Tag: parenting

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

Post author By Katrina Villareal
Post date November 28, 2025
No Comments on Finding Light Through Advocacy in Stage 3 Synovial Sarcoma: Sorcha’s Experience

November 28, 2025

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.

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

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.

Thank you for sharing your story, Sorcha!

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Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

Post author By Katrina Villareal
Post date November 25, 2025
No Comments on Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

November 25, 2025

Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

Ashley’s experience with diffuse large B-cell lymphoma (DLBCL), a type of non-Hodgkin lymphoma, began during a period that should have been filled with new beginnings and joy – the arrival of a new baby into her life. Instead, Ashley, now a mother of three, confronted a growing list of symptoms shortly after her pregnancy when dizziness, cardiac complications, and difficulties breastfeeding all led up to an unexpected, and life-altering cancer diagnosis.

Interviewed by: Keshia Rice
Edited by: Katrina Villareal

Being diagnosed with DLBCL weeks before her 30th birthday set Ashley apart from the typical patient profile, as most individuals face this diagnosis later in life. Her youth contributed to challenges in being heard by her medical team, intensifying her frustration as treatments like chemotherapy caused debilitating side eff e cts. Emotional struggles compounded Ashley’s physical battles: fear of leaving her children, grief over lost moments with her newborn, and the continual responsibilities of motherhood that do not pause for illness.

Despite assurances from leading cancer doctors regarding advances in treatment options, Ashley’s cancer responded poorly to initial therapy, necessitating additional interventions, including CAR T-cell therapy, which required extended separation from her family. The transition from hope to uncertainty was difficult, but new developments with bispecific antibodies and ongoing research provide Ashley and other patients reasons to hold onto hope for recovery and better outcomes even amid refractory disease.

Ashley’s experience is marked by transformation, not just physically but emotionally and spiritually. She learned to lean on her family and faith for support, grappled with feelings of guilt and anger, and emerged with the conviction to advocate for herself and encourage others to trust their intuition. Her story is a testament to the unseen emotional dialogue cancer patients navigate, and to the importance of self-advocacy, community, and accessible innovations in cancer care.

Key Story Takeaways:

Trust and advocate for your own body; patients know their symptoms best and should persist until they are heard.
Emotional struggles, like fear, guilt, and anger, are often invisible but just as challenging as the physical aspects of disease.
Family support and faith provided critical anchors for Ashley, helping her endure even the most difficult days.
DLBCL can affect patients of any age, and younger individuals may face unique challenges in being taken seriously by the medical team.
New therapies, including CAR T-cell therapy and bispecific antibodies, offer hope even in refractory cases.
Advocacy and self-acceptance are vital; patients experiencing life-altering conditions deserve compassionate care and respect for their experience.

Name: Ashley P.
Age at Diagnosis:
- 29
Diagnosis:
- Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
- 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

Thank you to Genmab and AbbVie 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.

Table of Contents

Facing the Unexpected: Early Signs and Diagnosis
A Young Mother and a Rare Diagnosis
The Unseen Struggle: Emotions Behind the Experience
CAR T-cell Therapy and Next Steps
Advocacy and Self-Empowerment: Lessons Learned
Advice for Others: Faith, Family, and Resilience
Moving Forward: Transformation and Community

I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags.
Ashley P., Stage 4 DLBCL Patient

Facing the Unexpected: Early Signs and Diagnosis

Ashley P.: I’m not afraid to die by any means. I would say I fear leaving my children and leaving them without a mom.

What should have been one of the happiest times in her life became filled with worry when Ashley was diagnosed with a cancer she hadn’t heard of before: non-Hodgkin lymphoma, specifically diffuse large B-cell lymphoma or DLBCL.

Ashley: I started having symptoms while I was pregnant. I had our baby in December 2023 and at the end of my pregnancy, I was having a lot of complications with my heart rate. In February 2024, I started to feel super lightheaded, as if I was hanging upside down for a very long time. It reached a point where I was getting concerned about being alone with the baby. I felt like I was going to pass out. What if I’m holding him and something happens?

Dizziness wasn’t her only concern. Ashley also started to have trouble breastfeeding. A trip to see her midwife helped lead to the diagnosis.

Ashley: I went to nurse him one day and I couldn’t extend my nipple. It was completely caved in. I tried everything to get it unclogged, like hot showers and massages, but they didn’t work, so I reached out to my midwife.

I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags. When I saw my midwife, she looked at it and said, “Ashley, this is very, very large. You need to go to the breast cancer center,” which was wild to me.

I went in and they did biopsies on both breasts and the lymph nodes in my armpits, and that’s how I found out.

We have more FDA-approved medicines for lymphoma than for any other cancer… It’s awesome because it means we have more options for patients
Dr. Joshua Brody, Hematologist-Oncologist

A Young Mother and a Rare Diagnosis

The average age for a DLBCL diagnosis is in the mid- to late-60s. Ashley says being diagnosed at a much younger age made the treatment process even more frustrating.

Ashley: I found out I had cancer literally two weeks before my 30th birthday. They said that I was so young and that everybody they usually see with this cancer is in their late 70s. They told me that it was going to be an absolute breeze.

I had a very hard time being heard because I was so young. Chemotherapy rocked my world. I was extremely sick. I barely had time to recover between rounds. I kept telling my oncologist that I was so sick and miserable, and the response that I kept getting was, “You’re young. You shouldn’t be.”

DLBCL can be a devastating diagnosis. But top cancer doctors, Dr. Amir Steinberg from Westchester Medical Center and Dr. Joshua Brody from Mount Sinai, want people to know that there’s a lot of hope. Watch their discussion.

Dr. Joshua Brody: We’re very lucky because, even though lymphoma is technically the fifth most common cancer in America, we have more FDA-approved medicines for lymphoma than for any other cancer, even more than for breast cancer, which is so incredibly common. It’s awesome because it means we have more options for patients

Dr. Amir Steinberg: There’s so much that’s changed in the last 20 to 30 years, most especially in the last five years. Things are changing for the better so rapidly for patients. As doctors, we have so much to catch up on and stay up on in terms of the knowledge out there, but it’s totally worth it because it will make patients’ lives better and more fulfilling.

Despite assurances from doctors, treatment was daunting.

Ashley: I don’t think people understand that you can see all the physical changes. You can see the hair loss, the bloating, the puking, and even the literal color draining from their face. But you cannot see their inner dialogue. You can’t see them fighting for their lives. You can’t see the anger or the conversations with God about why. Questions of, “Did I do something wrong to deserve this?”

The world doesn’t stop… You still have to show up and be a mom and a wife… and that is such a hard challenge.
Ashley P., Stage 4 DLBCL Patient

The Unseen Struggle: Emotions Behind the Experience

As a mom of three, Ashley dealt with mixed emotions of guilt, stress, and sadness over the experiences she lost.

Ashley: I honestly think I got robbed of the joy. He’s my last baby and I had this huge goal of nursing. It was easy with him. I had all these plans, but I was in so much pain from my cancer.

Then I have a nine-year-old and an almost five-year-old, so it was difficult juggling that and trying to figure out the best way to tell them what I was going through. That was probably the roughest part.

The world doesn’t stop and that thought came into my head so many times while I had cancer. You still have to show up and be a mom and a wife. You still have to be all of these things while battling the biggest physical challenge that you’ll ever go through and the biggest emotional and mental struggle that you’ll ever have to battle. You still have to show up for everybody around you and that is such a hard challenge.

One of the hardest emotions Ashley had to deal with was anger.

Ashley: I knew that I was mad and not the best version of myself. Then you have this feeling of complete guilt. What if you die and this is who you showed up as and who you left as? This is how you treated your fiancé and your kids? Don’t you value life? Didn’t you say that you wanted to show up differently? Didn’t you say that you were going to be a completely different person because now you know the value of life and how it can be taken away? Now, you have this complete guilt trip of who you’re showing up as. But at the same time, you’re so mad. You’re so mad.

I thought, ‘What if I go through all of this and then I still have cancer?’ That was something that I didn’t want to face.
Ashley P., Stage 4 DLBCL Patient

During those moments, Ashley leaned into her family and her faith.

Ashley: I’ve seen other people talk about it, but there is a sense of peace and knowing that I have not experienced in my life. Definitely not the peace that carried me through. I had to be here for my kids. There were so many times when I thought that if I were doing this for myself, I wouldn’t have gone through it. It was too much. It was so hard that I truly don’t know if I would have shown up in the same capacity.

CAR T-cell Therapy and Next Steps

After six rounds of chemo, Ashley thought the hardest part was over. But her DLBCL was refractory, meaning it did not respond well to initial treatment.

Ashley: When I did my chemo, they didn’t even talk to me about the steps and what they would do. Again, age was a huge factor. We did have conversations about other things out there. It went from a 70% chance of beating this and the odds are good of going to Mayo, to my odds going down to 10%. The biggest concern was waiting for the CAR T-cell therapy. But after, they told me, “This is your last option. If this doesn’t work, there isn’t anything more out there for you to do.”

CAR T-cell therapy came with new challenges.

Ashley: When you go through CAR T-cell therapy, you have to be gone and by the hospital for 47 days, away from your family. I thought, “What if I go through all of this and then I still have cancer?” That was something that I didn’t want to face. I didn’t even want to have that be a possibility. I just wanted to be done.

Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.
Dr. Amir Steinberg, Hematologist-Oncologist

Ashley’s experience reflects the complexity of DLBCL treatment. It’s one of the reasons why doctors are constantly looking to new research in clinical trials for answers. One of the answers is a newer option in immunotherapy called bispecific antibodies.

Dr. Brody: Even for people who relapse in the first year or in their third line, there is great evidence for bispecific antibody plus chemotherapy. Overall, it certainly seems to be a bit safer than transplant, maybe even safer than CAR T-cell therapy, and it’s a lot more accessible to folks who are being treated in the community when they don’t have a CAR T-cell therapy center nearby. If you’re getting more options, then that can only be a good thing. People would rather have a clear answer. But they would rather have better therapies and better options.

Dr. Steinberg: Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.

Advocacy and Self-Empowerment: Lessons Learned

While Ashley eventually found a great and supportive medical team, she wishes she had advocated for herself more from the beginning.

Ashley: That is one thing I regret and one thing I always tell somebody. You have to advocate for yourself. I’m not that person. I’m very shy. I don’t want to make people upset. I want to make everybody happy. I struggled very much with advocating for myself.

Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you.
Ashley P., Stage 4 DLBCL Patient

Advice for Others: Faith, Family, and Resilience

Ashley’s advice to others? Advocate for yourself, lean into your faith, and learn to accept the changes.

Ashley: Be honest with how you feel. Have those hard conversations. Lean into God as much as you possibly can because at times, that’s literally all you have. You would be very surprised at what you’re willing to go through and what you’re willing to overcome for the people that you love. It’s almost like an adrenaline rush to make it through.

Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you. You know your own body. You have that intuition for a reason and you know when something is wrong.

Moving Forward: Transformation and Community

Ashley: You make it. You make it out alive. You will never be this version of yourself again and that is completely okay. Sometimes we have to go through something completely terrifying and life-changing to figure out who we want to show up as and what’s important to us. It’s going to suck so badly. But you find out who your people are. So many people love you. And you make it.

Thank you for sharing your story, Ashley!

Inspired by Ashley's story?

Share your story, too!

Hosted by The Patient Story Team | 1h 9m 30s

Hear Dr. Joshua Brody and Dr. Amir Steinberg discuss new treatments for relapsed/refractory DLBCL and how academic–community collaboration helps patients access the best care. Moderated by DLBCL Advocate Stephanie Chuang.

Watch On Demand!

Thank you to Genmab and AbbVie 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.

Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses

Post author By Chris Sanchez
Post date November 20, 2025
No Comments on Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses

November 20, 2025

Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses

Deb has lived with metastatic breast cancer for seven years, originally diagnosed stage 4 triple-positive breast cancer in 2018 while raising her young daughter. Five years later, in 2023, she discovered a new lump and learned she had developed a second, unrelated breast cancer that was early stage and had a different profile.

Her life today is a blend of motherhood, advocacy, and strength. A longtime activist and English–Spanish interpreter, Deb has used her voice to push for understanding, empathy, and better support for people living with breast cancer. What began as two life-altering diagnoses has become a commitment to helping others feel seen, supported, and less alone.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Deb’s story began in 2016, when she found a lump while she was breastfeeding her daughter, but it was dismissed as a clogged milk duct. Two years later, the lump had not only persisted but had also grown, leading to a de novo metastatic breast cancer diagnosis. The “de novo” distinction means the initial diagnosis was already at stage 4 or metastatic. “I didn’t know what metastatic meant,” Deb recalls. Once biomarker testing was complete, she learned it was HER2-positive, hormone receptor-positive breast cancer, or “triple positive breast cancer.” The early months were filled with fear, tests, and treatments, but also immense love from her community, who helped her care for her young daughter. When she reached no evidence of disease in 2018, her optimism clashed with the reality that metastatic breast cancer is often managed, not cured.

Living with both bipolar disorder and cancer, Deb describes her reality as one of constant adjustment. “Some days, the mental illness is harder on me than the breast cancer,” she says. Her transparent advocacy helps others balance emotional health with ongoing treatment.

In 2023, Deb faced a new, separate early-stage breast cancer diagnosis. Treating both simultaneously tested her physically and emotionally, but her resilience remained unshaken.

Deb’s breast cancer experience continues to evolve. Today, her scans again show no evidence of active disease, yet she acknowledges the uncertainty that remains including being on active treatment. What keeps her grounded, she says, is hope: hope for herself, for her daughter, and for a better understanding of metastatic disease. “Do it for you,” she tells others living with this diagnosis. “You deserve to have hope for yourself.”

Watch Deb’s video above and scroll down to read the edited transcript of her interview for more on how:

Metastatic breast cancer is lifelong and demands ongoing adaptation
Hope can evolve, from doing it for others to valuing one’s own life and wellbeing
Mental health challenges can be as significant as physical ones
Support networks and advocacy communities provide essential strength
Parenthood can coexist with cancer care when boundaries and love guide the balance

Name: Deb O.
First Diagnosis:
- First Diagnosis: De Novo Triple-Positive Breast Cancer
- Second Diagnosis: ER-Positive, HER-Negative Breast Cancer
Staging:
- First Diagnosis: Stage 4
- Second Diagnosis: Early-stage
Age at Diagnosis:
- First Diagnosis: 37
- Second Diagnosis: 42
Symptoms:
- First Diagnosis: Appearance of lump that later on increased in size, orange peel-like skin around inverted nipple, persistent ache under right arm
- Second Diagnosis: appearance of lump
Treatments:
- First Diagnosis: Chemotherapy, targeted therapy, hormone therapy
- Second Diagnosis: Surgery (mastectomy), chemotherapy, radiation therapy, CDK 4/6 inhibitor

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.

Transcript of Deb’s Interview

Hi, I’m Deb
My diagnosis and how my family and I handled it
Navigating urgency and my first treatments
Advocating, community, and mental health
My second diagnosis: finding out I had a new cancer
Living with metastatic breast cancer
Advocacy and support organizations
My advice for others

Hi, I’m Deb

I live with metastatic breast cancer, HER2-positive, hormone receptor-positive. I’ve been living with it for seven years. I also have an early-stage breast cancer diagnosis from 2023. I’m living in southern Utah right now.

I’m a mom to a beautiful 11-year-old daughter. Before motherhood, I was an activist for over 20 years. I’m also an English–Spanish translator and interpreter, with much of my time spent volunteering.

Originally from California, when I moved to Salt Lake City, I found activist groups that interested me and poured my heart into community involvement. Everything changed when I had my daughter, but I continue to do advocacy now, with my focus shifting towards breast cancer.

Advocacy is incredibly important to me; I’ve moved my background in mental health advocacy into the breast cancer world, because it’s the life I’m living now.

My daughter Estelar—her name means “stellar”—is the biggest-hearted, kindest kid you’d ever meet. She’s in sixth grade and was only four when I was diagnosed, so this is all she’s ever known: mom living with cancer. She’s very mature about it, and I take her to therapy so she has ways to cope. Estelar is a creative kid; she loves Roblox and graphic art, and she’s an artist, though she didn’t get that from me. She’s always trying to bring a smile to everyone she knows and is very protective of me. Sometimes, she takes on a caregiver role, and I have to remind her that I’m the mom and she’s the daughter. She’s incredibly sweet. Sometimes she offers, “Mom, you don’t have to walk me this morning if you’re not feeling well.” But I cherish our walks to school and always try to be there, unless I really can’t. Estelar has adjusted remarkably, though I do worry about her falling into caregiver habits. “I don’t want her to think that’s her job in any way”.

Therapy has helped a lot. When I was diagnosed, a hospital social worker took Estelar around the hospital and explained things in child-friendly terms, even using a doll. She’s always been aware that things are changing. She struggles sometimes, feels sad, but overall has been processing it very well. She’s able to talk to me about her worries, and she calls my infusion days “port medicine day.” It’s super cute. She knows I’ll feel a little worse the next day, but she’s so supportive.

My diagnosis and how my family and I handled it

The story of my diagnosis actually begins before 2018. In 2016, while breastfeeding, I felt a lump in my right breast. At an appointment, my provider told me it was probably just a clogged milk duct, saying I was too young for breast cancer and had no family history, so I let it go.

Life got busy as a single mom of a two-year-old, and, as is common in Latino families, mothers often put their medical needs aside. But two years later, the lump had grown. In 2018, after encouragement from a new partner, I scheduled an appointment, and things moved quickly.

I was seen at a clinic; the second provider, a female physician, took things seriously. Within a day, I was scheduled for a mammogram and a biopsy at the Huntsman Cancer Institute. I was alone during the biopsy, which was incredibly painful and frightening.

Soon after, I received the diagnosis call while boarding a train with my four-year-old daughter en route to preschool. I shared the news matter-of-factly with a friend on the train, holding back emotion for my daughter’s sake: “I’m a mom, and the day still had to go on. I would deal with this later.”

Later that day, reality hit as I was walking home, tears streaming down my face, carrying my daughter. It was a slow realization that everything would change. Nothing was ever going to be the same again.

Navigating urgency and my first treatments

That first month after diagnosis was a whirlwind. The hospital scheduled endless tests: PET/CT scans, a bronchoscopy, and port placement for chemotherapy.

I hadn’t even decided what I wanted to do yet, but there was a sense of urgency. My oncologist reminded me, “You have a four-year-old, and this is aggressive cancer.” Therapy helped, and my top priority was doing whatever it took to be there for my daughter. Three weeks later, I was told my cancer was stage 4, metastatic, throughout the mediastinum and lymph nodes.

It was a lot of uncomfortable first-time experiences, and honestly, I’m not really sure how I got through that, but I do know that I had a lot of community with me. Community support was invaluable; friends and community members helped with my child, appointments, and rides.

By June 1st, I started my first chemo. My sister-in-law Jenny left her job to help, especially with my daughter. That summer, despite treatment and illness, we tried to have fun: concerts, dating, and staying active in the community. Through it all, I didn’t know what “metastatic” truly meant and thought I might beat cancer.

After chemo, my first PET scan showed “No Evidence of Disease” (NED). I celebrated, believing I had beaten cancer, but my doctor explained I’d need treatment indefinitely.

I didn’t have time to feel angry because everyone was so excited by the clear PET scan news. The word ‘indefinitely’ just weighed on me.

Advocating, community, and mental health

Reaching NED was both joyous and sobering.

For two years, I didn’t seek out other women with metastatic breast cancer; I didn’t want to know. But the pandemic changed things, and I found a strong online community. Treatment, scans, and appointments have become normal over the past seven and a half years.

I also live with bipolar disorder, which complicates everything. Some days, mental illness is harder than cancer. Abigail, an advocate friend, helps lift my spirits, shares memes, and trains me as a mentor for other patients.

My second diagnosis: finding out I had a new cancer

In 2023, I was ready to celebrate five years of living “NED” with metastatic breast cancer. But a month before my scheduled scans, I found a new lump while doing a monthly self-check.

Scan day came just as Metastatic Breast Cancer Awareness Day arrived. I was hopeful, but my scan wasn’t clear. The whirlwind began again.

This time, I was older, without my in-person community, and faced a changing body from years of medication. After a painful biopsy, my partner by my side, the results showed it was a completely different breast cancer: hormone receptor-positive, HER2-negative. I got a second opinion from my first oncologist, who confirmed that it was a new cancer, not progression.

Treatment required chemo again, a pause in my metastatic regimen, and surgery, which I hadn’t been eligible for during my initial stage IV diagnosis. I had a mastectomy, another course of chemo, and suffered through radiation and new side effects like lung scarring. This time, my daughter had more questions, and could see I wasn’t as strong as the first time. You have to keep adapting, keep adjusting. That’s what it is like, living with multiple breast cancer diagnoses.

Months later, a clear scan brought relief. I could return to my regular treatment schedule for metastatic disease.

Living with metastatic breast cancer

Metastatic breast cancer never really goes away.

There’s worry; will the earlier-stage cancer come back and metastasize? Will progression happen?

Doctor appointments and scans consume my time, and sometimes it’s hard to find the fun I used to have.

Advocacy and support organizations

Any type of community you have is so beneficial when you’re going through a diagnosis.

Three organizations have been especially supportive. The first is Project Life, an online wellness house for women with metastatic breast cancer, with programs like journaling, yoga, and support sessions.

The second, Living Beyond Breast Cancer, holds advocacy training and mentorship programs, especially for young women diagnosed under 45.

The third organization, For the Rest of Us, is an online empowering community for women of color, focused on community education and fundraising.

Meeting others with breast cancer, in-person and online, brings joy and helps fight isolation, even though it’s tough losing friends to this disease.

My advice for others

There are many misconceptions about metastatic breast cancer. People need to know it is lifelong and incurable, and we need research for a cure.

More people are living longer, thanks to medication advances, but also remember we are more than our diagnosis. We are mothers, daughters, partners, and community members.

Hope can be elusive, especially at low moments, even before cancer. But it’s vital. Don’t just have hope for your children or family. Have hope for you, because you matter, exactly as you are.

You’re not alone. Educate yourself, take care of your mental health, and seek counseling or support groups. Don’t wait too long to meet other people who get it.

Don’t just exist with this illness. Live.

Thank you for sharing your story, Deb!

Inspired by Deb's story?

Share your story, too!

Sam Chooses Hope in the Face of Grade 2 Brain Cancer (Astrocytoma with IDH1 Mutation)

Post author By Chris Sanchez
Post date August 17, 2025
No Comments on Sam Chooses Hope in the Face of Grade 2 Brain Cancer (Astrocytoma with IDH1 Mutation)

August 17, 2025

Sam Chooses Hope in the Face of Grade 2 Brain Cancer

Sam is a passionate photographer and a proud mom to a six-year-old boy named Felix. Her life took a terrifying turn when a series of seemingly minor symptoms led to a diagnosis of grade 2 brain cancer (astrocytoma with IDH1 mutation).

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Sam’s experience began subtly, with feelings of being “off.” She attributed this feeling to holiday stress and the hustle of running her business. She also experienced occasional fatigue and what she thought was food poisoning. But little did she know that things would soon escalate.

One night, Sam collapsed in her bathroom and suffered what would be the first of many seizures. Her husband acted swiftly, calling 911. She woke up in the ER to the shocking news that they had found a mass in her brain that was causing her seizures. An MRI confirmed the diagnosis, and Sam had to undergo emergency brain surgery.

Grade 2 brain cancer (astrocytoma with IDH1 mutation) had more than just physical effects; it also deeply impacted Sam and her family’s mental well-being. (Editor’s Note: An astrocytoma is a tumor that develops in the brain or spinal cord and grows from star-shaped or astrocyte cells. An IDH1 mutation is a mutation in the enzyme-making IDH1 gene, which can result in cancer.) Sam spoke with her son Felix honestly, aiming to teach him about what was happening to her instead of making him afraid. Her husband was overwhelmed by the sudden shift in their family dynamics. Sam realized the importance of open and honest dialogue, emotional check-ins, and seeking professional support in helping her family maintain its mental health.

After her surgery, Sam had to have radiation treatments and chemotherapy. She found the treatments grueling, given the lifestyle adjustments, dietary restrictions, and emotional hurdles she had to deal with as a result. But through it all, she was still able to find light in the darkest moments, whether through joking with medical staff or cherishing time with her son and husband.

Sam’s message is clear: seek medical advice when something feels off, prioritize self-care, and embrace support from those around you. Watch her video and find out more about:

How a seizure led to a completely unexpected diagnosis.
The subtle symptoms Sam thought were due to holiday and work stress.
How she prepared her young son Felix for really tough news.
The surprising realities of being awake during brain surgery.
Why mental health is so vital in cancer care.

Scroll below to read the full transcript from Sam’s interview!

Name: Sam D.
Age at Diagnosis:
- 37
Diagnosis:
- Brain Cancer (Astrocytoma with IDH1 Mutation)
Grade:
- Grade 2
Symptoms:
- Consistently feeling overwhelmed
- Seizures
Treatments:
- Surgery: awake craniotomy
- Radiation therapy
- Chemotherapy

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

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

Transcript of Sam’s Interview

Hi, I'm Sam
When I first noticed something was wrong
What happened next
The moment everything changed
How I prepared for surgery
I was awake during my brain surgery
I got my results five weeks later
What my treatment options were
My treatment plan
The plan moving forward
The challenges of my diagnosis
My message of hope

Hi, I’m Sam

I am a mom to an amazing six-year-old boy. He is the light of my life. I own a photography business that brings me so much joy.

I remember going into the bathroom and brushing my teeth afterward. And I remember setting my toothbrush down, and I very vaguely remember falling backwards. But I don’t remember anything beyond that.

I was so stunned at the entire event. And I think, knowing that when you hear you have a mass in your brain, I don’t think I registered immediately that that meant I have a brain tumor.

When I first noticed something was wrong

I started feeling a bit off. The weekend before I was admitted to the hospital, I started just feeling off, and I thought it was compounding stress. We were in the closing window to Christmas, and we hosted Christmas. My initial thought was that I was just stressed to get to the end of the year. And I had said something to my husband, we were snowboarding that day, and I said, I just don’t feel 100%. I don’t feel like myself. I feel like I’m just too stressed to make commitments. And I think he brushed it off like, yeah, we’ve got a lot going on. And as did I. And then we went back to Denver and stayed. We’re getting ready for the week, the weekend to end into the beginning of the week.

And on Sunday night into Monday we I ended up experiencing what I thought was food poisoning. And I was experiencing that every once in a while for the last few years, and I just assumed that I was maybe developing an allergy to something or developing a food intolerance. But what led me to be sick for a solid four hours? The last time I got up, I fell in my bathroom and fell into a seizure. Thankfully, my husband was home and caught it immediately and called 911 when he realized I was seizing. And that it was a very short time, I think, in the grand scheme of things. And I don’t know if I would have ever assumed that food poisoning like symptoms, and maybe not being able to bear the weight of stress was causing me to, or showing me that I had something going on internally.

What happened next

I got admitted to the hospital. The newest and greatest one, actually, which was really lucky timing for me. I had my seizures around 4:30 in the morning, and I came to between 730 and eight in the morning. And by that time, I was in an emergency room. I was admitted into an emergency room, an actual room. And my husband and son were sitting on the waiting room chair there. And when I woke up, my husband said, Sam, you had several seizures this morning. They did a CT scan when you got here. They found a mass in your brain. They’re prepping you for an MRI, and a neurosurgeon is coming to talk to you.

So that was the first thing I heard when I woke up. And I believe, or I feel like I asked him to repeat that because I was so not only out of it, but extraordinarily confused that I was in an emergency room and had zero recollection of how I got there and the events that led up to it. I went in for my MRI. Very shortly after, the neurosurgeon was in the office or in the emergency room with me. And he said, You have a mass in your frontal right lobe. It is putting pressure on your brain, which is now causing these seizures. You need to have surgery immediately in order to survive.

The moment everything changed

I was so stunned at the entire event. And I think knowing that when you hear you have a mass in your brain, I don’t think I registered immediately that that meant I have a brain tumor. It did take me a little bit of time to become more cognitively aware later that day, and just really sit with the fact that I have a brain tumor and they’re just going to remove it and everything’s going to be fine. And that’s really where my head and positivity came from. And that’s far from the reality of what having a brain tumor really is. And it was a little bit disheartening knowing that reality later.

And as things went on, I think it took me a while to really process what it meant to have a brain tumor and to hear that you have a brain tumor. I had just turned 37 the month prior, so I was just recently I was hitting my late, late 30s and making jokes about getting older. But I believe that getting older is a blessing, and I wasn’t quite prepared to be the youngest person in a treatment center for the condition that I have.

How I prepared for surgery

It was an emergency call to my lawyer to make sure my will and my living will were up to date. And that was really where my stress was. I was making sure that my son Felix was just taken care of if something were to happen to me. His dad’s passing when he was two is incredibly tough. And just him having to go through all that, and him and I together, and then now getting married again last year, just a few months before I found out I had a brain tumor.

I wanted to protect Felix. Even while being in the hospital and being tended to by the nurses and doctors, Felix was there too. I really wanted to make it positive and that being in the hospital wasn’t always scary, and that they are there to help fix the problem, and that that’s what they went to school for. So I’m trying to use that with him to be positive. But I was terrified for him. And later, we had those conversations too. He’s pretty in touch with his emotions and seemed pretty scared. My husband also did. And I think just the burden and weight.

I hate to say burden, but the burden of taking on our entire household and our life all of a sudden at four in the morning, I was suddenly not in the home. I wasn’t able to drive for months and everything, and we had no idea going into it that that was it. But I felt the fear in his voice when he told me, and I can just tell I had felt it over the last few months as we’ve digested and talked about the initial moments and being in the hospital and how much stress that and a burden that he took on himself to go ahead. Just taking it in stride together has been the most positive part.

I was awake during my brain surgery

They admitted me to the ICU and monitored me. And he said that very kindly and humbled me in the thought that I was I could leave and come back. I spent the first part of the week in the ICU taking various medications to make sure I didn’t have any more seizures and doing all the bloodwork, etc. to make sure I had I was properly set up for the procedure. And one thing that came up, because it’s on my right side and I’m left-handed, was that I had to be awake for the craniotomy as well. So I spent he prepped myself that it was going to be two hours for the surgery, that I would be in and awake for the entire surgery for two hours, and then I would be done and on my way. The surgery ended up being about 5.5 hours, and I was awake for the entire surgery.

I was a bit surprised to have surgery awake, as I mentioned. But I also was a bit surprised that I was sitting up the whole time, too. They have your head in a vise, and they kept me sitting upright. And what I remember was the anesthesiologist. I was sedated on my right hand side, and the surgeon was on my left hand side. I’m assuming he was kind of coming this way directionally. If I remember correctly, barely. Thankfully, there was enough sedation that I was lucid in that way. So sitting up, and I could hear everybody talking and you know, reacting to things and their interactions as well in terms of the frustration that I could. I could hear the initial grabbing of the tumor. And that’s why it took a little bit longer. They were hoping to also have initial pathology results back during surgery, and make sure they got as much of the tumor as they could. Generally, you can’t, because it does. If they go too far into the brain matter, they can certainly hurt you more than they can help you at that point, too. And that’s where people end up having dysfunction. I do remember him getting frustrated, and maybe he said that I got a little anxious because I reminded him that the Broncos were still playing every hour.

And they did call my husband and told him. Sam’s still saying that the Broncos are on tonight, so she’s in good spirits and really looking forward to this game. But the surgery itself was a bit shocking to be in and awake and alert for the actual procedure. The most jarring part was actually getting the incision of the bone out, like you’re sawing the bone, because I was awake for that. And there’s no way you can really make that not painful. So that was the most painful part. And my incision goes all the way. I have hair now. All the way around. I have some great pictures of my incision. But it was much larger than I expected. And the picture I took the night before. They did little shaved spots around where they mapped, where the vise was going to hold my head together. Really lovely photos of that, too. I wish I could capture how sad I felt about losing little tiny bits of hair there, where I did lose a large chunk of hair. With it, they shaved this the during surgery, and I lost more with treatment later.

I got my results five weeks later

A little bit of relief came when the doctor came in and he said, You have a grade two astrocytoma and a few mutations with it, one of them being IDH1. And that can be hereditary or it can be environmental. I found out after thinking that I had the hereditary one, that I actually have the environmental one. It can be stress or exposure to toxins and things like that. And there’s no way of knowing when or what toxins or what you can do to avoid that exposure. And the other mutation I have is that it has a very slow-growing brain tumor. I’ve had the actual tumor for years, if not decades. And the astrocytoma, at one point, mutated into that grade of tumor. And that’s likely what the stress and the IDH1 mutation are.

I was in shock. Yeah. And I felt like at that point, especially along the way, and the months following and the weeks before that, I had zero alone time. I most frequently hear that nobody wanted me to be alone if I did fall into a seizure or something happened, or I needed something that I was not able to do yet because I wasn’t able to, like, lift anything heavy or, you know, do a lot of normal, functioning things within the day. So I think the shock was a bit of biggest part of it for me was that I just was like, okay, I do have cancer. Like what’s next? And that I was really more focused on what the path forward is. Like, am I going to die, or is this like what is going to happen? And that is a very hard thing to hear, regardless. I found myself. Later on, any moment that I would be alone, especially in those first few weeks of really processing, I would find my little times to just like, have a little cry, or just shed a few tears just to feel like just to feel. But I didn’t want to. I didn’t feel like I was the doom and gloom, and I didn’t want people to feel sorry for me in that way. I did try to hold it to be a little bit more of a private grieving on that side.

I told my son a few days after I found out that I wanted to make sure it was an educational opportunity for us. I don’t think that when I was six years old that I understood or knew what cancer was or understood the impacts on the close circle. I kind of prepped everybody, and I said, Please don’t cry like I have cancer and have brain cancer. And encapsulated what my treatment plan was going to look like. And the positive side of extending my life and the quality of life. But the hopes that this doesn’t come back. And my husband. That’s a good question. But we were together, and I think he just really held a lot of space for me and just really wanted me to kind of lead with what emotions we wanted. We’ve had some cries. It’s been a hard year. First year of marriage. That’s been compounded on that.

What my treatment options were

One option that I did not get in the hospital before the surgery was you do nothing. Because I believe that before the surgery. And they did believe, too, that if I did nothing, my chances of surviving within days were probably a little to nothing. So, thankfully, my oncologist did say you can do nothing. And live with post-surgery and the chances of recurrence for the brain tumor to grow back, and to be more aggressive, and to ultimately take over. My chances of survival for five years were under 20%. Statistically, and for astrocytoma specifically, they generally have two types of chemo treatments along with radiation. So they do one that’s one, a single pill, and a radiation combination. And the other one is a cocktail of three different types of chemo and a radiation combination. The one with the three different chemos that you take has been around a little bit longer, and they’ve seen a lot of people live into multiple decades. And that one has a lot of research and positive results because it’s been around longer. The other new chemo, like single chemo and radiation, has not been around as long. And that one doesn’t have as much in terms of longevity that they know about yet, because it hasn’t been around long enough that they’ve used it on brain cancer patients.

But the other one seemed a little bit more positive. And I’ve since joined a bunch of brain tumor support groups and specifically for astrocytoma. And several people have lived for multiple decades with astrocytoma and have had the same treatment. So it made me feel much more comfortable going with that route. The oncologist did recommend the chemo route, which I went over the other one, just due to research, but he said both he felt very comfortable saying and hearing your life expectancy going up to 70 percent for over ten years. I measure the time with my son. If I were to pass in under five years, he would lose both of his biological parents before he’s 11 years old. And how was that fair to him? And that’s really what was making me most emotional. Was that fight for him and not putting him in a place in his life that he deserves? Hearing that and just mentally preparing to go through radiation and chemo was a big lift. I did call and make that decision about a week after I found out. And it moved pretty quickly. I was a week later getting fitted with my mask that they put on your face for radiation. And I was in radiation very shortly after. And chemo followed.

My treatment plan

I did kick off my treatment plan with 27 rounds of radiation. It was supposed to be 30, but the doctor had said that that was the higher end of treatment for me. But the way my resection for the brain tumor went and the way my scan looked right before, they felt comfortable reducing the session. I went five days a week, Monday through Friday, into these sessions, which were relatively easy for what they sound like. I enjoyed the nurses and the staff there. We had a good time, and I was coming in with funny jokes instead of saying my birthday every day because we all knew it. We were all friends there. Now that I would say, oh, did you know on my birthday this happened or that this happened that year? Or what was the top song in America? It was a fun way to bring things together in that way.

And about four weeks post, I started chemo. They did break that up. And I do a mixture of three different medications. Day one, it’s four cycles, and each cycle is 42 days long. And within those 42 days, I take three different medications.

One is an IV into our oral pills that I’m able to take at home. Day one is a single medication that I take. And it makes you kind of sick for a few days after. And I experienced quite a bit of nausea. I do manage through nausea, medication, and things that make it a little bit easier. And then I go in and do an IV infusion, and I start another medication for two weeks. And that one’s the most aggressive. I am not allowed to eat cured meats, aged cheeses. Most sauces or soy sauces. Anything that has any alcohol or soy, like any source. In general, I can’t touch rubbing alcohol. So there are a lot of restrictions, and it’s very difficult to eat out. I’ve utilized AI to upload different menus at restaurants and asked, “What can I eat at this restaurant with this medication that I’m taking?”

The plan moving forward

I’ve not had any clinical trial discussions. And my plan moving forward after this, for my understanding, is just to monitor. I’ll be getting MRIs every three months. My last one was in May and had positive signs of progress from the radiation treatment. My next one in three months should be this month in August. And I’ll have one more at the end of the year. So every three months for the foreseeable future, I’ve heard anywhere from 5 to 10 years. So that’s going to be a big stretch of that. But I’m hopeful that is something, and being patient with going every three months, that if anything does happen or anything does recur, we’re able to find it quickly, and maybe mitigate it from being too invasive. I would love not to have brain surgery again. But another fun fact that I found out is that once you find out you have a brain tumor, the chances of recurrence are high. No matter what you do. So I’m hoping that if that does happen, I’m 105 years old and it will be okay. But my other hope is that it just doesn’t. And this is maybe a one-time blip in my earlier life than expected.

The challenges of my diagnosis

My biggest challenge has been being able to live with it comfortably. I have had a full head of hair my whole life, and I think it just changed my appearance so much, especially at the beginning when I was missing all my hair. And I had a very noticeable scar that I couldn’t cover. That I had to really become comfortable with that, or who I was. I found myself very often justifying, like I have brain cancer, or just telling that to somebody. My son even said it to people at school. They’re like, You look so different. Felix’s mom, what’s different about you? And he would even say it. She has brain cancer. Leave her alone. So, whether I want this to be a traumatic event for everybody, it kind of is. I think it’s been hard to come to terms with and hard to keep private, as it’s so physically obvious in my appearance. But I’ve gotten a little bit better, and I’m trying to own it now.

I feel like initially, maybe it’s going to take a little bit of time in this drastic change in my life. Is it just being treated a little bit differently? People started treating me differently or acting as if I were more delicate or needed extra padding around me. I’m very much independent, but I’m also going to push myself in every way I can, and I think the bubble around me, or people hoping to give me the ability or to protect me, has become a big change in my life. Improving that has been a little bit challenging as well. Just being like, I can do this. I’m good. I’m. They said I can do my normal activities. I’m not trying to be extreme by any means. I only got one day of snowboarding in last year, and I’m hopeful that that is not the end of it for me. They promise that I can do all that, but it’s a little bit hard to overcome that aspect as well. Just hearing that somebody had brain surgery. Even my mom, when I called her, said, Wow, I can’t believe how well you’re talking. I just assumed you wouldn’t be able to talk if you had your brain operated on, which I can see is a very valid deduction, but I don’t know if it’s something that we know enough about.

My message of hope

We all go through extraordinarily hard times in life, and if we want to live in or ruminate in the negative and live in that, and it can make us sick, we can go under and live in the stress and the the disheartening feeling of being like, I have a brain tumor, I’m going to die, and this is what’s going to kill me, and it’s the end of the world and living in that is so toxic and so bad for you that living within the positive side of things, or feeling positive and optimistic that you can overpower this and that it’s mind over matter everywhere. And I try to be as mindful of that for myself all the time, losing my husband and becoming an only parent, and then finding out I have brain cancer four years later. I cannot let the burdens and the hurdles in my life take over. What is more positive? And seeing the joy on my son’s face and giving him the best experience in life together, and making memories that last.

I would say if I had one piece of advice for anybody, it would be to take care of yourself. Know that if you’re feeling overwhelmed or stressed, or if something’s not right, it’s okay to just go and get a checkup and look. And maybe that stress can be something else. What most often do we hear? Don’t give yourself an ulcer. Don’t get so stressed. You get an ulcer. But in my world, I’m wondering if I got so stressed that I gave myself a brain tumor. I made my existing brain tumor worse. So. Self-care. Taking care of yourself in every way you can. And that would be my best advice. And finding out and being preventative.

Thank you for sharing your story, Samantha!

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Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

Kelsea Finds Purpose After a Grade 3 Brain Cancer (Oligodendroglioma) Diagnosis

Building a Family While Facing Brain Cancer: Edward’s Grade 3 Astrocytoma

Sam Chooses Hope in the Face of Grade 2 Brain Cancer (Astrocytoma with IDH1 Mutation)

Katie’s Unusual Accident Miraculously Uncovered Her Rare Brain Cancer

Ben’s Grade 3 Brain Cancer (Oligodendroglioma)

Tags parenting

Chemotherapy External Beam Radiation Therapy (EBRT) Head and Neck Cancer Nasal Squamous Cell Carcinoma Orbital exenteration Patient Stories Proton therapy Radiation Therapy Reconstruction Surgery Treatments

Young Mom Melanie’s Stage 4 Nasal Squamous Cell Cancer

Post author By Katrina Villareal
Post date April 7, 2025
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April 7, 2025

Facing Cancer as a Young Mom: Melanie’s Stage 4 Nasal Squamous Cell Carcinoma Story

Despite the excitement of expecting her first child, Melanie faced a life-altering diagnosis at 30 weeks pregnant: nasal squamous cell carcinoma. Her symptoms began subtly, with nosebleeds, sinus pressure, and congestion, all of which she attributed to pregnancy. However, when Melanie’s left eye started to protrude, she sought medical attention. An ENT attempted to examine her nasal cavity but found a mass blocking the scope. Urged to seek emergency care, she underwent an MRI and biopsy, confirming the presence of cancer.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

The stage 4 nasal squamous cell carcinoma diagnosis brought overwhelming fear and uncertainty. Melanie worried about being there for her child and the possibility of someone else raising her. She had to make treatment decisions quickly. Because the tumor had grown into critical areas, immediate surgery was not an option. Instead, doctors recommended chemotherapy, which she would begin after giving birth. Melanie’s hopes for a natural birth shifted when complications led to an emergency C-section. The moment her daughter was born brought a mix of relief and profound love. She held her baby for a day before beginning chemotherapy in the hospital.

Chemotherapy provided initial success, shrinking the tumor in her nasal cavity and allowing Melanie to breathe more easily. However, the tumor in her eye orbit remained unchanged due to poor blood flow in that area. With no clear margins for radiation, doctors advised surgical removal of her left eye and surrounding structures before proceeding with further treatment. The first surgery replaced lost tissue using a skin flap from her arm, followed by radiation therapy. Radiation, unexpectedly, was more physically challenging than chemotherapy, leaving her exhausted and struggling to eat. Despite this, she avoided a feeding tube and completed treatment.

Beyond the physical toll, cancer reshaped Melanie’s mental and emotional well-being. The loss of breastfeeding and the shift in parental roles meant that her husband had to take on responsibilities that they hadn’t anticipated. He became the primary caregiver, ensuring she had the rest needed for recovery. Melanie found solace in therapy, initially struggling to connect with traditional therapists who lacked medical experience. A hospital-based therapist and support groups provided better understanding, though finding peers in similar circumstances proved difficult due to her young age.

Motherhood took an unexpected form, but Melanie embraced every moment with gratitude. Nasal squamous cell carcinoma altered her body, but she is focused on regaining strength and adjusting to her new normal. Regular check-ups and hyperbaric oxygen therapy support her ongoing healing. Though life will be different, Melanie remains hopeful, emphasizing that even in the darkest moments, happiness can be found. Her experience underscores the importance of mental health support, a strong community, and finding purpose beyond the diagnosis.

Name: Melanie S.
Diagnosis:
- Nasal Squamous Cell Carcinoma
Staging:
- Stage 4
Mutation:
- p16 positive (HPV-related)
Symptoms:
- Nosebleeds
- Sinus pressure
- Congestion
- Eye protrusion
Treatments:
- Chemotherapy
- Surgeries: orbital exenteration (left eye removal) & reconstructive flap surgery
- Radiation therapy: external beam radiation therapy & proton therapy
- Hyperbaric oxygen therapy

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

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

Thank you for sharing your story, Melanie!

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Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

Post author By Chris Sanchez
Post date January 21, 2025
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January 21, 2025

Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

Krystal, a 42-year-old mother from Georgia, shares her journey after being diagnosed with Stage 4 IgM kappa multiple myeloma in June 2022. Before her diagnosis, she experienced troubling symptoms like tachycardia, shoulder pain, and shortness of breath, but initially dismissed them as effects of aging, weight gain, and other factors. A critical moment arose when she felt a severe pain in her back, leading to an urgent care visit, where she learned it might be cancer. Her 2 daughters were present during the devastating diagnosis.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Krystal emphasizes the importance of self-advocacy in navigating cancer treatment. Initially overwhelmed, she grew to actively participate in her care, seeking multiple opinions and eventually finding a team that communicated effectively and monitored her condition closely. She initially underwent chemotherapy and a bone marrow transplant, which provided temporary relief. However, persistent relapses led her to pursue CAR T-cell therapy, a promising avenue that has since improved her condition.

The journey has strengthened Krystal’s bond with her daughters, who have been her caretakers and constant support. She highlights the mental health challenges accompanying cancer, advocating for therapy and open communication. Despite the physical and emotional toll, she leans on her faith and resilience to maintain a hopeful outlook.

Community support plays a pivotal role in Krystal’s coping mechanism. Family, friends, colleagues, and online connections have provided essential emotional and practical support, allowing her to manage daily life and medical responsibilities. While acknowledging she is no longer the person she once was, she embraces her new reality and encourages others facing similar challenges to advocate for themselves, accept help, and stay encouraged. Her story is one of perseverance, faith, and the transformative power of love and community.

Name:
- Krystal S.
Diagnosis:
- IgM kappa multiple myeloma
Staging:
- Stage 4
Initial Symptoms:
- Back and shoulder pain
- Tachycardia
- Heart palpitations
- Shortness of breath
- Loss of appetite
- Fatigue
- Malaise
Treatments:
- Chemotherapy
- Bone marrow transplant
- CAR T-cell therapy

Thank you to Johnson & Johnson for their support of our patient education program! The Patient Story retains full editorial control over all content.

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

Table of Contents

Introduction
Pre-diagnosis
Reaction to the diagnosis
Finding the best care
The importance of self-advocacy
Treatment plan for IgM kappa multiple myeloma
Her motivation
Her mindset
Creating community
Her life right now
What Krystal wants to share
More Multiple Myeloma Stories

… as hard as myeloma is, you can still come out of it and still rock it.

Introduction

Hi, my name is Krystal. I currently reside in Georgia. I am 42 years old. I was diagnosed with IgM kappa Multiple Myeloma in June 2022.

I am a mother of two beautiful young adult daughters. I am an accountant. I love light hiking, walking on trails, parks, painting, and just spending time with family when I can.

Pre-diagnosis

Before I got diagnosed with multiple myeloma, I was having tachycardia, shoulder pains, heart palpitations, shortness of breath, nausea, loss of appetite, and back pain. My resting heart rate was at 130 beats per minute, which is not normal at all. And these things were not getting better with over-the-counter medicine.

I was also experiencing some weird pop-like sensations. After I felt the first pop, which was on the right side of my chest area, I went to the doctor and they told me that I had probably pulled a muscle. They did do a chest x ray, but that was clear. And after that, the shortness of breath progressively got worse, as well as the heart palpitations.

I went to the doctor again in probably the second week of June 2022, and I got an EKG done. It was normal sinus. And then the next day, I felt another pop, this time on the left side of my chest area. I didn’t go to the doctor because of the diagnosis last time.

About a week after that, I felt and heard a really loud pop in my back and fell to the ground in excruciating pain. Later on that evening, I ended up going to urgent care and they did a bunch of tests and scans. That’s when they told me that it looked like cancer. I was finally diagnosed with multiple myeloma in June 2022.

I just couldn’t put my finger on what was happening to me. I would blame it on things like my age, the fact that I had gained weight, and so on. It was just extremely frustrating because I didn’t have any answers and I couldn’t figure it out. But never in a million years would I have thought it was cancer.

Reaction to the diagnosis

When I heard that, looking back, the first word that comes to mind is devastation. We cried so hard that day. It was just unbelievable. And it really felt surreal — this can’t be happening. There is no way that I have cancer.

My daughters were with me at that time. We were just heartbroken. I think I blanked out at that point, and I don’t really remember anything else until one of the days I was in the hospital.

There was so much I had to learn. I have extensive bone damage, including lesions literally all over my body from the skull, all the way down. So I was confused — how is it a blood cancer? You’re talking about my bones all the time. They did explain it, but there was just a lot going on.

But the doctors really did educate me. And then I was overly consumed with trying to learn about multiple myeloma and read and do my own research.

Finding the best care

I saw a doctor while I was in the hospital, and she is still currently my oncologist. I did also see a multiple myeloma specialist, which is something that other multiple myeloma patients should also consider doing. So I had that team of doctors to support me.

However, that team was not the best. I just feel like the communication wasn’t there, and I really feel like they dropped the ball with me. I also don’t think they were monitoring me as closely as I needed them to.

So now I see another specialist, and this team is awesome. They are really on top of things. I’m getting blood work, bone marrow biopsies, and bone surveys, which are X-rays.

Also, the communication is great. They have different numbers that I can call anytime and I can ask them as many questions as I want. They will call me back. I’m always going to get an answer. If they don’t know something, they’re going to figure it out.

They’re also making sure to monitor me. Right now, it’s not as often as before, when it was as often as every day, even on weekends and holidays.

The importance of self-advocacy

I think self-advocacy is one of the most important things that you can have when you’re dealing with cancer. In the beginning, I was so scared. I didn’t know what was going on. And so I was just going with the flow. But I’ve been in the game for a couple of years now, and so I’m asking all the questions.

You just have to speak up. I mean, let the doctors know how you feel. If you don’t want to do something, let them know and discuss it with them. And maybe there are other options. They should be talking to you about those things.

It’s your body and it’s your life, and you deserve the best. I mean, it is so hard going through this, and you need to have a team that you feel like is for you, and who’s going to support you no matter what.

I’ve talked to my specialist about getting the vaccines again. I’m on the fence about that. And she said, that’s okay. If you don’t want to, you don’t have to. She explained to me, it’s about exposure and you might have to do some lifestyle changes, but if you don’t want to, you don’t have to. And I love that.

Definitely speak up. I know, sometimes it can be intimidating, but you just have to. You’ll get used to it.

I keep going and fighting because I love life and I want to be here.

Treatment plan for IgM kappa multiple myeloma

Chemotherapy

I first started intravenous chemotherapy in August 2022. Initially, I would have to go twice a week for that IV chemo, and each session took about 4 hours or so. I wasn’t doing well in the beginning, so I did pills as well, daily for 21 days and then off for a week.

I didn’t feel really bad. I mean, I was sleepy because I had pre meds. And then after the second treatment, I was starting to feel better. And so then after that, I just got better and better.

However, I ended up relapsing at least 2 or 3 times. And usually when I relapse, I know something’s going on. My body just feels prickly and I get a little achy. And the fatigue gets a lot worse. That’s how I know — oh, something’s happening.

Bone marrow transplant

I had my bone marrow transplant on February 28th, 2023. I would say that the procedure itself is simple; everything before the transplant, as well as the recovery, is all the work.

So beforehand, I got a large dose of chemo and that made me really fatigued. I also experienced nausea, mild vomiting, and diarrhea. And then I got my transplant, which took just 10 minutes and I felt fine immediately afterwards.

After the procedure, you just build up strength. You go through a basement period where you really, really feel bad, where your immune system plummets down to nothing. And then it ramps up.

It took me about 2 weeks before I felt better. And then that’s how long you’re usually in the hospital, or at least it was for me.

But after my bone marrow transplant, I quickly relapsed. The bone marrow transplant ended up lasting me maybe 2 or 3 months at the most. And the old specialist that I had didn’t have a plan, and so my oncologist was trying to figure out what to do next. That’s where I feel they dropped the ball. The myeloma had gotten out of control, and then finally I started another chemo regimen.

And that is when I started seeing the new specialist, and she told me, since the bone marrow transplant did not work for you, you need to do CAR T if you relapse again. And so we had a plan. So when I was in the hospital for that month, it was so I would stabilize in order to get CAR T.

CAR T-cell therapy

Just like with a bone marrow transplant, there’s a lot of stuff that you have to do prior to getting CAR T. There are so many appointments and so many tests. And then finally you get to the CAR T procedure itself.

I had my CAR T procedure on September 3, 2024. It took me maybe only 15 minutes. As an aside, it tasted and smelled like tomatoes to me, and they say it can taste like tomatoes or creamed corn for some people.

After CAR T, my body would feel sore, but other than that I would be feeling fine.

I’m done now with CAR T and I’m feeling good.

It’s not my time to go yet. I am too young.
So I have to fight and get through it.

Her motivation

I keep going and fighting because I love life and I want to be here.

I have 2 beautiful daughters that I want to be here with. It’s not my time to go yet. I am too young. So I have to fight and get through it.

People probably wouldn’t believe me if I were I tell them all the things that have happened. But yeah, I’ve gone through them. I’m a resilient person, and I’m truly blessed. And I’m thankful that I’m here and I’m going to keep fighting.

My daughters are amazing. They have taken care of me throughout this whole time. They literally stopped their lives to take care of me, and I just appreciate them so much. We’ve gotten a lot closer, and we were already close. But, you know, this brings a better bond. Because they are with me every step of the way. And they’re my cheerleaders.

My girls have gone through a lot. It’s [a parent’s IgM kappa Multiple Myeloma diagnosis] mentally draining on them as well. But they handle it well. They rely and lean on each other a lot. We definitely keep the communication going. I’ve had them in therapy. We just keep praying and just try to keep positive.

Her mindset

I haven’t been diagnosed with multiple myeloma that long, I’m going on 3 years. Having relapses as often as I have had is tough, but I have to keep going.

Mental health, I think, is a huge factor. I don’t think it gets discussed enough. I think anybody that has a cancer diagnosis, and maybe their family too, would need to speak with somebody. I will be honest. I haven’t talked to a therapist as much as I would like to, but I have seen one, and it absolutely helps.

I also try not to stay in a negative mindset. I mean, I allow myself to feel all the feelings. They are valid. I’m frustrated, angry, sad, and I do get depressed sometimes. Though I allow myself to be in those feelings, I try not to stay there that long. You have to come up out of it and just get through it. And, really, it’s a day by day thing.

I’m never going to be the same person I was before all this happened. Not ever again.
But it’s okay.

Creating community

Community is so important. You need to have a support system, or you would just be a mess.

I have lots of support from my daughters, my mother, my friends, my family, my coworkers. Without that support system, I don’t know how I would have survived.

People want to help, and there are a lot of good people out there in the world. The little things count so much and are so helpful. I’ve had people bring us groceries or just bring us a meal, come down to visit and clean the house or whatever. That is super helpful.

Coworkers have given me leave donations, and that has been such a blessing, to be able to still pay the bills even though I’ve been in and out of work.

I’ve done online chats and connected with people on Tiktok. That helps. Because just meeting people living with the same thing as you is just really heartening. It really has been almost therapeutic. Because it felt like I found my people.

Her life right now

I’m never going to be the same person I was before all this happened. Not ever again. But it’s okay.

It is hard. You know, you think back sometimes — oh, man, I used to be able to do this or that, or, I used to be so lively — that’s no longer the case. It’s hard and it’s definitely challenging. It takes time to get used to.

But I feel like you’ll be fine once you get to that point where you realize and accept that you’re no longer that person you used to be, but you’re just a different version of that person. I’m still the old Krystal, but I’ve just had to tweak some things.

It did take me a while, though, you know? And even now, I’m kind of hard on myself, so just giving myself grace, learning how to do that.

My biggest piece of advice is to stay encouraged.

I always feel like multiple myeloma has taken literally everything from me.

It’s taken my vision. At one point, I couldn’t walk. I was using a wheelchair. I was in excruciating pain. I’ve had strokes. I’ve had everything. But I’ve come out of it like nothing ever happened.

Hope is a good word. Yes, I hope for the best. And I think I go more towards faith. My faith has gotten stronger during all of this. And that is really what I hold on to.

My biggest piece of advice is to stay encouraged. It is going to be so rough at times. You’re going to feel waves of emotions. It will be like a rollercoaster. But just stay encouraged. Speak up and ask all the questions. Be your own advocate. Accept help. You’re going to need that support from others, and you will be surprised at how many people really want to help you and will support you throughout all of this.

So as hard as IgM kappa multiple myeloma is, you can still come out of it and still rock it.

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

Thank you for sharing your story, Krystal!

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Shayla was diagnosed with metastatic colorectal cancer at 33 years old after years of experiencing unexplained digestive issues. Initially, symptoms like stomach sensitivity, exhaustion, and food intolerances were attributed to a sensitive stomach. Over time, she sought medical attention, including multiple gastroenterologist consultations but received inconclusive diagnoses. She was diagnosed with celiac disease, but despite cutting out gluten, she continued to feel unwell.

After more months of fatigue, Shayla noticed blood in her stool, which persisted for several weeks. When her husband insisted she seek medical help, a colonoscopy revealed polyps. While initially told that they weren’t cancerous, a biopsy later confirmed that one was malignant. Further tests revealed lesions in her liver and lungs, prompting additional biopsies. The lesions in her lungs were clear, but the cancer had metastasized to her liver, resulting in a stage 4 colorectal cancer diagnosis.

Her treatment plan included four rounds of chemotherapy, followed by a hepatectomy or liver resection to remove 25% of her liver. After the surgery, Shayla began her chemotherapy again, with plans for more rounds to finish her treatment. Although she initially struggled with side effects, such as hot flashes, nausea, and fatigue, her doctors adjusted her treatment plan to help her manage better. However, cold sensitivity, neuropathy, and physical weakness persisted.

Despite these challenges, Shayla remained focused on her healing and recovery, even as the emotional toll of her diagnosis began to weigh on her mental health. She shared that the isolation during recovery and the struggle with seeing her children react to her illness was particularly difficult.

Shayla advocates for others to take their symptoms seriously, stressing the rising rates of colorectal cancer in younger adults. She encourages others to seek second opinions and advocate for themselves if they’re not satisfied with their medical care. Through her experience, she has seen the importance of a strong support network and the need for proactive health care, urging others to catch cancer early to increase treatment success.

Name: Shayla L.
Age at Diagnosis:
- 33
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 4
Symptoms:
- Stomach sensitivity
- Food intolerances
- Exhaustion
- Blood in stool
Treatments:
- Chemotherapy
- Surgery: hepatectomy (liver resection)

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

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

Thank you for sharing your story, Shayla!

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Lindy’s Stage 4 Colon Cancer Story

Post author By Katrina Villareal
Post date December 17, 2024
No Comments on Lindy’s Stage 4 Colon Cancer Story

February 4, 2025

Lindy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Lindy was diagnosed with stage 4 colon cancer when she was two months postpartum at age 34. During her pregnancy, Lindy experienced severe abdominal pain, changes in bowel movements, blood in her stool, and significant discomfort, all of which she initially attributed to pregnancy. Unbeknownst to her, these symptoms were indicative of colon cancer, which was eventually discovered during a routine full-body MRI for a previous benign brain tumor and spinal tumor.

Doctors identified malignant cancer had spread to her colon, lymph nodes, liver, and lungs. The shock of her diagnosis came at a time when Lindy was navigating the challenges of new motherhood. She took an active role in researching her diagnosis, and while the news was overwhelming, it helped her process the information before meeting with her oncologist.

Lindy’s treatment began swiftly with chemotherapy in January following her December diagnosis. Although surgery was not considered an immediate option due to the cancer’s spread, chemotherapy has been her primary treatment. She transitioned to maintenance chemotherapy, as her body responded well to the treatment with minimal side effects. While she still experiences some numbness from neuropathy, she considers herself fortunate for not facing more severe symptoms.

Throughout her experience, Lindy has been grateful for her medical team, who never dismissed her concerns despite her young age. While colon cancer is typically seen in older individuals, Lindy’s case is part of a growing trend of younger people being diagnosed with the disease. This has prompted her to encourage friends and family to undergo early screening.

Lindy is realistic about her prognosis, understanding that while her cancer is not curable, it is treatable, and she remains hopeful for potential advancements in treatment. She has made practical preparations for the future while focusing on enjoying life with her son and husband. Lindy’s strong support system has helped her navigate both motherhood and cancer.

Lindy emphasizes not spiraling into despair. Instead, she encourages others to seek out a supportive care team, possibly including palliative care to manage pain symptoms, and to focus on living in the moment. Lindy’s outlook remains positive, bolstered by the progress she’s made and the hope for future treatment developments. Despite the challenges, she is determined to live as fully as possible, enjoying time with her loved ones.

Name: Lindy A.
Age at Diagnosis:
- 34
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptoms:
- Blood in stool
- Changes in bowel movements
- Pencil-thin stool
- Severe abdominal pain
- Loss of appetite
- Rapid weight loss
- Anemia
- Fatigue
Treatments:
- Chemotherapy

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

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

Thank you for sharing your story, Lindy!

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Kate’s Stage 4 Colon Cancer Diagnosis Story

Post author By Chris Sanchez
Post date December 11, 2024
No Comments on Kate’s Stage 4 Colon Cancer Diagnosis Story

December 11, 2024

Kate’s Stage 4 Colon Cancer Story

Kate, a 36-year-old mother of 2 who enjoys baking, cooking, and snowboarding, shares her journey with stage 4 colon cancer diagnosis. Her path began with a bowel obstruction leading to hospitalization, followed by scans and a biopsy that confirmed cancer in July 2024. Reflecting on her symptoms—bloating, fatigue, severe cramps—she regrets attributing them to motherhood or hormonal changes and stresses the importance of addressing persistent health issues early.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Kate describes the emotional impact of her stage 4 colon cancer diagnosis as both expected and surreal. Communicating with her young children and family required straightforward, factual discussions to manage their fears and understanding. She educated her children about cancer in simple terms and reassured her family with facts from her oncologists, focusing on the hope provided by her age and health.

Treatment decisions revolved around addressing metastasis. Doctors prioritized chemotherapy over surgery to prevent further spread. Kate began chemotherapy in August 2024 and recently completed her 7th round, with promising results. Scans reveal shrinking tumors and no new metastasis, but the journey involves significant physical and emotional challenges. Side effects like fatigue, nausea, and allergic reactions require her to balance medications, while the treatment’s toll affects her parenting and overall well-being.

Despite setbacks, Kate draws strength from her children, striving to be present and hopeful for them. She acknowledges moments of mental fog and emotional numbness but believes that these effects will pass. Therapy and anti-anxiety medications help her navigate the overwhelming experience, allowing her to sleep and avoid panic attacks.

Kate’s medical team emphasizes her strong physical health and determination as assets in her fight. The instilled hope drives her forward, propelling her to focus on survival and recovery. She views hope as integral to enduring treatment and planning for the future.

Through her experience, Kate highlights the unpredictability of cancer, even for those who live healthily. She urges others to prioritize their health, advocating for awareness of symptoms and proactive conversations with doctors. Her advice to newly diagnosed individuals centers on using facts to ground themselves, staying informed, and resisting the urge to let cancer define them. By holding onto facts and hope, she believes individuals can find the strength to face their diagnosis and remain resilient.

Kate’s story underscores the value of early detection, mental resilience, and the support of loved ones. Her commitment to her children and belief in her strength reflect her unwavering fight against cancer and her determination to reclaim her life.

Name:
- Kate J.
Age at Diagnosis:
- 35
Diagnosis:
- Colon cancer
Staging:
- Stage 4
Symptoms:
- Bowel obstruction
- Bloating
- Exhaustion
- Severe cramps and period pain
Treatments:
- Surgery
- Chemotherapy

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

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

Thank you for sharing your story, Kate!

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

My Name is Sorcha

Taylor Swift Trip to New Orleans

Girls’ Beach Trip and No Mo’ Chemo

Wigs and Hair Choices

Early Sarcoma Symptoms and Dismissed Concerns

Primary Care, Tests, and ER Referral

Emergency Room Visit and Mass Discovery

Timeline to Official Diagnosis

Hearing the Diagnosis and Treatment Plan

Telling My Husband, Parents, and Friends

Researching Care Teams and Protocols

Chemo Before Surgery

Hair Loss and Shaving My Head

Chemo Side Effects and Lasting Impacts

Anticipation and Strategy for Surgery

Surgical Outcome and Sharing Tumor Photos

Sharing on TikTok and Helping Others

NED Status and Upcoming Surgery

My Biggest Emotional Challenge

Parenting Through Treatment

Meaning of Survivorship

Hopes, Dreams, and Everyday Goals

My Advice and Message to Others

My Thoughts on Mental Health and Hope

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Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL

Key Story Takeaways:

Facing the Unexpected: Early Signs and Diagnosis

A Young Mother and a Rare Diagnosis

The Unseen Struggle: Emotions Behind the Experience

CAR T-cell Therapy and Next Steps

Advocacy and Self-Empowerment: Lessons Learned

Advice for Others: Faith, Family, and Resilience

Moving Forward: Transformation and Community

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Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses

Hi, I’m Deb

My diagnosis and how my family and I handled it

Navigating urgency and my first treatments

Advocating, community, and mental health

My second diagnosis: finding out I had a new cancer

Living with metastatic breast cancer

Advocacy and support organizations

My advice for others

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Sam Chooses Hope in the Face of Grade 2 Brain Cancer

Hi, I’m Sam

When I first noticed something was wrong

What happened next

The moment everything changed

How I prepared for surgery

I was awake during my brain surgery

I got my results five weeks later

What my treatment options were

My treatment plan

The plan moving forward

The challenges of my diagnosis

My message of hope

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Facing Cancer as a Young Mom: Melanie’s Stage 4 Nasal Squamous Cell Carcinoma Story

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Krystal’s Stage 4 IgM kappa Multiple Myeloma Story

Introduction

Pre-diagnosis

Reaction to the diagnosis

Finding the best care

The importance of self-advocacy

Treatment plan for IgM kappa multiple myeloma

Chemotherapy

Bone marrow transplant

CAR T-cell therapy

Her motivation

Her mindset

Creating community