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Chemotherapy Diffuse Large B-Cell (DLBCL) Metastatic Non-Hodgkin Lymphoma Patient Stories Treatments

From Life with a Newborn to Stage 4 DLBCL: Anna’s Story

From Life with a Newborn to Stage 4 DLBCL: Anna Navigates Her Diagnosis Through Positivity

Anna was just settling into the sweet spot of life, running a coffee business with her husband, enjoying her new home, and parenting her toddler and newborn, when she found an unusual lump while breastfeeding. Though it was initially dismissed as a common milk cyst by her OB and even after an ultrasound, Anna’s persistence led to a biopsy that revealed a shocking diagnosis: diffuse large B-cell lymphoma (DLBCL). It was stage 4, an advanced presentation that initially terrified her family and friends, but was quickly clarified by her oncologist as a highly treatable blood cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Facing aggressive chemotherapy and hair loss while caring for an infant and a toddler presented immense emotional challenges. Anna had to stop breastfeeding abruptly and navigate the physical changes of treatment, including shaving her head, a moment she feared would scare her children. Instead, her two-and-a-half-year-old son’s reaction was pure love: “Oh, mommy, you look cute.” This moment, along with seeing a contestant rock alopecia with confidence on The Great British Baking Show, helped Anna embrace her new look and focus on the present joys of motherhood rather than the fears of the future.

Anna M. DLBCL

Throughout her DLBCL experience, Anna has leaned into her natural optimism, reframing her diagnosis not as a tragedy, but as a challenge she is uniquely equipped to handle. By taking life one day at a time and refusing to wish away her baby’s first year to get to the end of treatment, she has found profound strength. Her story underscores the power of a supportive “village,” the resilience of young mothers, and the importance of advocating for yourself when your body tells you something isn’t right.

Learn more about Anna’s story by watching her video or scrolling down to read her edited interview transcript.

  • Trust your instincts. Even when medical professionals suspect a common issue like a breastfeeding cyst, push for answers if something feels wrong in your body
  • Stage 4 isn’t always the end. In blood cancers like DLBCL, a kind of non-Hodgkin lymphoma, stage 4 indicates where the cancer is located, not necessarily a poor prognosis; it remains highly treatable
  • The “candle” analogy. Chemotherapy treats systemic blood cancer (multiple candles) just as effectively as it treats a single spot (one candle); the “water” extinguishes them all
  • Children can be resilient anchors. As Anna’s kids show, young kids often accept physical changes like hair loss with surprising ease, and can keep you grounded in the present moment
  • You are stronger than you think. Adversity often reveals a depth of resilience and toughness you didn’t know you possessed until it was tested

  • Name: Anna M.
  • Age at Diagnosis:
    • 31
  • Diagnosis:
    • Diffuse Large B-Cell Lymphoma (DLBCL)
  • Staging:
    • Stage 4
  • Symptom:
    • A rapidly growing, painless lump on the breast
  • Treatment:
    • Chemotherapy
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL

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.



I’m Anna

I have diffuse large B-cell non-Hodgkin’s lymphoma, stage 4. I was diagnosed this year in October, and I am from Arkansas.

At this point, my biggest passion, purpose, and what I’m doing every single day is I’m a mom. I have two small boys. I have a two-and-a-half-year-old and an eight-month-old. I worked full-time before having children, but once I did, they were obviously the most important priority. Being able to spend time with them has become my life’s work, now that they exist and are alive. Before that, I worked in journalism, in storytelling, in instructional design. That was my career before children.

My husband and I also own a coffee company. We do events. We take coffee catering to events like weddings, corporate events, and birthday parties. We basically get to be at people’s greatest times, serving coffee and talking to people in the community. It’s really fun. It’s been a really good way to stay connected while I am a stay-at-home mom. I would say my number one passions are my children and then being in the community in some aspect, getting to be involved with people, especially on people’s wedding days. That’s just the most fun thing ever because it’s their happiest day, and getting to witness that, even if I’m just serving coffee, is really cool.

I have kind of always been this way, smiling. I actually had to learn in my adult years how to be angry and how to deal with negative feelings because I had some. At times, it might be toxic positivity, just always being so positive and kind of ignoring and shoving those other feelings to the wayside. But I think as I’ve grown, and especially as I’ve dealt with adversity, I’ve learned that you can have both at the same time. You could recognize the bad and still feel the good and the joy and the positive, which I think has been really important to learn. Cancer has been another thing that has taught me that.

My mom instilled in us when we were little to be able to laugh at ourselves and not to take ourselves too seriously. I think that has just made me always find the silver lining or the brighter side, or to help other people feel that. If it’s kind of like — I’m sure you saw some of my videos making fun of my no hair or bringing light to my baldness — I will make myself not the butt of the joke, but I will make a joke out of something if it means somebody else is going to laugh. If it can bring some positivity and some joy to someone else. I think I can turn situations into that for myself. It’s just always kind of been ingrained in me since I was little.

Life before my diagnosis: new motherhood and business

Right before diagnosis, I had a baby, this April. We were just in the sweet spot of postpartum. We have the happiest baby. He is just the smallest little guy. So we were just really soaking up being second-time parents. We kind of know a little bit more about what we’re doing. We’re not as terrified because we’ve already done it once. Our older child was really excited to be a big brother.

Our coffee business is doing really well. We ordered a coffee roaster so that we could spread our reach; we wanted to be able to sell coffee to people, to be able to ship it, and spread the people that we’re able to serve, rather than just locally. We were kind of just in the groove. We were flowing. Being parents, being business owners — my husband’s also a teacher. So we were balancing all of these different things. Really getting into the groove of being new parents again and just enjoying life. My children and I were going out on adventures in town and playing outside, and just getting ready. I think whenever we found out about cancer, we were prepping for Halloween and getting the costumes ready.

Life just seemed like we were in a really good, sweet spot, which we were. A new baby brings so much joy and positivity. And as I said, he’s a really happy baby, too. We’ve owned this business for four years. So we were really in the flow of that. We were doing some renovations to our home as well because we’ve lived there for four years now. Everything was just kind of in a really sweet spot in life. We were thinking about when we’re going to do some camping trips and traveling because we’ve got the hang of being second-time parents. We weren’t as scared to take our baby out. Everything just seemed like life is good. Nothing’s really wrong. I was getting into the groove of working out again and just starting to feel like my normal self after having a baby. And then everything kind of changed. There’s still a lot of goodness, like I said. But that was life before, just a few months ago.

Discovery: finding a lump postpartum

The main symptoms of the cancer that I have are fatigue, night sweats, a fast-growing, painless lump in one of the lymph node areas (or outside of, in my case), and unexplained weight loss. For me, I was postpartum. Obviously, I was fatigued. I’m not sleeping through the night yet. I had lost weight because I had just had a baby. So that kind of explained it. Nursing and having a new baby and hormone changes — sometimes you do have the occasional hot flash, night sweat, whatever. So any symptom that I was having, I was unaware of because they were all kind of masked as just being a new mom, postpartum, and hormonal changes.

There was one night when I came back to go to bed after putting my son down, and I told my husband I felt a lump. I said, “Does this feel weird to you?” I found a lump in my breast. He was like, “Yeah, that definitely seems like kind of a big lump. Maybe you should call your doctor and get that checked out.”

I called my OB, and she was like, “Oh, we’ll get you in. It’s probably just breastfeeding-related because that happens a lot of the time.” She expected it just to be a cyst of sorts. Then she sent me to just get it double-checked. She was like, “I’m pretty sure it’s just a cyst from breastfeeding. But let’s go ahead and get somebody else who specializes in this to look at it.”

She sent me to get an ultrasound and a mammogram. They said the same thing: “It looks like it’s probably just a cyst from breastfeeding.” I think looking back now, that was probably because it wasn’t breast cancer, so it didn’t present as a typical breast cancer would. Anytime they looked at it, they were like, “Yeah, I don’t know. It’s kind of in the gray area, but most likely a milk cyst.”

Diagnosis: from breast cyst to non-Hodgkin lymphoma

They ended up deciding on a biopsy. Then once the biopsy came back, of course, this all happened in two weeks from when I first discovered it to finding out. They called me. The doctor who did the biopsy called me, and he said, “Your results came back, and they’re very interesting, a little unexpected.” I was like, “Okay, go ahead.” And he said, “Well, you don’t have breast cancer.” I was like, “That’s great news. Thank you. I’m so thrilled.” And he was like, “But you do have cancer.”

I just felt chills and the wave of… I think I started trembling, just thinking, You just told me I had cancer. Did I hear that right? He said, “You have non-Hodgkin’s lymphoma. It’s called Diffuse Large B-Cell Lymphoma. Do you have any questions?” I was like, “Well, yes, but I can’t think of any of them right now.” I think I asked a question that was just the first question that came to my mind, and he was like, “Actually, this is not my area of expertise. I’ve already sent this over to an oncologist. They’ll reach out, and they’ll be able to answer more questions.”

Really, truly, I didn’t notice any symptoms. Even when my blood work was drawn, it was relatively normal. There was no indication that there was cancer. It was really just that fast-growing, painless lump that I felt. Thank goodness I didn’t brush it off or just think, Oh, we’ll see what it does in a few weeks or anything like that. I’m really glad that people took me seriously when I showed, “Hey, I think this is a little abnormal,” because I know sometimes people will do that, and they’ll say, “Let’s just watch it for a little bit and see.”

My initial reaction and the silver linings

In a way, I thought our life was derailed at first. I was talking with a good friend from college the other day, and he was asking me all of these questions and really getting me to think about things I hadn’t thought about yet. I gave him back an answer, and then he said, “I’m not glad that you have cancer by any means. But I am so glad that you are you if this was going to happen to you.” I think what he meant is really just the way I have always just kind of been able to turn something into that silver lining to look for it.

Looking back, I’m just seeing all of these things that set us up for this diagnosis. Yes, we were in a sweet spot, but we were also so set up for this to happen. I bought a house right next door to my mom four years ago, so I have help right next door. I just had a baby, which is like the most joyful thing you can see every day. It reminds you that there is good even when bad is happening. As I said, I have the happiest baby. Anytime I would feel sadness or start to think about what was going on, I would look over, and he’s just smiling at me. It’s like, Okay, this sweet spot that we’re in, this place that we’re at, really sets us up for this to happen.

I also think in my family, not that I would ever want anybody to have cancer, but if somebody in my family was going to have to have it, I’m glad it was me. I feel like that sounds so weird to say, but it definitely feels like if it had happened to anybody else, it would have been harder emotionally for me. I’m looking at my family members and I’m like, I’m so sorry that you have to feel this because I know watching someone you love go through something like this is really hard. Being a mom now, I look at my mom and she’s been so positive and so helpful and so encouraging, but I know that there are times when it’s just really hard to watch your kid go through something like that. I can’t even imagine. My kid has a fever, and I’m like, The world is ending. So it’s definitely been a 180 from the sweet spot. But I know that it set us up to have the best experience that we could if something like this was going to happen.

Sharing the news with my family and friends

Telling people was really hard because I kept trying to find a convenient time. When I found out, I immediately went and told my mom and sister because they work close by. So I was able to get my kids in the car and drive to where they were. I waited until my husband got home that day because I didn’t want him to hear that news while he was in charge of other people’s kids. That is not a good time for that.

I definitely felt a lot of vulnerability and a lot of emotions and a lot of fear right away. You hear the words, and then you don’t know. I didn’t even know what lymphoma was before I was diagnosed. I didn’t know staging yet, or treatment, or what anything was going to look like. That was hardest for me: to not know what was going to happen and to just have so many questions. That’s when I think I showed a lot of my vulnerability and a lot of fear and anxiety. Everybody else kind of met me with their emotions, too, which I think was probably the best response to know. A lot of times, certain medical revelations or diagnoses can almost make you feel like you’re overreacting. When my emotions of fear and anxiety were met with the same, I was like, Okay, this makes me feel validated and like we’re ready to fight together. It was good to be met with that in the beginning. Once I started to know that there was a plan and it’s very treatable, I started to feel more positive, and then in turn, my family felt the same way.

As far as telling friends and other people, I was really nervous. I just didn’t want to inconvenience anybody or cause them to have a bad day. I was looking at people’s locations, like, Okay, are they at work? Are they at a friend’s house? I would text people and be like, “Hey, what are you doing?” And they’re like, “I’m just working. Why? What’s going on?” And I was like, “Oh, nothing. Just, you know, I have a funny story to tell you, but just let me know what you’re doing later.”

No one tells you how to break bad news to somebody else. I tried to make light in a lot of the ways that I told people. I’d be like, “Turns out I have cancer.” And my friends are like, “What? Wait, what did you just say?” And I’m like, “Yeah, I know, crazy, right?” Probably not the best way to do it, looking back, but you don’t know what to do. I had never had anybody personally break that news to me about them. I just really had no way to know how I should go about it. So, typical me, I tried to make it a lighthearted thing. Telling people was hard for sure. But once I started to, I felt like it really just helped me know how many people were on my team. And it was even further reinforced. Okay, I can do this. Like, there is nothing that I can’t handle with this village backing me.

It makes people feel better, too, if they have some facts, some information they can kind of hold on to. I had people who I knew were going to start Googling, and they’d end up on WebMD. I’m like, “This is what I know. Don’t Google it because it sounds scarier on Google than what the doctors told me. If you have questions, ask me, and I’ll make sure we address any concerns. Don’t go on Google.”

Understanding stage 4 DLBCL: the candle analogy

Initially, when I told my husband, he was terrified. The word cancer — he was like, “You’re going to die. This is the end of everything. This is the worst news.” I was like, “Okay, wait, let’s get some more information. We don’t know anything yet.”

We met with the doctor. Initially, it was before the PET scan. He did blood work and an initial exam, and he was like, “You’re not symptomatic. Your blood work looks really good. I think it’s probably stage 1 or stage 2. We’ll get your PET scan next Friday, and then you’ll come back and meet with me again, and we’ll get a plan.” He told me that he would not call me unless it was bad news.

I was the only one who knew that if he called, it was going to be bad news. Nobody else knew that. I was by myself that day because I had a PET scan, so I couldn’t be around my children. My husband’s taking them out to keep them away from my radioactive self. I get a call while I’m in the shower. I miss it, of course. It’s my doctor. He leaves me a voicemail, and he’s like, “Hey, give me a call back. I want to talk to you about your PET scan results.” I was like, Oh, crap. I immediately called back, and it was after 5:00. I don’t get him. I’m like, Oh my gosh, I’m gonna have to wait till Monday to know. I was trying to talk myself into… maybe he just wanted to tell me, “Stage 1, like you’re good.” But I knew he had said, “If I call, it’s probably just because it’s a little bit more serious.”

On Monday, a scheduler called me first, and they were like, “We’re going to move your appointment from Tuesday to Thursday.” I was like, “Why?” She said, “Well, insurance hasn’t approved your treatment yet.” I was like, “My treatment? I’m just supposed to meet with the doctor.” She was like, “No, no, no, you’re starting infusions on Thursday.” I was like, “Wait, what? What are you talking about?” She was like, “I think Dr. Lopez is going to call you soon.”

He called me shortly after, and he was like, “Hey, I just want to let you know. The PET scan came back. It is stage 4.” And he was like, “But blood cancer is different from tumor cancer.” He immediately told me that information. For anyone that doesn’t know, when you hear stage 4 lung cancer, that’s very different from lymphoma stage 4. That just means that there are lymph nodes that have the active cancer in them on both sides of the diaphragm. That’s stage 3. Stage 4 is also in somewhere other than a lymph node. I had a spot on my mediastinum and also a spot in my breast, which were not lymph nodes, and then a spot behind my abdomen.

He told me that, and he said, “The treatment changes only slightly. There’s one different chemo that we use from 1 and 2 to 3 and 4. The prognosis is still really good, almost the same. It hardly changes.” I had that information right away. I was like, “Okay, so this is different.” I tell my family, and they’re all still like, “Stage 4…” And I’m like, “No, no, no, listen.”

I tried to give the analogy — I just made this analogy up — and then I told my doctor, and he was like, “That’s actually really good. I’m going to use that.” I told my husband, “Think about a candle on a table, and you pour a bucket of water on the candle. The candle is going to go out. Now you fill the whole table with candles, and you pour the same bucket onto the table with multiple candles. All those candles are still going to go out. That’s kind of how the treatment is working. The chemo is going to go to all of the cancer just as efficiently as it would to one spot, stage 1, stage 2.”

He was like, “Okay, it makes me feel a little bit better.” Being super informed right away did kind of make that feel better. But it still did feel like, Oof, it’s kind of a little bit scarier than what we thought it was going to be. It just kind of felt like things kept happening like that, where we were like, Okay, we think it might just be this. And then it was like, Actually, it’s this. But we are still positive. We’re still hopeful. Treatment’s still going to be really good. I’m thankful that my doctor has the personality that he does. I told him from the get-go, “I am a hypochondriac and medically anxious, so you’re gonna have to give me all the information. You’re going to have to give it to me straight. No beating around the bush. No softening things. I want to know everything.” He was like, “Okay, sounds good.” And he has done that throughout.

Coping with hair loss and finding confidence

If you had told me, probably a year ago, that I was going to lose all my hair, I probably would have absolutely lost it, freaked out, just because it’s all I’ve always had. The long blond hair. It’s kind of been like, if someone didn’t know me, they would say, “Oh, the girl over there with the long blond hair.” You see me in a supermarket, you know it’s me for sure.

The doctor told me the first time we met that chemo was the treatment for lymphoma, no matter what stage, and that I would lose my hair because of one of the chemos. That’s just what it does. The “Red Devil” — I can’t remember the proper name for it at the moment. “That’s one of your chemos, and you will for sure lose your hair.” I asked him about cold capping, and he said, “You can do it. It’s not super successful. It’s not super great for lymphoma, especially with the breast presentation.” I had a higher likelihood of central nervous system involvement. So there was a treatment that needed to go all the way through, the whole body. He said it extends treatment, and it’s really expensive, not covered by insurance. I was like, “Okay, that’s fine, no worries.”

I was prepping myself from the very beginning, but something that actually helped me be okay with the fact that I was going to lose my hair — a lot more so than I thought I would have been — I watched The Great British Baking Show. Have you ever watched that? This season, the winner had alopecia, and she was open about that throughout the show. So she’s bald as well, doesn’t wear wigs or anything. She talked about that early on in the season. She said she used to wear wigs, and she doesn’t anymore. She’s really found her own style, confidence, and beauty. She was a med student on this baking show. Really successful, really good. I was just like, Okay, she has found the confidence to do this, and she looks wonderful. She’s unique, and she’s rocking it. Watching her prepped me. I was like, “If Jasmine can do it, I can do it.”

I was still a little emotional when I cut my hair because it’s always been really long. It’s really short. I don’t think it’s been that short since I was a little kid, and it was growing from my head for the first time. Shaving it obviously was a little emotional. My husband was shaving it, and he was like, “I’ve never seen your scalp.” And I was like, “I’ve never seen my scalp.” I was born with more hair than this. So it definitely was shocking and emotional. Sometimes I still forget that I don’t have hair, and I’ll see myself, and I’m like, Whoa, that’s me. I’m bald.

People are really kind about it and tell me, “You have a smooth head, like that looks pretty good.” Sometimes little kids will look at me, and I can tell they’re like, What’s going on there? And I just smile at them. I know that they just don’t know any different. It doesn’t bother me. It is a reminder for sure that I don’t have hair anymore. Making jokes out of it as well helps. I don’t know if you saw that video, just me being silly. But it definitely has helped me process losing it. I have a wig too, which I can wear sometimes. That was gifted to me by a really good friend. I’m thankful to have been prepped and to have different ways to make me feel best in my body, how it is right now, and to feel confident if I need them.

Parenting through cancer: navigating my diagnosis with my kids

My two-and-a-half-year-old would always play with my hair when I would hold him. He does the same thing with his own hair. He’ll play with it as he falls asleep. It’s always how we know that he’s getting tired. But when I would hold him, he would play with my hair and just kind of pull it and take the really long piece. He loved to brush it. He thought that was the most fun thing ever. So we were really nervous that he was going to look at me like, Oh my gosh, who is that?

We let him watch. He was with my parents. Both my kids were there when my husband shaved it. And when I cut it too, I thought, Oh no, he’s not gonna like that. Big change. And I think his response was, “Oh, mommy, you look cute.” He’s just the sweetest thing ever. Everyone was there. He got to see it being cut. I think that helped him to be like, Okay, I see it actually falling off. Mom’s getting a haircut. It put things in place for him.

When we actually shaved it, he was with my parents, and I put a hat on after it was done. So when he saw me for the first time, it wasn’t just a stark difference. Then he kind of noticed. He was like, “Mommy, where’s your hair?” I said, “Oh, well, buddy, I’m taking some medicine. And it made it all fall out.” He was like, “What? Where is it?” And I said, “It’s in the trash.” And he was like, “Oh, is it going to come back?” I was like, “Someday. Yes.” He said, “Can I see?” I was like, “Okay, sure.” I took the hat off, and I said, “Do you want to touch my head?” He was like, “Yeah.” And he just kind of rubbed. I was like, “Isn’t that so silly?” He was like, “Yeah.” And then that was it.

He didn’t talk about it anymore until I got a wig. I came home with a wig on, and he goes, “Are you a different mommy?” I was like, “No, the same mommy, just different hair.” He was like, “Your hair came back.” I said, “No, buddy, it’s a wig.” I took it off and showed him, and he said, “Oh, so pretty.” Anytime I put the wig on and come out, “Oh, mommy, you look so cute.” He has handled it beautifully. Better than I could have ever imagined. We were really nervous about that. One of my friends is a child life specialist, and she was like, “I need to talk to him. If there’s anything you want me to explain to him or talk to him about, let me know.” I was like, “Yeah, we might need to do that, especially with this big physical change that he can see because he can’t tell otherwise that something’s going on with me.” But no, he handled that great.

My youngest… I think he looked at me kind of funny the first time. Then I smiled at him, and it was like, Okay, that’s it. We’re good. Same mom. My wig is a little darker than my natural hair, so I’m sure he was like, Oh, there you are. That’s what I think when I smile, they’re like, Those are my mom’s teeth. All right. Cool.

There is some sweetness to it because it is a good distraction all the time. Anytime I’m feeling down about what’s going on, I have a great reminder of happiness and joy and lightness. Kids keep things so upbeat, and they kind of keep you busy enough that a lot of times you’re not really thinking about it anyway. But there have been some moments where I have just compared my experience with my youngest this time to my experience with my oldest. I didn’t have anything taking me away from being a mom to a newborn or to an infant before. Now I’ve stayed away from them longer than I ever have before. I had to stop my breastfeeding experience because of chemo. I’ve had to do bottles, and that’s been really different.

My husband has been really great about taking things on. He said, “I hate that this is why we’re doing this. But I’m really thankful that I’ve gotten an attachment to our youngest, Shepherd, so much earlier than Harrison, our older son. He was so much more attached to you for so much longer.” I’ve kind of had a different experience with him, which has been really cool for me. And then my experience has given me some independence sooner than I would have had with my oldest. So there’s been some goodness to the hard as well.

I had to stop thinking, Oh, I’ll be so glad when treatment is over. I’ll be so glad when I’m on the other side of this. If I can just get to being cancer-free, then I can start enjoying life again. I was thinking about that. I was like, Okay, so that’ll be next May or June if we stay on track with everything. I have a one-year-old and a three-year-old. I will have wished away the whole first year of my youngest son’s life. So again, they are really keeping me in that mindset of I still need to enjoy every single day, despite the hard stuff.

There are days when I’m tired and anxious, and I need to just kind of step away and take a moment. Luckily, I have a support system to be able to do so. But most of the time it’s a reframe. It’s just this constant flipping in my mind of feeling the anxiety, feeling the sadness from it, but then remembering, Look what you have right in front of you. Don’t let these other things that are going on take over the good parts of life that are happening right now, too. My husband even said at one point, “I hate that this is happening, but why did it have to happen when we have small children?” I was thinking the same. Why couldn’t it have happened before we had kids? And then I was like, Well, you know, now that I say that though, they make every day so much better, no matter how I’m feeling. Maybe if this was going to happen — of course, again, thank God it’s happening at this time because I do have these constant little smiles at me all the time. You can’t be upset when these little faces are smiling back at you. It’s been different, but so good to be able to have this experience and to be able to treasure them even more. Once you hear those words, cancer, you’re looking at things so differently.

Finding silver linings in adversity

For sure, getting out of the house with both of them helps. Even when I am feeling really tired, leaving the house helps with that a lot. Having family so close is really helpful, even just to get in a different space with another person, with the kids. It’s like, Okay, I’m remembering that we can be normal while these things are happening, too. My husband can be home anytime I am not feeling well. That’s really helpful too, to be able to know that I have certain days where if I need extra rest, I can take it. But for the most part, it’s like, Okay, this is my sweet spot to be with them.

I think prepping for the holidays, whether it be Halloween, Thanksgiving, or Christmas, has really helped as well to have those moments. I want to make this really magical for them. I want to make things exciting and happy for them. Filming my experience and sharing that has been really helpful, too, to just kind of talk about it to make it less scary for other people. I know it can be really daunting. Before I had my first PET scan, I was like, Oh, that sounds terrifying. I’m going to be in one of those little tubes and being enclosed. Things just seem so much more daunting when you don’t know anything about them. So that’s been really helpful too, to have that outlet. I’ve had so many people say things back to me like encouragement and say that, “I was just diagnosed and watching your videos, I hope that I can stay positive as well. Thank you for sharing. You gave me the courage to go and get something checked out.” Even though I have little kids, just things like that… just little reminders that when I am feeling positive and happy and absorbing those moments, it really is making a difference.

I think I gave you the little phrase, “There’s nothing that I can’t handle.” I think that I have learned that over this amount of time because I think I downplay who I am and what I do a lot of the time. Oh, I’m just a mom. Oh, I don’t work. I just stay home. Or I just help my husband with his business. I think dealing with something like this and just thinking, Okay, this is what happened. I’m going to face it head-on and keep being positive. I didn’t realize that I was doing something kind of different here or that I was taking such a positive take on it. When I first heard about cancer and realized what kind it was and how treatable it was, I was like, Okay, there are so many people dealing with heavier things. Things could be so much worse. I think I try to always look at things like that anyway.

Even after my first chemo, I didn’t feel super bad afterward. I was tired, but I was thinking, Okay, that was pretty smooth. I can do this for sure. But then I had friends and family members being like, “You have cancer. Like, this is a big deal.” Not everyone will experience that. I remember my husband telling me that after I had a C-section, he was like, “You are a lot tougher than you give yourself credit for, mentally, physically.” I’m a small, petite woman. I’m not super muscular or strong or anything like that. I don’t think of myself as tough. But I have realized, especially in the past few months, that I am pretty tough and there is a lot that I can take and a lot that I can handle. If I can go through this, there’s absolutely nothing that I can’t handle past that, which is a good reminder.

Sometimes it’s the little things in life that get to you, and then a big thing happens and kind of gives you perspective on, Okay, why did I get so upset in traffic? Or why did I let that sleepless night with my kids make me have a bad day the next day? That’s nothing. I faced this, now everything else seems so small. I’m really grateful to have that perspective now. I’m more resilient than I thought. I hate for anybody to have that tested with adversity, but I feel like that’s the only way you really know how strong you are, is for your strength to be put to the test.

I’ve learned how much people care about me, which is a really unique thing to get to actually hear from people. Once I was diagnosed and started sharing my experience, people reached out. I had a teacher that I had in high school reach out and tell me, “You were always one of the most positive students that I’ve had.” It’s really cool to be able to hear what people think about you. It’s kind of reminded me to do the same for others. If you feel like you want to tell somebody something about what they mean to you, do it, because you never know how it will make them feel.

Looking to the future: one day at a time

That was hard for me, and I felt that was going to be the hardest part: to think about things a few months out or even to think about life after cancer. I feel like I’m always going to be thinking, Is it back? Is something else going on? But I’ve heard a lot of people who have also had cancer or dealt with a large adversity: take it a day at a time. And I think that is the best advice that you could receive. Take it a day at a time, and when you take it a day at a time, it allows you to be more present in that day because you’re not thinking about the future.

So that’s really just a day at a time — sometimes a week at a time, if I know what’s going to happen a week from now. But I try not to push too far forward because I feel like I can kind of get a little bit too in my head if I think about the hospital days that are coming up, or if I try to just digest everything that’s going to happen. But if I take it a day at a time, I mean, I can handle that for sure. One, just one little day at a time. No big deal.

Advice for patients and loved ones

For anyone going through something similar or anyone loving someone who is going through something similar, there are no dumb questions. Getting a second opinion is great. Lean on people who love you and whom you trust. And if you are someone loving someone else going through something like that, show up and be present and show people that you care, even if you feel awkward or if you don’t know what to say. You don’t have to say anything. Just being there is so special and helps people know that they can do anything and they can handle anything.


Anna M. DLBCL
Thank you for sharing your story, Anna!

Inspired by Anna's story?

Share your story, too!


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Anna M. DLBCL

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Ashley P. stage 4 DLBCL

Ashley P., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Feeling like holding breath when bending down or picking up objects from the floor, waking abruptly at night feeling “off,” one episode of fainting (syncope), presence of a large mass in the breast


Treatments: Chemotherapy, bridge therapy of chemotherapy and radiation, CAR T-cell therapy
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Melissa B., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL)



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Treatments: Chemotherapy (R-EPOCH), Neulasta, radiation therapy, surgery (to remove scar tissue and necrosis), autologous stem cell transplant
Jen N. stage 4B DLBCL

Jen N., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4B



Symptoms: Blood-tinged phlegm, whole-body itching, shortness of breath, lump near collarbone, night sweats, upper body swelling, rapid weight loss

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Cardia Cancer Esophagectomy Metastatic Partial gastrectomy Patient Stories Stomach Cancer Surgery Treatments

Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Cardia cancer, a rare and aggressive cancer at the junction of the stomach and esophagus, fundamentally changed Luwen’s day-to-day life, career aspirations, and connection to her body and community. Diagnosed in Paris in December 2024 after months of misattributed symptoms, her experience reveals the often-overlooked complexity and adversity surrounding late-stage cancer diagnosis.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Immediately preceding her diagnosis, Luwen balanced the challenge of beginning her career in theater with daunting physical symptoms, including persistent back pain, chest burning, and a profound sense of unease. As her symptoms intensified, she underwent multiple consultations and procedures. The French healthcare system posed its own hurdles, involving both public and private pathways, and required out-of-pocket payments until her diagnosis of cardia cancer, a kind of stomach cancer, categorized her illness as a long-term condition eligible for government coverage.

Luwen S. cardia cancer

The emotional toll of stage 4 cardia cancer was magnified by isolation, as Luwen navigated both the diagnostic process and her mother’s concurrent battle with breast cancer, while extended family remained abroad. Self-advocacy proved essential; despite repeated dismissals from medical professionals and friends attributing her symptoms to stress, she persisted, ultimately insisting on crucial tests that revealed the true nature of her illness.

Treatment transformed every aspect of Luwen’s life. Eight months of chemotherapy and immunotherapy followed by a major surgical resection altered her physical relationship with food and her body, requiring new dietary habits and a lasting regimen of medication. The physical challenges were matched by emotional transformation; what mattered shifted from professional achievement to peace and well-being.

For others living through stage 4 cardia cancer, Luwen’s story offers important lessons: trust in oneself as the expert of one’s body, the necessity of persistence within medical systems, and the possibility of redefining one’s priorities after illness. Her experience is a testament to the power of self-advocacy and adaptability, and to the meaningful changes that can result from even the most difficult diagnoses.

Watch Luwen’s video above and read through her edited interview transcript below. Both will provide insights into why and how:

  • Advocacy matters: being persistent to get the correct diagnosis is vital, especially when symptoms are minimized
  • You are the real expert on symptoms; trust yourself when you know something’s wrong
  • Major illness like cancer often forces patients to reconsider what matters most in life
  • Support networks such as family, friends, and therapists, help patients endure treatment and uncertainty
  • Transformation is possible: Luwen’s priorities shifted toward peace, self-care, and authentic living

  • Name: Luwen S.
  • Diagnosis:
    • Cardia Cancer
  • Age at Diagnosis:
    • 25
  • Staging:
    • Stage 4
  • Symptoms:
    • Backaches
    • Heartburn and acid reflux resulting in vomiting bile
    • Fainting spell after eating
    • Fatigue
    • Inability to swallow
  • Treatments:
    • Chemotherapy
    • Immunotherapy
    • Surgeries: esophagectomy, partial gastrectomy
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia 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.



My name is Luwen

I was diagnosed in December 2024 with stage 4 cardia cancer. The cardia is basically the junction between the esophagus and the stomach. I was diagnosed in Paris, and I live in Paris.

I had just finished university and was getting my first job in theater. I’ve always had an interest in theater, and I was really happy because I was working on this big production. I remember it because my cancer basically started to grow at the same time that I got my job. So, during the summer of 2024, I was very stressed. I was trying to find a job after my internship and couldn’t find one. As I interviewed for many positions and eventually got the job I wanted, my symptoms worsened.

Alongside this, my family lived in China, and my mother was diagnosed with breast cancer in November, a month before my own diagnosis. I did a lot of back-and-forth travel between China and France, while my grandparents lived in America, so I was used to traveling. But, yeah, that was pretty much my life before I got cancer.

My initial symptoms

It was really strange because I started with back pain. Basically, I had metastasis along the spine, and those were my first symptoms in the summer of 2024. It started in June. I remember this because I was at a Buddhist retreat, sitting cross-legged all day for a week, so I thought it was the retreat that had caused the pain. I started to take ibuprofen and paracetamol, hoping to ease the pain, but it didn’t help.

In August, I developed chest burn, which I didn’t know was acid reflux at the time, and which I later learned to name. That was my mistake: I called it acid reflux, so the doctors just stuck with that diagnosis, saying there was nothing else wrong. I was misdiagnosed for six months, going from doctor to doctor, always being told I had nothing. All the while, my back pain and chest burn continued to worsen.

I remember once in September, it was the first real alarm in my head. I woke from a dream where I was on a sterilized hospital table, doctors trying to get something out of my stomach, and they couldn’t. I woke up to realize the pain wasn’t a dream; it was very real. That’s when I realized I really needed to see a gastroenterologist, but the first one I saw was really bad and misdiagnosed me.

Navigating the French healthcare system

In France, you typically have a primary physician. I saw mine at the end of August, after I’d started my new job and when my symptoms had worsened. One night, I had a really bad hunger pain in my stomach, and I knew that eating would ease it. So, I went to eat, then fainted, which had never happened to me before. I was lucky I didn’t hurt myself.

After that, I saw my primary care doctor, who said I needed a physiotherapist for my back, and that the chest burn (acid reflux) could wait until November for a gastroenterologist appointment. So, I started physiotherapy, which didn’t help. In September, after continuing to wake in pain, I realized I couldn’t wait any longer.

France has an app for scheduling doctor appointments, but it’s hard to know which doctors are good; you have to check reviews online or hear about them through friends. No one around me knew a reputable gastroenterologist, so I chose from the limited, less-recommended options available on short notice. Appointments with specialists are particularly hard to get.

There’s public healthcare, where you don’t pay out of pocket, and private practitioners, who set their own rates. I paid my private gastroenterologist €80 per visit, three times total during this process. I also returned to my primary care doctor about ten times in three or four months, but he couldn’t figure out what was wrong. I underwent many scans and imaging, some of which I had to pay for, depending on whether it was public or private healthcare.

I was really lucky that after my diagnosis, everything switched to 100% public healthcare. I didn’t have to pay for my treatment. But during the diagnosis period, I spent about €2,000 to €3,000 on doctors and scans. In France, once you’re categorized as having a long-term disease, anything related to it is covered by the government. So, after diagnosis, cancer care was paid for.

I processed everything while I was alone

You have to keep in mind that I was alone in Paris. My parents were in China, and my grandparents were in America. 

I was navigating all of this by myself, getting more stressed with my job, when I got the news that my mother was also sick. It was a lot to process alone.

It was weird, trying to get an answer while everyone around me kept saying, “You’re insane, you’re making this up, it’s just stress.” I heard that so many times that eventually, I began to believe it myself, despite knowing deep down it was more than stress. 

I even started doubting my own symptoms because of all the repeated dismissals from those around me.

My body broke down, and I doubted myself

At work, my boss was running a show and an exhibition, and I was supposed to go to Marseille for two weeks for my job. I stayed for just two days before my body gave out. 

I had driven myself to the breaking point. Everything happened so quickly that, only in January, right before starting treatment and after returning from Christmas holidays, did I realize just how hard this all had been to take on alone.

I don’t think I trust the health system. Even though I am cured, thankfully, it’s hard for me to see a doctor and believe they are telling me the whole truth or getting to the root cause. In my case, my gastroenterologist just treated the symptoms (acid reflux) with omeprazole, which masked the symptoms and delayed realizing the underlying (cancer) problem.

My persistence led to second opinions and the key endoscopy

When my body finally broke down, I was sent back to Paris and put on sick leave. That week, I saw about four gastroenterologists, but for some reason, none wanted to give me an endoscopy. I had known since October that I needed one, but I wasn’t taken seriously.

I finally texted a friend, who knew a really good private gastroenterologist. I emailed him all my symptoms on a Sunday night and was lucky; he let me come in the next day. I decided I wouldn’t leave without an endoscopy scheduled. I had to exaggerate my symptoms, saying I couldn’t swallow water or eat (even though I could still drink), just to be taken seriously.

At my endoscopy, the doctor said, “Don’t worry, it’s probably nothing; we’ll just give you more omeprazole.” I insisted that omeprazole hadn’t helped me. He told me he’d call after the procedure to say everything was fine, but when I woke up, he was there in person. He said, “Do you have a minute? I have bad news for you.”

Later, he returned to my room and told me, “You have a lesion; it also has an ulcer, and it might be cancerous.” That was the first time I heard the word cancer regarding myself. I felt so relieved: “Oh my God, I’m not crazy. I’m not making things up.”

From there, everything moved very quickly. Doctors aren’t technically allowed to tell you outright that you have cancer, so he just said, “It might be cancerous.” But he made sure all tests happened within a week, which is rare for the French system. My endoscopy was on December 5th; my first meeting with my oncologist was on December 16th. The weekend before that, my friend from the UK came to stay with me because I was so stressed.

When I was finally able to process information, I realized how serious this was: scans, blood tests, a glowing spot in my stomach. I didn’t even know what cardia was until I looked it up. Everything fell into place piece by piece.

My treatment experience

It got quite bad before I began treatment. I was in constant pain, couldn’t eat or drink, and was losing weight week by week. I don’t like to say I stared death in the face, but it did feel close. During this time, after my diagnosis and before starting treatment, I returned to China to be with my mother, who had just started her own breast cancer treatment.

Having my mother go through chemo ahead of me meant I had someone who understood each step. I knew how to pack a chemo bag, what to expect, and how symptoms might develop. I was relieved to learn I wouldn’t lose my hair.

My first chemo was the worst. I was so sick I could barely get out of bed; I was overcome with nausea. Fortunately, my body responded well to immunotherapy. By the second chemo, I could almost eat normally again. By the third, I had regained some strength; by the fourth, scans showed the metastasis in my spine was completely gone. I had chemo and immunotherapy for eight months, and the cancer was gone in six months.

I had surgery, and how I recovered from it

After eight months of chemo, I was cancer-free, but we weren’t sure it was totally gone. Surgery (esophagectomy) was needed to remove the cardia and ensure there were negative margins. This meant removing most of my esophagus and a third of my stomach. 

Now, my stomach is higher, and I don’t have an esophagus. Food falls directly into my stomach and then into my intestines.

Learning how to eat after that is difficult. I had surgery on September 8th, and as of now, I’m still recovering. I’ve lost about 10 kilos (~22 lbs). Eating requires extra care; monitoring oil, sugar, and food quantities to avoid dumping syndrome, which causes stomach pain, nausea, and diarrhea when food moves too fast into the small intestine.

Despite losing weight and always having had a sweet tooth, I have to be careful now. The way my body processes food has changed, requiring lifelong meds for acid reflux. It’s challenging, but it pushes me to adopt healthier habits. My life, needs, and desires have all changed.

Moving forward, and my new priorities

Cancer has taken away a lot, but weirdly, it has given me a lot too. 

I used to work as a theater producer, but lost the desire to continue due to the stress and ego management. What I want now is to be happy, peaceful, and healthy. It’s no longer about pleasing others; it’s about making myself feel good and putting myself first.

I am not on maintenance therapy; all treatment ended before my surgery. Now, I just get regular scans every three months, then every five, then yearly. 

It is behind me in the sense that I don’t want to think about it, but surveillance and the reality of stage 4 cancer mean you never quite feel “cured.” 

My biggest fear today is that what comes back could be worse: pancreatic, stomach, or lung cancer. The word “cancer” will always be a part of my life now.

How I coped with the hardest moments

During treatment, I often lost my mind. My mother came back to France to care for me while she was ill, and I cared for her too. Once, she had a kidney failure episode, and I rushed her to the emergency room; if I’d been 20 minutes later, she could have died. That was on Mother’s Day.

What got me through was calling my best friend to cry and having therapy. I was surrounded by personal and healthcare therapists. 

Ultimately, it was the mentality of, “I don’t get a choice; I just have to keep going. You can cry all you want, but you have to do the next round of chemo.” 

I was lucky that my treatment worked, which made it a little easier to endure.

Lessons for young cancer patients

I was 25 when diagnosed. Having cancer at a young age is often dismissed; people expect youth and health to go together. Being young and female, women’s pain is often minimized, so I had to exaggerate symptoms to be taken seriously. My oncologist told me, “You’re lucky; apart from the cancer, you are otherwise very healthy because you are young.”

Most patients I saw during chemo were in their forties or older. But statistics show more young people getting cancer, even if it’s still rare. The main thing I would tell other young people: you know your body best. If you know something is wrong, trust yourself. 

Cancer taught me how to advocate for myself, how to say, “No, you are wrong; I am in pain.” If a doctor doesn’t listen, see someone else until you get an answer that satisfies you.

I didn’t really connect with any other young people with cancer at the same time. I mostly navigated it by myself, though I had friends, family, and a lot of therapists in my life. Illness sheds false friendships, but it also brings new, real ones closer.

Healing, recovery, and looking forward

Words like “recovery” and “healing” have new meaning for me now; they exist where before they didn’t. 

When you’re young, you’re focused on chasing the next thing; when you fall off that hamster wheel, you realize you must learn a new way forward, and it isn’t just about health. It’s about building a life again after illness.

I hope I get to do the job I want; publishing and writing, maybe publishing a book someday. I pay more attention now to health, food, and exercise. It’s scary to start over, but exciting. There are so many new opportunities and people to meet.

Statistics were not on my side. My oncologist told me that if immunotherapy hadn’t been available, I would have had only 4-6 months to live. That made me realize how far medicine has come. I really did beat the odds. 

Still, I feel I’m on borrowed time and need to enjoy it fully while I have it.

My final reflections

I survived; long story short, I survived. It was not easy, and I’m very tired. 

I tell my best friend that if cancer does return, I’m not sure I want to fight it again, but we’ll see when we get there. 

Hopefully, I will never have cancer again.


Luwen S. cardia cancer
Thank you for sharing your story, Luwen!

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Share your story, too!


Andy G. stomach cancer

Andy G., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Stomach pain, back pain, chest pain, extreme exhaustion, shortness of breath after short walks

Treatments: Chemotherapy, immunotherapy
...
Alyssa B. feature profile

Alyssa B., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatments: Chemotherapy, immunotherapy, surgeries (total gastrectomy; partial esophagus removal; bilateral oophorectomy and fallopian tube removal), clinical trial
...

Brittany D., Stomach Cancer, Stage T1b



Symptoms: Choking suddenly while eating and attempting to speak, neck and right shoulder pain, neck tightness, trouble swallowing certain food items

Treatments: Surgeries (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)
...
Camilla C. stage 4 stomach cancer

Camilla C., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Issues swallowing, swollen gland in the neck

Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods

...
Emily D. stage 4 stomach cancer

Emily D., Stomach Cancer (Gastric Adenocarcinoma), Stage 4 (Metastatic)



Symptoms: Persistent postpartum stomachache, early satiety, difficulty swallowing, vomiting

Treatments: Chemotherapy, immunotherapy

...
Alyssa B. hospice update

Alyssa B., Stomach Cancer, Stage 4 (Metastatic) (Hospice Update)



Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatments: Chemotherapy, immunotherapy, surgeries (total gastrectomy; partial esophagus removal; bilateral oophorectomy and fallopian tube removal), clinical trial
...

Categories
Chemotherapy Colostomy Hormone replacement therapy Hysterectomy Lymphadenectomy Patient Stories Proctectomy Radiation Therapy Surgery Total pelvic exenteration Treatments Vulvar Cancer

Carly’s Stage 3 Vulvar Cancer Story

“Cancer Can’t Take Your Mind”: Carly’s Rare Vulvar Cancer Story

Carly was diagnosed with stage 3 vulvar cancer in 2014 and experienced a recurrence three years later. Throughout her experience, she faced an array of medical and personal challenges, including persistent and increasing pain, loss of fertility due to aggressive radiation, and two and a half years of bladder and bowel control issues. 

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Carly’s vulvar cancer experience had an impact beyond the physical part: she had to make hard decisions about parenthood, confronted the stigma associated with “below the belt” cancers, and redefined what recovery looks like. She describes her acceptance of a colostomy bag not as defeat, but as a means to regain quality of life and independence. Supportive doctors and care teams gave her vital emotional and practical care at each stage.

Carly A. vulvar cancer

Transformation and advocacy are at the heart of Carly’s experience with this rare cancer. Early on, she coped by shielding loved ones from her pain; later on, she empowered others by sharing her journey on social media and at patient conferences. By communicating openly and honestly, she not only helped break stigmas around gynecologic cancers, but also helped many others accept the realities and possibilities of life after the major surgeries she underwent, namely lymphadenectomy, hysterectomy, total pelvic exenteration, protectomy, and colostomy, as well as chemotherapy and radiation therapy. Her story shows that no one should feel shame about their diagnosis or condition, and that making connections through shared stories is vital to emotional healing.

Today, Carly continues regular monitoring and discusses the practical aspects of living with vulvar cancer, including managing pain, organizing support systems, and focusing on self-compassion and legacy. Her resilience and advocacy offer reassurance and guidance to all those navigating similar paths.

Watch Carly’s video for more about how:

  • Finding personal advocacy can help patients navigate difficult and rare diagnoses like vulvar cancer
  • “Below the belt” cancers carry a unique stigma, making open conversations and connection essential
  • Acceptance and adaptation can restore quality of life, even after major treatment
  • No one should feel shame about their diagnosis
  • Proactive symptom awareness and self-advocacy help ensure timely diagnosis and care

  • Name: Carly A.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Vulvar Cancer
  • Staging:
    • Stage 3
  • Symptom:
    • Intensifying pain in the pelvic area
  • Treatments:
    • Surgeries: lymphadenectomy, hysterectomy, total pelvic exenteration, proctectomy, colostomy
    • Chemotherapy
    • Radiation therapy
    • Hormone replacement therapy
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar cancer
Carly A. vulvar 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.



My name is Carly

I am a two-time stage 3 vulvar cancer survivor. I was first diagnosed in 2014, and my recurrence was diagnosed in 2017. I live in the Greater Vancouver area in Canada.

Since I was a young girl, I have been a sports enthusiast. I was the firstborn, and my dad loved hockey and football. He would take me to hockey and football games as a young girl, and that’s just come with me into adulthood. On a Sunday, Thursday, or Monday, the nights that sports are on television, you will either see me at a game or in my living room watching some sort of athletic game. Go, Birds. Go, Canucks! Those are my two teams. 

I am not a mother, but I love animals, photography, entertaining, and having friends around me. That kind of vibe is always in my house. Doors are open for anybody who wants to come over.

What 11 years of my life have been like with a rare cancer

Tough. In one word, really tough. 

I had heard of people having cancer before being diagnosed, but nobody in my family had gone through a major battle. When mine was diagnosed, and I found out how extreme and scary it was going to be to try to save my life, I didn’t really have anyone to look up to. So it was just really hard. 

I think it was hard on my family and my friends, too. I often shielded them from some of the pain I was going through because I was more concerned about their feelings than my own most of the time. 

I tried to put on a really tough exterior. Early on, I said to myself, “Listen, cancer is going to change your body for the rest of your life if you survive. But I told myself, “Cancer may take your body, but it’s not going to take your mind.” I stuck to that. 

It doesn’t mean I didn’t have days of darkness. I moved on from those emotions quickly because I didn’t have it in me to mentally and physically be down in the dumps. I wore lipstick to treatment because I love lipstick; anything I could do to give myself a little light in such a dark time.

My first symptoms

There was nothing extreme in my vulvar cancer case. Unlike certain cancers where people lose weight quickly or their skin gets pale, for me, it wasn’t like that. I had pain; that was basically the way I was first alerted, because my cancer was in my vulva. 

It’s not something you see every day, like your breast or your arms. It wasn’t something I was regularly checking on my own. When I started to have pain, it kind of felt like I was sitting on a pebble, then a rock, then a golf ball. It got to the point that I thought, “This is not going away.” 

In the early 2000s, I had Bartholin gland cysts, which is a drainage problem; you have to have surgery, and they do something called marsupialization, turning the gland inside out. So, I just thought I had another cyst, but it was larger and wasn’t going away. I went to the emergency room, and people just said, ‘Oh yeah, it’s probably a cyst, here’s some medication.’

But there was no confirming it was a cyst. The pain just got worse and worse. My family doctor put in a referral, but it took time. More ER visits, but still nobody found out what was wrong. I called in sick to work. I was in extreme pain; standing or sitting was agonizing. 

Finally, I saw a gynecologist who said, ‘I’m not trying to scare you, but I think we need to take a biopsy. I think you have a tumor.’ She said that within five minutes of looking at me, whereas others had looked at me for almost a year and didn’t see it. That was on a Monday. The results came back Friday: it was vulvar cancer.

Learning how to self-advocate

I didn’t know how to advocate for myself then. Today I’d say, “Listen, doctor, we need to do ABC right now,” but back then, I just listened a little too much. 

At one point, a doctor said, “Maybe you have genital warts.: I knew that wasn’t the case; I got really frustrated. Once everything was confirmed by a woman who was about the same age as me, we both cried when she gave me the diagnosis. 

I told myself, “You, Carly, have been going through this for almost a year. You need to step up your game, make sure the next doctor you see doesn’t take you lightly. Ask more questions and take notes.’ That was the start of a big book with many chapters.

The moment everything changed

I was 38 at the time. I had just been at my cousin’s wedding the week before, and I couldn’t sit in the chair or stand in the photos; I was hunched over. 

Looking back, I was paler than usual. I look back at that photo and think, “Man, I looked pretty pasty.”

The doctors told me I had stage 3 vulvar cancer. They actually put my mother in a separate room, where another physician told her. Not being married and not having a partner to support you is different than having a parent. 

When my mom and I were reunited in the same room, the tears were flowing. We called my brother and father on speakerphone and told them, and everybody was just a mess. Everything was happening so fast because I was advanced stage.

That moment when mom and I were reunited still brings me to tears today. She was hearing about her daughter, her eldest child. I’m her only daughter, so I can be her favorite daughter. We were both dealing with very hard emotions. 

We’re both tough cookies, but it was a really hard moment I don’t think either of us will ever forget.

How I reacted to my rare cancer diagnosis

As much as we think we know our bodies, sometimes we don’t. I was like, ‘Vulva? What are you talking about?’ You think vagina, or clitoris; those are words you hear more often, not so much vulva. Especially since I had never had a child. I needed clarification.

I’ve learned a lot about the vulva over the years. Being so rare, I thought, “What did I do to myself?” I did not have HPV or any other disease that made this happen. 

We didn’t find out what caused it for a few years, which I can touch on later. At that time, I wondered, ‘Did I not go for my checkups soon enough? Did I sit in a perfumed bath?’ 

Ultimately, that was not what caused it.

My initial vulvar cancer treatment

I didn’t really know what vulvar cancer would look like for me. The only image I had was super frail, no hair, pale as a ghost. I had a friend who survived leukemia, but her cancer was so different. 

Immediately, I was in for some kind of scan. Soon after, I met with the oncology team; within a week, they told me I’d have chemotherapy and radiation, but more radiation because of the location. 

I underwent 39 pelvic radiation treatments. Before that, tattoo markers that looked like freckles were placed for the laser alignment on my hips. Five days a week of radiation, chemo once a week.

My chemo cocktail wasn’t as aggressive as some other types. My hair didn’t fall out, but it got very thin. I was in agony from treatments and the tumor, but looked kind of like everyone else. I struggled because people said, “Oh, you have stage 3 cancer? I had no idea.” I know they didn’t mean harm, but I had that image in my head, too.

I started saying, “Not all cancer is pink, because it’s not all pink. And pink is my favorite color, but… I would have, not that I would have loved breast cancer, but that would have been more up my alley than a purple. And cancer as a whole falls under the purple ribbon.”

The cancer went away, but came back

I did chemo and radiation, had about a month off, and then went to the pub with girlfriends, just to get out in the world again. My pelvis did not have a good time, but I needed to get out. 

A month later, I had surgery to remove what was left of the tumor.

Radiation took away my fertility. Not only was I told I have cancer, but that unless I chose to attempt to retrieve eggs immediately, I would lose the ability to have children. I had to decide within 24 hours. At 38, not being in a serious relationship, I accepted that parenthood was not in my path and mourned that loss.

After surgery, they didn’t get massive margins, which meant they couldn’t take enough tissue to be sure all the cancer was gone; otherwise, I would have lost more of my anatomy. So they watched and waited. I had a hole in my vulva needing hyperbaric treatment to heal, which helped.

I didn’t have good control of my bladder or bowels because the radiation was so aggressive. For two and a half years, I struggled with bladder and bowel control, wore adult diapers, and couldn’t work much or leave the house due to anxiety from fear of accidents. 

When the cancer was confirmed to have returned, one of the first things I asked was, “If you cut more and I lose things, does that mean I’m not going to soil myself anymore?” They said yes, and I would need a colostomy bag.

Life with a colostomy bag, surgery, and recovery

One of the biggest reasons I accepted the colostomy bag was that I never wanted to soil myself again. My quality of life before that was terrible. I had accidents at work all the time. They never got the margins, so the cancer came back. Because I had been treated so aggressively, they couldn’t repeat previous treatments. Instead, I needed pelvic exenteration surgery.

Basically, they cut me from bra line to bikini line; they opened me up “like Humpty Dumpty.” They did a complete hysterectomy, removed and closed my rectum, and placed my colostomy on my left side, connected to my sigmoid colon. I’ve had more epidurals than people have had babies.

When I woke up, I was covered in over 67 staples. Learning to walk again was incredibly difficult. My core was rebuilt, and I ended up with hernias later.

The mindset around my ostomy bag

The colostomy was not hard for me, because I used it as a shield. 

It’s much harder to talk about having a rebuilt vulva that’s very narrow and hard for intimacy, or about not having a rectum. We jokingly call it a ‘Barbie butt’ in the ostomy community. I still hide behind the bag, because it’s easier to talk about. Every year, I think about being more transparent about my vulva journey. The ostomy was the easiest thing for me. I’ve never really had any major mishaps, and when meeting people, I just get it out there: ‘I’m a cancer survivor and have a colostomy.’

When it comes to dating, my digestion is much the same as anyone’s, thanks to still having a colon. About two and a half years in, I learned I didn’t have to empty my colostomy; I just wear a closed pouch and replace it. In six years, I haven’t put stool in a toilet. I can’t just be intimate the way others can, and if I overdo things, my body tells me to rest.

She’s my crutch, but she’s my bag, and I love her. I name her Winnie, like Winnie the Pooh.

How social media helped me

Cancer made me a better person. Pre-cancer, I was self-conscious and worried too much about what others thought. Cancer forced me to fight. Not working for six years gave me time to know myself differently.

I took to social media. Instagram in 2014 wasn’t what it is today. I started sharing my story; my cousin helped me pick the handle “Ostomate and the City.” Over the years, I’ve built relationships and a strong community.

It’s easy to look at the ostomy bag and hate it, but we need to hate cancer, not the bag.

In August, I attended the United Ostomy Association of America conference. Women came up to me, saying that I had helped them. This journey has been a boomerang; someone helped me, and now I help others. If I just sat at home with my anxiety, I’d never be where I am today.

There was nothing I could do to change it. Accepting and carrying on really helped me get to where I am today.

Monitoring and living — not just surviving

After surgery in 2018, the doctors said they had done everything possible. 

Monitoring began monthly, then was spaced out to annually. Now, I go in once a year. 

My team is great; if I feel something’s wrong, they’ll get me in. My pattern is pain, so as long as I’m not in pain, I’m okay.

For a while, I lived in fear of cancer returning, but eventually tried to focus on just living. There’s living, and then there’s living. I’m not living some high-flying, traveling-everywhere lifestyle. I spend time with people I want to be around, and I’m okay spending time alone. My cat is snuggly.

I do get some anxiety in large crowds, preferring assigned seating. I choose who to be with and where to go. As a cancer survivor, you feel like you have to do everything, but I learned I only need to do what’s right for me. If I could be hit by a bus tomorrow, would my friends and family know what to do? I wrote a will before my 2018 surgery. I’m always organizing, trying to make sure that, if something happens, people can find what they need.

It’s easy for darkness to overtake us, but I’ve built support around myself. If something bothers me, I move on.

We’re never free of cancer because cancer has changed us emotionally and physically. But I don’t want cancer to control me, so I just try to control my life, to make it easier.

Understanding the cause, and breaking stigma to talk about “below the belt” cancers

For years, I didn’t know. Neither did the doctors. I’d ask: ‘Why me? What did I do? What did I eat?’ 

It turns out that I had colon tissue in my vulva, due to tissues not separating properly in utero. That eventually led to aggressive fighting between tissues, and ultimately, cancer. So it’s essentially been in me since conception.

As girls, we’re taught not to even say ‘vagina,’ let alone ‘vulva.’ Boys can be open, but not girls. Today, my young niece’s generation is more open, but when you get cancer below the belt, you feel shame, disgust, and dirty. Having cancer in your private parts is hard to talk about. 

Breast cancer is socially accepted; gynecological cancers are not as easy to discuss. But you should never feel shame.

What I want people to know

It’s never really over. Even if someone says they’re cancer-free, you’re not free of what you’ve been through. 

People say time to move on, but sometimes you just need time in the depths of despair. There is no timeline for recovery.

I mourned not being a parent, but what gets me now is thinking about legacy. What’s left of me when I’m gone? I used to mail everyone birthday cards; before my big surgery, I wrote out a year’s worth of cards just in case I didn’t wake up.

Legacy can be left in many ways, even if it’s not through children.


Carly A. vulvar cancer
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Categories
Acute Myeloid Leukemia (AML) Acute Myelomonocytic Leukemia (AMML) Chemotherapy Leukemia Menin inhibitor Patient Stories Targeted Therapy Treatments

Acute Myelomonocytic Leukemia (AMML): Russ’s Clinical Trial Story

“A Clinical Trial Saved My Life”: Russ’s Acute Myelomonocytic Leukemia (Rare AML) Story

After 48 years of marriage, Russ was blindsided by Acute Myelomonocytic Leukemia (AMML), a rare diagnosis with few options. But a last-minute clinical trial offered a new path. Here is his story of love, surrender, and the “sweet spot” between faith and science.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal & Jeff Forslund

Russ’s story offers a view into the intersection of honesty, science, and hope. Diagnosed with acute myelomonocytic leukemia (AMML), a rare subtype of AML, after weeks of “just the flu” and crushing fatigue, Russ went from preparing for hospital discharge to learning he had cancer and being told he needed treatment that same night.

When he heard the word leukemia, he thought of death, yet in that moment, a surprising sense of peace set in as he focused on what it was and how to treat it.

The early days were chaotic though. Russ was turned away from one hospital because his insurance plan did not match their funding, forcing him and his family to pivot overnight to UCLA’s emergency department. There, amid what he describes as ground zero conditions in the ER, he endured hours on a hallway gurney, multiple tests, and a 12‑hour wait before finally being admitted to the oncology floor. Even as he grappled with a 7+3 chemotherapy regimen and spent 29 straight days in the hospital, he remembers mostly trying to protect his family as waves of shock rippled through them.​

Russ D. AMML

Behind the scenes, his primary care physician and his family were fierce advocates, pushing for answers and ultimately toward a newly developed clinical trial drug tied to his NPM1 mutation. Russ was too sick to participate in the decision, but his wife and adult children did the research and made the call to enroll him, a choice he says “saved my life.” He now calls himself the poster boy for the trial, still taking the pills daily and returning to UCLA for ongoing labs, doctor visits, and bone marrow biopsies.​

Today, Russ lives in deep remission and talks about inhabiting the sweet spot where faith and science intersect. He credits his family’s constant presence, the insight of his oncology team, and the existence of a trial drug that arrived just in time for him.

For others with AMML, he encourages surrendering to trusted clinicians, considering clinical trials seriously, learning about your biomarker, and allowing community, spirituality, and modern medicine to work together in the service of one more good day.​

Watch Russ’s video or read the transcript of his interview below to dive deep into his story:

  • How Russ’s acute myelomonocytic leukemia symptoms first looked like the flu
  • How insurance and hospital systems can create major obstacles, and the importance of having advocates who help navigate where to go next to change the course of care
  • Why clinical trials are not last-resort gambles—and how exploring them from the start is the reason he says he is alive.
  • How trusted loved ones and clinicians are essential partners in making sense of complex choices and next steps
  • Russ describes a profound transformation from shock and uncertainty to “deep, deep remission,” learning to live day by day in a balance of faith, science, and gratitude

  • Name: Russ D.
  • Age at Diagnosis:
    • 68
  • Diagnosis:
    • Acute Myelomonocytic Leukemia (AMML), a rare subtype of Acute Myeloid Leukemia (AML)
  • Mutation:
    • NPM1
  • Symptoms:
    • Flu‑like symptoms
    • Profound fatigue
    • Blood pressure drop
    • Shortness of breath
  • Treatments:
    • Chemotherapy
    • Clinical trial drug: menin inhibitor
Russ D. AMML

Kura Oncology

Thank you to Kura Oncology for their support of our independent patient education program. The Patient Story retains full editorial control over all content.


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

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



Nancy and I met in a nightclub back in 1976… and we have been dancing for 48 years.

Russ D., AMML Patient

Who I Am

I’m probably most known for my passion for life. That extends to enjoying living, my family, music, and sports. I’m pretty passionate and can be moved by the things that I love and enjoy.

Our Love Story: Meeting My Wife in 1976

Nancy and I met in a nightclub back in 1976. I went to this nightclub with a buddy. I saw him dancing with a hot blonde while I was standing against the wall with a beer. I said, “Man, if he doesn’t ask her to dance again, I’m going to swoop in.” He went left, she went right, and I dashed right in and put my arm around her. I said, “Would you like to dance?” and we have been dancing for 48 years.

Russ D. AMML
Russ D. AMML

Knowing She was “The One” and the Secret to 48 Years of Marriage

I told her I loved her within two days. I was somewhat bitten by the “love at first sight” cliché, and it proved to be a good choice. We were engaged after two weeks.

Your love deepens as the years go on. It validates your early love, but then your ongoing love strengthens. It’s the recognition that you love her and you’re going to do what you need to do to keep that relationship going. That’s in light of mistakes, challenges, and difficulties, but also a lot of good times, a lot of laughter, and a lot of joyous living.

Your love deepens as the years go on. It validates your early love, but then your ongoing love strengthens.

Russ D., AMML Patient

Marriage Through Cancer: A Bond Forged in Suffering

My family all thought they were going to lose me, and I have a significant place in our family system. Never having gone through anything of this kind, it was such an emotional devastation to my wife and to my children. My wife stayed strong for my children. She was there for them, but she was there for me, too, and she was as determined as I was to see me well. We both felt like we had life to live.

I never winced once about having cancer. I never cried about it. I just said, “Okay, what have we got to do?” and my wife was the same, right there by me. Our love has deepened as a result of that. Love deepens if you allow it to, and our marriage and relationship are in one of the best places they have ever been in our lives. It is a bond created through suffering that is real and absolutely unbreakable.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

Living with Fear, Gratitude, and “Self-Contained” Feelings Today

At times, I feel very self-contained. Not isolated, but within myself. I manage the fears and concerns, and I try to live and savor each day. At times, it is a little bit lonely because I want to be brave for my family and my wife. There are things I manage that I do not tell people about. If there were something really dire, I would. But there is this curiosity of a question: how long do I have?

I had a very rare form of leukemia with not a good prognosis, but here I am feeling as good as I could possibly feel. I am grateful for today. I will do the things today that I always do, and I will continue to beat the drum of being encouraging to others and being caring, seeing people, and being who I am. I definitely feel a bit inward and self-contained at times. It’s like nobody knows what I am going through but me. It’s a little tricky.

It is a bond created through suffering that is real and absolutely unbreakable.

Russ D., AMML Patient

My First Red Flags Before My Diagnosis

I had been at a local hospital for two other stays before I went to UCLA. We thought I had the flu. I was on the couch for a couple of days, but I wasn’t getting better. I had a lot of flu symptoms and fatigue. Then I had a real blood pressure drop, which was scary for both of us. We called our primary care physician and she said, “Go to the hospital.” I was in the hospital for the first stint. I’m sure I was a bit dehydrated. They gave me an IV, kept me under observation, ran some tests, and sent me home with no diagnosis.

Over the next three weeks, I knew something was wrong because I couldn’t walk from my car to my house without being exhausted. The fatigue factor was profound. I would lie on my wife’s lap and say, “I am so tired.” I was so down. My primary care physician had me take a blood test, and it came back with my white blood cells at about 40,000. She said, “Get right to the ER.” I went back, and they diagnosed me with acute myelomonocytic leukemia (AMML) at Providence. They diagnosed it, but they do not treat it. They told me I needed treatment that night.

I cannot tell you the sheer shock. It was surreal, but I felt this peace come over me that said, “Okay, we have to deal with this.” Meanwhile, it was like shock waves running through my family, and I was trying to maintain for them. The shock was real, but the main red flags had been flu-like symptoms and serious fatigue that ultimately led to the diagnosis.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

What We Thought During Those Three Weeks Before Diagnosis

We didn’t think it was anything like leukemia. We knew something was wrong, but because I had been largely healthy throughout my life, we thought, “There’s something, but we will take care of it.” There was an optimism. It never dawned on us that leukemia was the culprit. Those three weeks were filled with questions: “What’s going on?”

I am a high-energy guy. For me to have fatigue was alarming to everyone. People were freaking out, asking, “What is wrong with Dad?” because I am usually high-energy. Our minds never went to the dire reality we eventually faced — nothing close.

I couldn’t walk from my car to my house without being exhausted.

Russ D., AMML Patient

A Primary Care Doctor and Wife Who Advocated Hard

My primary care physician was very much on top of things and advocating for me. She was in our corner and treated me with what she knew. When the blood test came back with the accelerated white blood cells, she said, “Get to the ER right now.”

It takes a lot to get me to go to the hospital. I tend to be a little bit too chivalrous or stubborn. My wife was also really urging me. She was consulting Doctor Google, researching and reading, and she did not like what she was seeing. It did not take much for her to get me going as well.

blood vials
Russ D. AMML, a rare subtype of AML

The Moment Everything Changed

That afternoon, I had already been in the hospital for three days, and they told me I was being discharged at 2 p.m. I was actually feeling better after they had treated me a bit. I was packed up and ready to go home. Two o’clock, three o’clock, four o’clock went by.

By 4 p.m., I asked the nurse, “We were supposed to be discharged.” She said, “The doctor has not signed the orders yet.” At 6 p.m., the nurse came into our room with a phone. The doctor was on the phone telling my wife and me that I have acute myelomonocytic leukemia and that I needed to get treatment right away by going to downtown Los Angeles and going to USC.

When the blood test came back with the accelerated white blood cells, [my primary care physician] said, ‘Get to the ER right now.’

Russ D., AMML Patient

That moment was surreal and mind-boggling. Nancy was very afraid, and so was I. We’re older, so when I heard the word leukemia, I always thought of death. I asked the doctor, “How long do I have?” It was like going from 0 to 100 — from just living life to, “What?!” A peace settled on me. I cannot say I was fearful. I was more asking, “What is this, and how do we get after it?”

I had no idea at that point that without the clinical drug, there wasn’t much of a treatment opportunity. We were caught flat-footed and knew nothing about it. We have an education now, believe me. My wife was very upset, unhappy, and concerned. We held each other, moved into the discharge process, went home, picked up a couple of things, and drove down to what we thought was USC Medical Center.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

Telling the Kids and Family in the Middle of the Chaos

We went to that medical facility, which was supposedly USC, but USC had sold its building to a public medical group. It was not what we expected. My daughters came down, and I hugged them, but I was inside the building trying to get treatment and move through their process.

My wife handled the bulk of communicating with the entire family about my situation. That was brutal. She was a great mom and was there for them, but it was very tough. My youngest daughter was absolutely undone. She was worried I would not be there for her marriage. She had a serious boyfriend and feared I would not walk her down the aisle. She had a lot of angst, and her boyfriend, her fiancé, was seeing this for the first time and was overwhelmed.

My oldest daughter was emotional but very strong. My wife also had to tell my son, and he and I are very close. That was a tough conversation for both of them. The family had initial fears, concerns, and tears, but then it became, “Okay, what have we got to do here?”

When I heard the word leukemia, I always thought of death.

Russ D., AMML Patient

Insurance Rejection and Being Turned Away While Needing Treatment

I was in a back room getting tests, holding paperwork that the Providence doctor had given me. He said, “Show this paperwork and you will get admitted anywhere.” That wasn’t the case. I had to go through all these tests. I spent seven hours in that back room waiting and talking.

At the end of seven hours, a financial manager asked me to come into an area. She said my Medicare Advantage plan did not sync with their public funding, so they couldn’t treat me there. We went from 0 to 100, thinking we would go there and get treatment. We had prepared for that. Instead, she basically said, “You will have to leave. We cannot treat you here.”

insurance policy TOC
Russ D. AMML, a rare subtype of AML

I had already released my family to go home because it is about a half-hour drive from where we live. Around 11 p.m., I called my wife and my daughter Danielle and said, “I need you to come pick me up. They’re rejecting me because of the funding.” They asked, “What are we going to do?” I said, “Come pick me up. Let’s get a good night’s sleep if we can, and I will deal with this in the morning.”

I slept well that night, but my wife didn’t at all. In the morning, we called an oncologist whom Providence was going to connect us with. This doctor had never seen me in the hospital, but was on the phone. She said, “Go to UCLA and be really sick, because you are going to have to go in through the ER. Take your paperwork and go through their emergency room.” That is where we headed in the morning.

My Medicare Advantage plan did not sync with their public funding… They’re rejecting me because of the funding.

Russ D., AMML Patient

We Had to Pivot to UCLA

I knew nothing about a biomarker at that point. I was just trying to remember the name of what I had. I was not “AMML-ing” it very well. My oncologist at Providence had told me, “Pretend that you’re very sick at UCLA.”

We arrived and waited in a tent outside in a parking area and it was cold. When I got in, the UCLA ER looked like the ground zero of a battle. There were people everywhere, gurneys, IV drips — everything. I went through a variety of stations, and my wife Nancy and my daughter Ally came with me. At one point, I was really in anguish — or pretending I was — and really doing my best to make myself seem very sick. My daughter Ally asked my wife, “Is Dad really hurting that bad?” I pulled down my mask, looked at her, and winked, so she knew I was not that bad.

They told me they were going to admit me, but didn’t know when. They put me on a gurney in a long hallway with bright recessed lighting. It was like a traffic jam on the freeway — gurney after gurney wrapped around the building. I don’t even know how the doctors and nurses kept track. I received good treatment there; they checked on me, made me comfortable, and did more tests.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

We arrived around 10:30 a.m. I was put on a gurney around 1:30 or 2:00 p.m. Eventually, they tucked us into a little side room where my gurney barely fit. It was more private because they knew they were going to admit me. A doctor came in and said, “This is what you have. It’s very treatable. You’re going to be just fine.” That wasn’t true, but we didn’t know that, and we took great comfort in it. She even prayed for me, which was very kind.

We sat in that small room until about 9 p.m. Then we were ushered into UCLA Ronald Reagan on the oncology floor. It took about 12 hours to get a room.

My care practitioner got me settled for the night, started a drip line, and I was attached to that pole for the next six months for the most part. It was a simple “Welcome, get in, and let’s set up what we need.” I told my wife she needed to go home. She was not happy about it. She spent several nights with me over time, though I’m not sure if she spent the night that first night.

They started testing in the middle of the night, so I got very little sleep. Providence had sent all its paperwork, so UCLA had a baseline, but they wanted to run their own tests. They did that through the night and into the next day, and they started chemo on the second day.

I didn’t know what a clinical trial was or how it would impact me… She said it would be very exciting if I qualified because of the NPM1 mutation.

Russ D., AMML Patient

First Time Hearing About the Biomarker and Clinical Trial Option

My first oncology doctor came to check on me and talk with my wife, my daughter, and me about the possibility of a clinical trial drug, of which I was thoroughly uninitiated. I didn’t know what a clinical trial was or how it would impact me. At that point, I had an IV pole with about 10 different bags running into me. I’m not a big pill-taker, and I had lost control of my life. All these choices were being made on my behalf. I was just along for the ride.

I remember her talking about this drug. I don’t remember her using the word biomarker. She talked about a mutation. That was the first time I heard anything about it. She said it would be very exciting if I qualified because of the NPM1 mutation. That was the first time my family and I heard it, but then nothing more was said for several days, until it actually got in motion.

I was in a bad way, dealing with the seven-day, round-the-clock 7+3 regimen. I had a rocky five or six days. While I was struggling, the clinical drug decision process was going on. My daughter and her husband had done a deep dive into the drug, and my wife had a close family friend with bladder cancer whose life was saved by a clinical drug. Between their research and that recommendation, my family moved toward the trial, even though others initially did not want me to suffer more after hearing about the side effects. My son and my other daughter relented, and we decided to go for it.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

My Family Made the Clinical Trial Decision and Saved My Life

They saved my life.

We did not have any other option. This drug had just been developed a few months before my diagnosis, so we believed it was a God thing. If I had been diagnosed a year earlier, I probably would have been gone by now. My prognosis was not favorable. There wasn’t anything else.

I was grappling with trying to get through the chemo. I remember being shivering cold, never able to get warm, and being in and out of sleep with violent dreams. My vision became extremely blurry for a while, which was very scary. I couldn’t focus on anything, which was terrifying. I was wondering if I was losing my eyesight. While I was in that state, my family was discussing the clinical drug. It wasn’t something I could participate in. When they explained it to me, I said, “Fine, let’s do it.”

The two people running the trial came in and handed me the paperwork. I signed it while on my bed. From that point forward, I was taking two pills a day.

We did not have any other option. This drug had just been developed a few months before my diagnosis, so we believed it was a God thing.

Russ D., AMML Patient

Learning to Live Around the Trial Drug Schedule

I tried to get them to give me the pills at the same time each day. You couldn’t have anything in your stomach two hours before taking them and then an hour after. It felt like madness. I tried to get them on a routine: “I will have lunch, you come in at 4 p.m., give me my pills, and I will have dinner at 5 p.m.” It took a week to get them aligned.

At that time, I followed the timing rules very strictly. Now I fudge here and there. They have since told me they don’t know exactly what should be done regarding food intake, because food actually integrates fine with the pills. Waiting two hours before and one hour after may be overwrought. I was very fastidious about it then, though.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

The Power of Family Support and My Goal of Being a Father

Our family is close. I love being a dad. My wife is an incredible mother. We have always had good relationships with our kids and loved raising them. All my kids and grandkids live within 20 minutes of us, so we’re always together.

I did not grow up with a father who cared about me or even talked to me. There was no connection between us. Becoming a father was a real goal of my life. A lot of people have goals of success. I wanted to be a father. I didn’t know how poor my upbringing was until I became a father myself. I dreamt of being a dad, and it came to pass. The greatest source of joy in my life is my family.

Them caring for me was very humbling. I was at UCLA for 29 straight days during that first stint. My wife, daughters, and son-in-law spent the night with me at different times. I had someone at the hospital every day but one. I was very focused on beating this and having life, and my family was the primary inspiration for that.

Them caring for me was very humbling… I was very focused on beating this and having life, and my family was the primary inspiration for that.

Russ D., AMML Patient

How I Think About Clinical Trials Now

For me, the clinical trial has always been a very positive point of reflection.

I came to understand how rare my cancer was and that there wasn’t much that could be done without this drug. Once we started, I never wavered about being part of it. I felt I was helping, and now a drug related to mine has become FDA-approved. The company that manufactures it has been gracious and kind to me because I was one of the first people to take the trial drug upon diagnosis. The FDA approval initially came for those who had relapsed, but they saw the drug work in me at diagnosis.

I felt it was a real privilege and I was very grateful. I told the company, “Anything I can ever do for you, I will.” I have done some speaking for them. I felt good about helping others, forwarding healing for people coming after me. When I reflect on it, I’m always glad to be part of it and willing to do anything I can to further healing for others.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

Life on a Clinical Trial: Monitoring, Visits, and Bone Marrow Biopsies

After being discharged from the 29-day hospital stay, the clinical drug protocol required me to return to UCLA twice a month initially. The first appointment of the month was just labs. The second was labs plus a doctor’s checkup. That went on for seven or eight months. Now it’s once a month at UCLA, where I do labs and see the doctor at the same visit.

I also still get a bone marrow biopsy every 90 days. I just had one about a month ago, and everything came back MRD-negative. We are about six months away from the end of the two-year trial, so something will shift at that point, but I am not sure how yet.

I still take the trial pills. I used to take two pills a day; it’s now three pills a day and has been for six or seven months. I take them in the afternoon. With the first one, I say a small prayer of thanks: “Lord, thank you for [this drug] and that it has become FDA-approved.” With the second, I say, “Thank you for its ongoing efficacy in my body to bring healing.” With the third, I say, “May it always be potent, may I never die of cancer, and bless oncology.”

With the first one, I say a small prayer of thanks: ‘Lord, thank you for [this drug] and that it has become FDA-approved.’ With the second, I say, ‘Thank you for its ongoing efficacy in my body to bring healing.” With the third, I say, ‘May it always be potent, may I never die of cancer.’

Russ D., AMML Patient

Having Extra Eyes on Me

Being in a clinical trial means there are extra eyes on you — extra monitoring, extra visits, and extra biopsies. That hit me early, and I took to it like a duck to water because I felt it was part of my recovery. My wife and I have to drive down to UCLA on a major thoroughfare and fight traffic. It’s not always convenient, but my feeling is that we need to be the best patients, the most pleasant, and grateful people we can be. Let the eyes be on me.

I welcome that because it gives the team more data and information. It can help with this nasty disease. I jokingly call myself the poster boy for this clinical drug because I was one of the first to get it upon diagnosis, so they watch me very closely. I embraced my poster boy responsibilities.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

What I Tell People Who are Considering Clinical Trials

If I were sitting in front of a group of people who might know something or nothing about clinical trials, I would start by saying: clinical trials saved my life. I am here today because of a clinical trial drug.

I would encourage you that if there is an available trial drug, do your research, talk with your doctors and caregivers, and seriously look at it as a means by which you embrace treatment that is the absolute best for you. I admit I have a bias; the clinical drug saved my life, so I am a strong proponent. Every person is different, and every situation warrants its own process, so do your process. But if you are going to lean in and need a little help deciding which way to go, I am going to nudge you toward the trial.

Clinical trials saved my life. I am here today because of a clinical trial drug.

Russ D., AMML Patient

Learning About My NPM1 Mutation

The process of discovering the mutation and biomarker was not discussed with me at the time. They did the tests and used the results to guide my treatment.

Later, one of the doctors in the entourage wrote everything down for me on a sheet of paper: the NPM1 mutation, some details, and clarifications. I still keep that piece of paper on my desk. It was the first time I truly understood anything. Up to that point, everything had been verbal, and it did not fully land with real cognition. That paper was a breakthrough moment for me.

It was also the day they told me I was in deep, deep remission. I had never heard of anyone being in “deep, deep remission,” only remission. My oncologist called it “deep, deep,” so I quote him on that. The paper is special because she took the time, on her own initiative, to write it out and make it clear to the degree a layperson could understand.

Russ D. AMML, a rare subtype of AML

It was a breakthrough moment for me to understand, and it was also the day they told me I was in deep, deep remission.

Russ D., AMML Patient
Russ D. AMML, a rare subtype of AML

The Communication Gap Between Doctors and Patients

It’s important to humanize all of this because there’s so much information being thrown at you. In my case, it was not backwards, but they knew what to do with me. They knew about the clinical trial and my mutation, which was reassuring.

However, there’s a disconnect between the medical field and patients. Medical professionals are so busy and consumed that they look for the shortest paths to communicate and fulfill their jobs. They take for granted that patients will understand information to a certain degree. There are rare doctors who make it simple, and that is genius: having tremendous knowledge but breaking it down so anyone can understand.

A lot of doctors do not seem to enjoy that part of communicating with patients. They may trivialize it because they’re focused on saving lives. That creates disconnect and frustration for patients and families. I’m not judging them; I respect their learning, work, and time. It’s just a reality. What helps is follow-up, like when a couple of nurses came back into my room to help me understand more. That was very valuable.

Genius is tremendous knowledge broken down so anyone can understand.

Russ D., AMML Patient

Keeping lines of communication with the care team open is crucial, but it’s hard for one person to hold all the information. My wife was so focused on me that she did not understand a lot either. My oldest daughter became an advocate, but she eventually had to drop off because she has a family and responsibilities. During that first month, she was all over it by helping explain, fielding conversations, and taking on discussions I couldn’t have because I wasn’t well enough. My wife was too concerned about me to shoulder it all.

It’s a reality that some doctors’ personalities are not geared toward the communicative side. Family members or advocates who can help digest and interpret are incredibly important.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

Navigating the Future: Labs, Remission, and Living Day by Day

Now, I can read my labs and know what I am looking at and looking for. I understand the terminology regarding my biopsies. The future is not really discussed. I do not know how to discuss it, which is why I try to savor each day and enjoy it for what it is.

My primary oncologist has said one key thing: every day you do not relapse makes it more likely that you will not. As far as the future is concerned, I live on that. I do not have bad days. I have never been someone who comes home and says, “I had a bad day.” As far as I know, I am totally cancer-free. That is a good day. Whatever else happens is icing on the cake — and I like lots of icing, especially on carrot cake, which my wife is making for Thanksgiving.

Live your life in the sweet spot of faith and science.

Russ D., AMML Patient

There isn’t much dialogue about the future because it is unknown. My oncologist looks at me and says, “Russ, you’re doing good, man. Keep it up.” He is the director of stem cell research and training at UCLA. He did not push me in that direction, even though it would have been natural. He walked with me and watched me. He told me I had options, which many people do not have. He laid out my options but didn’t tell me what to choose. That was up to my family and me.

Living at the Intersection of Faith and Science

I live in the sweet spot of the intersection of faith and hope. You need people praying for you and a community around you. You want to consider spiritual truth to build your faith and strength to fight your disease.

However, do not allow faith to short-circuit your belief in science. A drug was made for me at the right time in my life that saved my life. God blesses great minds with creativity and the ability to do great things for their fellow human beings. Take advantage of that. Where those tools overlap, live your life in the sweet spot of faith and science.

Russ D. AMML, a rare subtype of AML
Russ D. AMML, a rare subtype of AML

Surrender, Trust, and “Letting Them Bake the Cake”

If I had one main piece of advice for people with AMML or cancer, the word that comes to me is surrender. Place your life in the hands of your higher power — your God, whatever you believe is larger than you and gives life. Surrender to the knowledge and wisdom of experienced doctors.

My primary care physician said to me, “UCLA has the recipe to bake the cake.” I have always trusted that they have the recipe, and they baked a cake for me. Surrender to God, surrender to the doctors, and embrace peace and savor it.

Another hard part is realizing your life is not your own. You have to accept that. If you try to micromanage every detail, you are not going to make it. I was an advocate to a point, and my wife and daughter were advocates too, but a lot happened because we trusted the wisdom and experience of the doctors. You can fight that truth or surrender to it. I surrendered, though it was not always easy.

Surrender to God, surrender to the doctors, and embrace peace and savor it.

Russ D., AMML Patient

Russ D. AMML
Thank you for sharing your story, Russ!

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Kura Oncology

Thank you to Kura Oncology for their support of our independent patient education program. The Patient Story retains full editorial control over all content.


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

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


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Categories
Antibody-drug conjugate Cancers Chemotherapy Chemotherapy port installation Gastrectomy Gastric Adenocarcinoma Immunotherapy Metastatic Metastatic Patient Stories Stomach Cancer Surgery Targeted Therapy Treatments

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

When Arelly received her stomach cancer diagnosis, a look back at her experience revealed just how critical awareness and advocacy are for patients navigating troubling symptoms. Her life as a mother and wife was upended in early 2024, moments after surgery exposed a malignant tumor. Her case underscores the urgent need for better screening and listening to every patient’s voice, particularly for symptoms like fatigue and persistent pain in individuals who are often told they’re “too young.”

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Initially overlooked by medical providers, Arelly’s symptoms, including pain after gallbladder removal and unusual exhaustion, were attributed to routine postpartum changes. Yet, a growing mass during her third pregnancy drove multiple ER visits and eventually life-saving surgery. The path to her stomach cancer diagnosis was marked by self-advocacy, perseverance, and partnership with her husband, who documented her symptoms and supported her emotionally through critical hospital stays.

Arelly R. stomach cancer

Family remains Arelly’s anchor and inspiration. Her experience balancing motherhood and cancer treatment highlights the unique challenges facing patients with young children. She describes learning to cherish “sunshine hour” visits, communicate openly with her kids, and plan family time around her treatment cycles, showing that quality of life is built on routine moments together. Online communities and peer support have helped her process grief and find solidarity with other patients.

Arelly now advocates for early screening and self-kindness, urging others to use their time well and embrace lessons learned. Her words, “Time is your biggest asset,” aim to empower those facing gastric cancer to prioritize courage, connection, and compassion in redefining their experience.

Watch Arelly’s video above and read through the edited version of her interview transcript below for more on how:

  • Listening to one’s body and advocating for answers is vital when symptoms are overlooked or dismissed
  • Family support, routine, and open communication are crucial in balancing treatment and parenting
  • Community connections with other patients provide essential emotional support and solidarity
  • Time spent with loved ones is the most valuable asset for any patient
  • The experience transformed Arelly into a stronger advocate, teaching her to value mindfulness and kindness in daily life

  • Name: Arelly R.
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Age at Diagnosis:
    • 38
  • Staging:
    • Stage 4
  • Symptoms:
    • Nausea
    • Blood in stool
    • Side pain
    • Extreme fatigue
    • Excessive burping
  • Treatments:
    • Surgeries: gastrectomy, port placement
    • Chemotherapy
    • Immunotherapy
    • Targeted therapy: antibody-drug conjugate
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. 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.



My name is Arelly

I was diagnosed in late February of 2024 with gastric adenocarcinoma.

I grew up in Orange County and had a pretty happy childhood. My parents made it a point to go on vacation to Mexico every year, which is where my family is from, so I have really good, embedded roots there. I have three kids, and I am married. We just had our fourth anniversary last week.

I love to scrapbook. We love nature and visiting national parks. That is kind of our hobby, or was our hobby before I got diagnosed. We love music and going to concerts, and we spend a lot of time doing that as a family. Family is really important to me, and so is spending time doing things that I love, like music and the arts.

We saw Bruno Mars, and that was an amazing experience. We have seen Alicia Keys, Coldplay, and others. That was all pre‑diagnosis, and post‑diagnosis, I am like, okay, we have to see this person and that person. Bruno Mars is the number one.

I love shows that don’t allow recording because they make you be in the moment. We are on our phones all the time.

First red flags during my pregnancy and postpartum

The beginning for me really starts with my middle child’s pregnancy, my toddler, who is going to be four in May. I had a CT scan that was normal, and that pregnancy looked normal on paper. I had a lot of pain during it, but overall, everything was considered fine.

After I gave birth, I went through all the postpartum things. I ended up having my gallbladder removed about a year after he was born. It was via C‑section, and I was having a lot of pain on my right side. They removed my gallbladder, but after the removal, I was still having pain. I kept saying, “I am still having pain on the right side,” over and over. They would answer, “That is normal because you just had surgery.” Anytime I brought up a concern, it was, “That is normal.” Stomach issues were explained away as part of learning to function again without that organ.

My husband and I wanted to grow our family, so we decided to try for another baby. I had a miscarriage and then got pregnant again. Everything seemed to be flowing. I was not feeling anything out of the ordinary, just tired. I had a toddler, and I was pregnant. Then, out of nowhere, I had a mass protruding out of my umbilical area.

I kept bringing it up at my OB appointments. They said it might be a hernia, but they were not sure. They would just check it and send me on my way. As my stomach continued to grow, the growth pushed the tumor out more, to the point where I had two ER visits. On the last ER visit, there was leakage from the mass. That leakage concerned the surgeon enough to say, “We have to take this mass out. We do not know what it is. Your baby is going to be fine, but we need to remove it.” I was about 28 weeks pregnant in 2024.

The next day, they removed around a 15 cm mass. They told us it was a malignant tumor. That was when my OB recommended transferring my care to another hospital that could handle both the high‑risk pregnancy and the new cancer diagnosis. Hearing the word “cancer” and then “stage four,” and then phrases like “three to six months to live,” was devastating. I had pregnancy, postpartum, symptoms that mimicked postpartum, and a recent gallbladder surgery, all happening around the same time. It is all masked within everything you are already going through. It felt like we hit a wall, everything slowed down for a second, and then everything picked back up again. We have just been running with it since.

Symptoms that were overlooked or misattributed

The most prominent symptom was fatigue — extreme, extreme fatigue. There was one time when I had blood in my stool. I assumed it was hemorrhoids because I was pregnant, so that is what I told myself. Besides that, I cannot pinpoint anything dramatic. I did not have constant headaches, and if I did, I would think it was something like high blood pressure from pregnancy.

Mostly, I was just always exhausted, physically and mentally. Later, the symptoms became more visual. I could feel and see something strange in my belly. Looking back, I would also include the right‑sided pain, which I had treated as “normal” because I had been told it was normal after gallbladder removal. Now, when I talk about it, I can see that pain is a symptom too.

Feeling dismissed by doctors, and taking the H. pylori test

I do feel like I was dismissed at times, although there were also moments that made me think, “Why are they ordering this?” After my gallbladder removal, I kept going back to my regular doctor, saying, “I am feeling these things again. What is going on?” After I complained three or four times, he finally said, “Let me give you this H. pylori test.” I did the test before I got pregnant with my third, and it came back negative.

I know H. pylori can be a cause of some gastric cancers, but I do not really sit and wonder what caused mine or what I could have done differently. I do not ponder that because there is no point. That is the one thing he did, ordering that test.

Around the same time, my best friend had just gone through her own journey with breast cancer while pregnant, so I was very cancer‑aware. She is a survivor now, but back then, it was very fresh. I told my doctor, “My friend just had breast cancer. When should I get checked?” Instead of something like, “You should start at this age,” he said, “You know cancer is not contagious, right?” I remember freezing and thinking, “That is not what you are supposed to say to me.” I do not know if he realized he said it like that.

It was during COVID, and many appointments were by phone or in rushed in‑person visits. I do not want to say I lost trust in doctors, because there are amazing care teams out there, like the team I have now; but they are human, and sometimes they just do not see things or think about them. That comment and the repeated dismissal of my symptoms made me step back and lose trust in some of the medical staff at that time.

Why early screening and advocacy matter so much

That whole experience ties into how I feel about screenings, especially for gastric cancers. Screenings are so important. Right now, I am very passionate about advocating for earlier screening, because we are seeing cancer in younger people so often. That is one reason I do things like this: to create awareness that you are never too young to get cancer. Children get cancer. So why do we have these strict age protocols telling us when we “qualify” for colonoscopies, endoscopies, mammograms, and so on?

We need to take into account people’s histories and symptoms and what patients are actually saying. If someone keeps saying, “This does not feel right. I feel this and this,” that should matter. Doctors have the expertise; we do not. We are the patients. They are there to help us and to listen.

Advocating for myself in the emergency room

By the time I was going to the ER repeatedly, my advocacy became very simple and direct. It was like, “I am here now. I was here two days ago. You sent me home. I cannot be sent home today. Please, what is going on? Please take a look at this.”

It is important to be able to say, “I know my body. I know what is normal and what is not. Please listen.” The sad part is, I have heard many stories from people I have met in the stomach cancer community who said all those things and still were not heard.

So a lot of it becomes repetition: “This is not right. This is not right. Please look into this. What tests can I take? This is not my normal.” At one point, I was literally saying, “Look at this. This is not normal,” because sometimes they would not even physically examine me, just listen and move on. It was crazy.

My husband’s support and documenting the tumor

My husband has been such a key part of this. In the beginning, he took a lot of pictures of the tumor. It is funny because we have different sets of photos. I have certain pictures in my phone, and he has others in his. He took pictures of the tumor as it progressed. I did not want to look at them; I did not want to even see my own belly button with the tumor pushing out.

He did it so that when we went to the ER and doctors needed context, he could say, “This is what it looked like a week ago, and this is what it looks like now.” That helped us show that things were not improving; they were getting worse.

The last time we were at the hospital before they removed the 15 cm mass, the mass looked red. In the report I read later, they said it was infected. It had gotten to the point where the surgeon on call around 7 p.m. was worried about sepsis. He said, “Whatever it is, we have to take it out, because you can die of sepsis.” Hearing “sepsis” before hearing “cancer” out loud was very scary.

My husband has always been there, especially when I could not articulate or face certain realities. When I had blood clots, he would take pictures to track whether they were getting better or worse. He tried not to panic, because if he panics, I panic. He is the calm, and I am the “That does not look right” person. We really balance each other out in that way.

Hearing “cancer” while pregnant

By the time I officially heard “This is cancer,” I had already had major abdominal surgery while pregnant. I was barely moving and barely conscious in a small hospital room. I already had a feeling it was cancer. My OB called me because he was not at the hospital. He said he needed to come talk to me. I said, “I already know. Can you just tell me?” He did not want to tell me over the phone, but I insisted, and he finally said it looked like cancer and that he wanted to transfer me to UCI.

Once I was transferred, it became a night‑and‑day difference in care. They monitored me around the clock because they had two lives to keep stable: me and the baby. At UCI, there was a team of about ten people involved: baby specialists, oncology teams, and people focused on post‑surgery recovery. They were constantly checking me and checking the baby, trying to figure out exactly what type of cancer it was.

It was overwhelming. Sometimes there would be ten to fifteen people in the room in white coats talking to me at once. Even now, my husband and I sometimes sit in the quiet when the kids are asleep and ask, “Is this life even real?” It still does not feel real sometimes. I can picture myself in that hospital bed, in pain, with everyone talking, and I am half-listening, half-tuning them out because it is too much to process.

How I knew something was wrong before I got diagnosed

I had a sense that something was going on with me even before the big tumor showed up. Because I am over 35, I had NIPT testing during my pregnancies. It is genetic testing for the baby, and everyone thinks of it as a gender test, but it looks at more than that. With my third son, Benjamin, I had to do the test twice, and both times it came back inconclusive.

When I spoke with the genetic counselor and looked back at the report, there was a note at the bottom saying they could not get genetic information for the baby because something in the mother’s DNA was impeding it. Of course, I went online and started researching why other people’s NIPT results were inconclusive. I went down that rabbit hole and started wondering if something was going on with me.

I was also dealing with a lot postpartum with my middle child and was already in counseling. A lot of my biggest fears centered around not being able to take care of my children and something happening to me so that I would not be there for them. Looking back, I feel like my subconscious was preparing me, telling me this might be my reality.

The fact that the NIPT had been normal for my toddler but not for the baby also gives me a rough timeline. I know that in one year, I likely did not have cancer, and by the next, I did. That shows how quickly this type of cancer can progress. The type I have is rare and spreads like fire.

Motherhood, hospitalization, and protecting my kids emotionally

When I first got my diagnosis, I did not worry about my unborn son’s safety as much as you might expect. I felt deep down that he would be okay. I did not even focus much on myself. I just had this feeling, pregnancy‑wise, that he would be fine.

What crushed me more was being away from my older two kids for those two weeks in the hospital. My oldest was around seven, and my son was about one and about to be two. They did not really know what was going on. All they knew was that Mommy and Daddy had disappeared to the hospital for a long time. My parents and family stepped in and cared for them.

There were lots of video calls. We would tell them, “Mommy is at the hospital,” but I did not say, “Mommy has cancer.” They do not know what that is. We just tried to reassure them that I would come home soon.

When I started feeling better, the hospital had a “sunshine hour” where I could go outside for an hour, even while hospitalized. I would be hooked up to my IV while my husband wheeled me outside in a wheelchair. The kids would visit, and we would sit together and have something like a little picnic or cafeteria time as a family. I was still pregnant and recovering from surgery, but those visits meant a lot.

Eventually, I came home, and we focused on spending as much time together as we could before chemotherapy started while I was pregnant. I had a port placed, went through endoscopies, colonoscopies, and other testing. I got to be with my kids before Arthur was born.

After that, life became chaotic. There is the cancer itself and being a cancer patient; there is also being a mom of three, with two of them being two and under. That balance is what has kept me going. They are my motivation. I still deal with a lot of mental battles, but they keep me grounded.

How cancer affected my identity and personality

Cancer does not just attack your body; it attacks your personality and who you thought you were. I am in the middle of figuring out who I am now, accepting that I am a mother of three and also a terminally ill person who has to think about leaving all these things behind. That is something no one prepares you for. Almost as soon as you get a serious diagnosis, people start asking about your “dying wishes.” I have not confronted all of that. I process it in small pieces.

People who are not in this situation will say, “Take lots of videos. Take lots of pictures. Live your best life.” And I do try to do those things, but I am also so tired. So I focus on quality time. I want my kids to remember that when I felt okay, I was present with them. I know there are many days when I am knocked out after treatment and just have to rest, but when I do feel okay, I make an effort to say to my husband, “Let’s do something with the kids this weekend,” even if it is just the zoo or the aquarium.

I also had to tell my oldest daughter the truth at some point. She is going to be ten, and she is very aware. I was diagnosed in late February, but I waited until school was out around May or June. I wanted her to finish the school year without that weight. Over the summer, I told her, “Mommy has cancer,” so we had time to talk and for her to process it. Just yesterday she said, “Mom, I wish you did not have cancer,” and I told her, “Me too, baby.” I am glad she knows. I do not want her to feel, later on, that I hid it from her. With the little ones, it is different. My three‑year‑old just knows I am sick and that I go to the doctor, and that I have a port he can touch. He does not understand cancer.

Quality of life, treatment cycles, and everyday joys

Quality of life has become central to how I navigate treatment. Over time, you become an expert in your own body. I know my regimen: I get treatment every three weeks. The first week tends to be okay, the second is usually the worst, and then I get a few better days. We plan our lives, and especially family outings, around those better days.

On days when I am present, I try not to overthink it. We just do normal things: read a book together, work on my son’s preschool projects, or scrapbook with my daughter. I have always loved scrapbooking, and now I am teaching her how. Communication with my husband is key. I will say, “These are the days I think I’ll feel okay; let’s try to do something then.” Sometimes it does not work out, and the day is worse than expected. In those cases, I try to give myself grace and accept that it is okay not to feel well.

My husband has also been a 100% caregiver through this, and I admire him so much. He potty‑trained our toddler, handles diaper changes, and takes care of both the kids and his wife with a terminal illness. I try to remember to ask him, “How are you feeling?” because he rarely gets a break. When he does get a break, I am thinking, “Who takes care of the kids then?” Our parents help as much as they can, but they are older, and we try to save that help for when it is really necessary.

We also try to carve out time for our marriage, not just parenting. On good days, we might go to a concert or try to do something just for us. When I am feeling okay, I will say, “You take a break,” and I will be the supervising adult once the kids are asleep, hoping my body cooperates and there are no emergencies.

Hair loss, body changes, and rediscovering myself

My first year of treatment was strange in that I did not lose any hair. I did not look like what people imagine a cancer patient looks like. There is no one “look,” but society tends to picture someone thin, frail, and bald. I am a heavyset woman, and I still had my hair then, so I did not fit that picture. Then I started a new treatment, and with the very first infusion, I lost all my hair. That was when it really hit me.

Hair is wrapped up with identity. You think you will not care that much, but you do. Chemo also makes you exhausted and changes your skin. I will look back at a picture of me when I was pregnant and see this glow. Then I look at myself now, and I look different. I often put on makeup, and my husband will ask why. I tell him, “I do not want to feel like I am dead.”

It is not just physical. A heavy diagnosis brings heavy thoughts. You have to confront things like death and how it might happen. I was preoccupied with that in the beginning. Now I try to avoid overly dwelling on it. When I feel myself going down a bad spiral, I let myself feel it fully for a day. I ask, “What else have I been holding back? What else do I need to feel?” I let it all out. The next day, I say, “That was yesterday. Today is not going to be that day,” and I try to start over with better energy.

Holding on to small happy moments

Happy moments now are usually small things that might be easy to miss. I used to love cooking. That was my love language. If my husband liked noodles, I would think, “Let me make this noodle dish,” and it made me happy. Earlier this year, I had ascites so badly that I needed to be drained twice a week. I could not walk or even shower on my own sometimes, let alone cook. Cooking was just not possible.

When I do have a day where I can cook, it feels huge. I notice it, and my daughter notices it. She will say, “Mom, thank you for this food,” and I recognize that I did something important just by making a meal. Those are the happy moments now: sitting at a table, eating together, and being able to participate.

Sometimes our evenings are staggered. My daughter comes home from school, and we are immediately in night‑routine mode with the younger ones. We do not all sit and eat together. On the days we do manage to eat at the same time, we notice it. We say, “We are all here together,” and that becomes the memory we hold onto.

Finding stomach cancer community and online support

At first, having this diagnosis is very isolating. You do not know where to go. My best friend was my first lifeline because she had gone through breast cancer. We talked almost every day. Outside of her, I started finding online support in stomach cancer‑specific groups and foundations. I joined groups where people have gastric cancer like me, including younger parents.

We have lost many people from those groups, and it hurts because they become like family. It is powerful, though, to connect with people who share similar circumstances; not just the same cancer, but also being young parents, dealing with caregiving, finances, fear, and all of it. Sometimes we talk about cancer; other times we talk about normal things just to feel human.

November is a heavy month in the stomach cancer world because it is Stomach Cancer Awareness Month, and also when we tend to remember and lose many friends. There was a woman named Rita whose situation really resonated with me. My kids are half Cantonese, and her kids were half Cantonese too. She left behind very young children. Those similarities hit you hard.

We also have regular support calls every couple of weeks. Recently, we found out that one of our sisters is going into hospice because there is no more treatment left. Knowing I am headed to that reality, too, at some point, makes it all feel very close. We cry together, pray for each other, and try to lift each other up while still respecting that no two people experience this the same way.

Time, identity, and redefining what matters

One big lesson from all of this is about time. Time is your biggest asset. I am very careful with where I give mine now. Texting someone back takes time. Taking a call takes time. If I am giving you my time, it means you matter to me. I tell my friends and support sisters that, and they understand, because they are living it too.

I also realized how easy it is to let cancer become your entire identity. In the beginning, I think I fell into that. You are searching for information and community, and everything in your life becomes about cancer. Recently, I have been trying to pull away from that mindset and remind myself that I was more than cancer before this, and I still am. I am funny, I am creative, I am a mom, a wife, a daughter, a friend. I am not just a patient.

When I am in the hospital three times a week, I allow myself to be “the patient” in that space. But when I go home, I sometimes tell my sister or my friends, “I do not want to talk about cancer today,” and that is okay. I step back from social media if it gets too triggering. I try to read, do something small that feels normal, or just rest.

Ultimately, it is about redefining who I am and what I want the rest of my life to look like, however long that is. That is true for anyone, with or without cancer. If you are not happy with your life, you can ask yourself why and start taking small steps. Things do not change overnight, but small wins matter. I celebrate the small wins.

My final message: forgiveness, kindness, and changing the world

If there is one thing that sums up what cancer has taught me, it is that you have one life to live and time is precious. Spend it on what and who truly matters. Try to be forgiving of yourself. When I look back at my life, I do not see mistakes as just mistakes; I see them as learning. I learned, I grew, I changed. Holding onto self‑blame does not help.

The most beautiful thing you can do is be kind and spread love. That starts with being kind to yourself. Many people are not kind to themselves, and that makes it hard to be kind to others. You do not have to change the whole world with some huge gesture or have millions of dollars. If you work on yourself and try to be a good person, that is how you change the world: one small act at a time.


Arelly R. stomach cancer
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Finding Peace in Hospice: Alyssa’s Stage 4 Stomach Cancer Experience

Finding Peace in Hospice: Alyssa’s Stage 4 Stomach Cancer Experience

If you have ever been to our YouTube channel, chances are you have seen Alyssa and her stomach cancer video on the home page. Millions of people have watched her story. Thousands have left messages of support or started conversations under the video to share their own experiences, ask questions, and talk honestly about cancer. Alyssa isn’t just telling her story. She’s helping create a community of people who could see themselves in her, who maybe felt more empowered and less alone because she was willing to be so open.

Most of the stories we share focus on diagnosis, treatment decisions, and what it looks like to live throughout care. Alyssa has invited us into a different chapter, one that many people are afraid to talk about.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal & Jeff Forslund

Since her original interview, Alyssa has gone through 38 rounds of chemotherapy, three rounds of immunotherapy, a total gastrectomy with part of her esophagus removed, and surgery to remove both ovaries and fallopian tubes. After exhausting all available treatment options and seeing her stage 4 stomach cancer continue to progress, Alyssa made the decision with her care team and family to begin hospice care at home.

In this new video, she talks honestly about what hospice means to her, how she is focusing on comfort, connection, and memories with her family, and why she still feels called to use her voice for others.

From the beginning, Alyssa and her care team were honest that the treatments were not curative, only meant to slow the cancer and buy time. As scans eventually showed further spread, she faced the reality that the treatments were no longer working for her stage 4 stomach cancer. Hospice became a way to prioritize symptom management, reduce pain, and focus on comfort and presence with the people she loves. Even as a young woman, she navigated the strange, often stigmatizing process of calling hospice agencies for herself and not for a grandparent, and she found a program that respected her and took her needs seriously.

Alyssa B. hospice update

In hospice, Alyssa centers self-care, connection, and meaning. She talks openly about planning her funeral arrangements to ease the burden on her family, recording videos and writing cards for her son’s future milestones, and savoring the little things, like skincare, makeup, and feeling the grass under her feet. She describes each new day as a blessing, often reflecting at night on how precious life feels now that time is so limited. Her hospice experience is not just about decline; it’s also about redefining strength as accepting support, asking for honest communication from her care team, and embracing the love that surrounds her.

Alyssa also uses her voice to advocate for more awareness and research in the stomach cancer community. By sharing her symptoms, treatment side effects, and hospice experience, she hopes to encourage earlier diagnoses, better options for future patients, and a culture where people with advanced disease are seen, heard, and honored.

Watch Alyssa’s video or read the transcript of her interview below to get an update on her story:

  • The importance of honest communication with the care team to help understand treatment options
  • Why hospice is not “giving up” but choosing comfort, pain relief, and presence with family after exhausting all available treatment options
  • How small acts of self-care become powerful tools
  • Why it’s okay to feel scared, sad, or guilty, and to seek support so you do not stay stuck in those feelings for too long

  • Name: Alyssa B.
  • Diagnosis:
    • Stomach (Gastric) Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Fatigue
    • Elevated resting heart rate
    • Heartburn
    • Difficulty swallowing
    • Weight loss
  • Treatment:
    • Chemotherapy
    • Immunotherapy
    • Surgeries: total gastrectomy; partial esophagus removal; bilateral oophorectomy and fallopian tube removal
    • Clinical trial
Alyssa B. hospice update
Alyssa B. hospice update
Alyssa B. hospice update
Alyssa B. hospice update
Alyssa B. hospice update
Alyssa B. hospice update
Alyssa B. hospice update

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.



Introduction and Summary of My Cancer Journey

My name is Alyssa. I was diagnosed with stage 4 stomach cancer in May 2023. Since being diagnosed, I have gone through 38 rounds of chemo and three rounds of immunotherapy. I have had my entire stomach, part of my esophagus, and both my ovaries and fallopian tubes removed. I have done a clinical trial.

I have also lost my ability to eat or drink anything. I have a complete blockage due to the cancer, so I was on total parenteral nutrition (TPN) for three months and then transitioned to a feeding tube, which I have had since March 2025 and is how I receive all my nutrition and hydration.

I have exhausted all lines of treatment that are available to me and with the cancer continuing to progress, we have decided to start hospice. I am now in at-home hospice care, which brings me to today.

How I Transitioned to Hospice Care

From the beginning, we knew that there weren’t any curative treatment options available and at a certain point, we would switch to hospice care. We just didn’t know how long we had. We knew how many lines of treatment we had available. My care team and I had the conversation that once we exhausted these options, hospice would be something to consider.

As we got closer and I transitioned to the final line of treatment, we asked, “What does this line of treatment look like? How long do we expect this to slow down the cancer?” Of course, we didn’t know exactly, but we wanted an estimate. Then we asked, “Once we realize that the cancer is continuing to progress, will we be switching to hospice?” They said yes, if that is what I want.

With hospice, the goal is to manage symptoms and make me as comfortable as possible as I prepare for my final transition. For me, that was a no-brainer. I want to be comfortable; there are no other options available.

I had some extreme pain in my abdomen that I had never experienced before. It was so severe that I went to the emergency room. When I was there, they did their workup, blood work, and scans. The scans came back showing that the cancer had continued to progress to other organs. We concluded that the chemo I was on was not working. Then we had to make the decision: What do we want to do next?

We weren’t going to continue with treatment that wasn’t working and since there were no other options available, I could just continue with life and let things happen naturally. Or I could utilize this great resource of hospice, where they focus on making me comfortable. They explained what that looks like. I definitely want to be comfortable. I’m in a lot of pain, so I’m ready for that.

They shared some hospice facilities that I could utilize. I was told to interview them, which was overwhelming because I thought, “How do you even begin to interview? I had no idea what I needed, what I wanted, or what I would need in the future.” The good thing is that my cancer center sent me a resource with some questions that might be important to me.

I called different companies, asked questions, and then chose the company that I felt best met my needs. That process was a little weird because I am so young. Calling these companies, I would tell them I wanted to set up hospice care for myself and explain where I am at. A lot of them would say, “Okay, so for your grandma, we are going to do this,” and I kept saying, “No, this is for me.” It brought me back to the realization that, yes, I know I sound very young, but unfortunately, this is where we are. It’s a weird process, but I feel at peace with it, knowing that it will make me as comfortable as possible.

Because I have had these conversations with my family, it has helped them be more comfortable and prepared them along the way. I would say, “Once we get to this point, it is hospice,” and now that we’re here, of course, it still feels heavy. It feels like this is the final chapter and that we’re down to the last days or weeks, if we’re lucky. It definitely feels heavy, but I’m grateful for my care team, my family, and my friends. Without all that support, I don’t think I would be handling it as well.

Why Open Communication with My Care Team Matters

Keeping the line of communication open is very important to me because I need to know that my care team is being transparent with me. I need to know that they are aware of what I want and what’s important to me, and that we are constantly on the same page. Things may change; I may start to feel differently, or things may change with my health, and we may need to discuss that. So open communication is very important.

I go into appointments with questions and they know I am going to circle back on what is important to me. They are often prepared and will say, “I went ahead and did this beforehand because I know you’re going to ask about this.” That makes me feel better as a patient, knowing that I’m not just a patient to them and that they care about me and what matters to me.

Coping with My Final Line of Treatment

Being on the last line of treatment available, I knew this was the final shot. This was the last thing we had to slow this down and buy me more time, which is heavy. I know that once you switch to hospice, that turn is very quick — from being up, moving, and talking to not talking, being in bed, and not being able to communicate with my loved ones. That makes me sad because I carry a lot of guilt with that.

I focused on self-care, self-love, and self-soothing during my last line of treatment. On chemo weeks, if I went in on Wednesday, starting Monday, I did all the things to help my mind prepare for the next round. Each round was so intense. It was painful and emotionally draining. I would choose some of my favorite foods. I’m not able to eat, but I would chew them and spit them out to get the flavor. I knew my taste buds would change once I was on chemo, so I wanted to get that in beforehand.

I made sure not to take on too many tasks or stress about cleaning and all the things that needed to be done. Those would be pushed to next week because chemo week is so intense. I know what I’m facing and I want to be in the best frame of mind that I can be. I focused on skincare, meditating, journaling, and lots of grounding. I love to stop on the way to get the mail and put my feet in the grass, put my arms up, feel the breeze, listen to the sounds of nature, and connect with what’s going on in the world.

Being present in those moments helped soothe my soul and ground me because there is so much out of our control. If I can do these little things here and there, it helps me feel better about the situation.

My Mindset Now That I’m in Hospice

It’s heavy being in hospice because I know we’re no longer doing anything to slow this down. There’s nothing available. I know my days are numbered even more than ever before and I feel like there is so much I want to do to help my family and friends. I want to leave videos and letters behind. I want to write cards for my son.

I’m going to be missing out on a lot of things, so I have cards for his 18th birthday and his high school graduation. I have so many things to fill out and write, but I don’t know how much time I have, so it’s a lot. It’s heavy, but I try not to allow that to stress me out too much because I don’t want to stress so much that I miss the moments. I am down to my final moments. I want to create memories with my family and enjoy every moment that I have.

Every day that I wake up, I think, “I saw another day. This is amazing. What am I going to do today? Who am I going to spend time with?” I have been very blessed. I have had a visitor every single day since I started hospice, whether that’s a friend, coworker, or classmate. People from different parts of my life have been visiting me every day. I feel covered in love and I am enjoying those moments.

It’s a lot, balancing what I want to do and not knowing how much time I have. I know it’s going to be a quick turn once I’m no longer able to do these things. Day to day, I try to take it one moment at a time. Nighttime is heavy because I reflect and think, “I just got another day,” and every night it hits me that life is precious. You feel the weight of that when going through something like this.

Creating Special Memories with My Son in Japan

From the time my son turned seven, he told me that he no longer wanted birthday parties and just wanted to travel places with me. At that time, I was a single mom, and I thought, “What do you mean no more birthday parties? You’re only seven.” I thought it was so sweet that he wanted that, so that year, we went on a little trip.

That was also the year I met my spouse and our dynamic changed. Now we were a family doing family trips, but we didn’t get to do a lot because life was crazy. It was one thing after another, and we wanted to save money and were struggling financially. We didn’t travel much, but we had a few trips. Traveling was always important to me and something I didn’t get to achieve.

When I was faced with cancer, it felt like it wasn’t going to happen. Then someone reached out to me and said he wanted to gift me something. He asked me to rank 10 places from where I would most want to go to least. He asked who I would want to meet and what was on my bucket list.

We met up and he surprised me with a trip for my son and me to go to Japan for a week. That meant everything to me, to have the opportunity to go out, live life, and step away from everything that was going on. We had been living with this diagnosis for so long. Even though we tried to enjoy our time together, there was no escaping it; it was always there. In that moment, I got to escape. I was able to go to another country, something I thought I would never get to do, and I did that with my son.

We got to see the beauty of Japan. It was so peaceful. We rode a helicopter over Tokyo and had so many great experiences. I had been struggling with bone pain and fatigue with everything going on, but while I was there, I didn’t experience any of that. I was pain-free. I was so happy. We embraced the trip and each other and made beautiful memories. I didn’t think about cancer or how much time I had left. I got to live and be in the moment with my son, which is something we will cherish forever.

What I Hope People Remember About Me

There are so many moments. There are big moments in my life that are important to me: my son being born, getting married, and our recent vow renewal. But as far as what I hope others remember, something that has been important to me throughout my life is leaving a positive impact on others, in whatever way that may be.

Whether it’s inspiring people to go after their dreams or encouraging them to advocate for themselves, I wanted to be someone who left some type of positive impact, even in the smallest ways. I hope that when people think of me, they remember that.

How Online Support and Kind Words Have Helped Me Keep Going

I cannot express enough how much kind words have meant to me. They have lifted me during some of my deepest struggles. I try to stay positive every day, but oftentimes, I feel weak and tired. There were times when I was scared and felt like my body was failing and there was nothing I could do.

Then I had people reminding me: You are strong. You are doing this. Even though you are struggling, you are still in it and that makes you strong. They would say that coming out and sharing this with the world makes me strong. Some people reminded me that making a video takes energy. I had to pause and think about that because it does take energy. I have to prepare and afterwards, I’m exhausted.

For me, it felt like something I was called to do, so I didn’t think about the energy cost. Having people remind me and lift me, telling me that I am strong and inspiring, helped me to continue to be strong, to fight, and to stay positive. That was important.

It’s okay not to be okay and to struggle. But I never wanted to allow myself to stay in that struggle too long because I knew that would be additional stress on my body, which weakens the immune system. My goal was to try to be as strong as I could be because that could buy me more time.

I’m incredibly grateful for all the support and love I have received over these years.

What I Have Learned About People and the World

I have learned that there are so many amazing people in the world who are very selfless. The way they have given their time, energy, and resources, and taken moments to share kind words with me, is something they didn’t have to do. There are so many people willing to do that simply because they care.

My vow renewal was especially eye-opening because it was completely gifted to us. Over 20 vendors gifted their time and resources. We had food, a DJ, photographers, and so many amazing people who made it a dream come true. None of them had to do that, but they chose to make that day special for my spouse and me. That restored my faith in humanity and showed me how selfless people can be. These businesses need money to operate, but for them to give like that to a complete stranger warmed my heart.

Tomorrow is not promised. We never know when our time is going to be up, so it’s important to prioritize what’s important to you.

Family has always been a priority. I always wanted to take trips with my family, but I kept saying I wanted more savings built up or to pay down debt first. I feel like I lost out on a lot of time when I could have made many more memories. I don’t want to say I regret it, but it is eye-opening.

Book the trip. Do what you want. Don’t wait until some “perfect” time. Things can be figured out. Prioritize what’s important to you. If it’s important to make these memories, you will find a way. Don’t miss out because you think you need a little more saved. Go after it. You will be grateful you made those memories.

Why I Started Sharing My Story Online

I was diagnosed after two years of going to the doctor and not having answers. During those two years, I was trying to research what was going on and what it could be, but I wasn’t finding anything. After being diagnosed, I wanted to know what to expect next, but I still wasn’t getting many answers. It’s a complex question, but even with research, I couldn’t find much information about stomach cancer or the treatments.

I felt called to share my symptoms because I thought, “This is an unfortunate situation, but how many other people are having these vague symptoms and not getting answers? Maybe by sharing my symptoms, I could encourage someone to push a little harder, ask for a second opinion, or ask for additional testing. Even if it doesn’t lead to a cancer diagnosis and they find out it is something completely different, if I can help one person, it will make this all worth it. As much as it sucks, I do not want this to happen to anyone else.” That was my “why” in the beginning. I wanted to help anyone I could.

After my videos took off, I started updating people about what it looked like going through chemo and what happens when the unexpected happens, like when my liver enzymes spiked. What do you do when that happens? I don’t know everything, but by sharing what I experienced, I share what I have learned in my particular case, which could help others.

I kept feeling called to keep sharing, piece by piece. I received great feedback from people thanking me and telling me how it impacted them, along with people asking additional questions and wanting to know more. That is why I continued.

Looking back, I never thought it would become this, but I’m grateful that I have been able to reach so many people and hopefully help many throughout all of this. I cannot change my situation or circumstances, but if I can help one person, that will make this all worth it.

A Message to the Stomach Cancer Community

I would tell the stomach cancer community that we are the future. Stomach cancer is so underfunded, which is why we cannot get the necessary research. It’s insane that there aren’t more treatment options. It’s crazy that some stomach cancers cannot be seen on imaging. Many people have never heard that before.

If we cannot observe this through imaging, why haven’t we come up with a better way to follow this? Without that, how do we know how bad things are getting and how fast they’re progressing? For the stomach cancer community, the more we speak up and share, the more we can fight for a better future, not only for ourselves but for anyone else who may be impacted.

We can use our voices to push for more research and more funding. A lot of people don’t know this information, but when we share it, it might land on the right person who says, “I want to invest in this. I want to look into this further.” We hold so much power that we do not realize we have. It shows in how many people I have been able to reach and help simply by posting and sharing. There is power in numbers. If we all continue, we can hopefully see a better future for those impacted by stomach cancer.

What My Days in Hospice Look Like

As of now, I still have quite a bit of independence compared to others who may have entered hospice. I’m very lucky that my mind is still alert and that I can express what I want.

I have a nurse and an aide who both come weekly. The aide helps with bathing and things like that, while the nurse stays on top of my medications and asks how I’m feeling. As things continue to progress, those visits will increase in frequency.

My son is with me every day. He is homeschooled and we made that decision so we could have more time together, which has been great. My spouse is here, too, but he works long hours five days a week, so we try to make the most of the time we get together.

I have a visitor every single day. At least one family member, friend, coworker, or classmate comes to spend time with me. I see different people every day and I enjoy reconnecting with them. We take pictures and create more memories.

A lot of what I do depends on my pain. I’m in a lot of pain. I’m in pain 24/7 now. I cannot remember the last time I was without pain. It’s at a tolerable level most of the time. It spikes at times, but I have medications to help. Regardless, I’m constantly in pain and have to plan my days around it because I never know how I will feel. I might start the day feeling great and then suddenly feel horrible and be unable to do anything else for the rest of the day.

Recently, I have been trying to keep the house tidy and slowly set up my Christmas décor because I love Christmas. My son and I set up the Christmas tree. I did most of it, but didn’t put the star on top, and then needed a break. I make sure to take breaks. Family and friends offer to get me out of the house to do things I want to do. If I need a few things from the store, my mom offers to pick me up and take me, even if it’s a long drive, because she wants to support me.

I’m not doing a lot of moving around, but I’m enjoying the time and memories I’m making with my friends and family.

How Makeup, Self-Care, and Community Help Me Feel Like Myself

I still do my makeup. I love makeup and feel like it is a form of self-care, just like skincare. If I’m able to do it, I like to. Recently, I have been getting on TikTok Live and doing my makeup while chatting with my friends and supporters.

As I get ready, everyone joins and says things like, “We love you! How are you feeling?” It’s so nice to have all of that while I’m also pouring love into myself by doing my makeup. They ask me about the products, so I feel like I’m in my influencer era. I always wanted to be a makeup artist, so I feel like a little makeup artist, even if I am not officially one.

Being able to do anything for yourself — taking a shower, doing skincare, doing your makeup, fixing your hair — makes a huge difference.  Kind words from others can make someone’s day. If you see someone and tell them that you love their hair, they might have been having a horrible day, but now you’ve made them feel better because you took the time to say something you didn’t have to say.

Living with Guilt and Trying to Ease My Family’s Burden

I have come to terms with the fact that guilt is something I will always carry, but I also know deep down that I did not cause this. I know it’s not in my control. I still carry guilt because it’s happening to me and I see my family watching me and hurting because it is happening to me. I feel like I’m putting them through it, even though I know that I’m not. I try to remind myself that it’s not in my control. There’s nothing I did to cause this and there’s nothing I can do to undo it. I try to do little things to make myself feel better.

One thing I’m doing now is planning my funeral arrangements. If I can take that off their plate, I feel like that is the greatest gift I can give them right now. When the time comes, it will be heavy. If they can focus on grieving and being there for each other instead of answering a million questions about what I would have wanted, I think that would be amazing. I try to do things like that to bring them peace and comfort. It doesn’t erase my guilt, but it makes me feel a little better. Anything I can leave behind for them — videos, letters, or anything to make this easier — helps ease that feeling a bit.

How My Faith Shapes the Way I Think About Death

A lot of my perspective comes from my faith. I have known from a very early age that the only thing we are promised in this life is death. This was always going to happen; I just didn’t know when or how. I still don’t know exactly how it will happen because anything can happen in the next few days.

Death is a very normal thing and something that will happen to all of us. It’s heavy, but if I can talk to my family about how I feel about it, it helps. I’m at peace because, as much as this will hurt and be heavy for them, I also believe I will be in a better place. I know it sounds cliché, but I truly believe I will be without pain. I will have beaten cancer. I will be done with it. My family will no longer have to watch me suffer. Those are things I look forward to.

I don’t know what the next life looks like, but I believe it will be more beautiful than I can imagine and that I will be at peace. By sharing that with my family, I feel I have brought them peace and comfort. Sharing this with others who have family members going through something similar or who are in hospice for whatever reason might help them consider that their loved one might feel similarly. We often struggle with hurting for the person going through this transition, but a lot of it, for me, is faith and acknowledging that, as much as it sucks and as heavy as it is, there is still beauty within it.

Why Having Platforms and a Voice Matters to Me

I’m very grateful that I have a voice and that I’m able to share this. I have thought about how meaningful it is that I was able to be on this platform and share my symptoms. Then, share a follow-up after we did the trial that we hoped would find a cure, but it did not. And now share about transitioning into hospice and preparing for my final transition.

I’m grateful that I still have the opportunity to be here and share this because that’s not always the case. My initial prognosis was 2 to 11 months, which is not a lot of time, but here we are, 2 ½ years later. I am grateful for that extra time and the opportunity to share what I have been going through.

Sharing is how I show my gratitude. I did not live quietly. I decided I was going to do something meaningful with my time and try to help others. Now, as I get close to my final transition, people ask if I am scared; I’m not. Being able to share what I am feeling is amazing and I hope it continues to help others.

I’m grateful for all the platforms, including The Patient Story, for giving me the opportunity and the space to share this. We touched on so much — living life to the fullest, advocating for yourself, and how precious life is. Those are the main messages I wanted to get across. I cannot think of anything else to add.


Alyssa B.

Alyssa’s First Video

Alyssa’s story starts in 2023. Learn more about her symptoms, diagnosis, and treatments as she learned she had stage 4 stomach cancer.

Watch now.


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Categories
Chemotherapy Lobectomy Patient Stories Sarcoma Soft Tissue Sarcoma Surgery Synovial Sarcoma Treatments

Finding Light Through Advocacy in Stage 3 Synovial Sarcoma: Sorcha’s Experience

Finding Light Through Advocacy in Stage 3 Synovial Sarcoma: Sorcha’s Experience

Before cancer entered her world, Sorcha’s life in El Paso, Texas, was full of family, engineering work, and hands-on creativity. She spent her days as a mechanical engineer in the oil and gas industry and her evenings quilting, crocheting, or making friendship bracelets with her young daughter. Their bond showed up in bright, memorable moments, like planning a Taylor Swift concert trip together and crafting bracelets in anticipation. It was within this full and grounded life that Sorcha first began navigating what would become a diagnosis of stage 3 synovial sarcoma.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Before her stage 3 synovial sarcoma diagnosis, Sorcha’s days were defined by work, parenting her daughter and son, and finding joy in movement and learning. She went to New Orleans for a Taylor Swift concert, which she remembers as a safe, joy-filled space, especially for girls, women, and families. She, her daughter, and her sister immersed themselves in the music, traded hundreds of handmade bracelets, and created memories that would later stand out as a “protected, beautiful time” just before everything changed.

Sorcha B. synovial sarcoma

Soon after, Sorcha began noticing symptoms: right-sided abdominal pain, changes in her breast, and a frightening episode of vision loss in her right eye. Despite seeing multiple doctors and being told the symptoms were likely stress or migraine-related, she continued to push for answers. Her stage 3 synovial sarcoma experience quickly became one of self‑advocacy as she tracked patterns, returned to primary care, and insisted that seemingly “unrelated” symptoms might, in fact, be connected. Eventually, severe pain, nausea, and vomiting led her to the emergency room, where a chest CT revealed a large mass.

From there, Sorcha moved into an intense treatment path that included chemotherapy and protective medications to shield her kidneys and bladder. She describes the shock of sudden hair loss, shaving her head with her kids at a local salon, and the mounting fatigue and cognitive effects that linger even now. Yet she also highlights support from friends who flew in before surgery, an employer who offered housing during treatment, and a tight “village” of long‑time friends who celebrated “No Mo’ Chemo” with a beach photo shoot. Through it all, her stage 3 synovial sarcoma experience is defined not just by medicine, but by motherhood, community, and a fierce commitment to self‑advocacy.

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

  • Strong self‑advocacy helped Sorcha push past initial “it’s probably stress” responses and eventually get imaging that revealed her synovial sarcoma
  • How small, joy‑filled experiences became powerful emotional anchors once symptoms and treatment began
  • Maintaining a “village” of long‑time friends across multiple moves created a support system that showed up in tangible ways
  • Learning that patients often need to trust their own sense that “something is wrong” and keep asking questions until their concerns are fully addressed
  • How Sorcha’s perspective shifted from simply enduring treatment to intentionally using her time and health to be present with her children and to share her experience to help others

  • Name: Sorcha B.
  • Age at Diagnosis:
    • 36
  • Diagnosis:
    • Synovial Sarcoma
  • Staging:
    • Stage 3
  • Symptoms:
    • Right upper quadrant pain
    • Changes in the right breast
    • Temporary vision loss in the right eye
    • Nausea
    • Vomiting
  • Treatments:
    • Chemotherapy
    • Cytoprotective therapy: mesna
    • Surgery: lobectomy of the middle lobe of the right lung and associated ribs and soft tissue
Sorcha B. stage 3 synovial sarcoma
Sorcha B. stage 3 synovial sarcoma
Sorcha B. stage 3 synovial sarcoma
Sorcha B. stage 3 synovial sarcoma
Sorcha B. stage 3 synovial sarcoma
Sorcha B. stage 3 synovial sarcoma
Sorcha B. stage 3 synovial sarcoma

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.



My Name is Sorcha

My name is Sorcha. I was diagnosed with stage 3 synovial sarcoma at the beginning of 2025, and I live in Texas, in El Paso.

I am a mechanical engineer by degree, and I work in oil and gas. I have worked at the same company my whole career. I’m passionate about learning. I’m curious about the world and the people around me. I think the stereotype of mechanical engineers is that they do stuff with cars. I don’t do anything with cars. I like to make stuff with my hands, though, so I enjoy crafting, arts and crafts. I quilt, crochet, knit, and make friendship bracelets. I’m a big Taylor Swift fan and so is my daughter. I am married with two kids. I have a daughter who is six and a son who is four. I also like to read and lift weights. 

Taylor Swift Trip to New Orleans

That trip was on Halloween weekend, which, if you’ve ever been to New Orleans around that time of year, it’s like festival season but spooky. There are a lot of locals, music, and artistic expression. It’s such a cool city for a ton of reasons, but also very cool to be there the week of Halloween, and the concert was that weekend. I went with my daughter and we got the tickets a year beforehand, so we had made our costumes. It took about a year for me to make my costume. It was very intricate, and my daughter went from knowing the songs to knowing all the lyrics to all the songs because she’s developing and growing up, so it was so cool. It was a fun mother-daughter time.

We handmade hundreds of bracelets together, and then we got to hand them out and trade them with people in New Orleans. We have a little memory box with all of our bracelets. She has a whole bunch in her room, but those are the ones that I have little memories about.

My sister came down. It was a cool experience. That whole concert vibe is very girlhood. It’s safe. Everyone’s so positive and kind, and it was a great experience for my daughter. It was a whole bunch of moms and sisters and kids and women of all ages, also some men, too, but just a very safe place for her to experience the city for the first time. It was a beautiful experience.

I went to the emergency room for the first time a little less than a month later, so it stands out for me as this gem of this protected, beautiful time before I became ill. 

Girls’ Beach Trip and No Mo’ Chemo

As part of my career that I’ve chosen, I’ve moved a lot. I’ve probably moved, I want to say, seven times. It becomes important not to rely on an external village. You need to make your village. I think part of that is making sure you maintain strong, connected, intimate friendships even as you move. That takes work and effort, and it has to be reciprocated.

This group of girls, not all of them are there in that picture, but that group represents that village of adult friends I’ve had now for, I mean, a couple of the girls since I was two or three, and I think the newest friend I have is maybe 12 years ago. They’ve been extremely supportive through this whole experience. We wanted to celebrate the end of chemo, so we did a “No Mo’ Chemo” photo shoot and had my family come in right after. We actually had a photographer take pictures and memorialize that experience of being done with being sick and turning the page towards surgery and recovery. 

Wigs and Hair Choices

Everyone thought I would wear wigs, I think, so it was a little bit like, hey, wigs are cool, wigs are in. But I never did. No shade or hate to anybody; I just found them a little bit itchy. So it was kind of fun to wear them for the first time and then be neon, you know. 

Early Sarcoma Symptoms and Dismissed Concerns

I would say in the summertime, maybe July, I had some right-quadrant pain. It was dull, aching pain over the course of a few days, with some sharp stabbing pains. It lasted for a couple of days and I thought, “That’s kind of weird. Maybe I hurt myself. Maybe something happened.”

A few weeks later, I had the pain again, except it was bad enough that I couldn’t sleep. It affected my sleep, and the sharp pains were really sharp. I was on Google asking what it could possibly be and came up with it’s probably gallstones. I had lost weight. I’d finished nursing my kids and was coming back to my normal weight, so maybe that’s what it was. That was around July, and then I had the pain again. 

Along with that, I had had a couple of other symptoms and I thought they were unrelated. I thought I felt something in my right breast. Something seemed different. Something seemed off. I went and saw a gynecologist to check me. He said he didn’t feel anything. Everything felt normal. I was like, “Well, one of these feels different. My right one feels like something’s off with it. I can’t really explain why; it feels higher or something.”

Around then, within those weeks, I lost vision in my right eye while I was getting ready for work. It was as if you stared into a light and you can’t see for a while, except it didn’t recover and my eye looked normal. My pupils were equal and reactive. I saw several doctors. I saw the gynecologist, an optometrist, and an ophthalmologist about my eye. They said I was probably having a migraine. I didn’t have a headache, but they said an aura around a migraine can result in that vision loss. After seeing a few doctors with all these unconnected things, it came down to I was probably stressed out. 

Primary Care, Tests, and ER Referral

Then I had the pain again in August, and I went to a primary care doctor and said, “Hey, look, I’m having A, B, C, X, Y, Z. I know I’ve been told by other doctors that [they] are unrelated. I think they’re related. I think there’s something wrong.” She took me very seriously. She ordered a whole bunch of tests. She ordered a head CT. She ordered an ultrasound of my gallbladder area, just checking on that. I also saw a gastroenterologist.

All my tests came back normal. All my blood work was normal. My head CT looked normal. Although my doctor was very supportive and said, “I agree, if you say there’s something wrong, there’s something wrong, maybe it’s something hormonal. Let’s meet back again in six months and see if anything has changed. But in the interim, if you experience this pain again, immediately go to the emergency room because they may be able to image and see if there’s some intermittent thing happening. They may be able to see it while it’s happening.”

Emergency Room Visit and Mass Discovery

That was in August. September, October: Taylor Swift concert. Towards the end of November was the next time I had the pain. I had discomfort, pain, and nausea at work after eating a meal, which again sounded consistent with gallstones. I went to see our LPN, and whenever he was probing around to see if everything was okay, I started vomiting and I couldn’t stop. Concerned that this might be something cardiac or more complex or serious, I went to the emergency room. At the emergency room, I was triaged and waited several hours to be seen. 

Once I was seen, again, scans were showing nothing. I said, “Hey, I really think something’s wrong over here. Can you please look over here, see if you see anything?” They went back and consulted and said, “Okay, we might see something. If you’re saying you’re having pain there, we see a little, it might be a blood clot. We can’t really tell. We’ll do a chest CT.”

Once the chest CT was done, everyone’s mood changed. I wasn’t given the results immediately. I have an idea of how long the results should take. They said, “We’re going to wait. We’re going to put you in a room.” I had just been behind a curtain before then, so I thought a room opened up. They put me in the room. I think they were trying to be very considerate of my feelings and my experience, but they put me in the room privately so that they could tell me that they found a large mass and it didn’t look good. 

Timeline to Official Diagnosis

I had an emergency room visit where they found the mass, and then we drained the fluid, re-inflated my lung, biopsied the mass, and then they tested the biopsied tissue. I was diagnosed on January 2nd. My ER visit was around Thanksgiving, and my diagnosis was in New Year’s.

Hearing the Diagnosis and Treatment Plan

What’s crazy is I knew what it possibly could be, and I had self-referred to the sarcoma group at MD Anderson before even having the FISH result that confirms sarcoma. So I knew that this was a significant chance, but I hadn’t done any research into what the treatment protocol would be because it’s so different based on your individual case. It basically went, “Hey, yes, we have this result, you have synovial sarcoma, you have this high-grade malignant mass that makes you stage 3, we need to start chemo immediately, it’s going to be really bad, you’re going to get really sick, and you’re going to be rendered infertile. So, are you done having kids?”

In their defense, they’re not saying this stuff boom, boom, boom, but the experience of it is like, “Oh, that’s a lot of information,” trying to take it in. She said, “If you want to have more kids, we need to freeze these eggs now, and we need to get you in here next week to start chemo. You’re going to be out of work for six months, and then you’re going to have surgery, and it’s going to be this significant surgery.”

I was clinical in my response. I was like, “Yep, I’m done having kids, that’s perfect. I’m young, I can handle difficult chemo, but I’m old enough that I already have my children. Okay, perfect. We live close to MD Anderson.” I was responding in a very unemotional way, but I think that I just wasn’t able to experience the emotions in the moment. 

Telling My Husband, Parents, and Friends

My husband was with me in the room the first time. At first, we were amongst ourselves, like, “It has to be benign, it has to be benign. I’ve never smoked. I work out. I eat healthy. I’m a healthy person. Of course, I don’t have cancer.”

When I found out that they had ruled out a benign mass, I came in and woke him up and told him it was cancer. I think we were both surprised, asking the same questions over and over again, like, “Well, why? You don’t do any of this stuff that makes a risk factor.” But that was his biggest shift, realizing that it was cancer.

The actual diagnosis of the sarcoma and the treatment protocols were more intense than I expected, but we didn’t know that much about what cancer patients go through. Most of my friends who had had cancer had had skin or breast cancer that was mild enough not to affect their life or their appearance significantly during the treatment, just because of the type of cancer they had. 

I called my boss on the way home and said, “Hey, I have to be out of work for six months. I need to leave immediately.” He said yes and even offered his home to me. They had an apartment that his wife and daughter were using while she was in her last year of high school, and they offered to let me stay there while I was going through treatment. That was generous and helped support me a lot. 

Then I called my dad. He was distracted and packing and said, “Hey, can you call your mom? I’ve got to get this done.” I said, “No, it’s serious. Can you sit down for a second?” I told him, and I asked him to call my mom first so that she could have a reaction to it and not feel like she had to not react to protect me or something.

My dad’s an engineer. My mom’s more like a biologist-artist type. That just felt like the right way to do it. Then, everybody else, I sent a text message that said, “Hey, I have cancer, and here’s this three-paragraph-long thing of all your questions answered. I pre-wrote it with everything and put it in my notes.” Everyone got the same message. This is what I’m comfortable with you sharing with others and this is what I’d like you to wait to share. So I guess being my friend is kind of a wild ride. You might get that text one day, I don’t know. 

Researching Care Teams and Protocols

I reached out to a few places. One place in the Northeast, I’m blanking on what it’s called, and I self-referred to Mayo Clinic and MD Anderson. I called a few people I knew and trusted. I reached out to my family and said, “Who do you know that works in oncology? Who do you know that knows about clinical trials or knows about this type of cancer that I believe I have?”

I wanted to understand who is most respected. I did a lot of research going into it before I had that January 2nd meeting, not so much about what protocol they would prescribe, but which care teams are respected and have the most options and the most robust systems for support.

The care team came in and said, “This is what it is. In general, sarcoma is resistant to chemo; you’re going to have to have an intense chemo regimen. Our goal is to prevent or reduce the chance of recurrence.” They were transparent that this is not going to solve my cancer. This is going to make it less likely to recur. It probably will come back, but this is going to hopefully make that further away or less likely. 

They were direct with me and clear about the chances and the intent behind each portion of the protocol and the surgery. They recommended that I reach out to other people. They said, “Here are your scans. Here’s your information. You can send it to these people or whoever you choose and see what they recommend.”

I had also seen a local oncology team in El Paso, and they said, “Full disclosure: we see certain types of cancer, and this is a really rare one. This is really aggressive. You need to go to the best in the country, and we’re not them. But here are different people to talk to.”

Everybody recommended pretty much the same protocol. All of what the best people in the industry recommended was consistent, so I didn’t have concerns around that. I felt like all my questions were answered. When it came to deciding whether or not to do portions of treatment, I decided to do every step that would increase my chance of success and decrease recurrence, and I had the benefit of having no risk factors that would preclude me from doing those things. 

Chemo Before Surgery

I got my PICC line put in on January 13th, which was great, and started chemo around January 15th. I was on a pretty heavy dose. I think it’s called doxorubicin; it’s called Red Devil as a slang term. I had that on Mondays. Then I had four days of what’s called AIM treatment, basically a chemo that’s formulated for your size, spread out over however many days they need to give you your dose.

Then I had a Mesna bag, which is a continuously pumping bag that provides protection for my kidneys and bladder. The Red Devil is cardiotoxic and can be, I guess, brain toxic, so there’s medicine for that, and then I had the bag the rest of the time to continually flush my kidneys and bladder to help protect those. That would be a week of that, a week of feeling like crap, having all my levels go down — my red blood cells, white blood cells, and platelets — and then a week of trying to get back up into a range where I would qualify for chemo again. 

It was that three-week cycle. I think I had six of those for 18 weeks. It ended up taking around 20 weeks because I wasn’t always able to qualify back towards the end of my treatment.

Hair Loss and Shaving My Head

It was crazy how fast my hair fell out. I thought weeks in, I was going to start having hair fall out, and it was not like that. I think it’s that Red Devil; I think that’s what most people experience. It came out in clumps. I had long, thick hair, so I’m used to being able to play with my hair, pull on it, braid it, and it keeps on ticking. But I would run my hands through my hair and hair would be falling out everywhere, even my body hair falling out, which was weird. 

When I was having all the clumps fall out, I was getting big bald spots and my part was super wide. There were big sections with no hair. I’d already cut my hair short coming into this, and I decided that the next time I was home — because I was trying to see my kids on my recovery week for the two days before I went back to restart chemo — I would like to shave my head since it looked like it was all going to fall out. That was after my first cycle.

I had my kids shave my head at a chain place that does free haircuts for cancer patients who are transitioning, so that was free of charge. They let my kids hold the clippers. My son didn’t want to, but he watched. I just wanted it to feel not scary, not for me to come back and look completely different. The hair was the first thing. I didn’t feel so bad at first, but each successive chemo cycle, each time I did chemo for a week and then recovered, it got worse. 

Chemo Side Effects and Lasting Impacts

I was more sick. I had cognitive impacts from the Red Devil, like I didn’t know where I was or couldn’t think. I still have that. I have memory issues now, short-term memory problems, and it feels like a lot of my memory during that time was wiped. Almost all the stuff they list — fatigue, nausea, weight loss, weight gain, bloating, sensitive skin, hair falling out — you have at least some of it. 

The thing that I didn’t experience, which I’m grateful for, is pain from the shot to stimulate T cell growth from my bone marrow. Bone marrow reproduces rapidly and is disproportionately impacted by chemo, hence your white blood cell, red blood cell, and platelet counts go down. You get this shot to stimulate T cells to get you some white blood cells. A lot of people have a lot of pain with that — acute pain — but I didn’t have any, so I was grateful for that.

Anticipation and Strategy for Surgery

I was excited; I was so excited for surgery. I knew there was potential for a negative outcome, but it felt like no matter what, it was probably going to be better after surgery in some way. Two of my best friends came in town — one I’ve known since I was two, and one I’ve known since sixth grade — and they stayed with me before surgery so I could say whatever I was feeling, just be honest, just experience it and not be performative.

On the day of surgery, I felt like I was informed about what the doctors were going to do. I felt supported by the care team. I asked a lot of questions and all my questions were answered beforehand. I was concerned they could go in and decide they needed to remove my whole right lung, which would have reduced my lung capacity and put strain on my heart, which was already affected by my chemo. That affects how you move around through the world and what other illnesses down the road may do to you. I knew there was this domino effect of how bad it was going to be when they got in there.

They were going to remove it en bloc, basically take everything out that it touches, plus a range around it. I knew it could affect my pec muscle and my breast — my pec muscle is function, and my breast is form, aesthetics, ego, and self-image. I knew I’d be waking up bald with no lashes, so I was like, “Okay, hopefully it’s the least scope possible.”

Surgical Outcome and Sharing Tumor Photos

When I woke up and they said they’d only taken one lobe of my lung and we thought they had clear margins, I was so thrilled. I was so excited. I felt so happy. The first thing I told my mom was, “Okay, now I can sign up for a marathon next year and do that. We’ll see.” It might be a walking marathon because I’m actually not that into running; I don’t know why I said that.

The reason I chose to share [tumor photos] is that I’d be super curious if someone said, “I had this tumor removed and it was this big.” I’d be like, “How big? How vascular was it? Where was it?” I have those questions, so I felt comfortable showing someone. I also thought it was cool that two ribs were involved. I thought it was cool that we have technology to still help me be fine with that.

Sharing on TikTok and Helping Others

After sharing my story on TikTok, I had a couple of people reach out and say, “What you’re describing, I experienced that, and I went to a doctor, they said it was fine. They ran my blood tests and they said it was fine. What should I do? What do you think?” I said, “I’m not a medical professional. I don’t have any medical training at all. But if you feel like your questions aren’t being answered by the doctor you saw, I think you should go see someone else and write down what you’re going to say and the questions you’re going to ask before you go in, so you feel less confused and more confident. This is what I asked for in your situation, but, obviously, yours might be different.”

Two people got back to me, saying that they had found out they had cancer. I’m sure thousands of people saw that video, but that was moving to me. It felt like even if there is a little bit of discomfort, I’d rather share my experience and hopefully one person gets a diagnosis a little bit earlier, so they have more options and treatment. That first video was before surgery, and that was part of what drove me to do my video after.

NED Status and Upcoming Surgery

I don’t think I’m in remission yet. Maybe I don’t know the right words, but I was allowed to go back to work. I went back four weeks after my surgery. I had scans after three months and my scans were all clear. I’m NED, or no evidence of disease. I have surgery scheduled next weekend on November 1st. I think after five years of being NED, I’m considered in remission, but I think that’s how the words work.

The surgery I’m having is a reconstruction. Not cancer-related. Just repairing and helping, hopefully, maybe some scar tissue adjustments.

My Biggest Emotional Challenge

I think the biggest challenge is the mortality aspect of it, the knowledge that no matter how this goes, I’m less likely to survive as long. I’m more likely to have a more complex health outcome if I live to an older age and have something else that’s just normal that happens to older people. It’s going to be more complicated because of my history.

There’s a chance it comes back and next time, it’s not something that can be surgically removed. I’ve already had the lifetime maximum dose of the Red Devil chemo, so I can’t have that again, and that’s one of the more effective treatments.

The thing that I struggle with is that my children didn’t do anything. They didn’t do anything to deserve to have a mom with cancer. I hate that they’ll be negatively impacted by my diagnosis. I don’t want them to wonder if their mom will be at their wedding, their high school graduation, or hold their first child. It’s not as much about me and what I may or may not experience, because I don’t worry about that. I just don’t want them to miss out on something or not have the support that they deserve. 

Parenting Through Treatment

To a pretty significant extent, it’s been a huge blessing to have children because it made all of this so easy, all the decisions so easy. I was going to do the hardest chemo. I was going to do the surgery. I was going to do all of it because there was no other option. After all, I needed to be there for my kids.

Maybe if I didn’t have those motivators, I would have thought longer or taken a little bit of time, or maybe I wouldn’t have gone back and asked for answers as many times as I did. But my health was more than just myself; it was for my kids. They responded in different ways to the stress of my being gone and being sick, but I don’t think they ever worried that I would be there. They were just sad at how long it was between seeing me. In that way, I was successful as a parent in protecting them from a lot of the worst parts, the uncertainty. I don’t think they felt that much. They were a very important part of my ability to move through the treatment.

Meaning of Survivorship

I guess technically it means living, right? I think it means using the time that I have and the health that I have in the best ways that I can, and never forgetting or letting go of that sense of vulnerability that allows me to appreciate my life and my kids as much as I do now. I think I took a lot for granted. I was hard on myself in ways I didn’t need to be. So I think, it sounds perverse, but I desperately want to hold on to some of the realizations that this experience has given me.

Hopes, Dreams, and Everyday Goals

I don’t think I have huge new dreams. I want to be a better friend. I want to be a better mom. I’m starting to think about giving myself a year from the date of my surgery to push myself in certain ways. I do want to do a marathon; I think I want to do it walking. I want to travel. I want to do an international trip. I have it planned a little bit. Between work and kids and everything, I want to do that. I want to be more in the moment and less in my own head, thinking about what the next thing is. I think I robbed myself of a lot of joy in fellowship with other people or being with my kids by thinking about the next thing I needed to do. That’s what I want to hold on to.

My Advice and Message to Others

My biggest message I would want people to take away is that of advocacy, self-advocacy, and trusting yourself. If you think something is wrong, you don’t think you’re getting the answers you need, or you don’t understand what you’re being told, ask again. Advocacy is not about being a pain. There’s nothing inconvenient about needing answers when you have something suspicious going on in your body.

I think that’s so important, especially in women’s health, because there are so many things going on between hormones and changes in life stages that can affect the way that you experience your own body. Those things don’t have to be mysteries. There could be something else going on. In my case, several of the doctors I saw were looking for horses. I joked with my mom: they were looking for horses, but it was a zebra. You have to keep asking questions and keep advocating for yourself.

My Thoughts on Mental Health and Hope

I don’t know that this is part of my story necessarily. It feels like it’s part of everybody’s story. Just the importance of mental health hand in hand with physical health, and not toxically positive, but a positively-oriented attitude. Visualizing success, making sure that you’re using resources that are available to you, and setting goals that are external and outside of your cancer treatment and diagnosis. Choose a concert you want to go to eight months after your diagnosis and start making plans and outfits. Whenever you feel bad, don’t feel like you have to hide it. Make sure you’re asking for help.


Sorcha B. synovial sarcoma
Thank you for sharing your story, Sorcha!

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Categories
Chemotherapy Clinical Trials Debulking Desmoplastic Small Round Cell Tumor (DSRCT) Patient Stories Radiation Therapy Radioimmunotherapy Rare Surgery Treatments

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

When he was 21, Hunter balanced the roles of a full-time 911 dispatcher, a son and friend, and a gamer. But he was about to experience a rare and intimidating diagnosis, desmoplastic small round cell tumors (DSRCT).

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

When symptoms first appeared in late 2023, including sharp abdominal pain, nausea, and vomiting, Hunter initially brushed them off. But within days, an ER visit revealed abdominal and pelvic masses. That led to a biopsy at the University of Kansas Cancer Center, where he finally heard the frightening and alien words “desmoplastic small round cell tumors.” The internet offered its usual blunt statistics, but instead of letting fear take over, he chose to focus on the possibilities of treatment and the hope that lies beyond numbers.

Hunter D. DSRCT

Throughout the experience, identity became an anchor. Being a dispatcher and caring for others had always been central to Hunter’s life. Transitioning from caregiver to patient was jarring, but it also opened a new perspective. Now, he sees the subtle emotional weight that patients carry; it’s something that goes far beyond medical charts. That awareness doesn’t erase the difficulty, but it deepens empathy for others.

Hunter’s treatment path for this rare cancer was intense: multiple surgeries, rigorous chemotherapy cycles, a clinical trial in New York, and both traditional and radioimmunotherapy radiation. Every phase came with its own hurdles, from relentless nausea and hair loss to the emotional strain of living life in hospital rhythms. He leaned on surprising comforts, including peppermints that successfully warded off nausea, and the unwavering support of family, friends, colleagues, and a community that consistently stepped up.

Survivorship, for Hunter, isn’t just about returning to “normal.” It’s about discovering purpose. Feeling supported inspired a commitment to give support in return. Online DSRCT groups offered connection and a simple but powerful phrase: “Hope always.” That reminder became a guiding principle on days when his energy was low or uncertainty high. Hope wasn’t at all passive; it was active, a choice to find positivity even within the hardest moments.

Self-advocacy also emerged as essential. Hunter’s experience navigating referrals, accessing clinical trials, and learning to speak up within the healthcare system reinforced one vital truth: patients deserve to be heard. He encourages others to share their stories, ask questions, and build visibility around rare cancers like desmoplastic small round cell tumors. Open conversations create stronger communities and remind those going through it that they are not alone.

Watch Hunter’s video and read the interview transcript below. You’ll see how:

  • A dispatcher’s life flipped from caregiver to rare cancer patient overnight
  • Peppermints became Hunter’s secret weapon against relentless chemo nausea
  • A clinical trial in New York offered new hope
  • “Hope always” became Hunter’s guiding mantra through fear and fatigue
  • Hunter now champions survivorship and the power of patient voices

  • Name: Hunter D.
  • Age at Diagnosis:
    • 21
  • Diagnosis:
    • Desmoplastic Small Round Cell Tumors (DSRCT)
  • Symptoms:
    • Abdominal pain
    • Nausea
    • Vomiting
    • Fatigue
  • Treatments:
    • Surgeries: debulking surgeries
    • Chemotherapy
    • Radiation therapy: radioimmunotherapy, under a clinical trial
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors
Hunter D. desmoplastic small round cell tumors

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.


My name is Hunter

I’m 23 years old. I was diagnosed with desmoplastic small round cell tumor, or DSRCT.

My hobbies mainly consist of playing video games with friends and spending as much time as possible with family and friends. I work a lot, but I do love my job.

I work as a full-time 911 dispatcher and currently serve as a supervisor. I’ve been a dispatcher for the last five years. I grew up in emergency services with both my parents doing it.

It’s definitely been an interesting transition, going from a caregiver side to the patient side of things. You know, I’m used to seeing and talking to patients every day as part of my job and hearing what they have to go through, but going through it myself has given me a whole new perspective — seeing how it is to be a patient, and living through some of their daily struggles.

I got diagnosed when I was 21. I’m sure everybody can think of what every 21-year-old would rather be doing than fighting cancer. But I’ve tried not to really look at it as getting robbed of my early 20s. I’d rather see it as having been taught how to live a better life, so that I can live the rest of my life the best way that I can.

My symptoms came on suddenly

It really only took one or two days of not feeling right to finally decide to go to the emergency room and get checked out. And it all really started around November 2023.

We had just come back from a festival a couple of towns over. The next day, I started feeling some pretty sharp abdominal pains, which wasn’t normal, but I just thought it was a stomach bug and I could sleep it off, and it wouldn’t be anything. But the next day, the pains got worse, and I started to have nausea and was vomiting as well. And as that worsened and went on through the day, I ultimately decided that night that it was time to go to the ER and get checked out. And during that visit, we discovered that I had a rather large mass growing in my abdomen and a smaller mass in my pelvis.

The people at the ER didn’t have an exact answer for what they were looking at because they weren’t sure at the time. So we were referred to the University of Kansas, or KU Cancer Center, for a biopsy and further diagnosis. And we actually had to self-refer ourselves because there were no local hospitals taking incoming patients at the time. So we had to take steps outside of the emergency room to take the next step in my treatment plan. 

The moment everything changed

We visited the doctors at KU and got a biopsy scheduled. And from that point, we were trying to put the next steps in place. It wasn’t until we got the biopsy done and I had a port placed in my left shoulder that we found out that I actually had a desmoplastic small round cell tumor, a rare type of cancer. And then I was referred to the specialist that they have at KU.

Getting my diagnosis — there are actually two parts to that story. The first had to do with the initial findings in the ER when they had to come in and break the news that I had my tumor. My mom, who has been a nurse for years and years and has seen everything, was a little bit of an emotional wreck. And my knee-jerk reaction in that situation was to try and make things funny. So I was trying to make jokes out of the situation. While it was a rather serious topic at the time, I was doing my best to make light of the situation and keep a positive outlook. 

The second part came two weeks later, a week after my biopsy, when we received the official results. I was with my best friend at the time, and we were in my basement when I got the call from my doctor. And we rushed up to my mom to see what the news was, because at this point, we were thinking it was a more controllable cancer, such as a testicular cancer or a lymphoma. But I was told that I had what’s called a desmoplastic small round cell tumor and that I have an Ewing sarcoma genetic trait to it as well. So it was a little difficult finding out that I had such a rare disease. And of course, we didn’t know anything about it at that point. We had never heard of it before; most people haven’t.

The more that we were researching this, the more worrisome it became, because Google will be pretty straightforward and will give you some sad statistics, but luckily, that doesn’t seem to be the case with most cases these days.

My treatment plan

We knew pretty early on that no matter what it was, we were going to be hitting it pretty hard with chemo. So I had a port placed within about a week of getting out of the ER, just as a precaution, in case we needed it. And it turns out that we did end up needing it. 

It wasn’t long after my diagnosis that my doctor at KU was on the phone with me, talking about the treatment cycles that I was going to be on. He didn’t give me a lot of options, but that’s just because there weren’t a lot of options to effectively fight this. So I was put on a pretty rigorous chemo cycle that did quite a bit of damage for a while, but I had switched around between a few different treatments and been in and out of the hospital for transfusions and IV antibiotics. I’d been admitted a multitude of times due to complications with chemo alone. And you know, I was putting my body through all of that, but I just had to keep thinking to myself during that time that there was an end to it and that there was a reason I was doing all of it.

So the overall treatment plan was to hit it early with chemo to hopefully shrink any tumors, and after that, to go in and remove those tumors surgically. And once those tumors were surgically removed and they could no longer see or detect any disease or scans, they were planning to going to do a whole abdominal radiation therapy as well as a clinical trial. And over the years, all of those treatments just added up and got me to where I am today.

But yeah, three different surgeries. The radio immunotherapy trial, a month of standard radiation or traditional radiation, and then chemo on top of all of that, and then finishing it off with maintenance chemo.

I took part in a clinical trial

The doctors say the most effective treatment plan for desmoplastic small round cell tumor is to hit it early on with surgery, followed by traditional radiation treatment. The main kind of surgery for this type of cancer is called a debulking surgery. And to my understanding, that’s where they go in and try and remove any physical mass that they had seen on scans that they can physically get hold of. And once those are removed, they try and target that area with a traditional type of radiation to kill any residual cells that were left over. And there are also many other trials offered for this type of cancer that patients have access to.

I may not remember everything, but to the best of my memory, the clinical trial that I took part in was a radioimmunotherapy trial offered by Dr. Slotkin’s team at Memorial Sloan-Kettering in New York City. Simply put, they surgically removed the masses from my abdomen and put a radioimmunotherapy fluid into my abdominal cavity to sit there and absorb over a few days. And that would hopefully mark the targeted cells for radiation to be killed later on during the traditional radiation process. So with the clinical trial, I also had my third and final exploratory surgery, where they went in and cleaned up any scar tissue or anything else left behind, and made sure I didn’t have anything else growing. 

After the clinical trial, they followed up with a month of traditional radiation. So we were living out of the Ronald McDonald House in New York for about a month straight while I received radiation treatment.

The plan moving forward

My maintenance chemo was scheduled for about a year. We started around January of 2025, and I’ll hopefully be wrapping up around January 2026. I don’t know exactly how many treatments I’ve had, but I’ve had them pretty consistently every three weeks. So once or twice a month, I’ll go in for a week of chemo and then have two weeks off. So the cycles are definitely up there. I’ve stopped keeping track after so long, but hopefully I’ll be wrapping up soon.

We’re planning a final trip out at the first of the year, hopefully a remission trip, and ring the bell out there and have my remission start in New York, where my big medical journey started.

The side effects I experienced during treatment

The most significant side effects that I first experienced when starting chemo and having my other treatments were the nausea and vomiting. They were relentless. There wasn’t really anything I could do to stop them. There was no medication I could take. Nothing would help. Food smelled different. Food tasted different. The only thing that helped get my nausea under control was peppermints. Because peppermint oil is supposed to naturally help soothe the stomach and treat nausea. So everybody would chip in and help buy me peppermints whenever I was doing my chemo weeks because they knew that was the only thing that really helped keep me from getting sick.

I also experienced hair loss. Luckily, I’m growing my hair back now, but my first chemo was pretty quick to take the hair out of my head whenever I started it. I was rocking the bald look for a while. But I feel like I look a lot better with hair. Luckily, I’m able to grow some hair now that I’m on my maintenance chemo.

The biggest challenge I faced

My biggest challenge is probably trying to feel normal after getting through it all again, because I’ve spent so long in and out of the hospital, in and out of doctors’ appointments, getting tested. People are constantly asking how I’m doing. And that’s something I constantly have to be aware of — how am I doing, really? I actively have to be watching everything that’s going on with my body and paying attention to everything that my body’s telling me. 

But I’ve learned to stop worrying about things so much, to take everything day by day, and not necessarily be so anxious about every little thing that’s going on. I’m getting back to the normal side of life.

So early on, it was made very clear to me that I wasn’t going to have any problems finding support in my community. People really stepped up. They took time to make sure that I was doing okay during my treatment weeks and to check on me and make sure I and my family had everything we needed. I was also very lucky that my friends were able to support me through it. I wouldn’t have been able to get through it all if it weren’t for how well my employer treated me during all of it, too. They allowed me to keep my job while I was sick and kept my seat warm for me for whenever I was ready to come back.

What survivorship means to me

For me, survivorship means finding a higher purpose. Something that I’m more meant to do. For me, that’s helping others. I’ve found a lot of comfort in doing that. Well, it’s something that I already found comfort in doing before I got sick. But my experience has really resolidified that. Survivorship for me means advocating for others, moving on, not staying silent, and finding a voice. Not only for myself, but for others who are going through things like this. Because it’s not always easy to find yourself while you’re going through it.

I’m actually in a couple of online support groups for DSRCT. And one of the things that they say is, “Hope always.” And that was something I had never really heard until I started interacting with that group of people. But “hope always” has now come to mean to me that no matter how grim things look, all you can really do at the end of the day is hope. Because if you don’t, who will? Somebody’s got to have a little bit of hope in such a situation. I’ve had my hopeless days, but I’ve never let hopelessness consume me. I’ve always tried to try and take away at least one positive out of any bad situation, to kind of give myself a different perspective.

What I want others to know

One message that I definitely want people to take away is how important it is to find your voice and be heard. Because I don’t think anybody should go through this silently. They should absolutely fight cancer; they should be kicking and screaming. Since that’s how cancer tries to take you down, that’s how you should try and take cancer down, too. 

I think finding a voice and being able to tell your story as a survivor and a patient is important not only to help give hope to others but also to be visible to other people, as someone who’s gone through it and someone who understands what other people are going through. I just want a stronger community. 

I don’t want it to be such a hard thing for people to talk about. I want people to be able to talk about it more openly. Because when we talk about it openly, we can start tackling it. I feel like a lot of the problems don’t get talked about enough. 

Patient advocacy is one thing that’s really important for me. After having gone through our own struggles with the American healthcare system, I am definitely a strong believer in finding your voice and self-advocating for yourself as a patient. Because if you don’t, who will?


Hunter D. DSRCT
Thank you for sharing your story, Hunter!

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Hunter D. desmoplastic small round cell tumors

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Categories
Chemotherapy Lung Cancer Lung Resection Metastatic Spine Tumor Surgery Non-Small Cell Lung Cancer Patient Stories Radiation Therapy ROS1 Surgery Targeted Therapy Treatments

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.

At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.

Lysa B. stage 4 ROS1+ lung cancer

When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.

Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.

Watch Lysa’s video and read her story below to:

  • Find out how her back pain revealed her life-changing diagnosis
  • Learn why biomarker testing became Lysa’s game-changer
  • Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
  • See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
  • Meet the woman who thrives beyond her diagnosis

  • Name: Lysa B.
  • Age at Diagnosis:
    • 40
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • ROS1
  • Symptom:
    • Severe but intermittent back pain
  • Treatments:
    • Chemotherapy
    • Radiation therapy
    • Targeted therapy, including through a clinical trial
    • Surgeries: lung resection, metastatic spine tumor surgery
Lysa B. stage 4 ROS1+ lung cancer

Thank you to Nuvalent for supporting our patient education program. The Patient Story retains full editorial control over all content.

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



You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.

Lysa B. – Lung cancer patient

About Me

Hi, I’m Lysa. 

I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.

Lysa B. stage 4 ROS1+ lung cancer
Lysa B. stage 4 ROS1+ lung cancer

When I First Noticed That Something Was Wrong

I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time. 

I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back. 

My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.” 

We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours. 

I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better. 

I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.” 

The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.

Lysa B. stage 4 ROS1+ lung cancer

I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

Lysa B. – Lung cancer patient
Lysa B. stage 4 ROS1+ lung cancer

The Moment Everything Changed

Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.” 

I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.

How I Learned About Biomarker Testing

Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer. 

It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.

I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.

At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.

Lysa B. stage 4 ROS1+ lung cancer
Lysa B. stage 4 ROS1+ lung cancer

Learning I was ROS1+ and Taking the Only Treatment Option Available Then

Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.

At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery. 

My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.” 

He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.

By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working. 

I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.

Lysa B. – Lung cancer patient

I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed

We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years. 

By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly. 

We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.

I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.

I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.

Lysa B. stage 4 ROS1+ lung cancer
Lysa B. stage 4 ROS1+ lung cancer

Targeted Therapy Has Changed My Quality of Life for the Better

When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling. 

I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world. 

My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.

I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme. 

Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day. 

My biggest happiness is when I’m with my family and my dogs. I love my dogs.

I try not to let external things get me down. And I focus on trying to find the joy in every day. 

Lysa B. – Lung cancer patient

Anyone With Lungs Can Get Lung Cancer

One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.” 

I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death? 

Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.

I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.

Cancer doesn’t discriminate.

Lysa B. stage 4 ROS1+ lung cancer

You do not have to be alone.

Lysa B. – Lung cancer patient
Lysa B. stage 4 ROS1+ lung cancer

My Advice to Others

There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone. 

They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders

These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.

Lysa B. stage 4 ROS1+ lung cancer

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


Lysa B. stage 4 ROS1+ lung cancer
Thank you for sharing your story, Lysa!

Inspired by Lysa's story?

Share your story, too!


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Categories
Bladder Cancer Patient Stories Surgery Transurethral resection of bladder tumor (TURBT) Treatments

Laurent Gemenick’s Bladder Cancer: A Story of Second Opinions and Self Advocacy

Laurent Gemenick’s Bladder Cancer: A Story of Second Opinions and Self Advocacy

Laurent’s story is a reminder that, as overwhelming as it is, living with bladder cancer can be filled with hope and learning to advocate for yourself can lead to opportunities to help others. This inspired the birth of a national organization to help bladder cancer patients across all of Spain.

Laurent was relatively young and didn’t fit the usual profile of a bladder cancer patient. So when he first noticed blood in his urine, urologists assumed an infection, but the blood in his urine continued. He then had an ultrasound which came back negative, but the blood in his urine continued. So he had a cystoscopy, which allowed them to look at the bladder from the inside and this procedure was what led to a bladder cancer diagnosis in October 2022. 

Getting the right diagnosis had proven tricky, but his need to advocate for himself was just beginning as an even bigger turning point was just around the corner. After a difficult surgery to remove the bladder tumor, Laurent received a rushed recommendation for bladder removal. He and his partner, David, decided to seek second opinions. Five second opinions. Visiting five specialists gave them clarity and hope, as four of the five encouraged bladder preservation, proving how vital self-advocacy can be.

Laurent G. bladder cancer

Throughout this experience, Laurent realised how isolating bladder cancer can feel. He struggled to find patient-friendly information and supportive communities. That’s why he joined a French support group and eventually co-founded CANVES, Spain’s first bladder cancer patient group, to help ensure that no one faces bladder cancer alone. By sharing experiences, hosting events like Spain’s first National Bladder Cancer Patients’ Day, and advocating for early detection, he empowers patients to ask questions, connect with others, and make informed decisions. 

Laurent wants every patient to know that life doesn’t stop with a diagnosis, and that reaching out for support and timely access to reliable resources can make all the difference. Watch his video and read his interview below for more on:

  • How second opinions changed one bladder cancer patient’s life
  • Why Laurent believes no patient should ever feel alone
  • A candid look at life after a harrowing bladder cancer diagnosis
  • The inspiring birth of CANVES
  • Practical tips for self-advocacy and early detection

  • Name: Laurent Gemenick
  • Diagnosis:
    • Bladder Cancer
  • Symptom:
    • Presence of blood in urine
  • Treatment:
    • Surgery: transurethral resection of bladder tumor (TURBT)
Laurent G. bladder 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: Taylor Scheib
Edited by: Chris Sanchez and Jeff Forslund

There is no need to be afraid. When you get this news [that you have bladder cancer], you just have to keep going and keep living.

Laurent Gemenick – Bladder Cancer Patient Advocate

About Me

I’m Laurent. I’m from Belgium. I was diagnosed with bladder cancer.

I’m a happy-go-lucky person, always smiling. My friends and family describe me as talkative and positive. I love to garden. 

When I was diagnosed with cancer, my world, my life, fell apart.

Laurent G. bladder cancer
Laurent G. bladder cancer

My First Symptom Was Blood in My Urine

The first symptom I had was blood in my urine. In my case, it was different, because it only became obvious at the end of urination. It wasn’t easy to see with my naked eye.

That’s what first made me go to the doctor.

Trying to Get My Diagnosis

At the appointment with the urologist, I discovered that I didn’t fit the age for having bladder cancer.

This kind of cancer usually affects older men or people with a family history of cancer. Neither was true in my case. So my doctor said that the blood in my urine could’ve been caused by a strain instead. He told me to come back another time. 

But then I produced bloody urine again. I went back to the doctor and got an ultrasound. They suggested that I get an ultrasound because it can reveal if there is a tumor in the bladder. 

Still, nothing came out, but I continued to have blood in my urine. This time, they did a cystoscopy. This procedure places a camera into the bladder and lets doctors confirm the patient’s diagnosis for sure. 

That’s how they ended up diagnosing me with bladder cancer at the end of October 2022.

My relationship with the doctor wasn’t great. I was in the ICU for three days because of a procedure called transurethral resection of bladder tumor (TURBT). It didn’t go well, which is why it took three days. 

Then the doctor took a sheet of paper out and said they would have to remove my bladder. He told me to “sign here” on the paper, and they’d do the surgery in 10 days. 

I didn’t even know at the start that you could get bladder cancer, and I went from that to the point that this doctor was telling me, “I’m going to need to take out your bladder.”

Luckily, I had David by my side. He was always by my side. 

We started looking for second opinions. We went to five specialists and got five opinions. 

Four of those five specialists presented the same thing. They agreed that for treatment, they recommended preserving the bladder because of my young age, and that you don’t remove the bladder from a young patient.

They actually didn’t even use the word “cancer.” They kept saying “polyps.” The doctor I’m seeing now, who’s treating me, even took a long time to say the word “cancer.”

Laurent G. bladder cancer

I didn’t even know at the start that you could get bladder cancer, and I went from that to the point that this doctor was telling me, “I’m going to need to take out your bladder.”

Laurent Gemenick – Bladder Cancer Patient Advocate
Laurent G. bladder cancer

It’s So Important to Get a Second Opinion

The issue of second opinions is very important. 

The patient may forget to get one because they go into shock after hearing the diagnosis or because of the mindset that the doctors are always right, and “what the doctors say is what we should do.”

But this is life-changing surgery. If they take out this organ, it’ll change your life because you’ll need to have a colostomy bag put in. 

It requires seeing more than one doctor and getting more than one opinion so you can make an informed decision. If they are on the same path or not, if they have the same ideas.

My Treatment and Follow-up

I get follow-up appointments every six months. I get a urinalysis and cystoscopies. 

The first resection surgery during the ICU stay in the beginning removed most of the bladder cancer. Since my biopsy results have been good, I have the check-ups every six months.

I Found it Hard to Find Information For Patients

We tried looking for information on the internet. You will find everything online — including the worst-case scenarios. David was my filter because he kept me from searching online. 

On Facebook, I found a group of bladder cancer patients, but they were from France. Luckily, my first language is French. They welcomed me to the group and supported me. I joined at the same time as four other patients. Three had their bladders removed. One has passed away.

It’s a support group — they live what I live with bladder cancer. We discuss treatments. We experience anxiety at every appointment. We know the shared pain.

We were introduced to the World Bladder Cancer Association in Madrid, and that’s how we started CANVES.

Why I Decided to Start a Patient Organization

I don’t think what happened to me happens to all patients —  being told that they would need to have their bladders removed, and “sign the paper here.” I think it has to be nuanced, and it depends on the experience and empathy of the doctor who’s taking care of you. 

In Spain, there are two healthcare systems. You have the public healthcare system and the private healthcare system.

The private healthcare system works well. The public system does, too, but it takes more time to get things done there. You can’t get an appointment as quickly or often. Doctors usually don’t have more than five or ten minutes to talk to each patient. That’s actually a Europe-wide problem. In Belgium, the same thing happens.

That’s why we created CANVES. We understand that doctors don’t have a lot of time to dedicate to their patients, to give them the explanations or support they need. So we want to give the patients the information they need.

That’s our motivation. To make sure no one has to be alone with this.

Laurent G. bladder cancer

That’s our motivation. To make sure no one has to be alone with this.

Laurent Gemenick – Bladder Cancer Patient Advocate
Laurent G. bladder cancer

Fighting the Stigma in Bladder Cancer

There are 22,000 cases of bladder cancer each year in Spain, which makes it one of the most frequently diagnosed cancers here. There was no patient association here. Nothing. Resources? Nothing. Support? Nothing. 

Most patients who have bladder cancer are indeed men, and those who are older. But we have to consider that more and more young people are getting diagnosed with bladder cancer. Patients used to be 70 or 80 years old, but they’re getting younger, 60 or maybe even younger. 

And men don’t talk; they don’t go to the doctor. 

It seems different for women. Starting when they are little, we tell them to go to a gynecologist as soon as puberty starts, to get tested. We don’t have similar conversations with boys to see a urologist for testing until they are typically 40 or 50 years old. 

A milestone — this year, we organized the first National Bladder Cancer Patients’ Day. This was so important because we had the support of the Spanish scientific societies. This was huge because it happened in a short time, and united all these professionals to help people in one room. 

That’s the most important thing for us: helping people. We get emails, and we talk and speak to people every day. This is the best thing we can do. This is why we exist.

We hope to have better information and build a faster line of detection, so if a patient goes to the emergency room with blood in the urine, we can help implement a protocol of tests to see whether it’s bladder cancer. Most of the time, if it’s caught early enough, bladder cancer is curable.

My Message of Hope for You

There is no need to be afraid. When you get this news, you just have to keep going and keep living. That’s the most important thing. 

Many people think, “Why me?” Cancer diagnoses are becoming increasingly common.

You have to keep on living because life is short.

Laurent G. bladder cancer

You have to keep on living because life is short.

Laurent Gemenick – Bladder Cancer Patient Advocate

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.


Laurent G. bladder cancer
Thank you for sharing your story, Laurent!

Inspired by Laurent's story?

Share your story, too!


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Laurent Gemenick, Bladder Cancer



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