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

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. patient 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)
Taylor S. patient advocate


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 S. patient advocate
Taylor S. patient advocate

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.

Taylor S. patient advocate
Taylor S. patient advocate

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. 

Taylor S. patient advocate
Taylor S. patient advocate

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. 

Taylor S. patient advocate
Taylor S. patient advocate

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.

Taylor S. patient advocate
Taylor S. patient advocate

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. 

Taylor S. patient advocate
Taylor S. patient advocate

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. 

Taylor S. patient advocate

… 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.

Taylor S. patient advocate

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. 

Taylor S. patient advocate
Taylor S. patient advocate

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. 

Taylor S. patient advocate

… 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.

Taylor S. patient advocate

Sharing the Journey Publicly: The Power and Healing of Storytelling

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. 

Taylor S. patient advocate
Taylor S. patient advocate

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.

Taylor S. patient advocate

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!

Inspired by Taylor's story?

Share your story, too!


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Taylor S. patient advocate

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Taylor S. patient advocate

Taylor S., Patient Advocate, Thyroid Cancer (Oncocytic Carcinoma of the Thyroid Gland), Stage 1



“Give yourself grace, but also do it on your own time.”
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Lindsay C. thyroid cancer

Lindsay C., Thyroid Cancer (Papillary Thyroid Carcinoma)



Symptoms: Lightheadedness to the point of fainting, low blood pressure, loss of menstrual period, weight loss, brain fog, joint pain (old injuries and surgeries hurting), soreness and stiffness of legs, depression, severe anxiety, trouble concentrating, sweaty palms, dry eyes, sensitivity to light and sound, tingling in hands and feet, hair loss, weak nails, tiny bumps on legs, digestive issues (soft stool and diarrhea), rapid heartbeat, fatigue despite sleeping for long hours, insomnia, nightmares/night terrors, temperature dysregulation/burning sensations, (burning hands but feet and ears ice-cold)

Treatment: Surgery (thyroidectomy)

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Symptoms: No outright signs or symptoms; evaluation by new doctor found a nodule

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Chemotherapy Clinical Trials Colon Colorectal Partial colectomy Patient Stories Surgery Treatments

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

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 D. stage 3C colon cancer

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
Ian D. stage 3C colon cancer
Ian D. stage 3C colon cancer
Ian D. stage 3C colon cancer
Ian D. stage 3C colon cancer
Ian D. stage 3C colon cancer
Ian D. stage 3C colon cancer
Ian D. stage 3C colon cancer

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.


Ian D. stage 3C colon cancer
Thank you for sharing your story, Ian!

Inspired by Ian's story?

Share your story, too!


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Ian D. stage 3C colon cancer

Ian D., Colon Cancer, Stage 3C



Symptoms: Fatigue, unusual blood test results during annual physical, blood in stool

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Lauren G., Colon Cancer, Stage 4



Symptoms: Frequent urges to have bowel movements (up to 27x/day), incomplete evacuation, abdominal bloating
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Jackson A., Colon Cancer, Stage 3



Symptom: Sharp abdominal pain
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Jay W., Colon Cancer, 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)

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Kelly C., Colon Cancer, Stage 4



Symptoms: Constipation, bloating, severe abdominal pain

Treatments: Surgeries (colectomy, colostomy, hepatectomy), chemotherapy

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Marc Anthony S., Lynch Syndrome and Colon Cancer, Stage 2A



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Categories
Chemotherapy Colostomy Cystectomy Hysterectomy (partial) Malignant Peripheral Nerve Sheath Tumor (MPNST) Patient Stories Proctectomy Rare Reconstruction Sarcoma Soft Tissue Sarcoma Surgery Treatments Urostomy

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

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.

Crystal S. MPNST

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
Crystal S. MPNST
Crystal S. MPNST
Crystal S. MPNST
Crystal S. MPNST
Crystal S. MPNST
Crystal S. MPNST
Crystal S. MPNST

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.


Crystal S. MPNST
Thank you for sharing your story, Crystal!

Inspired by Crystal's story?

Share your story, too!


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Symptoms: Pain behind left knee, needle-like sensation in left foot
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Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

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.

Fiorella G. stage 2 breast cancer

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
Fiorella G. stage 2 breast cancer

Johnson & Johnson - J&J

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.



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. 

Fiorella G. stage 2 breast cancer
Fiorella G. stage 2 breast cancer

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. 

Fiorella G. stage 2 breast cancer
Fiorella G. stage 2 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. 

Fiorella G. stage 2 breast cancer

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

Fiorella G. stage 2 breast cancer

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.

Fiorella G. stage 2 breast cancer
Fiorella G. stage 2 breast cancer

“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.

Fiorella G. stage 2 breast cancer

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.

Fiorella G. stage 2 breast cancer
Fiorella G. stage 2 breast cancer

Johnson & Johnson - J&J

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


Fiorella G. stage 2 breast cancer
Thank you for sharing your story, Fiorella!

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More Breast Cancer Stories

Natalie
Natalie W., DCIS, Stage 0, ER+; Paget’s Disease



Symptom: Lump in right breast

Treatments: Lumpectomy, double subcutaneous mastectomy, hormone therapy (tamoxifen)
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Symptoms: Pain in left breast, left nipple inverting

Treatments: Double mastectomy, chemotherapy (AC-T), radiation
Tina C., DCIS & LCIS, Stage 3A, ER+



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Treatments: Double mastectomy, chemotherapy (AC-T), radiation, hormone therapy (tamoxifen, Zoladex)

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Symptom: Pain in left breast radiating from lump

Treatments: Bilateral mastectomy, chemotherapy, hormone therapy (tamoxifen)
LaShae R.

LaShae R., IDC & DCIS, Stage 2B, ER+



Symptoms: Lump in breast, pain
Treatments: Chemotherapy (Taxotere and cyclophosphamide), proton radiation

Categories
Chemotherapy Colectomy Colon Colorectal Metastatic Patient Stories Surgery Treatments

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

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 G. stage 4 colon cancer

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
Lauren G. stage 4 colon cancer
Lauren G. stage 4 colon cancer
Lauren G. stage 4 colon cancer
Lauren G. stage 4 colon cancer
Lauren G. stage 4 colon cancer
Lauren G. stage 4 colon cancer
Lauren G. stage 4 colon cancer

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.


Lauren G. stage 4 colon cancer
Thank you for sharing your story, Lauren!

Inspired by Lauren's story?

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Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy

Steve S., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, changes in bowel habits, feeling gassy and bloated

Treatments: Surgery, chemotherapy, monoclonal antibody, liver transplant
Jessica T. feature profile

Jessica T., BRAF Mutation Colon Cancer, Stage 4



Symptoms: Severe stomach cramps, diarrhea, vomiting, anemia (discovered later)

Treatments: Surgery (hemicolectomy), chemotherapy

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Jennifer T., Colon Cancer, Stage 4



Symptoms: Weight loss, coughing, vomiting, sciatica pain, fatigue

Treatments: Surgeries (colectomy, lung wedge resection on both lungs), chemotherapy, immunotherapy
Kasey S. feature profile

Kasey S., Colon Cancer, Stage 4



Symptoms: Extreme abdominal cramping, mucus in stool, rectal bleeding, black stool, fatigue, weight fluctuations, skin issues (guttate psoriasis)
Treatments: Surgeries (colectomy & salpingectomy), chemotherapy


Categories
Ablation therapy Chemotherapy Colectomy Colon Colorectal Hepatectomy Patient Stories Surgery Treatments

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

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.

Jay W. stage 4 colon cancer

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
Jay W. stage 4 colon cancer
Jay W. stage 4 colon cancer
Jay W. stage 4 colon cancer
Jay W. stage 4 colon cancer
Jay W. stage 4 colon cancer

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.


Jay W. stage 4 colon cancer
Thank you for sharing your story, Jay!

Inspired by Jay's story?

Share your story, too!


More Colon Cancer Stories

 
Ian D. stage 3C colon cancer

Ian D., Colon Cancer, Stage 3C



Symptoms: Fatigue, unusual blood test results during annual physical, blood in stool

Treatments: Surgery (partial colectomy), chemotherapy, clinical trial
Lauren G. stage 4 colon cancer

Lauren G., Colon Cancer, Stage 4



Symptoms: Frequent urges to have bowel movements (up to 27x/day), incomplete evacuation, abdominal bloating
Treatments: Surgeries (colectomy, colostomy bag placement), chemotherapy
Jackson A. stage 3 colon cancer

Jackson A., Colon Cancer, Stage 3



Symptom: Sharp abdominal pain
Treatment: Surgery (emergency transverse colectomy)

Jay W. stage 4 colon cancer

Jay W., Colon Cancer, 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)

Kelly C. stage 4 colon cancer

Kelly C., Colon Cancer, Stage 4



Symptoms: Constipation, bloating, severe abdominal pain

Treatments: Surgeries (colectomy, colostomy, hepatectomy), chemotherapy

Marc Anthony S. Lynch syndrome

Marc Anthony S., Lynch Syndrome and Colon Cancer, Stage 2A



Symptoms: Blood in stool, severe constipation, persistent exhaustion, constantly feeling cold

Treatment: Surgeries (sigmoid colectomy, lymphadenectomy)


Categories
Chemotherapy Irreversible electroporation NanoKnife Pancreatic Cancer Patient Stories Radiation Therapy Surgery Treatments

Hope in Pancreatic Cancer Treatment: Biomarkers & NanoKnife

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 T. stage 4 pancreatic cancer

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
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer

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.


Elise T. stage 4 pancreatic cancer
Thank you for sharing your story, Elise!

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More Pancreatic Cancer Stories


Roger R., Pancreatic Cancer, Stage 2



Symptom: None

Treatments: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine
Matthew R. feature profile

Matthew R., Pancreatic Cancer, Stage 4



Symptoms: Dark urine, bone white stool, itching on palms and soles
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Symptoms: Significant weight loss, stomach and digestive problems

Treatment: Chemotherapy

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Symptoms: Upper abdominal pain, nausea, vomiting

Treatment: Surgery (Pancreaticoduodenectomy or Whipple procedure)
Elise T. stage 4 pancreatic cancer

Elise T., Pancreatic Cancer, Stage 4



Symptoms: Severe and persistent back and stomach pain, weight loss, indigestion

Treatments: Chemotherapy, surgery (irreversible electroporation), radiation therapy


Categories
Adrenal Cancer Adrenalectomy Chemotherapy Nephrectomy Patient Stories Surgery Treatments

Janelle’s Stage 4 Adrenal Cancer Story of Connection

Janelle’s Stage 4 Adrenal Cancer Story: The Power of Persistence and Connection

Janelle is a spirited 42-year-old whose resilience shines through despite her rare diagnosis of stage 4 adrenal cancer. Her experience underscores the importance of self-advocacy, mental health, and the power of community support.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Janelle’s health concerns began in 2013 with an unusual thirst — she was drinking as much as 300 oz of water daily. Despite numerous doctor visits, misdiagnoses, being gaslit, and even being dismissed as “attention-seeking,” her persistence never wavered. She navigated through multiple endocrinologists until her trusted primary care physician took her symptoms seriously. In 2021, a sudden sharp pain from a kidney stone led to a CT scan, revealing a four-centimeter mass on her adrenal gland — a life-saving discovery hidden behind unexpected agony.

Janelle C. stage 3 adrenal cancer

The diagnosis? Stage 3 adrenal cancer (adrenocortical carcinoma), which later advanced to stage 4 adrenal cancer after it was found to have spread to Janelle’s lungs. The emotional weight of the news, compounded by family health crises and feelings of isolation, was overwhelming. But she found solace in connecting with others across the globe facing the same rare cancer. These connections became her anchor, offering an invaluable sense of belonging in a sea of uncertainty.

With a treatment plan involving an oral chemotherapy medicine derived from a compound as controversial as its history (it’s related to the banned pesticide DDT), Janelle faces harsh side effects: relentless fatigue, nausea, and more. Despite these challenges, her mental fortitude remains strong. She copes with the invisible nature of her illness, combating not just stage 4 adrenal cancer but also the misconceptions of those around her. Her husband’s unwavering support and the thought of her beloved niece fuel her determination.

Janelle’s message is clear: self-advocacy is non-negotiable. Her story is a testament to the importance of trusting your instincts, pushing for answers, and never settling when it comes to your health.

Watch Janelle’s video and find out more about:

  • How a kidney stone turned out to be the unexpected hero of her life.
  • The rare cancer community that spans continents and hearts.
  • How Janelle’s persistence saw her through, even though she kept getting dismissed by doctors.
  • The unseen battles and silent strength that are part and parcel of living with stage 4 adrenal cancer.
  • The everyday heroes behind Janelle’s fight — family, friends, and fierce self-advocacy.

  • Name:
    • Janelle C.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Adrenal Cancer (Adrenocortical Carcinoma)
  • Staging:
    • Stage 4
  • Symptoms:
    • Excessive thirst and water intake
    • Interrupted sleep due to waking to drink and urinate
    • Suspicious weight gain despite working out
  • Treatments:
    • Surgeries: adrenalectomy, nephrectomy
    • Oral chemotherapy
    • Steroids
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer

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.


Janelle C. stage 3 adrenal cancer
Thank you for sharing your story, Janelle!

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More Adrenal Cancer Stories


Ashley S., Adrenal Cancer, Stage 4



Symptoms: Swollen ankles, very low potassium levels

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...
Ashley P. feature profile

Ashley P., Adrenal Cancer, Stage 4



Symptom: Mild back pain on her left side that escalated in severity
Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib
...
Cassandra R. stage 4 adrenal cancer

Cassandra R., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4



Symptoms: None; inconclusive bloodwork during a blood test to determine her baby’s gender

Treatments: Surgery (adrenalectomy), radiation therapy, chemotherapy, immunotherapy
...

Hope L., Adrenal Cancer, Stage 2



Symptoms: High blood pressure, butterfly rash, joint pain and swelling, rapid heart rate

Treatments: Surgery (adrenalectomy), chemotherapy
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Janelle C. stage 4 adrenal cancer

Janelle C., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4



Symptoms: Excessive thirst and water intake, interrupted sleep due to waking to drink and urinate, suspicious weight gain despite working out

Treatments: Surgeries (adrenalectomy, nephrectomy), chemotherapy

...

Categories
Chemotherapy Head and Neck Cancer Immunotherapy Neck dissection Partial glossectomy Patient Stories Radiation Therapy Squamous Cell Carcinoma Surgery Tongue Cancer Treatments

Ryan’s Clinical Trial Experience Facing Stage 4 Tongue Cancer

Stage 4 Tongue Cancer and the Power of Speaking Up: Ryan’s Clinical Trial Journey

Ryan’s story is a powerful testament to resilience, support, and the complexities of living with stage 4 tongue cancer. He’s a husband and father to two boys, and balances family life with the demanding realities of his diagnosis, treatments, and emotional shifts.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Ryan’s cancer story began subtly, with a deceptively small white spot on his tongue, which was shrugged off during numerous dental visits. Life was busy, and it wasn’t until the spot wouldn’t heal that he sought an oral surgeon’s opinion. A biopsy confirmed his fears: stage 4 tongue cancer (squamous cell carcinoma of the head and neck). From there, his life transformed rapidly with surgeries, including a partial glossectomy (the removal of part of his tongue), neck dissection (the removal of cancerous lymph nodes in his neck), and reconstruction of his tongue. These procedures were followed by extensive rounds of radiation, chemotherapy, immunotherapy, and participation in clinical trials.

stage 4 head and neck cancer

Ryan’s clinical trial experience at MD Anderson has been both hopeful and challenging. He debunks the myth about placebos in cancer trials, emphasizing that all participants receive the standard of care, with trials testing potentially more effective therapies. His trial opened new avenues in his treatment plan. This part of his experience highlights the critical role of clinical trials in advancing cancer treatment, offering patients like Ryan additional options beyond conventional methods.

Day-to-day life with stage 4 tongue cancer is layered with physical and emotional hurdles. Ryan travels weekly for his treatments, navigating the logistical and financial strains with the support of his family. The emotional weight is substantial — not just for him, but also for his wife and kids. He describes the emotional aftermath akin to grief, with friends and family often reacting as if he’s already gone, which adds to the complexity of living with an ongoing illness.

Ryan’s narrative sheds light on the unseen burdens carried by family and friends. His wife bears the brunt of emotional stress, managing her fears and the daily realities of their children’s lives. Ryan’s determination to stay engaged in his children’s lives drives him, even as he tackles the harsh side effects of treatment.

Ryan’s advice to others facing similar battles? Own your treatment. Speak up, advocate for yourself, and ensure your voice is heard in your care decisions. This proactive approach has been crucial in Ryan’s experience, helping ensure that he receives attentive and appropriate care.

Watch Ryan’s video to find out about:

  • How a small white spot led to his stage 4 tongue cancer diagnosis.
  • The emotional toll of cancer — not only on patients but also on their families.
  • Ryan’s firsthand experience debunking myths about clinical trials.
  • Weekly flights, family strains, and fighting for normalcy with cancer.
  • Why Ryan believes hope isn’t enough — and about what really matters.

  • Name:
    • Ryan A.
  • Age at Diagnosis:
    • 39
  • Diagnosis:
    • Tongue Cancer (Squamous Cell Carcinoma of the Head and Neck)
  • Staging:
    • Stage 4
  • Symptom:
    • Lesion on the side of the tongue
  • Treatments:
    • Surgeries: partial glossectomy, neck dissection, tongue reconstruction
    • Chemotherapy
    • Immunotherapy
    • Radiation
stage 4 head and neck cancer
stage 4 head and neck cancer
stage 4 head and neck cancer
stage 4 head and neck cancer
stage 4 head and neck cancer

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.


stage 4 head and neck cancer
Thank you for sharing your story, Ryan!

Inspired by Ryan's story?

Share your story, too!


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Categories
Chemotherapy Gastric Adenocarcinoma Immunotherapy Patient Stories Stomach Cancer Treatments

Emily’s Incurable Stage 4 Stomach Cancer

Controlling What She Can: Emily Navigates Incurable Stage 4 Stomach Cancer

Emily, a former Olympic athlete, was diagnosed with stage 4 stomach cancer (gastric adenocarcinoma) in July 2024. Her health concerns began shortly after giving birth to her son in November 2023. Initially, she experienced what seemed like postpartum-related stomach aches, which progressed to early fullness, unexplained weight loss, and vomiting without nausea. Despite several medical consultations and tests — including endoscopies and biopsies that initially came back negative — Emily trusted her instincts when something didn’t sit right.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Determined to find answers, Emily sought a second opinion that finally led to the correct diagnosis of stage 4 stomach cancer. While the news was devastating, her response was both inspiring and empowering. She shifted her focus to what she could control — her mindset, her health, and the time she spends with her family. Despite being told her cancer was incurable, Emily holds onto hope, continually reinforcing positivity through daily affirmations and self-belief.

Emily D. stage 4 stomach cancer

Exercise remains Emily’s anchor. Drawing from her athletic background, she incorporates physical activity into her routine — not to train for competitions, but to maintain her strength during treatments. Running, skiing, lifting weights, and even simple walks help her feel like herself. This connection to her physical well-being supports her mental health, creating a cycle of resilience and positivity.

Emily also channels her energy into meaningful projects for her family. She writes heartfelt letters for her son and compiles a cookbook for her husband, ensuring her presence remains strong in their lives. She embraces integrative approaches to health, combining traditional treatments like chemotherapy and immunotherapy with lifestyle habits that nurture her body and spirit.

While navigating the emotional weight of her stage 4 stomach cancer diagnosis, Emily’s perspective is profoundly moving. She acknowledges the fear but refuses to let it define her. She often reminds herself, “I’m a sample of one,” choosing to see statistics as impersonal numbers that don’t capture individual possibilities. Emily’s story isn’t just about living with stage 4 stomach cancer — it’s about living fully, with intention and love.

Watch Emily’s video and find out about:

  • How her competitive mindset fuels her life with stage 4 stomach cancer.
  • The symptom Emily thought was postpartum-related, but ended up changing her life.
  • How her intuition led to a diagnosis that doctors initially missed.
  • From chemotherapy to cookbooks: Emily’s heartfelt way of leaving a legacy.
  • Why Emily believes statistics don’t define her story and how that belief empowers her.

  • Name:
    • Emily D.
  • Age at Diagnosis:
    • 35
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Staging:
    • Stage 4
  • Symptoms:
    • Persistent postpartum stomachache
    • Early satiety
    • Difficulty swallowing
    • Vomiting
  • Treatments:
    • Chemotherapy
    • Immunotherapy
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer

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.


Emily D. stage 4 stomach cancer
Thank you for sharing your story, Emily!

Inspired by Emily's story?

Share your story, too!


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