis was delayed for months. She had to advocate fiercely for herself, even paying out of pocket for scans when appointments kept falling through.

Eventually, an MRI and biopsy confirmed what doctors had been circling around: Hodgkin lymphoma. Hearing the official words was scary but also validating. For months, Amina had felt invisible in the healthcare system. Finally, someone acknowledged her pain and gave her a path forward. Her oncologist at Johns Hopkins immediately recognized the seriousness of her case, which gave her a sense of trust and relief.

Amina’s treatment lasted seven months and included intense chemotherapy. While she was grateful to receive care as an outpatient, the physical and emotional toll was heavy. She lost her hair, felt disconnected from her body as a dancer, and struggled with neuropathy in her feet. She also wrestled with body image challenges while trying to keep up with the demanding culture of dance. Still, she leaned into small joys, like having ice cream when nothing else tasted good, and gave herself space to rest when she could.

Being so young in a cancer ward was isolating, but Amina refused to stay silent. She began sharing her story on social media, connecting with other adolescents and young adults (AYA) navigating cancer and health inequities. Many reached out, saying they felt like they slipped through the cracks. What started as venting grew into a form of advocacy, helping others feel seen.

Amina’s family, friends, and community were her anchors. Friends showed up with flowers, trips, and support; her parents carried her through appointments and recovery. Later, when her father was diagnosed with acute myeloid leukemia, she was able to use her experience to help him access care quickly.

Now in remission, Amina embraces what she calls “thrivership” — living with intention, protecting her energy, and finding happiness wherever she can. She wants other young people with cancer to know that life doesn’t have to follow a strict timeline. Progress may look different than planned, but with patience, connection, and self-advocacy, it’s still possible to create a fulfilling and beautiful life.

Watch Amina’s video or read the interview transcript below to find out more about her story:

From dance rehearsals to chemo infusions, Amina shares the raw reality of being young with cancer
Why social media became her lifeline during treatment
The surprising way her cancer diagnosis helped her father
How survivorship reshaped her priorities and sense of joy

Name: Amina V.
Age at Diagnosis:
- 21
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4B
Symptoms:
- Severe fatigue
- Shortness of breath
- Night sweats
- Bloating and stomach distension after eating
- Abdominal pain
- Little to no appetite
- High fever
- Lump in the pelvic area
Treatment:
- Chemotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

Hi, I’m Amina
When something first felt off
There was a big delay in my diagnosis
How I found my care team
When I heard the words “you have cancer”
What my treatment plan looked like
Managing the side effects of chemotherapy
How I navigated having cancer so young
My support system helped get me through the hard days
What survivorship means to me
What I want others to know
How often I’m monitored
My dad was diagnosed with cancer after me

Hi, I’m Amina

I was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021.

I’m originally from Washington, D.C., but I live in New York City now. I’m a professional dancer, so that’s my 9 to 5. When I’m not performing, I also work as an educator and rehearsal director for young artists and teaching dance. Dance is my number one love and my number one passion, and it’s also what I do for fun.

My friends would say that I’m a bubbly person. I’m definitely very friendly, and when I’m out with my friends, I’m very outgoing. I like to have a good time, try new things, and new experiences. Above all else, I always like to show up for my friends and the people I love and who love me. I believe in loyalty and having each other’s back.

There’s a special photo that stands out to me right now, which is a picture of me and my dad at Light the Night, which is an event by The Leukemia & Lymphoma Society, now called Blood Cancer United. Then Leukemia & Lymphoma Society would hold an event for cancer survivors and honorees, like advocates in the cancer community, and I was there with my dad and they were honoring me. But at that time, he was also about to find out that he had acute myeloid leukemia, so it was a moment that symbolizes me finishing my journey and him starting his. Looking back, it’s crazy and special.

When something first felt off

I first found out I was sick in my final semester of training. I went to The Ailey School for four years. It’s conservatory-style training, pretty much at the highest degree, preparing you for a professional career as a performer. It was also during the COVID-19 pandemic, in the fall of 2020, and everything was messed up. We were in masks. Everyone thinks that a cold could be COVID. I had been feeling off for a while, but I chalked it up to flu season. It’s COVID. I have to quarantine. But then when I went back to school and my regular routine of five classes a day, I found that I was super fatigued at the end of the day. It wasn’t the regular kind of tiredness. I couldn’t go up one flight of stairs. And in New York City, you’re walking everywhere all the time. I have to walk up the stairs in my apartment building and walk up the stairs to go to the subway. Tthere were some days where I felt like I was going to pass out. That was red flag number one.

The second red flag was night sweats. I would wake up in the middle of the night and my clothes would be drenched and my bedsheets were wet. I would always joke and say it was menopause, but I was 21, so this was not menopause. Why am I getting hot flashes in the middle of the night?

The third red flag was I had little to no appetite, and whenever I did eat, my stomach would swell and distend, so much. I would have cereal in the morning and you would think I went to an all-you-can-eat buffet. Then I would have to go to class and be in a leotard and tights with a bloated stomach. It felt awful.

I first noticed these symptoms in December 2020. I got it checked out in 2021, around early January and February. But they continued until my treatment started, which I didn’t start until August.

There was a big delay in my diagnosis

There was a lot of trial and error. I didn’t have a primary care physician. I was there for school, so I relied on minute clinics. But the one doctor I had a good relationship with was my OB-GYN. I felt a lump in my pelvis, which I thought might be a cyst, so I went to her. She recommended getting an ultrasound and doing bloodwork, and that’s when we found that my blood levels were off the charts. She passed me along and pretty much said, “This is out of my jurisdiction. However, I highly recommend you get an MRI and take this to a hematologist.” That then led to months and months of trying to get appointments because this was in 2021, so getting a doctor’s appointment was difficult in the city.

I learned that if you’re not 22, you’re still considered pediatric. I was making appointments at grown-up doctors’ places because I thought I was a grown up, and then they would get canceled because my insurance was saying I was still a kid, so I needed to go to the children’s hospital. I think that led to a lot of delays in diagnosis because I wasn’t officially diagnosed until July.

I ended up having to take matters into my own hands and get an MRI at an out-of-network clinic, and that’s when they found the inflamed lymph nodes. But from there, I had to wait another month or two for a biopsy appointment. In between that time, my symptoms got increasingly more aggressive. I ended up being hospitalized and that’s when they told me that I might have cancer.

My boyfriend was with me at that time. We were living together during this whole process. My parents had also been aware that I’d been sick and they’d seen the MRI results, which showed the inflamed lymph nodes. Everybody seemed to have a clue that I possibly had lymphoma, except for me, because I didn’t know what that was. Everyone was on high alert. I had a fever of 104℉ one night, so my partner took me to the emergency room.

I was stressed and afraid. However, it got to a point where it’s like, “Look. This is my last semester of school. I’m still dancing in a mask. We’re in boxes, social distancing. I either have to think about whether I want to finish strong so I could potentially get the job or take care of my health and set myself up for the long term.” That was the decision I ended up making. I would miss a lot of classes because I had to go to doctors appointments or I would try to be as transparent as possible with my teachers, sharing the information I have, and letting them know that I wasn’t at 100% and I don’t know why, but that I’m doing my best.

I’ll be honest, advocating for myself didn’t come easy to me. I was trying to do everything the right way, following the doctor’s orders, listening to my parents, and waiting. But when, time and time again, doing things by the book was not working in my best interest, that’s when I said, “I need to get this done. Where in this city can I get an appointment tomorrow? And if it costs a lot, then that’s just the price I have to pay, but I need to know something.” The waiting was driving me crazy.

I got treated in D.C. That came about because of all the hoops I had to jump through on my own in New York. I was young. My boyfriend was also young at the time, so it was a lot for us to manage on our own. My parents wanted me to move back home and get treated there so that they could help.

How I found my care team

It was a very fast-moving process because everything took so long that we tapped into our family and friends resources. I was very fortunate that my mom had a cousin who worked at Johns Hopkins and she helped with speeding along the process of getting an appointment and getting all of my pathology from New York passed along to the hospital in D.C. so that I can be seen and treated quicker.

When I met my oncologist, he was the first doctor who validated how I felt. They kept saying I might have lymphoma and the whole hesitancy to be transparent with me was that I was young, so they didn’t want to be negative or dampen the mood too soon without having all of the answers. I understand that perspective, but I felt like I was dying. For them to say that it might not be anything that serious sucked because what, was I going crazy? I knew I wasn’t. But he was the first one to look at me and say, “Yes, you are very sick. Yes, this is 100% lymphoma. We’re getting your pathology. However, you’re checking all the boxes and we need to get you started next week.”

I ended up trusting him 100% because he looked at me, did the exam, looked at my reports, and shared in my frustration. Even without the pathology to 100% confirm it, everything else lined up with a patient who has Hodgkin lymphoma. The outlier was how young, active, and healthy I was. Besides that, everything else made sense.

The fact that he shared that frustration and validated how I was feeling made me feel close to him and made me pretty much trust him with my life because that’s what you’re doing when you’re choosing an oncologist.

When I heard the words “you have cancer”

I was very emotional. It was a relief to have an answer. I remember having a little bit of jitters or goosebumps because it’s a tough reality to face. However, on the flip side, it was nice to have an answer to all the questions that I had swirling around in my head for months. I’m not immunocompromised. It isn’t COVID or the flu. This is exactly what it is and here’s how we’re going to treat it. Having that clarity helped me find peace, oddly enough. I know I was going into the hardest thing I was ever going to have to do in my life and that some people don’t even have to face thankfully, yet I felt calmer having that clarity.

What my treatment plan looked like

I had to do seven months of chemo. It was rough. Chemo sucks. It literally zaps you of any energy. However, in the beginning, I think after my third cycle, I was tired, but feeling better. It was the necessary evil that I had to go through in order to get cured. It’s just hard. Especially since the treatment plan that I had included a specific drug that causes bone pain and another drug that makes you lose all your hair, so it’s tough. I felt like I was losing parts of myself in a sense. I didn’t have any energy. I didn’t want to socialize with people. I wanted to be alone after my infusion days. I would get treatment once a week and then I would have a week to recover. On my off weeks, I felt a little better every time. Every off week, I was getting stronger and stronger and stronger. At the moment, it’s not fun at all, but then the results are worth it.

I was fortunate enough to be an outpatient. I would be in the hospital for a full workday, around 6 to 8 hours a day, and then my dad or my mom or whoever was there with me would take me home.

They gave me this body patch and it would administer medication at home as well.

Managing the side effects of chemotherapy

I developed neuropathy in my feet, which was a tough part of recovery, especially since I need them for my profession. After a few months, I was able to start dancing again. I was even ambitious enough to try and take classes every now and then while I was still getting treatment. It wasn’t at the level I was before I got sick — that took a lot of time — but I was fortunate enough to have a mentor who gave me a space to quite literally fumble around and reconfigure myself. I appreciate her for that because I think that allowed me to get to where I am today.

I didn’t like the way food tasted, which was a big one. I didn’t want to eat anything except Ben and Jerry’s ice cream. My parents would be so concerned, saying I couldn’t eat ice cream because it’s sugar. I said, “Mommy, I have blood cancer. It’s different. And the doctor says I need to put weight back on, so I should eat lots of ice cream.” That was the only thing that I could taste, something sweet

With the chemo, they gave antiviral medication and that made me very agitated. I appreciate my family for being patient with me during that time because I’m sure I was being a diva. Being on different medications puts you in a loopy state. There were a lot of people who visited and were with us in the house, and though I wanted to be social, at a certain point, I would get drained and shut off. Even after I finished, for a few months, I would find that still happening. It’s like this fog went over my brain. My eyes were glazed over and I completely checked out.

It was hard, honestly, because I felt like I had to fake it and make it seem like everything was okay. I didn’t have an explanation at that time as to why I felt awful or uncomfortable. As a young dancer, I was struggling with body dysmorphia. I had to stand for an hour and a half in front of the mirror and even though all I had was cereal for breakfast, I’m bloated and my clothes don’t fit right. I feel uncomfortable, but I still have to go through my day pretending like everything is okay. I have to show up and give the teacher energy.

There was even one moment when I did this photo shoot and the photographer was frustrated with me because I was very quiet and timid, and it was coming through in the photos; in reality, I was just exhausted. I felt tired and everything about being in that space was draining in the moment. It was tough because my job and what I was doing in school was so physical, so there’s no way to dial it back. I either have to push through and push myself to the limit, which often happens. That’s how I got hospitalized. Or I give up and I’m not good at giving up.

How I navigated having cancer so young

I was the only young person in the infusion ward. Whenever I would go, people always thought my dad was the patient, but he was bald by choice and I wasn’t, so that felt isolating

Beyond that, I had just finished school in New York and was building my own life. I just got my own apartment and then I had to leave it all behind and go back home. In a lot of ways, it felt like I was going back in time, like going back to square one. For a little bit, it did break my spirit. I felt defeated. I relied a lot on finding ways to entertain myself and fill my time. Being Gen Z and in my 20s, TikTok and Instagram were my coping mechanisms.

What I think was unique about me being a young person with cancer is I made the choice not to suffer in silence, so I told my friends about it and posted on social media about it. Through that, I was able to find a community of people going through similar experiences at my age. Even though they weren’t physically there with me, I found them online.

When I was in treatment, I was connecting with a lot of people who were asking about my experience and asking for advice for themselves or for loved ones. Even if they didn’t have cancer and were dealing with other health issues, they would ask, “How did you push through? The doctors keep telling you no or to come back when it was worse than it is now, instead of treating you.” By sharing my experience, it opened a can of worms on the fact that a lot of young people, regardless of a cancer diagnosis or not, have this issue where we slip through the cracks of the healthcare system, whether we’re still on our parents insurance or not, and we’re still treated as kids even though we handle all of our own finances and do things on our own. Or we just got booted off our parents’ insurance, so now what do we do?

Through that, I connected with a young woman who was in India getting treated for breast cancer. She was thanking me for sharing my story because she was 30 and she thought that she was the only person dealing with this. I also found a lot of other nonprofits for women like me or young people like me who feel isolated and connect them to each other. What I thought was just me venting turned into a form of advocacy, so when I saw that there was this interest and need for connection, I stuck with it and have met so many beautiful people because of it.

It’s important to have these conversations so that other young people can learn from my “mistakes.” I don’t want to say mistakes because I didn’t know, so by sharing, it hopefully gives others information so that they are more informed and knowledgeable, and feel empowered to speak up for themselves and not take things in blindly.

The hardest thing was accepting that everything was going to change. Not just biologically, but even around me, things were going to change, and a lot of those things would be permanent. My relationships with people, with friends whom I had in New York, and with my community would shift — some for the better, some not so much. I also felt like the world was moving on without me, which was a scary feeling. I needed to focus on getting better, but also, what does life look like outside of this? In that moment, the most frightening thing was the unknown and the change.

I was a little lucky to have had family members who had battled cancer in the past, even though it was in a different form. I have a cousin who is a breast cancer survivor and took her experience of being diagnosed in her 30s and turned it into advocacy, so I had her as a role model. This is hard. Everything is going to change. However, you will come through fortified and stronger. In the moment, it’s hard to believe when people tell you good things and they give you advice. You want to take it all in, but there’s a little voice in your head that says, “I don’t know.” Having her guidance definitely helped a lot.

I had to have trust because in that instance, there’s nothing I could control. My body literally woke up one day and said, “We’re going to shake things up,” and there was nothing I could do about it. Once that switch is flipped, I have to take the necessary steps to fight. I know sometimes that can be tough for people, but I’m comfortable with the fact that I had to battle cancer because it’s literally a war inside my body. I either make the choice to take steps against it or not. I feel like you have to fight against it, not just with how you treat it, but also with your mindset and your mentality. Hope and positivity and a little bit of delulu were all I had.

The sky isn’t even the limit anymore because I’ve been faced with my own mortality. I thought that my life was going to be cut short at 20-something. I’m 26 now and have a whole lifetime ahead of me, so I’m going to do everything I possibly can.

My support system helped get me through the hard days

I have an amazing family that came together to support me during this time, even our community in DC showed up, like my parents’ friends who supported them. I think it’s important for caregivers to also receive support. When I don’t have the energy to greet people, they were still there for my mom and my dad, which made me happy because they’re struggling with this, too. Even though I’m the one who’s actually receiving the medication, they are invested emotionally and financially, and sacrificing their time to be there for me, so I’m glad that they also received support.

Most importantly, I saw who my friends were. Being in New York, there are millions and millions of people here. I like to talk to people, make friends, and hang out. I have friends who took me to a resort while waiting for my pathology report. We had a vacation planned and I said I couldn’t go because I had cancer. She asked, “What are you doing during the week while we’re gone?” I told her I was going to cry in bed at home. She said, “No, we’re going to go,” and she took me to the Dominican Republic. The week after, I had to go to D.C. I had two other friends who would send flowers to my parents’ house and who drove from New York to visit me. It showed me, even when I can’t be there for them the way I want to, that they’re still there for me and it was so beautiful.

What survivorship means to me

Survivorship, or thrivership as I like to say, honestly looks like finding my happy. I try to find happiness and joy in any scenario, living and loving life to the fullest, not putting any limitations on myself, taking care of my health physically, mentally, and emotionally, and protecting my energy.

I found that I don’t need to please people. I don’t need to overextend myself. I don’t need to do things that I don’t want to do or that don’t serve me. Surviving cancer taught me that. A lot of people say, “Wow. I feel like you’ve grown so much.” I just got a reality check. I got a true sense of what matters and how I want to spend my time on this earth.

What I want others to know

Even when it’s hard, it does get better. You don’t necessarily have to rely on things outside of yourself to make it better. Finding what brings you joy and calm is what’s most important, even when you’re going through the hardest or scariest time of your life.

Specifically for AYA cancer patients or young people in general, setting this deadline or checklist for yourself of when and how things need to be accomplished is hindering you from going for it. I had a set plan. I was going to go to this school, graduate, get into this company, and complete these things by this time. When it doesn’t happen, you feel defeated. You feel like you’ve lost, when in reality, it could just be a few more steps away and you just have to keep going. In the arts industry, but also in life in general, I feel like we’re all in a queue. You either decide to stay in the line and see it through, or you get out right before the thing you’ve been dreaming of is about to happen. Youth is a blessing, but we also don’t need to accomplish everything right away. If we stick to it, find our happiness, and keep fighting, then you will achieve everything you put your energy into.

How often I’m monitored

I was being monitored every other month and then every three months. Now it’s every six months. Everything’s been good so far. My doctor has been conservative with the checkups because I’m not doing it with a PET scan, which I think is the traditional way. Because of how advanced my cancer was, I didn’t have the luxury of time to do any fertility preservation, so he wants to limit my exposure to radiation as much as possible.

My dad was diagnosed with cancer after me

It was shortly after I had finished chemo. He started experiencing symptoms and then he was diagnosed almost exactly a year after I finished.

He chalked it up to him getting older. I went through all the hardship I had to go through to help him. AML in your 60s could be a death sentence. Thankfully, there has been a lot of development and research into it, so that it’s treatable now. I can’t imagine what it would have been like if he had to jump through six months of hoops like I did.

In our case, he called me and told me what was going on, asking my thoughts on it, and sharing his experience. I texted my doctor and asked, “Can I send you my dad’s charts? Because it looks scarily similar to what I had. Can he come and see you?” He was able to go the following week.

Some people say, “I would be so upset. How can you stay so positive when all this is happening back to back to back?” I took it as what I went through was not in vain because it’s literally helping my father right now get the treatment he needs and what he deserves. Now he’s still here and in remission. Being in remission and being a survivor doesn’t mean everything’s all rainbows and sunshine, but we both made it through, so for that, I’m grateful.

Thank you for sharing your story, Amina!

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“You Are Not Your Cancer”: Colleen’s Stage 4 Endometrial Cancer Message

Post author By Chris Sanchez
Post date September 5, 2025
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September 5, 2025

“You Are Not Your Cancer”: Colleen’s Stage 4 Endometrial Cancer Message

Colleen discovered she had stage 4 endometrial cancer in 2022, when she was 54. Her story began with severe, unusual menstrual bleeding, which she humorously calls “crime scene periods,” and episodes of extreme weakness. Doctors told her she was just experiencing perimenopause. Her symptoms persisted until she and her husband moved to Germany, where she had a car accident. She was lucky enough to escape injury from the accident — but during her ER check-up, doctors unexpectedly found a mass in her abdomen. This twist of fate ultimately led to her diagnosis.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

After she was diagnosed, Colleen leaned heavily on credible medical resources focusing on endometrial cancer, rather than simply searching online. She underwent a multitude of treatments: a full hysterectomy, radiation, brachytherapy, and chemotherapy. She was initially declared “no evidence of disease,” but later on her doctors discovered that the cancer had spread to her leg and lung. Her voice, once her signature as a singer, was deeply affected, challenging her sense of identity and plunging her into emotional lows. But Colleen ultimately managed to shake off these challenges.

Mental health became a pivotal part of her healing. Colleen found solace in community support, friendships, and maintaining a semblance of independence. Her message is clear: “You are not your cancer.” She urges others to find their support systems, relentlessly communicate with healthcare providers, and cling to personal beliefs that provide comfort.

Watch Colleen’s video and read her story. You’ll find out more about:

How a car accident led to her life-changing diagnosis
“You are not your cancer” — Colleen’s heartening mantra
How losing her singing voice affected her identity
The emotional toll of stage 4 endometrial cancer and finding light in community
The crucial role of self-advocacy in Colleen’s health journey

Name: Colleen J.
Age at Diagnosis:
- 54
Diagnosis:
- Endometrial Cancer
Staging:
- Stage 4
Symptoms:
- Very large blood clots during menstruation
- Anemia
Treatments:
- Chemotherapy
- Radiation therapy: brachytherapy
- Surgery: full hysterectomy
- Immunotherapy

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.

Table of Contents

About Me
When I First Noticed That Something was Wrong
My Symptoms Had Progressed Even Before the Car Accident
The Tests the Doctor Did
The Moment Everything Changed
The Cancer Spread
How My Care Team Shifted When My Cancer Spread
Where I’m At in My Diagnosis
My Knowledge of Clinical Trials
How I’m Managing my Mental Health
What I Want Others to Know

… whatever you believe in, hang on to it. If it’s a religious belief, if it’s a way to lead your life, hang on to those things.

About Me

Hi, my name is Colleen.

I was diagnosed with endometrial cancer in 2022, when I was 54.

When I First Noticed That Something was Wrong

The first time that I wasn’t feeling right, I was living on the island of Guam. It was before COVID, probably in 2019. I was at a volunteering event for the United Service Organizations.

I had to tell the woman that I was working with that I needed to leave, which was very unusual for me, but I was just feeling very unwell. I couldn’t catch my breath and felt very weak. I thought this probably was the onset of a big anemic episode, because then, when I got home, I had what I like to call a “crime scene period” — a menstrual period with very large blood clots.

I couldn’t find a doctor who would take my insurance in Guam. I went back to the States to visit my husband and saw a doctor there. And that doctor said, “Oh, you know, it’s probably just perimenopause. You’re at that age where this can start coming on, so I wouldn’t take it too seriously.”

Then we moved to Germany, and one of the first times I was driving in Germany, I got in a car accident.

They took me to the emergency room. I was totally fine after the accident. No issues. I walked away from it.

But the ER doctor came and said, “You know, we found something unusual in your abdominal area, so we’d like you to refer to our OB-GYN? Are you interested in doing that?” And I said, “Sure.”

Before the accident, I had actually been experiencing more “crime scene” menstrual periods, and they even seemed to be getting worse.

My Symptoms Had Progressed Even Before the Car Accident

Before the accident, I had actually been experiencing more “crime scene” menstrual periods, and they even seemed to be getting worse.

In hindsight, looking back, I was actually having a hemorrhage. I was going through multiple pads in 20 minutes. I would be doubling up on tampons and going through them in 20 minutes or half an hour, which would be described as hemorrhaging if it were any other type of issue. Something that you would need to go to the emergency room for.

But because this one doctor had told me, “Oh, you know, you’re perimenopausal, this just is par for the course,” I thought, “I guess this is normal,” even though it didn’t seem very normal.

The Tests the Doctor Did

He did an ultrasound in his office and went, “Oh, yeah, I’m going to keep you in the hospital.” So, this is still from the hospital stay from the car accident. “We’re going to do a DNC so that I can get enough tissue to send for a biopsy.” Because that’s the other thing with endometrial cancer. If they don’t get it in the right part of your uterus, then you can also have a misdiagnosis, because they’re not getting enough tissue, or they didn’t go to the right area.

Luckily, he was an oncologist before. He got his OB-GYN certification. So he knew a little something about what was going on.

The Moment Everything Changed

I don’t know when I heard the word ‘cancer.’ Well, nobody ever wants to hear that word, but my OB-GYN was really a positive person.

He went, “Listen, we’re going to schedule you for a full hysterectomy. We’re going to take a look around at the other organs in the area, see what’s going on. But if this is in the early stage, this could have a really good outcome for you. So, no need to worry right now about it. Even though I’m telling you ‘cancer,’ and nobody likes to hear that, let’s take each thing as it comes. Instead of trying to see into the future.”

I took it to heart. Generally, I felt okay; I wasn’t hurting and didn’t have a lot of pain at the time.

I actually knew nothing about stage 4 endometrial cancer, let alone endometrial cancer. The education was from what my doctors were giving me here and from going to reputable cancer sites. So, not just using Doctor Google and picking the first article that came up, but from the Cleveland Clinic, Mayo Clinic, MD Anderson, and other leading cancer centers in the US.

I was trying to back up what I needed to do and what the typical treatment would look like.

The Cancer Spread

After that point, I had my treatment.

I did radiation for 28 days. I did brachytherapy, which is an internal radiation in the vagina. Three sessions of that. That’s all standard. I didn’t start with chemotherapy, so they did my hysterectomy in April 2022. I didn’t start my chemo until October, and so then my chemo finished up in around March of 2023. Well, maybe a little earlier than that.

At that point, they considered me “no evidence of disease.”

Nine months afterward, though, right before Christmas 2023, we found out that the cancer had spread to my leg. My leg broke while I was putting on my pants.

Oh, that was a big emotional time. I mean, anytime you hear about bone metastasis, it’s not good news. Cancer is practically impossible to get out of the bone. It’s very hard to treat. Pretty much all you can do is slow it down.

… anytime you hear about bone metastasis, it’s not good news. Cancer is practically impossible to get out of the bone.

How My Care Team Shifted When My Cancer Spread

As my disease was progressing, the doctor said, “Okay, it’s time to move on. We have some other teaching hospitals in the area.”

So he moved me over to get most of my care through those hospitals and through my infusion clinic that I go to now. So he knew when it was time to release me as well. I felt like he was watching out for me and was trying to offer me the best choices that were available.

When I broke my leg, I wasn’t under his care. I was under the care of the orthopedist at the same hospital where he worked. Although he always asked that when I come to that hospital that I stay in his ward. Because he knows my whole history, he can keep an eye out for me.

Breaking my leg was pretty traumatic. I’m kind of a get-up-and-go type of person. I don’t want to be limited in what I can do. I was fighting with everything to get back to driving, get back to being more independent.

I really liked my care team in the bigger facilities, like my radiological oncologist, and I liked that I actually ended up having to see a pulmonologist, because they discovered while I was healing from the femur break that I also had metastasis in my lung.

It was freaky. You can see the damage to my vocal cords. They were extremely swollen from having tubes stuck down so many times during the surgery for my leg. I had a failed bronchoscopy, a successful bronchoscopy, and then the surgery. The pulmonologist at the bigger hospital was really trying to take care of it, but he said, “The damage was done even before I got a chance to get the tubes down your throat.”

I took a good six months, maybe even a little longer, to get any type of singing sound out of my voice, and to have my voice not sound scratchy when I was speaking.

I’ve been known for having a beautiful singing voice. It’s been such a big part of my identity since I was tiny. I started singing when I was three.

My voice is such a big part of my identity that when cancer affected it, it sent me spiraling into a depression of sorts.

Where I’m At in My Diagnosis

I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.

That was miserable, pretty much because I was eating that soft food diet, kind of the same diet as when I was having the radiation therapy in my abdomen. But I would get sores in my mouth, and I couldn’t eat anything. I went from being 200 pounds down to 126 pounds. Then that stopped working because I had another episode.

They decided, “Okay, let’s go back with the traditional chemo, but we’re going to see you every week. It’ll be a lower dose.” That’s what I just finished in July. And then I had a few spot radiation treatments on my leg where it had broken on my knee and on my hip.

And then they found another potential area of concern in my hip. So they did a biopsy of that. It had to be sent to the Molecular Tumor Board.

I haven’t heard back about what molecular markers might be available for other treatments for me.

I had an episode during which I coughed up blood. What with that and my metastases, they said, “Let’s try something other than chemo.” They put me on immunotherapy for about six months.

My Knowledge of Clinical Trials

The doctors haven’t referred to clinical trials. The area that I am in is so rural that I don’t think there are a lot of clinical trials that happen here. And they have used the term ‘palliative care,’ which freaked me out the first time. Because I have stage 4 endometrial cancer, they’re considering everything that they’re doing.

I’ve been on palliative care for a year and a half. They consider it an extra level of care for patients who might need some help doing things.

My infusion doctor said, “We have these teams of doctors and nurses that will come into your house and help you. So, we would call that home health care. Except for your getting a doctor and a nurse coming in.” So he set me up with them.

He added, “The great thing about them is that they can help you manage your pain a lot better than I can.”

How I’m Managing my Mental Health

Unknowns are hard. I like to be in control. So that’s what my stage 4 endometrial cancer experience has been about. Sometimes you just have to release it. Release it and keep pressing. Like with the pain. Keep telling your doctors over and over about it.

It’s also been important to stay connected with my friends and stay involved in the community.

I should also add that maintaining my independence is also really important. Continuing to be able to get myself around if I want to go for a drive, although I’m doing that less and less, because my right leg is the one that has the cancer. So, it’s not great for driving sometimes. I just stay home if I need to stay home.

It’s also been important to stay connected with my friends and stay involved in the community.

What I Want Others to Know

You are not your cancer. You can do what you want to do with it.

Although stage 4 endometrial cancer does have something of my identity. It’s a new identity that I have besides being a singer, a wife, and a singing teacher who is now raising awareness about cancer.

It’s really easy to go inward and reduce your social circle. But I would urge people to find your compatriots, like through some of the groups on Facebook. There are a lot of really great groups on Facebook for a lot of different types of cancer.

It’s interesting how some friends react. Some will become more distant, but others will set up your meal trains and sign up geniuses for you.

I think the biggest thing for me has been a chance to reflect on cancer, and whatever you believe in, hang on to it. If it’s a religious belief, if it’s a way to lead your life, hang on to those things.

Just keep looking up, whatever your diagnosis is.

You are not your cancer. You can do what you want to do with it.

Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Colleen!

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How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer

Post author By Katrina Villareal
Post date August 24, 2025
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August 24, 2025

How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer

Maria’s life changed dramatically in 2021 when what she thought was a simple stomach issue turned out to be stage 4 stomach cancer. She was an energetic, vibrant former model and devoted mom, busy moving during the pandemic. Her initial symptom seemed minor, but rapid, unexplained weight loss, fatigue, and vomiting pushed her to seek urgent care. An emergency endoscopy revealed something far more serious.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

From that shocking diagnosis onward, Maria faced the disease on multiple fronts — physically, mentally, emotionally, and spiritually. She leaned deeply on her faith, her church community, and her close-knit family. Prayer became a daily anchor, not just for comfort but as a source of strength and hope. She joined her church’s prayer team, finding meaning in supporting others even as she navigated her illness.

Physically, Maria stayed active even on her weakest days. She walked on a treadmill, sang, and did small acts that made her feel good because they reminded her she was still living. She embraced a healthier diet, adapted her routines, and refused to let cancer completely define her daily life.

Medically, Maria’s path was complex. After initial chemotherapy, she underwent laparoscopic surgery at Memorial Sloan Kettering, which removed the tumors blocking her digestion while preserving her stomach. For a time, things looked promising. But multiple recurrences brought more chemotherapy, changes in treatment, and targeted radiation. She sought second opinions at top cancer centers, navigated genetic testing, and made thoughtful decisions about her care, always emphasizing self-advocacy.

Spiritually, Maria experienced a transformation. Before her diagnosis, she wasn’t a particularly spiritual person, but cancer shifted her perspective. She says faith not only changed her outlook but also helped her body heal. She credits her medical team, prayer, and staying active for getting her to where she is now: living without current signs of active cancer, with only a small area of uncertainty that doctors are monitoring closely.

Maria is honest about the ongoing challenges, like fatigue, physical limitations, and the ever-present fear of recurrence. However, she emphasizes the importance of hope, gratitude, and the power of community. Her advice is to stay engaged in life, ask questions, and take an active role in your care. “Hope is what keeps us going,” she says, and her story proves it.

Watch Maria’s video to know more about her story:

Maria thought it was just an upset stomach until the endoscopy changed everything
Why staying active even on her weakest days became her lifeline
How faith transformed her cancer experience in ways she never imagined
The self-advocacy lessons Maria wants every patient to know
How prayer and worship gave her hope despite incurable stomach cancer

Name:
- Maria C.
Age at Diagnosis:
- 50
Diagnosis:
- Stomach Cancer
Staging:
- Stage 4
Symptoms:
- Rapid weight loss
- Fatigue
- Inability to hold food down
Treatments:
- Chemotherapy
- Surgery: robotic distal gastrectomy
- Radiation therapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Maria!

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The Patient Story Podcast: I’m a Young Cancer Patient

Post author By Chris Sanchez
Post date August 8, 2025
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August 8, 2025

The Patient Story Podcast: I’m a Young Cancer Patient

(Ep. 01) From Cancer Caregiver to Patient: Taylor’s Story

What do you do when you get a cancer diagnosis? Where do you go? Whom do you call? How do you become your own patient advocate?

There are so many overwhelming questions that hit the people who’ve been diagnosed and those in their closest circles. Here is the first-ever episode of a new video podcast hosted by The Patient Story founder and lymphoma survivor Stephanie Chuang.

This inaugural episode features a special guest: Stephanie’s colleague at The Patient Story and fellow former TV journalist, Taylor Scheib, who shares her experience navigating a cancer diagnosis, shifting from her role as a patient advocate and the daughter of a cancer survivor — her mom, Kelly — to becoming a cancer patient, herself.

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez, Stephanie Chuang

Taylor shares the moment she discovered her diagnosis. She was sitting on her couch and casually checking her MyChart when the words “oncocytic carcinoma of the thyroid gland” appeared. (Editor’s Note: Oncocytic carcinoma of the thyroid gland is a rare, aggressive kind of thyroid cancer. It’s also known as Hürthle cell carcinoma.)

She was devastated by the diagnosis, but her background in patient advocacy helped her regain her footing. Her experience and knowledge built from working closely with both patients and caregivers helped her recognize symptoms and push for answers. This reinforces a crucial message: You are your own best advocate.

Taylor’s ability to listen to her body played a pivotal role in her experience. She had first noticed a nodule in her neck three years before her diagnosis, and had continued monitoring it through regular check-ups. When the nodule grew, she trusted her instincts and insisted on further evaluations, even when her concerns weren’t met with urgency. This underscores the vital lesson of trusting your body and speaking up when something feels off.

Taylor experienced further challenges when she tried to navigate the healthcare system. Her patience was tested by insurance hurdles, delays in scheduling surgeries, and having to wait for tumor board evaluations. She candidly discusses the frustration of feeling like just another case number. But her experience and resilience won through as she managed both the system and the mental toll of cancer. She found strength in support from her husband, family, and friends.

Taylor’s patient advocate experience also underscores the power of storytelling. At the start, it wasn’t easy for her to share her story publicly, but when she did so, she found it cathartic. Through opening up, she not only helped herself heal but also offered enlightenment and hope to others with similar struggles. Taylor’s authenticity is a good reminder that behind every social media highlight reel, real struggles do exist, and sharing them can be profoundly empowering.

Please scroll below to read the full transcript from The Patient Story Podcast Episode 1!

Name:
- Taylor Scheib
Age at Diagnosis:
- 30
Diagnosis:
- Thyroid Cancer (Oncocytic Carcinoma of the Thyroid Gland)
Staging:
- Stage 1
Symptom:
- Appearance of neck nodule that grew over three years
Treatments:
- Surgery: thyroidectomy
- Radiation therapy: iodine therapy (upcoming)

Transcript of This Interview

Podcast Summary
Introducing Taylor: A Patient Advocate Becomes the Patient
The Shock of Diagnosis: Getting News from MyChart
Emotional Fallout: Processing a Cancer Diagnosis
Self-Advocacy: Trusting Your Instincts and Pushing for Answers
Barriers and Delays: Navigating the Healthcare System
The Waiting Game: Coping with Uncertainty and Lack of a Plan
Community and Connection: Reaching Out and Trauma Bonding
Telling Others: Navigating Reactions and Support Systems
Supporting a Loved One: Tips for Friends and Family from a Patient Advocate
Sharing the Journey Publicly: The Power and Healing of Storytelling
Give Yourself Grace: Final Reflections and Words of Wisdom

Give yourself grace. But do it on your own time.

Editor’s Note: This transcript has been edited only for simple clarity.

Podcast Summary

When It Rains, It Pours
- Taylor shares her mom’s own brush with cancer and how this was her first touch point in joining The Patient Story.
- Taylor and Stephanie talk about the unpredictability of medical challenges, including those faced by cancer patients.
Introducing Taylor: A Patient Advocate Becomes the Patient
- Taylor discusses her role at The Patient Story and how it made her more aware of cancer and its impact.
- Taylor and Stephanie delve into the unexpected turn Taylor’s cancer experience took.
The Shock of Diagnosis: Getting News from MyChart
- The moment Taylor learned about her diagnosis and the emotions that welled up.
- The challenges associated with getting life-changing news like she did over a digital platform like MyChart.
Emotional Fallout: Processing a Cancer Diagnosis
- The immediate emotional impact when Taylor heard the word “carcinoma.”
- The questions that surfaced afterwards.
Self-Advocacy: Trusting Your Instincts and Pushing for Answers
- Taylor discusses the importance of self-advocacy and being a patient advocate in healthcare, as well as the power of listening to one’s body.
- She also opens up about her persistence in getting her nodule checked and how it helped her get results.
Barriers and Delays: Navigating the Healthcare System
- Taylor and Stephanie delve into the problems many patients experience when they try to navigate the healthcare system, including systemic delays and provider shortages.
- They also explore the frustration patients can experience when urgent concerns face logistical roadblocks.
The Waiting Game: Coping with Uncertainty and Lack of a Plan
- Taylor and Stephanie discuss how difficult it can be to wait for clear next steps post-diagnosis.
- They outline and explore strategies to help manage mental health during periods like these.
Community and Connection: Reaching Out and Trauma Bonding
- Taylor shares how reconnecting with old friends and the support from her community have been vital during her journey.
- “Give yourself grace, but also do it on your own time.”
Telling Others: Navigating Reactions and Support Systems
- Taylor and Stephanie reflect on how to talk about a new diagnosis, the variety of reactions from others, and maintaining boundaries in relationships.
Supporting a Loved One: Tips for Friends and Family
- They offer tangible advice for supporters: what to say, what not to say, and how to truly show up.
- “The small stuff means more.” — Some of the most thoughtful and meaningful gifts aren’t the most expensive ones.
Sharing the Journey Publicly: The Power and Healing of Storytelling
- Taylor explains why she chose to be open on social media and the cathartic role of storytelling.
- She offers advice for those who are also considering sharing their experiences.
Give Yourself Grace: Final Reflections and Words of Wisdom
- In closing, Taylor and Stephanie share uplifting thoughts on the importance of being a patient advocate, self-compassion, and owning one’s narrative.

Introducing Taylor: A Patient Advocate Becomes the Patient

Stephanie Chuang: Hi, everyone. It’s Stephanie here with The Patient Story. I’m just starting something new here. Wanting to be able to touch base more with everyone out there who’s finding us. If you remember, I had my own cancer experience when I was diagnosed suddenly with a non-Hodgkin lymphoma. Diffuse large B-cell lymphoma. I was 31 at the time, two months from getting married, and it was a complete whirlwind, to say the least.

But joining me today, I’m so excited to introduce someone who many people may be familiar with on our channel, Taylor. Taylor is on our team at The Patient Story. An amazing leader. And Taylor’s joining us for not-so-great reasons, but I am so grateful that she’s coming on to share her story. So, Taylor, do you want to share a little bit about yourself first, of course, outside of the cancer diagnosis?

Taylor Scheib: Stephanie, thank you so much for the warm welcome. So crazy being on this side instead of being the one guiding the conversation. I live in the Pacific Northwest with my amazing husband Justin and our dog Sage. She is our world. She’s our Chocolate Lab. And we love to hike. We love to be outdoors, and we love to camp. I’m originally from Illinois, from a really small town. My high school graduating class was 30 people, and so I’m from a very rural area. And I’m so grateful where I grew up, though I have amazing friends and family back home, I’ve lived away from home for a long time, so that’s been an interesting part of navigating my situation. But yeah, my mom is a colorectal cancer survivor. She was diagnosed with stage 3 colon cancer in November of 2023.

Stephanie Chuang: Taylor has been someone who’s led so many of these conversations with people, with patients, caregivers, care partners, and you know, the first personal touch point in joining The Patient Story was you introducing your mom, Kelly, to the process. She shared her story of going through colorectal cancer. And I’m so grateful again to both of you for being so open about that. But you may see that Taylor has a throat scar. Yep. And that her voice sounds hoarse. She doesn’t normally sound like that. I was on a work trip, actually, and then, got a late text from Taylor, and that was, of course, not usual. So, Taylor, just walk us through what was happening at the time.

The Shock of Diagnosis: Getting News from MyChart

Taylor Scheib: Yeah, it was a Monday night. 5:15 p.m.. I was about two weeks post partial thyroidectomy for a nodule on the right side of my thyroid. And that night, I just got a message from MyChart with my pathology results. And when I got the pathology results, it was out of sight, out of mind, from my surgery. Because not once did anyone say, “Hey, be on the lookout for your pathology.” I knew that the nodule and the mass were going to be sent off, of course, but I never thought that when I got those results, it would read anything but benign. And unfortunately, when I got those results, I was sitting on my couch, my husband’s cooking dinner. I get into MyChart, and the first thing I see is “oncocytic carcinoma of the thyroid gland.”

I immediately shoot up. I’m crying. My husband is like turning off the burners in the kitchen because I just bluntly, out loud go, “I’m pretty sure I have cancer.” And my husband goes, “What? What do you mean?” And that word ‘carcinoma’. I know what that means. And I don’t know if, before starting at The Patient Story and dealing with my mom’s diagnosis that I would have known what carcinoma meant. And so, because I am educated, because I’m privileged to work for such an amazing company where I’m learning so much every single day, I knew carcinoma meant cancer. We immediately came to this very spot, right where I’m sitting. We got on my laptop, we started researching, and the word oncocytic was a word I had never heard. I’d never seen or heard anything. Yeah, you start to Google. And that’s where my patient advocate story began, with my diagnosis.

Stephanie Chuang: Oh, wow. Yeah, there’s a lot there, I know. When I got the message, and then I got on the phone with you and you told me, first of all. I mean, it just took me right back to that feeling of, wait a minute. What’s going on? Right. And cancer and all the things.

And of course, my diagnosis was years previous. I was diagnosed back in December of 2016 and into January 2017. So it’s been a minute, which I’m very grateful for. But really, no matter how long the time, I remember that feeling of, What the hell just happened? And in your case, to spell it out for people, they would go, “Oh, you have this nodule, and you need to get it removed.” It’s benign, though, and nowhere, never did anyone ever say it might be something.

Now, I can understand, by the way, why, without the information of a biopsy and without other, maybe contextual clues that they might say this is benign. But at the same time, there’s this whole thing of, oh, my God, you said the results had actually been in for a while, and then it just popped up on MyChart. What was hitting you in that moment about your life? What were the thoughts and the emotions?

Emotional Fallout: Processing a Cancer Diagnosis

Taylor Scheib: Yeah. I already have tears in my eyes thinking about this answer. Because when you work for an amazing organization like The Patient Story, you’re hearing these stories every single day. You’re writing scripts and you’re creating this beautiful content. The underlying thing is tragic, and that is a cancer diagnosis. And so I would be lying if I said I never thought I’d get cancer. I’ve thought it. And you become just so much more aware of your body and the feelings that you’re feeling, and going to the doctor and getting your checks, getting your women’s health exams when you’re listening to these incredible people every single day.

And then when your mom goes through it as well. So I was shocked. But when the dust settled, I wasn’t that shocked because cancer can happen to anybody. And so being so young, I had just turned 30. My husband and I just came back from this incredible trip to Puerto Vallarta that he planned for my 30th birthday.

And this year was going to be filled with amazing trips and celebrating friends who are getting married. And you know, we’re doing all of those things still, of course. But in that moment, I just thought, what are the next six months going to look like? I’m such a planner, as Stephanie knows.

And I just kept thinking, what is this going to look like for me? And then the unknowns started. That started the spiral of, How do we know for sure that it’s all gone? But, going back to the emotional part of it, it was devastating for my husband and me. We have heard about cancer a lot in our families, so cancer was not new to us even before starting my job. But it was still just heartbreaking, devastating.

How could cancer be growing in my body for three years and I not know it, because I found the nodule three years ago? And so it was a hard moment. But because of my husband and his personality, and how just fun and outgoing and level-headed he is. It didn’t take me long from the initial spiral to come down and realize, this is not going to be my whole life. This is hopefully going to just be a moment in time. That was sad and devastating, but we’re going to look back at the beauty of it.

Stephanie Chuang: Yeah, that is so beautifully said. Thank you, Taylor. What I’m hearing you say is a few things. And by the way, I think this applies to people outside of cancer diagnoses. It’s like anything, anything in general, but definitely with healthcare, something that is about your body, maybe feeling like I’ve heard people, including myself, you know, talk about betraying us, you know, in a way. And you have the initial shock. There’s a lot of sadness, and there’s a lot of, how did this happen?

And then for you, what I’m hearing is that you went, okay, well, now it’s time to tackle this. This is not going to be my life. This is one thing that I’m just going to look at and get and get through. Right. And one of the things I know you exemplify, and I think you did before you started here, and maybe even more so now. But this idea of self-advocacy, which we hear so much about for you, started really early on because no one was really that concerned about your nodule except for you. And I think there’s a message in there. And what is that message for other people?

… you know your body best, and you know how comfortable you are with something inside your body or making a decision.

Self-Advocacy: Trusting Your Instincts and Pushing for Answers

Taylor Scheib: Yeah, that message would be, you know your body best, and you know how comfortable you are with something inside your body or making a decision. And for me, when I found the nodule. It was after my 27th birthday. We had just karaoke all night. It’s one of my favorite pastimes.

And I immediately went to the doctor, got bloodwork, got an ultrasound of the lump, and from there, it was my choice, what I would do with that information. So I continued getting my yearly exams, getting full blood work done. And last year was when I was like, okay, this is getting bigger. People are starting to notice it.

And I want to say this part as well, because I had a friend who, and this is where advocacy comes in many different ways, not only for yourself, but other people doing it for you. She noticed the lump, and her dad had thyroid cancer. So she asked me, “Have you gotten that checked out?” And I said, “Yes, I have.” But at that point, I realized that it’s been a year since I had done it previously. Why not get it done again? So I started the process all over. Routine blood work, ultrasound, you know, did that. And then I just wanted to get it out at that point because it was really large. It ended up being 5.7cm.

And so after that ultrasound, it was up to me to schedule the ENT appointment. You know, getting into the ENT took months. As we all know, those specialty appointments just take a long time to get into. So I finally got into the appointment in November, and my ENT was very casual about it. Looked at the ultrasound.

At this point, no one ever said, “Let’s do a biopsy,” and we don’t know if the biopsy even would have caught it anyway, so I’m not going to dwell on that. But she went, “Yeah, this is benign. The features are all normal. It’s your choice to get it out. Are you ready to have a scar? And I said, “Yeah, let’s go.” I just couldn’t do abs anymore. Like working out without it choking me. Being in bed, lying on it. I could feel it all the time at that point. So I advocated to get it out because I knew that was the best choice of action for me. It was also something my mom was telling me, “Maybe you should just get it out.”

But at this point, it had compromised that whole side of my thyroid. So I was going to have to get a partial thyroidectomy. So I was a little scared. But coming back to the self-advocacy part of this, you know your body best, and it’s okay to push and not necessarily get it removed. Did I push because they got me on the schedule, but I was non-emergent, so very limited spots to get. Surgery was scheduled for surgery in January. My insurance referral did not go through in time. So the morning of that original surgery in January, I’m on the phone with my ENT, and they’re like, well, you could just chance it. And I’m like, facing a large medical bill without the correct referral.

Stephanie Chuang: Right.

Taylor Scheib: And my husband’s in the military, so I knew there were a little bit more hoops to jump through with that type of insurance. And so I was on the books for April. It just automatically got pushed back three months.

Barriers and Delays: Navigating the Healthcare System

Stephanie Chuang: Yeah. So I just have to interject there because I feel like that part of the patient advocate story, right, is like it’s one of the parts of the experiences that we all experience to some degree, but isn’t talked about a lot, which is when you’re dealing with cancer. I remember, you know, getting told that this might be cancer and then being like, but it’s probably mono. And I was like, mono? And then it was like, but you need an ultrasound to one here, one here.

I got on the call to get it scheduled. And they said, “We don’t have an appointment for weeks.” And I’m thinking, you can’t tell me that there’s this thing and that I have to wait. So my point is that there’s the system, there’s like our situations, and this message of self-advocacy is, it truly is the squeaky wheel gets the grease or whatever, because you know, you know your body best what you just said and also you I mean, there’s some things that are out of our control. But you see, the system we’re working with and the unexpectedness of being like, how come I’m the only one who’s concerned about this? Did you feel that?

Taylor Scheib: Yes, I felt that. And it was. That’s been the whole thing over the last six months of seeing the NT. Getting the surgery scheduled is why there is no sense of urgency behind this. Every time I’ve seen my ENT. She’s so busy. When I had my follow-up for my surgery, it was not her. It was her [physician’s assistant] PA.

And it continued past my diagnosis. First of all, I found out through MyChart, which is a story I’ve heard, unfortunately. And every time someone I’m talking to tells me that story, instant goosebumps. Instant. Just feeling what they’re feeling through the screen. Then it was okay. Your case is going to be presented to the tumor board, and I want to make sure that I’m explaining what a tumor board is correctly.

So Stephanie, please help me with this color. But basically, when you have a unique case like mine, where we thought it was benign for three years, the mass was 5.7cm. And then on top of that, it is a less common subtype of thyroid cancer. It’s being presented to the tumor board. Well, they only meet once a month. So and it was at the end of the month when this happened in April, so it wasn’t going to be until a month for the tumor board.

Stephanie Chuang: You talked about self-advocacy, which we’ll talk about throughout the entire conversation. But this idea of waiting, waiting for your appointment, waiting for insurance to approve or not approve, waiting for a tumor board. For me, it was like getting a diagnosis on the phone and then being told by a family friend. You know, oncology is going to take forever at your large academic institution, so just go to the emergency department.

So that’s another tip for people, by the way: just get into the system. So you get seen, and then they put you somewhere that you’re supposed to be. But I was waiting to understand. I remember they did so many procedures, I had biopsies and bone marrow biopsies and lymph node extractions and blood tests upon blood tests. And then it was the whole week in the hospital. What is it like? We know it’s lymphoma. Is it Hodgkin or non-Hodgkin? Are we talking about, you know, aggressive or indolent? Are we talking… So? Not this period, and you’re still in it. That’s what I want to acknowledge, is you’re still in it, is it feels like there’s still no plan of action.

And I think for different people who are dealing with a diagnosis that it varies. Like sometimes it’s very short and, you know, right away for other people like you, you’re waiting weeks to understand, well, what are we going to do about this? So how have you been able to manage the mental part of that, the waiting part of it?

I have my good days. I have my bad days, more good than bad days, which is good. But it’s just about occupying your mind.

The Waiting Game: Coping with Uncertainty and Lack of a Plan

Taylor Scheib: It’s so hard, honestly, and I have my good days. I have my bad days, more good than bad days, which is good. But it’s just about occupying your mind. And when I was diagnosed and I started telling my close friends and family, I think, like trauma bonding, it’s very powerful. I have some friends that I don’t talk to every day, of course, but they’re your best friends no matter what. You pick up right where you left off.

So, as crappy as this was to get this diagnosis, it gave me a chance to actually kind of get closer with some of my friends. That has been such an amazing distraction since my diagnosis, catching up with old friends, catching up with your family again. My dad is calling me so much more, he calls all the time in general, but even more so now, my grandparents are reaching out like every so often. So I would say that’s been one solid thing.

Then the other part has been my husband. He has been my rock, of course, through this. Then we’re super active people. So we went and bought really expensive bikes to get on the trails. Stay active. And we’re just trying to find ways to continue living our lives. And for us, that is planning a trip. So, sorry, Stephanie, in the next year or so, I’m going to be going on some trips.

Stephanie Chuang: Oh, 100%. And you should go out and live your life 100%. No apologies. That’s 100% what you should be doing. And it makes me so happy to hear that. Those are the steps that you guys are taking. So many things came up when you were talking about that. You know, when you talk about trauma bonding, I’ll talk about the flip side of some of the experiences I’ve had, too. But this is the question of why we need a reason? But we do. I love that it just automatically gave this a thumbs up.

Community and Connection: Reaching Out and Trauma Bonding

Stephanie Chuang: People come from different places, whether you’re close. My friends started a campaign called #SpicyStrong. And I think it’s because when I was in my delirium, when they put me under for the lymph node biopsy, I had to go under full anesthesia, and I don’t know if I was going in or coming out, but I was super loopy. And so I was talking to the nurse. And I went, “I’m so spicy and strong,” or something, I mean, ridiculous. And then that just became the hashtag.

They printed shirts, and it got to people, and they were posting on social media. This is making me remember a lot of things I forgot. But people who are super close to me, people who I hadn’t seen in years. And that is such a beautiful part of this, right? One of the silver linings. I’d rather not have this, but the fact that I do and people like me are showing how much they think about me. I mean, what was the most powerful? I mean, I know you had lots of people reach out, but is there one situation where it took you by surprise, or a message that came from someone you hadn’t talked to in a while?

Taylor Scheib: Yeah, there’s one example where, and I’m sure you can relate to this, being formally in the news. You bounce around all these towns and cities, and you have friends everywhere, like I mentioned. And even when I just had the partial thyroidectomy, a group of friends in Denver sent me a care package, and that was before I even got my diagnosis. And so I was just so taken aback and just so thankful for them sending that. And so that was one thing. And then the other has been again, when I was in sports broadcasting, and I’ve heard from so many people from the little towns that I was covering, you know, seven, eight, nine years ago. And they’re commenting on my post, just saying, you know, we’re supporting you. This community is supporting you.

That’s just meant the world to me. And so those have been instances where it kind of stops you in your tracks. I don’t know if you’ve felt that way, but you just think, humanity is good. Yeah, yeah. Decency still. And there is a way to break through the screen. There’s a way to break through the phone call, the FaceTime, the message. And so I’m not sure if you felt that same way in those instances, but it stops you in your tracks, and you just realize, I have so many amazing people in my life.

Stephanie Chuang: Yes, 100%. It does resonate. Taylor. It’s 100% humanity is amazing. These are the beautiful moments of humanity when people come out. And, you know, I think a lot of the social stuff might be we are scared to, you know, reach out to someone from before because we think, well, what if they think I’m weird or they don’t even remember me or whatever? And these situations just take us completely out of that. Right. It’s like, no, I care about this person, or I just want them to know that I’m thinking about them, and it’s okay if they don’t reply or all those things. I think that is beautiful, and I wish more of us could get to that.

Yes, 100%. It does resonate. Taylor. It’s 100% humanity is amazing. These are the beautiful moments of humanity when people come out. And, you know, I think a lot of the social stuff might be that we are scared to reach out to someone from before because we’re like, well, what if they think I’m weird or they don’t even remember me or whatever? And these situations just take us completely out of that. Right. No, I care about this person, or I just want them to know that I’m thinking about them, and it’s okay if they don’t reply or all those things. I think that is beautiful, and I wish more of us could get to that.

… whatever other people’s reaction is, it is not about you. It is, of course, about concern for you and what you’re going through for the people who love you.

Telling Others: Navigating Reactions and Support Systems

Stephanie Chuang: I do want to touch on just because, for anyone who’s tuning in who is dealing with something again, it could be a diagnosis, cancer, or otherwise. It could be something else. When you have something to tell other people that they’re not familiar with. So I don’t know, sometimes I’ve found that military people find that with civilians. It’s like a walking-around language with sickness. Or maybe if someone’s announcing, say, a divorce and other people aren’t familiar with it, it could be any of those things.

I think the way other people react is very – it can be very jarring. And so I’d like to spend some time here, which is that, you know, people have different kinds of people in their lives. Some people have tons of friends, some people have a tighter circle and and all these things. I’ll start with an example, which is a newer friend, but I’d known her for a few years at least. More of a social friend, maybe.

But when I was diagnosed, she kind of disappeared, and she was one of the people I saw more often in that time frame. You know, a lot of my friends, to your point, are scattered around the country. And so it was very disappointing, and it was hurtful because here I am thinking about my mortality, not sure about what I’m going to do, worried about my hair loss, and all these things. I’m 31, and she just dropped off.

I just want to say this, not to harp on her as a person, but really to say, I think what I learned in that is whatever other people’s reaction is, it is not about you. It is, of course, about concern for you and what you’re going through for the people who love you. But for any of the weird stuff or the things that might be surprising, I would just say, broad strokes, the reaction is about their discomfort. They don’t know how to show up. They do care about you, but they’re worried about how they’re going to come across.

Maybe they think other people are talking a bunch to you, and so they’re trying to be respectful of you. Not right or wrong. But I do feel like that’s something I’d want to share with other people who are going through something, because it can be very tough when it’s unexpected. I don’t know if there’s something that resonated for you there a lot.

Taylor Scheib: It is. When I first started telling people, I realized very quickly, the way you present it will help determine how they react. So in the first couple of conversations I had, it was kind of very emotional. A lot of information, whoa, what is going on? But then the more I told people, the more I started setting the precedent of, right at the beginning, I’m going to be fine. I’m going to be okay. And then that’s when I think people went, okay, she’s she’s she’s going to be okay. And I have been very positive throughout this whole situation. And I think that has helped the way people are reacting.

Now, I will say on the positive side, kind of the opposite of what you experienced was I’ve gotten a lot closer to one of my high school best friends, like my childhood best friends. We have been friends literally since kindergarten. Wow. And we talk every once in a while. And when we see each other, we pick up right where we left off, like I’ve said. But we’ve talked more since this happened to me. And even when I just did the partial thyroidectomy, she called me that weekend, and I sounded like crap. Did not have a voice.

Taylor Scheib: She was crying on the phone. And it makes me emotional because that’s an experience where she’s showing up for me. And that, and her mom, and her. They are like my OGs, but I don’t see them very often. And so it’s kind of the flip side of what you experienced. But what you experienced with someone dropping off like that is likely going to happen for me in the next six months or however long this process ends up being.

But my mom experienced that. She was shocked by the people who she didn’t hear from again, or they didn’t show up for, you know, she had a benefit. They didn’t show up for that, or just a text message or a phone call. She was shocked by the couple of people. And you don’t forget those things, but I think it makes you become a better human in a way, and it makes you check up on your people a little bit more. That’s how I’m trying to spin it, at least.

Stephanie Chuang: And knowing you from what I know of you, Taylor, I don’t even think it’s a spin. I think you have that. That’s just the way you approach life. And I appreciate that. Yeah. No, 100%. I would say that was the only example of that. And everything was largely positive. I think I do want to call out that it may not happen to you, by the way. Right. I think it’s good to understand that if it does, though, that it’s normal and it’s not about you. It’s about them. And the other drop off, someone had warned me when I was just going through it, and she had gone through the same cancer just six months before I did. And she said, “Look, I’m struggling now that I’m done with treatment. People are like, you’re fine now.”

And then, the medical help drops off, and then the support also, because, well, you’re all good. And so that’s another conversation for another day. But I think my point is that at different parts of this, you know, it doesn’t mean, oh, I’m past this now. It’s that there’s different versions depending on where we are as patients, as people supporting other people, that these same emotions can come up or these same situations can come up. I also want the chance to drop in this video of my best friend in New York, she flew out with her husband, and at the time, I had to give myself blood thinner injections every day.

And those are freaking large. You know, I did IVF shots to freeze embryos at the same time. So I had to do the little needles and then the spring needles for the blood thinners. And, oh my God, it was terrible. And there’s a video of the way they supported me, trying to make fun sometimes. So, you know, the song that goes, shots, shots, shots, shots, shots, shots, shots. Yeah. So I was about to give one, and they go, “Oh, we’re just gonna sing the song for you.” And those are moments for sure where this is me getting loved on by people who are trying to lighten the situation for me in the way that they think might be helpful. So anyway, I think that’s awesome.

Stephanie Chuang: I want to ask about your mom. I know other people may not have this specific example where it’s like their parent also went through a similar diagnosis, but in terms of other people’s reaction to when you’re telling people what that was like, what’s your guidance to other people who feel like there’s an extra layer there? Whatever the reason is for you, it was that your mom had gone through her cancer recently, even. But for anyone who feels like there’s an added pressure in making sure the other person’s okay, what is your guidance there?

Taylor Scheib: Yeah, I would just say the biggest thing is give yourself grace, but also do it on your own time. That is so important. Yes, there’s pressure to tell people and update people and do all the things. I totally get that. But do it on your own time. You and I also think that what helped as well is I just I’m a very factual person. I’m blunt. I’m not going to sugarcoat things. So I think it was my messaging to them. These are the facts, I know. I don’t know anything else. And then I think that helps with them asking a bunch of questions.

You know, like deep dive spiraling. I think it’s just about giving yourself grace and giving the situation grace and not feeling like you have to always be giving updates to your friends and family or talking to them. Or it can take about a day to respond to someone. And my friends and family know that. They know that I’m very busy. My husband and I, Justin. We live a very active life. We are always doing something. And so yeah, I think it’s also if you get a text message, don’t feel like you have to respond right away or call them back or anything, right? This is on your own time, and that goes beyond just your friends and family. I’ve heard this so many times from people that I interview. You are the CEO of your life, of your body, of what you do. You are the leader of your own life. And I think that’s just so important.

Stephanie Chuang: Yeah. I mean, in the future conversations, I’m going to be pulling up from our patient advocate interviews because they have so much wisdom in what they’re saying. I mean, there are so many things that I want to talk to you about. Let’s talk for three hours. No, that’s fine with the audience. No. But I think, you know, whatever way you want to look at it. In terms of tips. There are some tips for the person who’s dealing with the diagnosis. Diagnosis? I agree with you, Taylor. 100% of the give yourself grace. I think in life in general, we could stand to hear that more often anyway, right? We give other people the compassion we don’t give ourselves. But on that note, give yourself grace and do not worry as much as you can about the other person’s reaction. You don’t have that space to carry that burden. So don’t tip on the other side.

Supporting a Loved One: Tips for Friends and Family from a Patient Advocate

Stephanie Chuang: I would give to people who are looking to support patients, because I’ve heard that a lot. Right? They might go, “Oh my gosh, my friend, my family member was just diagnosed. How can I support them?” I think in terms of messaging, I would always lead with whatever. If it’s an email or a text or whatever, or a voicemail.

No pressure to respond. I just wanted to, and that just takes off the pressure. So you get to send the message, and you’re letting them know. I get that you’re super busy and you’re occupied, and I’m not trying to take away your bandwidth. Another tip would be people ask about, “What can I send someone who’s just been diagnosed with cancer?” I’m going to ask you about this, too, so you can brainstorm. But I’ve often thought, if you can figure out if they know their treatment, I would base the care package on that. So if you know that they’re going through radiation, you can look, and we’re going to create this online to have some guides at The Patient Story, but it is to really look at what that modality of treatment is, and then try to send stuff. So, you know, I’ve sent organic lotions to people because they were going to get dry skin, blankets because one of the side effects was going to be feeling cold, things like that. I don’t know if there are things that you feel would be great advice for people trying to help people dealing with the new diagnosis.

Taylor Scheib: Yeah. You made such a great point. Blankets, things like that. But then I also think, like anything, that the person who’s going through the treatment or diagnosis, self-care, they should just put self-care out there.

So yeah, if it’s maybe organic products or maybe it’s a bath bomb, or of course, depending on their treatment, like we said. But for me, everyone knows I’m going through the waiting period. So I think a lot of people went, “How does she want to relax and sew face masks and bath bombs and electrolytes and different things like that?” So I would say anything that you can think of that person likes, that is self-care.

Books, a journal. You can never have enough journals. Something to preoccupy them, too, whether that’s like a coloring book or, you know, crossword puzzles. Not that I do any of that, I’m not going to lie. But if you know that person enjoys that kind of pastime. Right. Or maybe something like, this is old school, but a CD with their favorite songs on it.

Stephanie Chuang: Right, right.

Taylor Scheib: And I also think, too, when it comes to what you could give that person or send them in these moments, it does not have to be elaborate. The small stuff means more. And so maybe it’s a Spotify playlist, maybe it’s a $15 Amazon gift card, maybe it’s a gift card to their favorite restaurant. The self-care food.

Don’t overthink it. When you want to give something to that person. It can be something very small, even just a Venmo. I had a good friend, one of my best friends from home, send me a Venmo the day of my follow-up ENT appointment, and the caption was, Go get a cheeseburger after this.

Stephanie Chuang: Oh no, I love that it is. It’s the small things. It is that thought that counts. It is true. I think there are a couple of things that came to mind, too. And then we’ll and then we’ll wrap this conversation, which, by the way, I’ve enjoyed having with you. I think one quick note is if people are waiting. You’re not in the hospital. I know when I was waiting, and I was in the hospital for a shorter period of time, the nurses at one point said, “Don’t send flowers, or we’re telling people, don’t send flowers.” And that’s for when people are immunocompromised.

The knee-jerk sometimes is like beautiful flowers, but just to make sure.

… why I decided to share my story so openly was because at the core of who I am, I’ve always been very transparent, very honest, and I am an empath. I need empathy at the core of who I am, and that’s where the storytelling part of my life, like my whole life, has been storytelling at the core.

Stephanie Chuang: The other point that happens to matter both in terms of support, but also in terms of talking about messaging and not having to respond to text messages right away. What was helpful for me was to designate people who knew the information, and if other people needed to know or wanted to know about the diagnosis or where I was in that, specifically, they would go through those people. You know, it’s funny, we both were on TV before, but we were also very private people, actually, and I never imagined that I would bare my soul online or continue to have a presence after my news career.

But I had a blog, and the initial point of the blog was a it just helped. It was cathartic to get stuff out on, like just journaling, essentially. But then it was like, well, two things: if I can help other people not feel alone. And also then it helped in terms of people getting updates without me having to like constantly. But then that slowly became cathartic as a storytelling mechanism.

And by the way, you know, we’ll have like the storytelling, you could share yours. There are the prompts below in the description. But for you, Taylor, what has it been? This is my last question to you. What has it been like? I guess, how did you decide to want to share? I didn’t even realize you were going to share your story on social media. And it happened. But like what? What drove you to want to do that? And what has been maybe the most cathartic part of the process, especially a message for people who do feel like I’m private. I don’t think this is for me. Right?

Taylor Scheib: Yeah. I resonate so much with when you get out of a job that is so public, like we were in in TV, I don’t find myself posting at all anymore, but why I decided to share my story so openly was because at the core of who I am, I’ve always been very transparent, very honest, and I am an empath. I need empathy at the core of who I am, and that’s where the storytelling part of my life, like my whole life, has been storytelling at the core. I’ve always been a storyteller. You know, I can get along with anyone, and I just am amazed and mesmerized by other people.

I just love people so much, and they teach me so much about life and about the way you should live life. You know, there’s no guidebook to that, of course, but when I decided to share it publicly, I just wanted people to know that we say it all the time, that they’re not alone. They might be going through anything, and they’re like, “Wow, this person feels just a little bit like I do.” And that’s what keeps people going. And so behind sharing my story and trying to keep people up to date, I just. It’s kind of. It’s hard to explain. I just wanted people to know that everyone is going through something that is a big part of it, and to social media.

If you look at my Instagram, you will see my husband, my friends and family, my dog, and you go, wow, that girl has a really good life, and I do. We live an amazing life. But behind the curtain, behind social media. I’m going through something that really sucks, and I’m still finding ways to navigate that. So why not be open about that conversation? Let people in. I have a big tribe. I have a lot of people in my corner. I’m so thankful for that. But. Those strangers. Those are the strangers who come to you. Those are so impactful. Just the little comments of, “Wow, I thank you so much for sharing your story.” I’ve had so many people say, “Thank you so much for sharing your story.”

Taylor Scheib: And it’s not even about the cancer. It is about making sure you are getting your physical exams, that you are getting your women, your women, health, health exams, your PAP smears, your full blood work, whatever it may be.

I’m getting emotional about it because I feel like people get so lost in how they’re feeling, and they don’t know if it’s something, if it’s their life, because they’re really busy, or if it’s something underlying. And so I just want people to know that it’s okay to go to the doctor. It’s really scary. I totally get it. I was so scared to get this surgery, and now I’m dealing with voice loss, and I can’t get my voice back. So trust me.

Oh my gosh, it’s so, so scary. But it doesn’t have to be. And find your partner, find your friend. Find your family. Find someone like The Patient Story who can hold your hand through that. So that was really the ‘why’ behind sharing the story publicly. The most therapeutic thing for me in this process, honestly, has been talking freely like this. When I posted those videos, they were maybe 15 minutes long, and I had to cut them down.

But talking so freely about it has been so cathartic and so therapeutic for me. Those are like my blogs, like you did. I’m just doing it as a vlog. And after I get done, I go, “Wow, I kind of look cute.” I’m going to take a couple of selfies, you know? Yeah, go do things anymore.

You know, like those moments. You go, “Wow, I just feel so stinking good.” Yeah. And so that’s been super helpful. And then just keeping the lines of communication open with me, with my partner, with my husband, with my friends and family. You know, I just want to say this one part fast. My mom and I are best friends. We talk all the time, but recently we haven’t been able to talk a whole lot because she’s two hours ahead of me. We don’t work the same hours, or we do work the same hours. So, we’re constantly working. We’re not finding time to talk.

And last night, I told her, I said, “I’m sorry. I have not been able to call you. I have just been so busy. There’s been so much going on.” And she goes, “It’s okay.” And I go, “But it’s not okay.” She goes, “I know, but I don’t know what to say.” And so it’s there, that balance of course, she knows I’m busy. She’s not pressuring me, but she just wants to have a conversation like this. She wants to just openly have the conversation. And we did talk today, and it was very therapeutic for me. So open communication and just kind of setting up my phone and talking. But that’s also because I’ve been doing that for so long, and I’m a storyteller by nature.

Stephanie Chuang: So you are. You really are.

Give Yourself Grace: Final Reflections and Words of Wisdom

Stephanie Chuang: Taylor, I thank you so much for opening up, being vulnerable. You are such an empath. I know you bring it to your life and also to work every day, and I’m so grateful that you’re part of The Patient Story team doing that. Yeah. For anyone who’s you know, wants to hear the tips that were part of this conversation, I think we can come up with something that you can download. We’ll put it into a link somewhere on the description, not at the time of this discussion. Thank you for being such an open book. And looking forward to being able to share more of your incredible voice throughout all of this. So thank you.

Taylor Scheib: Yes. Thank you. And I’ll just leave this here. We’ll talk about it more, of course. But when I got my diagnosis, I didn’t feel overwhelmed. And that’s because, of course, in moments I did, but I didn’t overall because of The Patient Story. And I’ve said this so many times to my friends and family and to people who I’ve told my story to when I’m interviewing them, because now I’m openly sharing my story, is that when someone gets a diagnosis, I never want them to feel overwhelmed, and I want them to have a place like The Patient Story where they can go and think, wow, okay, I have someone, I have an organization that can support me. So when I got that diagnosis, I didn’t feel overwhelmed. And I want other people to feel that way. And that’s why I’m so passionate about our work at The Patient Story.

Stephanie Chuang: Yay! I couldn’t say that better. That was amazing. Thank you. Taylor. All right. And this was like the first of many conversations that will happen with Taylor with different folks. Really looking forward to this. All right. Great. So for The Patient Story, that’s Taylor. I’m Stephanie. Gift yourself grace. Take care. And we hope to see you next time.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Taylor!

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Curiosity and Self-Advocacy Shaped Ian’s Stage 3C Colon Cancer Experience

Post author By Chris Sanchez
Post date July 27, 2025
No Comments on Curiosity and Self-Advocacy Shaped Ian’s Stage 3C Colon Cancer Experience

July 27, 2025

Curiosity and Self-Advocacy Shaped Ian’s Stage 3C Colon Cancer Experience

Toward the end of November 2022, Ian was diagnosed with stage 3C colon cancer. This diagnosis came after he experienced subtle but worrying signs: fatigue, strange blood test results during his annual physical, and the appearance of blood in his stool.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Ian’s family has a history of cancer (his father also had colon cancer), which has made him extra vigilant. Additionally, his wife and sister, both strong advocates for his health, supported him and encouraged him to seek prompt medical help. Ian advocated for himself from the start, insisting on having diagnostic procedures done immediately, including a colonoscopy he refused to delay.

Ian was emotionally devastated after receiving his stage 3C colon cancer diagnosis, especially after he learned that it had spread to some lymph nodes. The timing of the diagnosis worsened his emotional burden, as his wife was pregnant with their second child at the time. But Ian refused to back down in the face of these challenges. He not only had a can-do approach; he was also determined to understand every aspect of his condition. This gave him the strength, clarity, and confidence to navigate through his complex healthcare decisions.

Ian’s experience shows how crucial it is to have a medical team that’s aligned with one’s values. In his case, it was paramount that they focused on his quality of life during treatment. He was happy to find an oncologist who didn’t just prioritize effective cancer treatment but also considered his well-being key. This included undertaking strategies to minimize debilitating side effects like neuropathy. Ian was also able to take part in a clinical trial that aimed to reduce chemotherapy-induced neuropathy.

Through his stage 3C colon cancer experience, Ian has remained a staunch self-advocate. He firmly believes in being the “squeaky wheel” — outspoken, persistent, and informed — to help ensure that one receives timely, appropriate medical care. As a survivor, Ian takes his role as a husband and father to heart, actively participates in cancer support communities, and shares his story to help inspire and support others facing similar challenges.

Watch Ian’s video to get a better grasp of:

How Ian’s innate curiosity and intellectual approach turned out to be his greatest strength in facing stage 3C colon cancer
Why being a “squeaky wheel” can make all the difference in healthcare
How Ian balanced cancer treatment with family life, including a new baby on the way
Choosing an oncologist based on far more than just credentials
How clinical trials helped Ian maintain his quality of life during chemotherapy

Name:
- Ian D.
Age at Diagnosis:
- 38
Diagnosis:
- Colon Cancer
Staging:
- Stage 3C
Symptoms:
- Fatigue
- Unusual blood test results during annual physical
- Blood in stool
Treatments:
- Surgery: partial colectomy
- Chemotherapy
- Clinical trial

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Ian!

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How Getting a Second Opinion Saved Crystal’s Life After a Rare Soft Tissue Sarcoma Diagnosis

Post author By Katrina Villareal
Post date July 25, 2025
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July 25, 2025

How Getting a Second Opinion Saved Crystal’s Life After a Very Rare Soft Tissue Sarcoma Diagnosis

Crystal is the kind of person who lights up a room — bubbly, energetic, and always smiling. But in February 2022, her world shifted when she started having severe trouble urinating. What started as one uncomfortable ER visit turned into a life-changing realization: she had a malignant peripheral nerve sheath tumor (MPNST), a very rare type of soft tissue sarcoma tied to her neurofibromatosis type 1 (NF1).

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Doctors initially thought it was a urological issue. After being catheterized twice, Crystal pushed for more testing. When her request for a CT scan was denied, she advocated fiercely for herself until they agreed. That scan revealed a mass. It was a shocking moment that would eventually lead to the correct diagnosis of MPNST sarcoma, a type of cancer that requires highly specialized care.

Despite discomfort with change and loyalty to her first care team, Crystal followed her instincts — and the advice of supportive family and friends— and got a second opinion. That decision changed everything. Her new sarcoma specialist reviewed all her records and immediately diagnosed her with MPNST sarcoma, which aligned with her NF1 diagnosis.

Not only did this doctor explain the cancer more clearly, but he also had a complete surgical plan laid out at their very first meeting. Crystal finally felt seen, heard, and, most importantly, safe. That second opinion gave her more than just answers; it gave her a confident path forward for treating her MPNST sarcoma.

Crystal’s surgery was complex and intense: a procedure that included bladder and rectum removal, a permanent colostomy and urostomy, and reconstructive work. Recovery was rough, both mentally and physically. However, Crystal managed to get through it by staying informed, engaging with online communities, and learning how to adapt to her new normal. Social media became unexpected lifelines for practical advice and emotional support. Navigating life after MPNST sarcoma isn’t easy, but Crystal found strength in unexpected places.

Crystal is now nearly three years cancer-free. She emphasizes how essential it is to advocate for yourself, ask questions, and not be afraid to speak up, even if doing so feels uncomfortable. Her story highlights how vital it is to meet with a doctor who specializes in your specific cancer, especially with rare cancers like MPNST sarcoma. A second opinion didn’t just help; it gave her a real shot at living her life again.

Watch Crystal’s full video to find out more about her story:

Hear how a wrong diagnosis nearly changed everything and how Crystal uncovered the truth about her MPNST sarcoma.
Find out why she pushed for a CT scan and how speaking up became her most powerful tool.
Learn how social media and community support helped her face life after surgery with two ostomy bags.
Discover why choosing a sarcoma specialist made all the difference in Crystal’s care.
See how Crystal’s second opinion gave her not just a new diagnosis but a real plan and peace of mind.

Name: Crystal S.
Age at Diagnosis:
- 29
Diagnosis:
- Malignant Peripheral Nerve Sheath Tumor (MPNST)
Symptoms:
- Inability to urinate
- Intense pain due to inability to urinate
Treatments:
- Chemotherapy
- Surgeries: cystectomy (bladder removal), proctectomy (rectum removal or Barbie butt surgery), permanent colostomy and urostomy, partial hysterectomy, reconstruction

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Crystal!

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Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

Post author By Chris Sanchez
Post date July 23, 2025
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July 23, 2025

Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

Fiorella proudly champions cancer advocacy for patients in her country, Argentina. She was once a patient herself. In 2019, she discovered a lump in her breast during a routine self-exam. Trusting her instincts, she consulted doctors, leading to a biopsy that confirmed her diagnosis of triple positive stage 2 breast cancer. The diagnosis was shocking, but she leaned on her family and found solace and strength in their love and support.

Fiorella proactively sought a second opinion from a doctor at the Alexander Fleming Institute. In contrast with other doctors who recommended that she first have a mastectomy and then chemotherapy, the doctor recommended that she start with chemotherapy to shrink her tumor, sparing her from a mastectomy. It was sound advice. After just two chemotherapy sessions, the tumor vanished, and she underwent a lumpectomy.

Empowered by her stage 2 breast cancer experience, Fiorella emphasizes the importance of self-advocacy and informed decision-making. She believes that patients should take the initiative to research their conditions, seek second opinions, and participate in discussions about their treatment options.

Fiorella’s experience made her realize that there was a gap in patient support. She first helped out and then took the lead at VICARE GU, Argentina’s first genitourinary cancer advocacy association that focuses on kidney cancer and bladder cancer, prostate cancer, testicular cancer, and penile cancer. VICARE GU offers resources, legal support, and assistance, and also organizes community events to help patients and families get to know their conditions better and navigate their diagnoses with dignity.

Fiorella’s passionate about shattering the stigma around cancer and supporting others through shared experiences. Read her story and watch her video to learn about:

How her self-exam changed her life
The second opinion that redefined Fiorella’s treatment plan
Overcoming fear and stigma after a stage 2 breast cancer diagnosis
From patient to cancer advocate: Fiorella’s mission in Argentina
The role of family support in navigating cancer and living with dignity

Name:
- Fiorella G.
Diagnosis:
- Breast Cancer (Triple Positive)
Staging:
- Stage 2
Symptom:
- Lump in breast
Treatments:
- Chemotherapy
- Surgery: lumpectomy

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.

Table of Contents

About Me
How I Found Out I Had Stage 2 Breast Cancer
Telling My Friends and Family About My Diagnosis
I Looked for a Second Opinion
I Believe in Empowered Care
Getting Involved in Cancer Advocacy in Argentina
“Cancer” is Such a Dreaded Word
My Message For Other Cancer Patients in Latin America
How Spreading Cancer Advocacy Through VICARE GU Can Help People

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez

… I [need to] give back, to help others gain a second chance at life.

About Me

Hello, I’m Fiorella. I’m from Argentina. I was diagnosed with triple positive stage 2 breast cancer in 2019.

I’m very passionate about everything I do. I never give up on anything. When I do something, I try and try again, until I get it perfect.

I’m quite passionate about my family as well. I’m married and I have a son. Family for me is one of the most important things in my life. I think of my family in everything I do.

How I Found Out I Had Stage 2 Breast Cancer

I don’t remember all that much from the time I was diagnosed. I clearly recall, though, that I was quite frightened to have discovered my cancer.

I was working then, and my son was five years old at the time. One day, I did a breast self-examination like I always do. I found what felt like a little ball in my breast. It was alarming.

I went to see my gynecologist. He palpated me and told me it felt suspicious. He then referred me to a breast surgeon, who said the same thing. And then he sent me to have a biopsy done, which uncovered my triple positive stage 2 breast cancer.

I don’t remember all that much from the time I was diagnosed. I clearly recall, though, that I was quite frightened to have discovered my cancer.

Telling My Friends and Family About My Diagnosis

The phrase “stage 2 breast cancer” was very new for me and my family. It wasn’t something we had encountered before. That made my diagnosis and subsequent treatment very difficult for everyone. I also ended up losing my job later on, in the middle of the treatment, which made things even tougher.

But my family — my mother and father, my husband and son — had my back. They rallied around me. Even though my son was little then, he was always with me. And my close friends supported me, too.

I also had plenty of support from my doctors and medical team — the oncologist and hematologist, of course, but I had also begun to see a psycho-oncologist to provide emotional support to counter the difficulties I was starting to experience due to my breast cancer.

I Looked for a Second Opinion

As I said, stage 2 breast cancer was new to me. No one close to me had cancer or anything like that. I had to find out more about it before I committed to my treatments. I couldn’t stick with the first thing they told me back then.

One of my cousins told me, “Why don’t you look at this doctor?” And then they recommended this place called the Alexander Fleming Institute, right here in Argentina. It’s dedicated solely to cancer. Other places, even though they’ve got oncologists or other doctors on staff, might not be as focused. So I said, “Well, this has to be the place.”

I wasn’t given a set path. I had spoken with other surgeons who had said that they would need to operate first and then start chemotherapy. But the doctor I spoke with told me differently.

He said that the tumor was very large, but I was very young — and I didn’t need to have the whole breast removed. He added that it would be better to start with chemo and reduce the size of the tumor, and then operate later.

And this regimen worked. After the second session of chemotherapy, the tumor disappeared. After that, I just needed a breast-conserving surgery, a lumpectomy, to remove any tumor remnants.

I Believe in Empowered Care

“Listen to what the doctor says and do what he tells you.” I’m not very much into doing that blindly.

In all areas of my life, I prefer to find things out and get educated before deciding on something. I guess most people don’t find these things out or ask about them.

I only managed to find out about patients’ associations and patients’ rights after all my treatments were done. They don’t seem to be well-known. I kept discovering a lot of things like this afterwards.

Of course, if a treatment has to be done, it needs to be done just as the doctor says. But I would recommend speaking with others and doing a little more research before making any treatment decision.

… I would recommend speaking with others and doing a little more research before making any treatment decision.

Getting Involved in Cancer Advocacy in Argentina

I’m working to help patients in Argentina as part of a realization I had when I was finishing up with the treatment, and even after I was done. I felt I needed to give back, to help others gain a second chance at life.

I took my stage 2 breast cancer experience forward by getting involved in VICARE GU, which is the first association in Argentina for genitourinary cancer patients and their family members and friends.

Initially, I was just helping the president of VICARE GU out. But she passed away, and no one could follow in her footsteps. So I got more involved. I’m now the president.

At VICARE GU, I’ve learned so much about patients and, in general, about dedicating oneself to patients’ concerns. And connected with how I felt, that I needed to support patients getting a second chance at life, is that we provide crucial information that cancer patients, their family members, and their friends can easily access and browse.

We started with kidney cancer, then went into the bladder cancer space next, and then genitourinary cancer. And we’ve also added information on other kinds of cancer: kidney, bladder, prostate, penile, testicular, and urethral cancer.

We’ve started organizing congresses — medical meetings or conferences — for each of the cancers, and specifically aimed at patients. We started with kidney and bladder cancer, and this year, in 2025, we’ve begun to organize congresses for the other kinds of cancers. These congresses provide what patients need to understand and keep up to date about treatments for each of the cancers and learn about cancer advocacy.

We run a psychologist-managed WhatsApp group where patients can join different chats and discussions. We also participate in different international organizations, such as the International Kidney Cancer Coalition.

On the legal side, we help patients in case some kind of treatment isn’t covered. We also help patients access medication. And we also organize other activities like community talks and walks — we do two of these yearly — and mindfulness activities as well.

“Cancer” is Such a Dreaded Word

There’s still so much fear of cancer. The term really does carry some stigma. People might find it uncomfortable to know that someone has cancer.

Many patients and their family members participate in the online events or talks we organize. But when we put up an in-person event, not as many people come. It does take a bit more for people to show up in person, but people may also be a little ashamed to come.

When we speak of empathy and find that this can be missing, it’s because cancer really is stigmatized. Some people can’t even say its name, and when I invite them to events or even just say you’re helping cancer patients, they more or less give me their condolences.

I do understand this fear. I was also quite frightened in the early part of my stage 2 breast cancer experience. I equated cancer with death because I was scared of what I didn’t know.

But now that I’ve been through my experience, I know so much more about it, such as the fact that cancer isn’t necessarily a death sentence; some kinds can be managed.

Men can have a particularly hard time with cancer, even just the idea of it. They don’t like to speak up and find it hard to see a doctor for check-ups. More than anything, for them, it’s the prostate.

There’s still so much fear of cancer. The term really does carry some stigma.

My Message For Other Cancer Patients in Latin America

Those of us who’ve suffered from cancer should talk about what we went through, because experience is what counts. It’s best to share what they learned with others.

It happened to me when I had stage 2 breast cancer, and I got past it. And here I am, getting on with my life and working in cancer advocacy. It seems to me that the important thing for those who’ve had cancer, as well as those who currently have it, is to talk about it and share their experiences.

Doing so can help those who might be struggling with it, especially those who are so scared that they can’t see their way through and who could really use a little guidance and support.

I would like other patients to participate in the patients’ associations. These associations can provide powerful support that families and friends might not be able to. This is a different sort of support than oncologists and doctors can provide.

Of course, oncologists have a key role to play. They’re the only ones who might understand and with whom we have to work to make cancer better known and to make the stigma surrounding it disappear.

How Spreading Cancer Advocacy Through VICARE GU Can Help People

The most important thing VICARE GU can provide is to capture the knowledge of cancer patients and provide a resource for them and others like them. Not only for patients, but also for their family members and friends.

Speech shares information, and information is knowledge. And knowledge can decrease over time. This can lead to ignorance and fear — fear that supports the stigma of the word “cancer” for the rest of society.

VICARE GU is available to help both patients with whatever they need, to be able to live better with cancer. And it’s also free of charge for patient organizations to participate in as well.

Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Fiorella!

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How a Mom with Stage 4 Colon Cancer Turned Pain Into Purpose

Post author By Katrina Villareal
Post date July 14, 2025
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July 14, 2025

How a Mom with Stage 4 Colon Cancer Turned Pain Into Purpose

When Lauren began feeling off in early 2025, she figured it was just constipation, since she was usually irregular. But when she found herself running to the bathroom up to 27 times a day, she knew something wasn’t right. Despite her persistence, early appointments with her primary care provider and even an ER visit didn’t give her the answers she needed. Her path to a stage 4 colon cancer diagnosis would take perseverance.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Eventually, her gut instincts led her to push for a GI consult, and that’s when her life changed. After a colonoscopy couldn’t even get past the blockage, a CT scan finally revealed the unthinkable: stage 4 colon cancer, specifically a rare and aggressive type called signet ring cell carcinoma (SRCC).

Lauren’s diagnosis came fast, and with it, a whirlwind of decisions. Within hours of her arrival at the ER, doctors were talking about cancer and prepping for emergency surgery. Lauren underwent a colon resection and came home with a colostomy bag. At just 41 years old, she found herself facing a diagnosis most people associate with much older adults. And while the shock was overwhelming, Lauren chose to face it with openness, strength, and grace.

Navigating treatment has been tough. Chemotherapy brought on intense neuropathy, nausea, and deep fatigue, but Lauren focuses on what keeps her going: her two young children, her incredibly supportive husband and family, and her inner fire. Talking to her kids about the changes in her body, including the colostomy bag and the port in her chest, wasn’t easy, but she handled it with honesty and love. Her children quickly adapted. Their curiosity turned into acceptance, and their resilience reminded Lauren that life, even now, is still full of beauty.

Since being diagnosed with stage 4 colon cancer, Lauren’s perspective has shifted in powerful ways. She’s slowed down, learned to cherish simple joys like reading in the backyard, and poured her heart into writing children’s books, stories inspired by her daughter’s autism diagnosis. Cancer pushed her to finally do what she loved.

Lauren now advocates fiercely for early screenings, especially since her cancer type often doesn’t show symptoms until it’s advanced. She also urges others to trust themselves. If something feels off, speak up. Her story is a moving reminder that you don’t need to look sick to be facing something serious, and that even in the hardest moments, it’s possible to find love, purpose, and joy.

Watch Lauren’s full interview to find out more about her story:

Discover how a bathroom log helped lead to a life-saving diagnosis.
Learn how Lauren explained stage 4 colon cancer to her young children in the most beautiful way.
Find out why her daughter’s autism diagnosis gave even deeper meaning to her children’s books.
Hear how Lauren’s life shifted from corporate chaos to creative purpose.
See how love, laughter, and support lifted her through one of life’s hardest moments.

Name: Lauren G.
Age at Diagnosis:
- 41
Diagnosis:
- Colon Cancer (Signet Ring Cell Carcinoma)
Symptoms:
- Frequent urges to have bowel movements (up to 27x/day)
- Incomplete evacuation
- Abdominal bloating
Treatments:
- Surgeries: colectomy (colon resection), colostomy bag placement
- Chemotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Lauren!

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Self-Advocacy and Stage 4 Colon Cancer: Jay’s Story

Post author By Chris Sanchez
Post date June 10, 2025
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June 10, 2025

Jay’s Path to Self-Advocacy and Healing Beyond Stage 4 Colon Cancer

Jay, an ex-athlete and father of three, was diagnosed with stage 4 colon cancer when he was 43. It all started with a symptom many might overlook: intermittent blood in his stool. But rather than dismiss it, Jay consulted his doctor. This touched off a series of medical tests. A CT scan and colonoscopy revealed a mass, marking the beginning of his life-altering experience.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Despite the shock, Jay embraced the process with resilience, navigating surgeries, chemotherapy, and countless medical procedures. His ordeal wasn’t just physical. The mental toll of living with stage 4 colon cancer reshaped his identity. He describes feeling like the sole survivor of a plane crash, grappling with survivor’s guilt as he watched fellow patients succumb to the disease.

This emotional weight prompted Jay to seek mental health support, helping him process not just survival but the loss and changes around him. He discovered that PTSD doesn’t only follow traumatic events like war — it can also stem from enduring a significant illness.

Throughout his treatment for stage 4 colon cancer, Jay focused on self-advocacy. He actively participated in treatment decisions and opted for advanced tests like the KRAS test to personalize his care. This approach to self-advocacy also meant embracing help from family and friends, acknowledging that support isn’t a sign of weakness but an integral part of healing. Jay noted that in his view, his wife and close family bore emotional burdens just as heavy as his own.

Physically, the long-term side effects of treatment linger. Jay describes his fatigue, altered taste sensations, and sensitivity to cold drinks— all reminders of what his body has been through. Yet, his mindset remains empowered. He stresses the importance of being active and cherishes the people who walked beside him, whether offering physical or emotional support.

Jay’s story isn’t just about surviving stage 4 colon cancer — it’s about what he did starting at his diagnosis. From the moment he received the news, Jay became a fierce advocate for his own care. He asked questions, sought out advanced testing, and made sure his voice was part of every treatment decision.

Watch Jay’s story and discover:

The importance of listening to your body
The role of self-advocacy in shaping a treatment path
The unexpected mental hurdles that can come from beating stage 4 colon cancer
Why accepting help is one of the strongest things you can do
How it might be possible to turn an unsettling diagnosis into a life of gratitude and self-awareness

Name:
- Jay W.
Age at Diagnosis:
- 43
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptom:
- Occasional presence of blood in stool
Treatments:
- Chemotherapy
- Surgery: installation of port and liver infusion pump, colectomy, hepatectomy, liver ablation, removal of liver infusion pump

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Jay!

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Hope in Pancreatic Cancer Treatment: Biomarkers & NanoKnife

Post author By Chris Sanchez
Post date May 30, 2025
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May 30, 2025

How Biomarkers and the NanoKnife Offered Elise New Hope in Her Pancreatic Cancer Treatment

When Elise was diagnosed with stage 4 pancreatic cancer in 2012, she never expected to be utilizing emerging pancreatic cancer treatments. Through biomarker testing and a newer procedure called the NanoKnife, Elise found options—and hope. 13 years later, she describes the experience as “a gift in a strange package,” which shows how she found purpose through pain and resilience despite the hardship.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Elise’s symptoms began with persistent pain, indigestion, and unintentional weight loss. After countless doctor visits, a CT scan with contrast revealed a large tumor near her pancreas, confirming the diagnosis of stage 4 pancreatic cancer. Her relentless push for answers underscores the importance of self-advocacy in healthcare.

Elise’s experience also highlights the significant role of genetic and molecular testing, commonly called biomarker testing. She was found to be BRCA2-positive (this is a genetic mutation linked to increased cancer risk). This revelation not only clarified her diagnosis but also opened doors to targeted treatments. She received chemotherapy, radiation, and an innovative procedure called irreversible electroporation, which helped eliminate her tumor.

Through it all, Elise’s positive attitude became her anchor. Her doctor’s encouraging words and approach provided her with the mental strength to face each day. This highlights how crucial a doctor’s words can be in shaping a patient’s mindset. Elise’s faith, family support, and the unwavering belief in hope played key roles in her recovery.

Elise’s stage 4 pancreatic cancer story emphasizes the need for advocacy, the importance of biomarker testing, and the power of optimism. She passionately advises others diagnosed with pancreatic cancer to seek second opinions, advocate for themselves, and never give up hope. As she beautifully puts it, “Hope trumps fear.”

Watch Elise’s video and find out more about:

How numerous doctor visits turned into a miracle in her fight against stage 4 pancreatic cancer.
The simple words from a doctor that transformed Elise’s outlook.
Why biomarker testing can be life-changing for cancer patients.
How her positive attitude and faith fueled her recovery.
The innovative procedure that helped save Elise’s life.

Name:
- Elise T.
Age at Diagnosis:
- 43
Diagnosis:
- Pancreatic Cancer
Staging:
- Stage 4
Symptoms:
- Severe and persistent back and stomach pain
- Weight loss
- Indigestion
Treatments:
- Chemotherapy
- Surgery: irreversible electroporation
- Radiation therapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Elise!

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How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

Hi, I’m Amina

When something first felt off

There was a big delay in my diagnosis

How I found my care team

When I heard the words “you have cancer”

What my treatment plan looked like

Managing the side effects of chemotherapy

How I navigated having cancer so young

My support system helped get me through the hard days

What survivorship means to me

What I want others to know

How often I’m monitored

My dad was diagnosed with cancer after me

Inspired by Amina's story?

More Metastatic Hodgkin Lymphoma Stories

“You Are Not Your Cancer”: Colleen’s Stage 4 Endometrial Cancer Message

About Me

When I First Noticed That Something was Wrong

My Symptoms Had Progressed Even Before the Car Accident

The Tests the Doctor Did

The Moment Everything Changed

The Cancer Spread

How My Care Team Shifted When My Cancer Spread

Where I’m At in My Diagnosis

My Knowledge of Clinical Trials

How I’m Managing my Mental Health

What I Want Others to Know

Inspired by Colleen's story?

More Endometrial Cancer Stories

How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer

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The Patient Story Podcast: I’m a Young Cancer Patient

(Ep. 01) From Cancer Caregiver to Patient: Taylor’s Story

Podcast Summary

Introducing Taylor: A Patient Advocate Becomes the Patient

The Shock of Diagnosis: Getting News from MyChart

Emotional Fallout: Processing a Cancer Diagnosis

Self-Advocacy: Trusting Your Instincts and Pushing for Answers

Barriers and Delays: Navigating the Healthcare System

The Waiting Game: Coping with Uncertainty and Lack of a Plan

Community and Connection: Reaching Out and Trauma Bonding

Telling Others: Navigating Reactions and Support Systems

Supporting a Loved One: Tips for Friends and Family from a Patient Advocate

Sharing the Journey Publicly: The Power and Healing of Storytelling

Give Yourself Grace: Final Reflections and Words of Wisdom

Inspired by Taylor's story?

More Patient Advocate Stories

More Young Adult Thyroid Cancer Stories

Curiosity and Self-Advocacy Shaped Ian’s Stage 3C Colon Cancer Experience

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More Colon Cancer Stories

How Getting a Second Opinion Saved Crystal’s Life After a Very Rare Soft Tissue Sarcoma Diagnosis

Inspired by Crystal's story?

More Soft Tissue Sarcoma Stories

Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

About Me

How I Found Out I Had Stage 2 Breast Cancer

Telling My Friends and Family About My Diagnosis

I Looked for a Second Opinion

I Believe in Empowered Care

Getting Involved in Cancer Advocacy in Argentina

“Cancer” is Such a Dreaded Word

My Message For Other Cancer Patients in Latin America

How Spreading Cancer Advocacy Through VICARE GU Can Help People

Inspired by Fiorella's story?

More Breast Cancer Stories

How a Mom with Stage 4 Colon Cancer Turned Pain Into Purpose

Inspired by Lauren's story?

More Metastatic Colon Cancer Stories

Jay’s Path to Self-Advocacy and Healing Beyond Stage 4 Colon Cancer

Inspired by Jay's story?

More Colon Cancer Stories

How Biomarkers and the NanoKnife Offered Elise New Hope in Her Pancreatic Cancer Treatment

Inspired by Elise's story?

More Pancreatic Cancer Stories