Kina’s Stage 4 Colorectal Cancer Experience Highlights Fierce Self-Advocacy
Living in Canada, Kina always thought her intermittent IBS symptoms were just another part of her daily life, especially after becoming a mother. It was only when she noticed a flare-up in her IBS symptoms and, more ominously, blood in her stool that her doctor finally scheduled a colonoscopy, revealing a mass and launching her into a world she never expected as a stage 4 colorectal cancer patient. For months, doctors assumed it was an early-stage disease. But pneumonia-clouded scans hid cancer that had spread to her lungs, and only through persistence and a PET scan was the correct, advanced staging determined.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
Self-advocacy became her focus. When an Ottawa surgeon offered limited surgical intervention, Kina joined patient groups, found others who also had colorectal cancer, and connected with a Toronto surgeon willing to attempt a more extensive procedure. Chemotherapy was followed by lung surgeries and a highly specialized procedure known as a chemoperfusion. Kina endured side effects like debilitating fatigue, neuropathy, and nausea, but the greatest burden was not being the present mother and partner she wanted to be. But her advocacy, networking, and relentless pursuit of the best treatment shifted her colorectal cancer experience from “incurable” to “no evidence of disease.”
Kina’s colorectal cancer experience deepened her gratitude and reshaped her worldview. Instead of regret over “Why me?” she reflected on why she deserved a second chance when others did not. She now encourages others to value every moment and says, “You just appreciate the beauty of nature, the wind in your face, the beauty of life, the little moments.” Kina’s transformation is profound: she shifted from a busy, overextended mom and professional to a fierce self-advocate and champion of preventive care. As she says, “The most difficult patients are the ones that survive: the ones that fight back, the ones that challenge the status quo.”
Watch Kina’s video and read through her interview transcript below. You’ll learn more about how:
Early symptoms of colorectal cancer can easily be missed or mistaken for IBS. Advocate for yourself if symptoms change or worsen
Getting a second opinion and connecting with others facing similar diagnoses can help make more treatment options available
Peer support groups, research, and information-seeking are critical allies in complex or advanced cancer cases
Kina’s cancer experience made her more grateful, present, and empowered to help others prioritize health and demand the best care
The most stubborn patients are most often the ones who survive
Name: Kina L.
Diagnosis:
Colorectal Cancer
Staging:
Stage 4
Age at Diagnosis:
39
Symptoms:
Flare-up of IBS symptoms
Appearance of blood in stool
Treatments:
Surgeries (through a clinical trial): double thoracotomy, lung resection
Chemotherapy, including chemoperfusion (through a clinical trial)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m from Ottawa, Canada. I was diagnosed with colorectal cancer that had spread to my lungs.
I’m passionate about my family more than anything else. I love being outdoors: hiking, running, biking, camping, and just being among the trees. Reading and the written word are also big passions for me.
My long history with IBS
I’ve had IBS symptoms on and off for my whole life. They would come and go, so they became normalized, which was unfortunate because that can happen with colorectal cancer.
After I gave birth to my kids, my IBS symptoms disappeared for quite some time. I chalked it up to hormonal changes in my body, and I was no longer intolerant to some foods I had been before.
About six months before my diagnosis, my IBS symptoms started flaring up again. I cut dairy and coffee, and I saw some mild improvements. But then, at the end of summer and beginning of fall, I started having blood in my stool. That’s when I thought something was definitely wrong.
I booked an appointment with my doctor, who was already aware of my IBS symptoms. As a woman in my late 30s, I’m always dealing with symptoms and hormone stuff, so we didn’t look into it further at first. She booked me for a colonoscopy at the end of December, and that’s when they found the mass in my colon.
How I advocated for myself before diagnosis
My doctor is very good, so she booked the colonoscopy right away.
At the time, I had a new gig at work that I was excited about, so I was transitioning and initially put off the colonoscopy a bit. As a mom with two kids and two stepkids, plus a busy job, the last thing I was doing was taking care of myself. I had booked it for the end of January, but my partner pushed me to get it done sooner.
I called back and asked for the earliest appointment, so we did it on December 23rd. Christmas wasn’t fun, but at least I got the surgery at the end of January because of the quicker appointment.
My hardest moments leading up to my diagnosis
The hardest moments extend beyond just cancer for women my age; we’re very busy and overextended.
A lot of my girlfriends are dealing with different things, like one working on a PCOS diagnosis and another suspecting endometriosis. We push off getting checked because we’re constantly getting sick from our kids’ colds, and our immune systems are shot down.
I never felt healthy for maybe 6 to 10 months before diagnosis, but it was normalized. My immune system wasn’t working well, and I was getting all the illnesses, which impacted my family.
It wasn’t the cancer symptoms themselves, but my body not working right that was toughest.
My initial diagnosis and staging surprises
When I got the results back, they thought I was early-stage. The mass was pretty small, just four centimeters, and intact in the colon, not going through the wall.
My surgeon, GI doctor, and everyone had a good feeling about it. They removed 47 lymph nodes during surgery on January 31st.
But when I talked to my surgeon about the pathology afterward, he said eight of the nodes were cancerous, and I’d need preventative chemo. That was the first shock — I really thought it was early-stage and I’d go back to work.
Two weeks later, a CT scan showed the lung nodules had grown. I had a bad feeling it was cancer there too, but after the lymph nodes news, I already knew my journey would be long.
For four months, it was shifting from early stage to stage three with chemo, then to stage four and inoperable. I got diagnosed in December, and March was when they officially said stage four.
Colorectal cancer didn’t click for me
I didn’t know much about colorectal cancer at the time. The narrative is that older people get it, so even when I Googled my symptoms, it was worded as risks for people aged 50-plus.
I had a colleague, a bit older than me, who was diagnosed and unfortunately passed away, but because of how people viewed colorectal cancer, it just didn’t click that I could be facing the same situation. The early onset affecting younger people wasn’t discussed much back then. Even with a bad IBS night, googling symptoms didn’t point me to cancer.
Now I’m adamant: even if you have one symptom, get checked, because if I’d gone before the blood showed up, I might have caught it earlier. By then, it was already advanced, very focused on chemotherapy.
Initial treatment options, and my chemotherapy experience
My oncologist described therapy and chemotherapy options. She referred me to the Ottawa surgeon, but she’s not a surgeon, so discussions were limited to chemo and hoping for the best.
I wasn’t eligible for immunotherapy, and clinical trials were more like something down the line. There’s a gap there; I understand standards of care and protocols, but my doctor likely didn’t know about other options like the Toronto surgeon.
If I hadn’t researched and advocated, I’d still be on chemo with the nodules grown and inoperable. They basically put me on chemotherapy for life until I found the surgical option.
The only reason we stopped chemo was for the Toronto surgery. I did six rounds in three-week cycles, about 4 or 5 months.
Chemotherapy is not fun at all. I was lucky to tolerate it well compared to others, but I had neuropathy, fatigue, a kind of metallic mouth where everything tastes like metal (it’s disgusting), and nausea. It was hard to do day-to-day stuff, especially near the end when I was on the max dose.
It was tough being the mom, partner, and friend I usually am. It impacted everything, but I have good people around me: a present partner, my mom always helping, and good co-parenting with my ex-husband. They picked up the slack when I couldn’t.
I rested the first few days after treatment, then tried to be there as much as I could. Sometimes I’d crash or overdo it and feel like garbage the next day on the couch. I forced myself to stay active; a short walk around the block helped manage symptoms. If I felt okay, we’d bike to school, go for a run, or hike to keep that outdoor connection.
I researched, found better options, and had surgery
I did a lot of research right away; I joined virtual conferences and exposed myself to everything I could. At first, it was difficult hearing tough things on a weekend, like attending two online conferences, but now it’s part of my reality.
I started researching to help myself immediately. That’s how I found the Toronto surgeon through Facebook groups.
My doctor accepted the referral, and he was removing nodules via a clinical trial.
After CT scans confirmed eligibility, we stopped chemo, and six weeks later, I had my first surgery on September 25th, a double thoracotomy on both lungs.
They then resected three nodules on my right lung and five on my left, plus a suspicious lymph node that turned out not to be cancerous, which was, of course, great news. The surgeon performed chemoperfusion on my left lung as part of the trial.
I was supposed to be in the hospital for a week, then stay in Toronto another week for a total of two weeks. But I had complications: blood transfusions, atrial fibrillation, lung collapse, and pneumonitis from the chemo inflammation. It was the highest dose they’d done, 40mg, and previous patients didn’t inflame, but I did.
Two weeks in, pneumonitis set in; I was on high oxygen, steroids, and antibiotics. I stayed a month and came home on October 22nd.
Improvements are slow, but happening. I’m still on oxygen when walking or talking; short of breath after almost two months. Recovery from that takes time.
I’m now NED
Technically, I have no cancer in my body right now, and I’m hoping for the best.
We haven’t confirmed with a CT scan yet, but before surgery, the removed lung nodules were the only ones left.
I stopped chemo for the surgery, so no bell-ringing yet, but my friends and family talk about it. I think I should ring it to recognize everything I’ve been through, no matter what comes next in the next year.
When I came home, my mom stayed for five days to help. We were lucky; people took good care of us. My girls are seven and ten, my stepkids are six and eight, so it’s busy and awesome.
Having me away for a full month was hard, but we made it through. They’re so happy to have me back emotionally.
My thoughts on clinical trials
Clinical trials are great for advancements, but they come with risks, and I’m a great example. I found a couple of people who’d gone through this trial before and spoke with them via the Facebook group.
The early-onset stage four colorectal under-50 community is small but growing. Do your research, talk to people if you can, and know the risks because side effects are real.
Sometimes it’s worth it, not just for you but for others who could benefit later. As I mentioned earlier, I’m still recovering; not at full capacity, walking slowly with oxygen.
My mental and emotional journey
I don’t think “why me?” It’s the opposite, like imposter syndrome: why would I deserve to be cured when others aren’t?
The hardest part is knowing that if I’d found it earlier, I wouldn’t be here now. There’s regret for not paying more attention.
I encourage my girlfriends: don’t delay, a colonoscopy is the gold standard for colorectal cancer. So just do it. Many around me took it seriously, got colonoscopies, and had polyps removed; that’s when you want to catch it, not too late.
If there had been more advocacy for early-onset colorectal, it would have clicked sooner, and I’d have acted differently, 100%.
It’s not a gift, but it gives perspective. Right after stage 4 diagnosis, I went for a walk and appreciated everything: the beauty of nature, wind in my face, and little moments. Before, I was busy, saying yes to everything, always on the go with work. No matter what, I won’t operate that way again—life’s too short, take care of yourself.
What I want others to know
Work as hard as you can to advocate for yourself. Make sure the option presented is the best for you.
There are so many treatments, clinical trials, and other things out there. Don’t take the first answer; challenge your doctors. Books say difficult patients, namely the ones who ask questions, fight back, and challenge the status quo, are the ones who survive. Don’t be afraid. You have to take care of yourself.
I think my self-advocacy may have saved my life. If I hadn’t, I’d be in a very different situation.
I was lucky to be positive and resilient; it carried me through. I focus on gratitude because it could be worse. I responded to treatment, found a surgeon, and have people around me.
I have so much to be grateful for. It’s ingrained in me to keep a positive mindset. Colorectal cancer in young people is rising. If you’re experiencing just one symptom, look it up, go for a colonoscopy.
Getting the appointment is tough, but don’t ignore the symptoms, and advocate for yourself.
From Life with a Newborn to Stage 4 DLBCL: Anna Navigates Her Diagnosis Through Positivity
Anna was just settling into the sweet spot of life, running a coffee business with her husband, enjoying her new home, and parenting her toddler and newborn, when she found an unusual lump while breastfeeding. Though it was initially dismissed as a common milk cyst by her OB and even after an ultrasound, Anna’s persistence led to a biopsy that revealed a shocking diagnosis: diffuse large B-cell lymphoma (DLBCL). It was stage 4, an advanced presentation that initially terrified her family and friends, but was quickly clarified by her oncologist as a highly treatable blood cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Facing aggressive chemotherapy and hair loss while caring for an infant and a toddler presented immense emotional challenges. Anna had to stop breastfeeding abruptly and navigate the physical changes of treatment, including shaving her head, a moment she feared would scare her children. Instead, her two-and-a-half-year-old son’s reaction was pure love: “Oh, mommy, you look cute.” This moment, along with seeing a contestant rock alopecia with confidence on The Great British Baking Show, helped Anna embrace her new look and focus on the present joys of motherhood rather than the fears of the future.
Throughout her DLBCL experience, Anna has leaned into her natural optimism, reframing her diagnosis not as a tragedy, but as a challenge she is uniquely equipped to handle. By taking life one day at a time and refusing to wish away her baby’s first year to get to the end of treatment, she has found profound strength. Her story underscores the power of a supportive “village,” the resilience of young mothers, and the importance of advocating for yourself when your body tells you something isn’t right.
Learn more about Anna’s story by watching her video or scrolling down to read her edited interview transcript.
Trust your instincts. Even when medical professionals suspect a common issue like a breastfeeding cyst, push for answers if something feels wrong in your body
Stage 4 isn’t always the end. In blood cancers like DLBCL, a kind of non-Hodgkin lymphoma, stage 4 indicates where the cancer is located, not necessarily a poor prognosis; it remains highly treatable
The “candle” analogy. Chemotherapy treats systemic blood cancer (multiple candles) just as effectively as it treats a single spot (one candle); the “water” extinguishes them all
Children can be resilient anchors. As Anna’s kids show, young kids often accept physical changes like hair loss with surprising ease, and can keep you grounded in the present moment
You are stronger than you think. Adversity often reveals a depth of resilience and toughness you didn’t know you possessed until it was tested
Name: Anna M.
Age at Diagnosis:
31
Diagnosis:
Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
Stage 4
Symptom:
A rapidly growing, painless lump on the breast
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I have diffuse large B-cell non-Hodgkin’s lymphoma, stage 4. I was diagnosed this year in October, and I am from Arkansas.
At this point, my biggest passion, purpose, and what I’m doing every single day is I’m a mom. I have two small boys. I have a two-and-a-half-year-old and an eight-month-old. I worked full-time before having children, but once I did, they were obviously the most important priority. Being able to spend time with them has become my life’s work, now that they exist and are alive. Before that, I worked in journalism, in storytelling, in instructional design. That was my career before children.
My husband and I also own a coffee company. We do events. We take coffee catering to events like weddings, corporate events, and birthday parties. We basically get to be at people’s greatest times, serving coffee and talking to people in the community. It’s really fun. It’s been a really good way to stay connected while I am a stay-at-home mom. I would say my number one passions are my children and then being in the community in some aspect, getting to be involved with people, especially on people’s wedding days. That’s just the most fun thing ever because it’s their happiest day, and getting to witness that, even if I’m just serving coffee, is really cool.
I have kind of always been this way, smiling. I actually had to learn in my adult years how to be angry and how to deal with negative feelings because I had some. At times, it might be toxic positivity, just always being so positive and kind of ignoring and shoving those other feelings to the wayside. But I think as I’ve grown, and especially as I’ve dealt with adversity, I’ve learned that you can have both at the same time. You could recognize the bad and still feel the good and the joy and the positive, which I think has been really important to learn. Cancer has been another thing that has taught me that.
My mom instilled in us when we were little to be able to laugh at ourselves and not to take ourselves too seriously. I think that has just made me always find the silver lining or the brighter side, or to help other people feel that. If it’s kind of like — I’m sure you saw some of my videos making fun of my no hair or bringing light to my baldness — I will make myself not the butt of the joke, but I will make a joke out of something if it means somebody else is going to laugh. If it can bring some positivity and some joy to someone else. I think I can turn situations into that for myself. It’s just always kind of been ingrained in me since I was little.
Life before my diagnosis: new motherhood and business
Right before diagnosis, I had a baby, this April. We were just in the sweet spot of postpartum. We have the happiest baby. He is just the smallest little guy. So we were just really soaking up being second-time parents. We kind of know a little bit more about what we’re doing. We’re not as terrified because we’ve already done it once. Our older child was really excited to be a big brother.
Our coffee business is doing really well. We ordered a coffee roaster so that we could spread our reach; we wanted to be able to sell coffee to people, to be able to ship it, and spread the people that we’re able to serve, rather than just locally. We were kind of just in the groove. We were flowing. Being parents, being business owners — my husband’s also a teacher. So we were balancing all of these different things. Really getting into the groove of being new parents again and just enjoying life. My children and I were going out on adventures in town and playing outside, and just getting ready. I think whenever we found out about cancer, we were prepping for Halloween and getting the costumes ready.
Life just seemed like we were in a really good, sweet spot, which we were. A new baby brings so much joy and positivity. And as I said, he’s a really happy baby, too. We’ve owned this business for four years. So we were really in the flow of that. We were doing some renovations to our home as well because we’ve lived there for four years now. Everything was just kind of in a really sweet spot in life. We were thinking about when we’re going to do some camping trips and traveling because we’ve got the hang of being second-time parents. We weren’t as scared to take our baby out. Everything just seemed like life is good. Nothing’s really wrong. I was getting into the groove of working out again and just starting to feel like my normal self after having a baby. And then everything kind of changed. There’s still a lot of goodness, like I said. But that was life before, just a few months ago.
Discovery: finding a lump postpartum
The main symptoms of the cancer that I have are fatigue, night sweats, a fast-growing, painless lump in one of the lymph node areas (or outside of, in my case), and unexplained weight loss. For me, I was postpartum. Obviously, I was fatigued. I’m not sleeping through the night yet. I had lost weight because I had just had a baby. So that kind of explained it. Nursing and having a new baby and hormone changes — sometimes you do have the occasional hot flash, night sweat, whatever. So any symptom that I was having, I was unaware of because they were all kind of masked as just being a new mom, postpartum, and hormonal changes.
There was one night when I came back to go to bed after putting my son down, and I told my husband I felt a lump. I said, “Does this feel weird to you?” I found a lump in my breast. He was like, “Yeah, that definitely seems like kind of a big lump. Maybe you should call your doctor and get that checked out.”
I called my OB, and she was like, “Oh, we’ll get you in. It’s probably just breastfeeding-related because that happens a lot of the time.” She expected it just to be a cyst of sorts. Then she sent me to just get it double-checked. She was like, “I’m pretty sure it’s just a cyst from breastfeeding. But let’s go ahead and get somebody else who specializes in this to look at it.”
She sent me to get an ultrasound and a mammogram. They said the same thing: “It looks like it’s probably just a cyst from breastfeeding.” I think looking back now, that was probably because it wasn’t breast cancer, so it didn’t present as a typical breast cancer would. Anytime they looked at it, they were like, “Yeah, I don’t know. It’s kind of in the gray area, but most likely a milk cyst.”
Diagnosis: from breast cyst to non-Hodgkin lymphoma
They ended up deciding on a biopsy. Then once the biopsy came back, of course, this all happened in two weeks from when I first discovered it to finding out. They called me. The doctor who did the biopsy called me, and he said, “Your results came back, and they’re very interesting, a little unexpected.” I was like, “Okay, go ahead.” And he said, “Well, you don’t have breast cancer.” I was like, “That’s great news. Thank you. I’m so thrilled.” And he was like, “But you do have cancer.”
I just felt chills and the wave of… I think I started trembling, just thinking, You just told me I had cancer. Did I hear that right? He said, “You have non-Hodgkin’s lymphoma. It’s called Diffuse Large B-Cell Lymphoma. Do you have any questions?” I was like, “Well, yes, but I can’t think of any of them right now.” I think I asked a question that was just the first question that came to my mind, and he was like, “Actually, this is not my area of expertise. I’ve already sent this over to an oncologist. They’ll reach out, and they’ll be able to answer more questions.”
Really, truly, I didn’t notice any symptoms. Even when my blood work was drawn, it was relatively normal. There was no indication that there was cancer. It was really just that fast-growing, painless lump that I felt. Thank goodness I didn’t brush it off or just think, Oh, we’ll see what it does in a few weeks or anything like that. I’m really glad that people took me seriously when I showed, “Hey, I think this is a little abnormal,” because I know sometimes people will do that, and they’ll say, “Let’s just watch it for a little bit and see.”
My initial reaction and the silver linings
In a way, I thought our life was derailed at first. I was talking with a good friend from college the other day, and he was asking me all of these questions and really getting me to think about things I hadn’t thought about yet. I gave him back an answer, and then he said, “I’m not glad that you have cancer by any means. But I am so glad that you are you if this was going to happen to you.” I think what he meant is really just the way I have always just kind of been able to turn something into that silver lining to look for it.
Looking back, I’m just seeing all of these things that set us up for this diagnosis. Yes, we were in a sweet spot, but we were also so set up for this to happen. I bought a house right next door to my mom four years ago, so I have help right next door. I just had a baby, which is like the most joyful thing you can see every day. It reminds you that there is good even when bad is happening. As I said, I have the happiest baby. Anytime I would feel sadness or start to think about what was going on, I would look over, and he’s just smiling at me. It’s like, Okay, this sweet spot that we’re in, this place that we’re at, really sets us up for this to happen.
I also think in my family, not that I would ever want anybody to have cancer, but if somebody in my family was going to have to have it, I’m glad it was me. I feel like that sounds so weird to say, but it definitely feels like if it had happened to anybody else, it would have been harder emotionally for me. I’m looking at my family members and I’m like, I’m so sorry that you have to feel this because I know watching someone you love go through something like this is really hard. Being a mom now, I look at my mom and she’s been so positive and so helpful and so encouraging, but I know that there are times when it’s just really hard to watch your kid go through something like that. I can’t even imagine. My kid has a fever, and I’m like, The world is ending. So it’s definitely been a 180 from the sweet spot. But I know that it set us up to have the best experience that we could if something like this was going to happen.
Sharing the news with my family and friends
Telling people was really hard because I kept trying to find a convenient time. When I found out, I immediately went and told my mom and sister because they work close by. So I was able to get my kids in the car and drive to where they were. I waited until my husband got home that day because I didn’t want him to hear that news while he was in charge of other people’s kids. That is not a good time for that.
I definitely felt a lot of vulnerability and a lot of emotions and a lot of fear right away. You hear the words, and then you don’t know. I didn’t even know what lymphoma was before I was diagnosed. I didn’t know staging yet, or treatment, or what anything was going to look like. That was hardest for me: to not know what was going to happen and to just have so many questions. That’s when I think I showed a lot of my vulnerability and a lot of fear and anxiety. Everybody else kind of met me with their emotions, too, which I think was probably the best response to know. A lot of times, certain medical revelations or diagnoses can almost make you feel like you’re overreacting. When my emotions of fear and anxiety were met with the same, I was like, Okay, this makes me feel validated and like we’re ready to fight together. It was good to be met with that in the beginning. Once I started to know that there was a plan and it’s very treatable, I started to feel more positive, and then in turn, my family felt the same way.
As far as telling friends and other people, I was really nervous. I just didn’t want to inconvenience anybody or cause them to have a bad day. I was looking at people’s locations, like, Okay, are they at work? Are they at a friend’s house? I would text people and be like, “Hey, what are you doing?” And they’re like, “I’m just working. Why? What’s going on?” And I was like, “Oh, nothing. Just, you know, I have a funny story to tell you, but just let me know what you’re doing later.”
No one tells you how to break bad news to somebody else. I tried to make light in a lot of the ways that I told people. I’d be like, “Turns out I have cancer.” And my friends are like, “What? Wait, what did you just say?” And I’m like, “Yeah, I know, crazy, right?” Probably not the best way to do it, looking back, but you don’t know what to do. I had never had anybody personally break that news to me about them. I just really had no way to know how I should go about it. So, typical me, I tried to make it a lighthearted thing. Telling people was hard for sure. But once I started to, I felt like it really just helped me know how many people were on my team. And it was even further reinforced. Okay, I can do this. Like, there is nothing that I can’t handle with this village backing me.
It makes people feel better, too, if they have some facts, some information they can kind of hold on to. I had people who I knew were going to start Googling, and they’d end up on WebMD. I’m like, “This is what I know. Don’t Google it because it sounds scarier on Google than what the doctors told me. If you have questions, ask me, and I’ll make sure we address any concerns. Don’t go on Google.”
Understanding stage 4 DLBCL: the candle analogy
Initially, when I told my husband, he was terrified. The word cancer — he was like, “You’re going to die. This is the end of everything. This is the worst news.” I was like, “Okay, wait, let’s get some more information. We don’t know anything yet.”
We met with the doctor. Initially, it was before the PET scan. He did blood work and an initial exam, and he was like, “You’re not symptomatic. Your blood work looks really good. I think it’s probably stage 1 or stage 2. We’ll get your PET scan next Friday, and then you’ll come back and meet with me again, and we’ll get a plan.” He told me that he would not call me unless it was bad news.
I was the only one who knew that if he called, it was going to be bad news. Nobody else knew that. I was by myself that day because I had a PET scan, so I couldn’t be around my children. My husband’s taking them out to keep them away from my radioactive self. I get a call while I’m in the shower. I miss it, of course. It’s my doctor. He leaves me a voicemail, and he’s like, “Hey, give me a call back. I want to talk to you about your PET scan results.” I was like, Oh, crap. I immediately called back, and it was after 5:00. I don’t get him. I’m like, Oh my gosh, I’m gonna have to wait till Monday to know. I was trying to talk myself into… maybe he just wanted to tell me, “Stage 1, like you’re good.” But I knew he had said, “If I call, it’s probably just because it’s a little bit more serious.”
On Monday, a scheduler called me first, and they were like, “We’re going to move your appointment from Tuesday to Thursday.” I was like, “Why?” She said, “Well, insurance hasn’t approved your treatment yet.” I was like, “My treatment? I’m just supposed to meet with the doctor.” She was like, “No, no, no, you’re starting infusions on Thursday.” I was like, “Wait, what? What are you talking about?” She was like, “I think Dr. Lopez is going to call you soon.”
He called me shortly after, and he was like, “Hey, I just want to let you know. The PET scan came back. It is stage 4.” And he was like, “But blood cancer is different from tumor cancer.” He immediately told me that information. For anyone that doesn’t know, when you hear stage 4 lung cancer, that’s very different from lymphoma stage 4. That just means that there are lymph nodes that have the active cancer in them on both sides of the diaphragm. That’s stage 3. Stage 4 is also in somewhere other than a lymph node. I had a spot on my mediastinum and also a spot in my breast, which were not lymph nodes, and then a spot behind my abdomen.
He told me that, and he said, “The treatment changes only slightly. There’s one different chemo that we use from 1 and 2 to 3 and 4. The prognosis is still really good, almost the same. It hardly changes.” I had that information right away. I was like, “Okay, so this is different.” I tell my family, and they’re all still like, “Stage 4…” And I’m like, “No, no, no, listen.”
I tried to give the analogy — I just made this analogy up — and then I told my doctor, and he was like, “That’s actually really good. I’m going to use that.” I told my husband, “Think about a candle on a table, and you pour a bucket of water on the candle. The candle is going to go out. Now you fill the whole table with candles, and you pour the same bucket onto the table with multiple candles. All those candles are still going to go out. That’s kind of how the treatment is working. The chemo is going to go to all of the cancer just as efficiently as it would to one spot, stage 1, stage 2.”
He was like, “Okay, it makes me feel a little bit better.” Being super informed right away did kind of make that feel better. But it still did feel like, Oof, it’s kind of a little bit scarier than what we thought it was going to be. It just kind of felt like things kept happening like that, where we were like, Okay, we think it might just be this. And then it was like, Actually, it’s this. But we are still positive. We’re still hopeful. Treatment’s still going to be really good. I’m thankful that my doctor has the personality that he does. I told him from the get-go, “I am a hypochondriac and medically anxious, so you’re gonna have to give me all the information. You’re going to have to give it to me straight. No beating around the bush. No softening things. I want to know everything.” He was like, “Okay, sounds good.” And he has done that throughout.
Coping with hair loss and finding confidence
If you had told me, probably a year ago, that I was going to lose all my hair, I probably would have absolutely lost it, freaked out, just because it’s all I’ve always had. The long blond hair. It’s kind of been like, if someone didn’t know me, they would say, “Oh, the girl over there with the long blond hair.” You see me in a supermarket, you know it’s me for sure.
The doctor told me the first time we met that chemo was the treatment for lymphoma, no matter what stage, and that I would lose my hair because of one of the chemos. That’s just what it does. The “Red Devil” — I can’t remember the proper name for it at the moment. “That’s one of your chemos, and you will for sure lose your hair.” I asked him about cold capping, and he said, “You can do it. It’s not super successful. It’s not super great for lymphoma, especially with the breast presentation.” I had a higher likelihood of central nervous system involvement. So there was a treatment that needed to go all the way through, the whole body. He said it extends treatment, and it’s really expensive, not covered by insurance. I was like, “Okay, that’s fine, no worries.”
I was prepping myself from the very beginning, but something that actually helped me be okay with the fact that I was going to lose my hair — a lot more so than I thought I would have been — I watched The Great British Baking Show. Have you ever watched that? This season, the winner had alopecia, and she was open about that throughout the show. So she’s bald as well, doesn’t wear wigs or anything. She talked about that early on in the season. She said she used to wear wigs, and she doesn’t anymore. She’s really found her own style, confidence, and beauty. She was a med student on this baking show. Really successful, really good. I was just like, Okay, she has found the confidence to do this, and she looks wonderful. She’s unique, and she’s rocking it. Watching her prepped me. I was like, “If Jasmine can do it, I can do it.”
I was still a little emotional when I cut my hair because it’s always been really long. It’s really short. I don’t think it’s been that short since I was a little kid, and it was growing from my head for the first time. Shaving it obviously was a little emotional. My husband was shaving it, and he was like, “I’ve never seen your scalp.” And I was like, “I’ve never seen my scalp.” I was born with more hair than this. So it definitely was shocking and emotional. Sometimes I still forget that I don’t have hair, and I’ll see myself, and I’m like, Whoa, that’s me. I’m bald.
People are really kind about it and tell me, “You have a smooth head, like that looks pretty good.” Sometimes little kids will look at me, and I can tell they’re like, What’s going on there? And I just smile at them. I know that they just don’t know any different. It doesn’t bother me. It is a reminder for sure that I don’t have hair anymore. Making jokes out of it as well helps. I don’t know if you saw that video, just me being silly. But it definitely has helped me process losing it. I have a wig too, which I can wear sometimes. That was gifted to me by a really good friend. I’m thankful to have been prepped and to have different ways to make me feel best in my body, how it is right now, and to feel confident if I need them.
Parenting through cancer: navigating my diagnosis with my kids
My two-and-a-half-year-old would always play with my hair when I would hold him. He does the same thing with his own hair. He’ll play with it as he falls asleep. It’s always how we know that he’s getting tired. But when I would hold him, he would play with my hair and just kind of pull it and take the really long piece. He loved to brush it. He thought that was the most fun thing ever. So we were really nervous that he was going to look at me like, Oh my gosh, who is that?
We let him watch. He was with my parents. Both my kids were there when my husband shaved it. And when I cut it too, I thought, Oh no, he’s not gonna like that. Big change. And I think his response was, “Oh, mommy, you look cute.” He’s just the sweetest thing ever. Everyone was there. He got to see it being cut. I think that helped him to be like, Okay, I see it actually falling off. Mom’s getting a haircut. It put things in place for him.
When we actually shaved it, he was with my parents, and I put a hat on after it was done. So when he saw me for the first time, it wasn’t just a stark difference. Then he kind of noticed. He was like, “Mommy, where’s your hair?” I said, “Oh, well, buddy, I’m taking some medicine. And it made it all fall out.” He was like, “What? Where is it?” And I said, “It’s in the trash.” And he was like, “Oh, is it going to come back?” I was like, “Someday. Yes.” He said, “Can I see?” I was like, “Okay, sure.” I took the hat off, and I said, “Do you want to touch my head?” He was like, “Yeah.” And he just kind of rubbed. I was like, “Isn’t that so silly?” He was like, “Yeah.” And then that was it.
He didn’t talk about it anymore until I got a wig. I came home with a wig on, and he goes, “Are you a different mommy?” I was like, “No, the same mommy, just different hair.” He was like, “Your hair came back.” I said, “No, buddy, it’s a wig.” I took it off and showed him, and he said, “Oh, so pretty.” Anytime I put the wig on and come out, “Oh, mommy, you look so cute.” He has handled it beautifully. Better than I could have ever imagined. We were really nervous about that. One of my friends is a child life specialist, and she was like, “I need to talk to him. If there’s anything you want me to explain to him or talk to him about, let me know.” I was like, “Yeah, we might need to do that, especially with this big physical change that he can see because he can’t tell otherwise that something’s going on with me.” But no, he handled that great.
My youngest… I think he looked at me kind of funny the first time. Then I smiled at him, and it was like, Okay, that’s it. We’re good. Same mom. My wig is a little darker than my natural hair, so I’m sure he was like, Oh, there you are. That’s what I think when I smile, they’re like, Those are my mom’s teeth. All right. Cool.
There is some sweetness to it because it is a good distraction all the time. Anytime I’m feeling down about what’s going on, I have a great reminder of happiness and joy and lightness. Kids keep things so upbeat, and they kind of keep you busy enough that a lot of times you’re not really thinking about it anyway. But there have been some moments where I have just compared my experience with my youngest this time to my experience with my oldest. I didn’t have anything taking me away from being a mom to a newborn or to an infant before. Now I’ve stayed away from them longer than I ever have before. I had to stop my breastfeeding experience because of chemo. I’ve had to do bottles, and that’s been really different.
My husband has been really great about taking things on. He said, “I hate that this is why we’re doing this. But I’m really thankful that I’ve gotten an attachment to our youngest, Shepherd, so much earlier than Harrison, our older son. He was so much more attached to you for so much longer.” I’ve kind of had a different experience with him, which has been really cool for me. And then my experience has given me some independence sooner than I would have had with my oldest. So there’s been some goodness to the hard as well.
I had to stop thinking, Oh, I’ll be so glad when treatment is over. I’ll be so glad when I’m on the other side of this. If I can just get to being cancer-free, then I can start enjoying life again. I was thinking about that. I was like, Okay, so that’ll be next May or June if we stay on track with everything. I have a one-year-old and a three-year-old. I will have wished away the whole first year of my youngest son’s life. So again, they are really keeping me in that mindset of I still need to enjoy every single day, despite the hard stuff.
There are days when I’m tired and anxious, and I need to just kind of step away and take a moment. Luckily, I have a support system to be able to do so. But most of the time it’s a reframe. It’s just this constant flipping in my mind of feeling the anxiety, feeling the sadness from it, but then remembering, Look what you have right in front of you. Don’t let these other things that are going on take over the good parts of life that are happening right now, too. My husband even said at one point, “I hate that this is happening, but why did it have to happen when we have small children?” I was thinking the same. Why couldn’t it have happened before we had kids? And then I was like, Well, you know, now that I say that though, they make every day so much better, no matter how I’m feeling. Maybe if this was going to happen — of course, again, thank God it’s happening at this time because I do have these constant little smiles at me all the time. You can’t be upset when these little faces are smiling back at you. It’s been different, but so good to be able to have this experience and to be able to treasure them even more. Once you hear those words, cancer, you’re looking at things so differently.
Finding silver linings in adversity
For sure, getting out of the house with both of them helps. Even when I am feeling really tired, leaving the house helps with that a lot. Having family so close is really helpful, even just to get in a different space with another person, with the kids. It’s like, Okay, I’m remembering that we can be normal while these things are happening, too. My husband can be home anytime I am not feeling well. That’s really helpful too, to be able to know that I have certain days where if I need extra rest, I can take it. But for the most part, it’s like, Okay, this is my sweet spot to be with them.
I think prepping for the holidays, whether it be Halloween, Thanksgiving, or Christmas, has really helped as well to have those moments. I want to make this really magical for them. I want to make things exciting and happy for them. Filming my experience and sharing that has been really helpful, too, to just kind of talk about it to make it less scary for other people. I know it can be really daunting. Before I had my first PET scan, I was like, Oh, that sounds terrifying. I’m going to be in one of those little tubes and being enclosed. Things just seem so much more daunting when you don’t know anything about them. So that’s been really helpful too, to have that outlet. I’ve had so many people say things back to me like encouragement and say that, “I was just diagnosed and watching your videos, I hope that I can stay positive as well. Thank you for sharing. You gave me the courage to go and get something checked out.” Even though I have little kids, just things like that… just little reminders that when I am feeling positive and happy and absorbing those moments, it really is making a difference.
I think I gave you the little phrase, “There’s nothing that I can’t handle.” I think that I have learned that over this amount of time because I think I downplay who I am and what I do a lot of the time. Oh, I’m just a mom. Oh, I don’t work. I just stay home. Or I just help my husband with his business. I think dealing with something like this and just thinking, Okay, this is what happened. I’m going to face it head-on and keep being positive. I didn’t realize that I was doing something kind of different here or that I was taking such a positive take on it. When I first heard about cancer and realized what kind it was and how treatable it was, I was like, Okay, there are so many people dealing with heavier things. Things could be so much worse. I think I try to always look at things like that anyway.
Even after my first chemo, I didn’t feel super bad afterward. I was tired, but I was thinking, Okay, that was pretty smooth. I can do this for sure. But then I had friends and family members being like, “You have cancer. Like, this is a big deal.” Not everyone will experience that. I remember my husband telling me that after I had a C-section, he was like, “You are a lot tougher than you give yourself credit for, mentally, physically.” I’m a small, petite woman. I’m not super muscular or strong or anything like that. I don’t think of myself as tough. But I have realized, especially in the past few months, that I am pretty tough and there is a lot that I can take and a lot that I can handle. If I can go through this, there’s absolutely nothing that I can’t handle past that, which is a good reminder.
Sometimes it’s the little things in life that get to you, and then a big thing happens and kind of gives you perspective on, Okay, why did I get so upset in traffic? Or why did I let that sleepless night with my kids make me have a bad day the next day? That’s nothing. I faced this, now everything else seems so small. I’m really grateful to have that perspective now. I’m more resilient than I thought. I hate for anybody to have that tested with adversity, but I feel like that’s the only way you really know how strong you are, is for your strength to be put to the test.
I’ve learned how much people care about me, which is a really unique thing to get to actually hear from people. Once I was diagnosed and started sharing my experience, people reached out. I had a teacher that I had in high school reach out and tell me, “You were always one of the most positive students that I’ve had.” It’s really cool to be able to hear what people think about you. It’s kind of reminded me to do the same for others. If you feel like you want to tell somebody something about what they mean to you, do it, because you never know how it will make them feel.
Looking to the future: one day at a time
That was hard for me, and I felt that was going to be the hardest part: to think about things a few months out or even to think about life after cancer. I feel like I’m always going to be thinking, Is it back? Is something else going on? But I’ve heard a lot of people who have also had cancer or dealt with a large adversity: take it a day at a time. And I think that is the best advice that you could receive. Take it a day at a time, and when you take it a day at a time, it allows you to be more present in that day because you’re not thinking about the future.
So that’s really just a day at a time — sometimes a week at a time, if I know what’s going to happen a week from now. But I try not to push too far forward because I feel like I can kind of get a little bit too in my head if I think about the hospital days that are coming up, or if I try to just digest everything that’s going to happen. But if I take it a day at a time, I mean, I can handle that for sure. One, just one little day at a time. No big deal.
Advice for patients and loved ones
For anyone going through something similar or anyone loving someone who is going through something similar, there are no dumb questions. Getting a second opinion is great. Lean on people who love you and whom you trust. And if you are someone loving someone else going through something like that, show up and be present and show people that you care, even if you feel awkward or if you don’t know what to say. You don’t have to say anything. Just being there is so special and helps people know that they can do anything and they can handle anything.
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
“I’m Still Affected 25 Years Later”: Maria’s Experience with Kidney Cancer as a Child and Colon Cancer as a Young Adult
Maria’s cancer experience began when she was just 15 months old, when she was diagnosed with Wilms tumor, also known as nephroblastoma, a pediatric kidney cancer. Growing up, she was in and out of hospitals in Ottawa, Canada, for countless appointments, treatments, including surgery and radiation, and a gastrostomy tube or G‑tube that stayed in place for 12 years. She says that as a young child, all she knew was that she was sick and assumed everyone else lived that way, too. She adds that she felt confused and in denial about the seriousness of her cancer.
Interviewed by: Ali Wolf Edited by: Chris Sanchez
As a teenager, Maria says she started experiencing bleeding in her stool and stomach issues, but when she told her pediatric oncologist about these symptoms, she wasn’t taken seriously. Eventually, a colonoscopy revealed early-stage colon cancer, which was removed with a small surgery. Even then, Maria’s instinct was to think, “It’s gone, so everything is good now.”
In her 20s, Maria faced new challenges, including bowel obstructions and recurrent polyps requiring colonoscopies every six to 12 months. For about half a year, clinicians suspected she had Bloom syndrome (BSyn), which can carry a significantly shortened life expectancy. Later results confirmed mosaic variegated aneuploidy syndrome 3 or MVA3, a rare genetic disorder where some cells have an abnormal number of chromosomes. MVA3 is associated with increased cancer risk, especially Wilms tumor.
That diagnosis transformed Maria’s outlook. During the months when she thought she had Bloom syndrome, she believed her life might be very short. She focused on Brazilian jiu-jitsu and spent time with her cats. After learning about MVA3, she was told she would likely live much longer. She began planning her career, and today Maria works as an educational assistant supporting students with disabilities. She continues to heal emotionally through therapy, peer cancer communities, and her own evolving understanding of her experience as a childhood cancer survivor.
Watch Maria’s video or read the edited interview transcript below to know more about her story.
Maria explains how her rare condition has affected her physical and mental health decades later
She highlights the importance of self‑advocacy in healthcare, especially as a young adult whose symptoms were dismissed or minimized
The importance of connecting with other young adult cancer communities and doing therapy to recognize that long‑term emotional and physical effects are common and valid
A universal truth in Maria’s experience is that patients often know their bodies best and deserve to be heard and believed when they describe symptoms
Her perspective shifts from denial to healing, helping Maria to envision a bright future that includes work, hobbies, and ongoing healing
Name: Maria F.
Age at Diagnosis:
15 months
Diagnosis:
Kidney Cancer (Wilms Tumor)
Mutation:
Mosaic Variegated Aneuploidy syndrome 3 (MVA3)
Symptom:
Back pain
Treatments:
Surgery: nephrectomy
Chemotherapy
Radiation
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I had Wilms tumor, which is a kidney cancer, when I was 15 months old. I live in Ottawa, Ontario, Canada.
I am 27 years old. I just turned 27 last week, and I’m a big enthusiast of martial arts, and I do Brazilian jiu-jitsu. I’ve been doing this sport for about eight years, I believe, and I did kickboxing in the past, and I compete once or twice a year. I’m really interested in that. That’s one of my biggest passions.
I love Brazilian jiu-jitsu because it makes me feel more empowered and able to do things in my own body. Even though what I’ve been dealing with as a child, I’m still able to use my body and to perform with my body. It’s very physical, but it’s also challenging to the mind, and it’s very close contact, so you make friends for life, and you’re in very close contact with them. You have to trust them, and through jiu-jitsu, I’ve been able to feel a bit more confident in myself. I’m still trying to increase that, and I’m also trying to increase more positivity in my life, and I have a lot of great people there that help me get through that and help support me.
I help support them as well in what they need in life.
New job and working as an educational assistant
I actually just had an interview yesterday for a job, and I got the job today. So I’m happy to see in the new year what that will lead to. Currently, I’m also a casual EA at the school, but starting in the new year, I think I will have a more stable position at the school.
Right now I’ve been helping a lot with people with disability or in wheelchairs. I did that in the past as well, but now I’m in the schools with that, so I help them with education as well. It’s an EA. Yes, it’s an educational assistant.
Living with disability and wanting to support others
I think because I’m also a person with disability, and I don’t think I really understood that when I was a kid, and understood all the possibilities of help that I could have had. I had my mom advocate for me for some help as well. But now I see the amount of help that you can ask for. Now it might be different because of the difference in generations.
I think just trying to support kids now, and also adults, when I used to work with adults, just to be able to fulfill their life and make their life easier in education, that’s why.
Childhood innocence and realizing life was different
I think I was very innocent as a child. I didn’t really think of anything at all. Later on, as I aged, I noticed that not all my friends were dealing with the same stuff. I thought everyone dealt with it. I thought having millions of appointments a year would be normal for people. I just knew I was sick when I was younger, and that’s all I knew.
When I tried to ask my parents when I was more curious and I turned a bit older, they would tell me, “Oh, well, your brothers are going to do the same thing when they get your age,” since my brothers are younger than me. For me, I thought, “Haha, they have to deal with this stuff when they’re older.” But it was definitely not the truth. I think they did that to protect me, and they weren’t sure what they wanted to tell me or how to tell me yet, because I was still a young child.
I also felt, because of the cancer stuff too, that I did feel like a normal child, but I knew that I didn’t really develop as much as the other children, learning‑wise. I realized that some kids knew a lot more than I did, and it was just, “Okay, well, I don’t know what I’m supposed to do. I don’t know why I’m in school, but I don’t know.”
I didn’t know that there was a life after. So after you graduate, you can start working, you can get married, you can have kids, and all that. I just went day by day, not really understanding a lot.
Family silence, denial, and wanting more information
I think it would have been nice to know a bit more. We’ve never really spoken truly about things. It was always if someone came by to visit, sometimes my mom would tell some stories to them, and that’s how I knew a bit more about myself or what happened when I was younger. But we never had an open discussion. It always felt like a closed door. So it would have been nice to have a bit more.
Also, knowing what’s happening, why things are happening like this. I think I was always left in the dark. That led me to denial when I was older, too. “Okay, well, everything is fine, it’s fine,” because when I was a kid, my parents didn’t cry or anything. They didn’t seem like they were upset. They just said, “Okay, it’s okay.” But I think that was just in front of me, and behind my back, they would probably say more than that.
Learning the word “cancer” and truly understanding it as an adult
I think that was more towards when I was a teenager. I think I knew the word when I was maybe an early teenager, but I didn’t really understand everything fully until maybe even adulthood.
I think that I really understood also because I was able to go to camp, and I was seeing other adults who were diagnosed as a kid and really able to talk to them and really understand a bit more. I think mentally as well, learning‑wise, it was easier for me to understand then, because I couldn’t really develop well even as a teenager. Maybe I thought I understood, but now that I’m older, I think it’s mostly when I was a young adult that I really understood, “Okay, this is happening, this happened, and now I’m continuing trying to survive this and understand and knowing that this happened when I was a kid, but now it’s still affecting me over 20, 25 years later.”
Denial, early colon cancer, and not being believed
I think I knew maybe when I was a teenager, I was more in denial because I was a little bit rebellious against the healthcare providers as well. Because of that, I had symptoms not of recurrence, but symptoms from colon cancer, and it turned out to be an early stage of colon cancer. But the doctor, my oncologist at the time in pediatrics, didn’t really believe my symptoms. Then, when I told her, “Okay, then I don’t have this symptom,” she would say, “Okay, well, you did tell me you had that.”
So it was very confusing, and I was very in denial, like, “Okay, maybe I’m just making things up.” But it was a pretty big symptom, and I knew that symptom. I had some bleeding in my stool for months, and I felt like, “Okay, maybe it’s not as important as I think it is.” When I was older, I got sick as well. I kept having some stomach issues, so I think from then on I knew, “Okay, I’m still affected by this. I’m still affected by the chemo, by the radiation, and by the surgeries from when I was younger.”
So it was an early stage of colon cancer, and that’s because I got sick later on. Eventually, I did get a colonoscopy. They finally figured out it was that, and they were able to remove it. But my oncologist at the time didn’t believe me or didn’t really help me at the time.
I’m not sure. She asked if I had any bleeding in my stool or anything like that, and I said yes. Then I said, “It’s a bit too much information,” but she asked if I was bleeding in my stool or just when I’m wiping or anything, and I said both. She said, “It can’t be both, so you have to pick one.”
Then I told her, “Okay, well, it’s none,” and then she said, “Well, you told me it’s both, so which one is it?” I don’t remember what it was at the end, but it was just a weird encounter. I haven’t seen her since then. I didn’t want to see her again. I was 17.
ER experiences, advocacy, and pain
I think I definitely felt disappointed, but I wasn’t shocked because there were a lot of times before that that doctors either ignored me or didn’t believe me. I really thought that was going to be the norm from then on.
So now every time I go to the ER, I make sure I’m in like a ten‑out‑of‑ten pain before I go, and I make sure I have my mom or a friend with me, because if I go alone, I get treated really poorly, and I’m in too much pain to advocate for myself.
My mom usually has the energy to push, and she’s been through it with me, so she knows how to push doctors.
Early colon cancer removal and initial denial
I think that was in 2018. I was probably around 18 or 19 during that time. It was either 2018 or 2019, but it was a very early stage, so they were able to remove it during the colonoscopy.
When the doctors told me about that, my instinct was, “Okay, it’s gone, so everything is good now.” I think I was still in denial, not understanding that now there’s a very big chance of recurrence and things like that. I find that I’m very lucky that that one was caught really early, and I just needed a small surgery to remove it.
G‑tube, long‑term pain, and waiting for help
Obviously, I can’t remember the very early years. I do remember being around four to ten years old. In those years, I knew I had a lot of appointments, and I was in school.
I also had a G‑tube, and I’m struggling with the pain from that till now. I’m supposed to go to the pain clinic, but I’ve been waiting for eight months now, and I’m still on the waiting list for that.
Feeling like a burden and hearing my mother’s pain
I think with my mom telling the story a few times, and she did have a few speeches at her school since she’s a teacher as well, just knowing that when she tells the story that she’s in pain, she’s still in pain, or she’s still tearing up — and that’s been over 25 years now — I feel a bit of a burden. I felt that a long time ago as well, and now I’m trying to heal from that.
I definitely do feel guilty putting her through all that, even though I know it’s not my fault. I know she’s been there a few times, at least. She’s always been on my side in the hospital. I’ve been in the hospital, I think, about a year at a time, and sometimes in and out, and I’ve been in the ER over 300 times at the children’s hospital.
She mentioned how it was difficult to go through treatments because I wasn’t eating, and that’s when they decided to put the G‑tube, the feeding tube. I had that for 12 years. A few times, I was in a Code Blue situation, so she mentioned how scary that was.
Since I was young, for radiation, I had to be put under. They don’t do radiation in the children’s hospital, so in Ottawa, we have the children’s hospital, and there’s a tunnel that goes to the General, which is for the adults. They had to run all the way there to do the anesthesia, get the radiation done, and run back before I woke up.
She mentioned that even from a young age, I had a very high tolerance to pain and a very high tolerance to medication. Sometimes I was in a Code Blue because they gave me too much morphine, even though I wasn’t falling asleep or acting the way the anesthesia was supposed to act.
Cancer camp, Young Adult Cancer programs, and therapy
Now it’s much better. Being able to go to the Ottawa Cancer Foundation and YACC (Young Adult Cancer Canada) and the cancer camps as a child and as an adult really helped. YACC as well, because there are some conferences, and they talk about things like that. It was nice to see that those are normal things that people who are surviving or have survived cancer feel too, that you’re not the only one.
It’s nice to see that in the community. It helped a lot. I started doing therapy as well to help with things like that and to heal from the past. I hope these videos help, too, for other people to know that they’re not alone and that there are a lot of things we don’t talk about or doctors don’t tell you about. Those other survivors really — it felt kind of like a relief, like, “Okay, okay,” and there are also strategies to try to understand and try to heal from it in Canada.
Finding connection with other survivors
I think just meeting those people, it felt so easy to meet them. There was just this type of bond that’s already connected, and this type of empathy. You don’t need to say anything, but you just understand each other. It was so nice to meet all these people.
For years, I thought I needed to get over this — these fears, everything like that — because it’s been so long since I had cancer and this shouldn’t be affecting me now. But knowing and seeing them, it really did really well for me.
Bowel obstruction, polyps, and finally getting coordinated follow‑up
When I was an adult, maybe in 2022, I had another obstruction in my bowel. A non‑surgical oncology doctor from gastro came in to see me and started to really follow up with me, really started the ball moving because I kept having a lot of polyps reappearing every year. I keep having colonoscopies every six months to a year and endoscopies as well.
She really pushed the ball to see genetics and to see another gastro as well, to keep following up, and just to see all these different doctors to really keep me in the loop. I hadn’t had a good follow‑up since I didn’t want to see that oncologist as a child, and that oncologist as a follow‑up in adulthood, too. I didn’t want to see her.
In the genetics department, they were able to assess me, and they were able to test for a genetic disorder for polyps in the colon, but it tested negative. They kept doing those tests. They really thought I had Bloom syndrome. So I did the bad thing of searching it up and noticing how little the life expectancy is, and because they were pretty much 99% sure I had that, they kept retesting me when it was negative.
Because there was a low life expectancy, for, I think, half a year, I was thinking, “Okay, I’m still in school, so I don’t really need to get a job because I’m not going to live that long.” I wanted to get more into jiu-jitsu, really get better at it because I like that, and to spend time with my cats and maybe travel if I can. That was really my goal. But then they noticed it was something else, and it was called mosaic variegated aneuploidy syndrome 3, and there’s just a high risk of cancer, and there’s no danger to life expectancy.
Then my perspective kind of changed, like, “Okay, so I actually need to get a job, and I need to figure out everything else, but also monitor my health,” because this year has been a bit more downhill. I’m going to live longer than I expected, which is nice to know, but I need to rethink, because I was trying to accept death at an early stage. I’m happily living now. I’m trying to do the best I can to do what I can.
My thoughts on genetic testing and Wilms tumor features
For me, it was a bit of a shock, because usually it’s kind of odd to have cancer below the age of two or even below the age of five. So I feel like they should have or would have tested me then. But at the same time, the genetic testing that I did at the end, because they realized it’s definitely not Bloom syndrome, is like a sister disorder to it, because they have very similar traits.
It was due to Wilms tumor and also short stature, learning disability or developmental disability, microcephaly, and trouble feeding, which are all things that I had as I was diagnosed with cancer. So all these things, it just seems like it would have been a normal thing to do to test. But the testing pool for MVA3 was still being developed, so there are still some false negatives. I was just really lucky.
Yeah, that’s what I’m thinking. It’s nice to know. Right now, I’m still having a lot of stomach issues, but I know what’s going on, and I’m still following up.
My experiences at different ages and PTSD from procedures
I think it was a mix when I was very young. I didn’t know anything, so I was just like, “Okay, okay.” My mom would play games with me when I was waiting for appointments. The floor was very colorful, so I had to jump from one color to another, and they were fun games. I did have this one scan that I was really terrified of, and I think even as an adult, I’m scared of it. I noticed with therapy that I might have a bit of PTSD from that and the sound of it.
I also had a favorite nurse. I could only get blood work with this nurse and no one else. Anyone else — it was no. I would throw a fit.
As a teenager, I think mentally everything was just… as a teenager, your mental state is a bit wonky. It was very difficult back then, because I think I was also rebellious. As an adult, I think I had one good encounter because the doctors I followed up with were really nice, but my ER visits were always very difficult.
Minimization of pain and struggles in the ER
I’ve never felt believed. I always felt like I was just a child being a spoiled brat and just whining because of menstrual pain. That’s what doctors would ask me all the time, like, “Are you on your period?” if I came in with stomach pain, which is all the time, I had obstructions. They would always say, “Do you have menstrual pains? Do you have your menstrual cycle right now?” It was hard because I’m not going to go to the ER just because of that.
Also, because I have a high tolerance to pain, it’s difficult to demand more pain meds, even for my mom to do that. In my last visit, I was very sleep deprived, and I was in a lot of pain, but they were not giving me the amount of painkillers I needed. I was a bit delusional too because of lack of sleep and pain. I told my mom, “Okay, we’re leaving because they’re not helping, they’re not doing anything.” Eventually, my mom was able to get someone from anesthesia, an anesthesiologist, to try to help me with the pain.
There’s always this type of situation. It was never very smooth. If it was, there was just one time it was good in the ER, but when I went to the floor, it was a disaster. Other times it’s the opposite way around. It was just difficult to go through the medical system in that case.
Early signs as a baby and port, surgery, chemo, and radiation
That’s what my mom would say. They would say that I kept rocking myself, throwing myself on my back, and the doctor said that was my way of trying to relieve the pain from the tumor.
I had my port installed first. My port was actually under my armpit instead of on my chest by accident. Then I’m not sure what happened first, either chemo or surgery. I believe it was surgery first, and then chemo, and then radiation.
No recurrence, just monitoring.
Self‑advocacy, mental health, and healing from childhood cancer
I think I’d like to say how important it is to try to advocate for yourself, because I always thought, “Okay, I’ll listen to the doctors,” but also, you know what’s best for you. You know your body the most.
In the mental health aspects, I’m seeing a therapist right now, but especially if you’re diagnosed at an early age, I would recommend, the earlier the better. I think I’m still trying to go through some of the trauma from my cancer journey when I was a kid, and also recognizing that it’s there, even though I thought I was just a kid and didn’t really notice until now.
I’ve learned from therapists that there’s someone else who was diagnosed at an early age, and they mentioned how they have some PTSD from sounds as well, but they were so young that they don’t really see or notice why. It lives through your body as the pain lives through your body. I think it’s very important, if you’re not going to therapy, to talk to someone you can relate to or do some exercise or something to help yourself.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Stage 4 Colon Cancer, Faith, and Family: Kristie’s Story of Redefining Life
Kristie went in for a routine screening colonoscopy she’d scheduled on her husband’s birthday, a date she now remembers for both celebration and shock. She went in for her first colonoscopy only after her OB-GYN insisted a second time, following a missed referral during the pandemic. Waking from anesthesia, she heard the words no one wants to hear: the doctor had found cancer in her sigmoid colon, later staged as stage 4 colon cancer when they found spots in her liver. Her surgeon spoke plainly about metastatic disease and palliative care, but also emphasized that treatments and outcomes are changing quickly and that her attitude and support system would matter.
Interviewed by: Keshia Rice Edited by: Chris Sanchez
Before her colorectal cancer diagnosis, Kristie was an active high school English teacher, department chair, Ph.D. student, and devoted member of her church and community. She was athletic, too; she ran 5Ks, hiked and went camping with her husband, and spent weekends traveling to watch one son pitch college baseball and the other teach and coach. Looking back, she realizes that chronic constipation and pencil-thin stools were possible warning signs of colon cancer, but she attributed them to lifelong constipation and perimenopause. Now she uses her platform to urge others to “pay attention to your poop” and to keep up with colonoscopy screening.
Kristie’s experience has included multiple rounds of chemotherapy, radiation, a colon resection with temporary ileostomy, liver ablations, and a planned liver resection. Chemo has brought cumulative side effects like diarrhea, neuropathy, cold sensitivity, severe skin reactions, and deep fatigue that she describes as akin to trying to walk against ocean waves. But she also talks about the infusion nurses who treat her with deep compassion, friends who drive her to chemo so her husband can keep working, and sons who quietly carry their own fear while trying to let her rest.
Over time, Kristie C. has shifted from seeing herself primarily as a full-time teacher to embracing a new identity as a writer and researcher who lives with chronic illness. Her faith, family, and love of nature shape how she uses whatever time she has: investing in relationships, advocating for public education and more just health care, and speaking honestly so others feel less alone.
Watch Kristie’s video or read her interview transcript below to know more about her story:
Kristie’s first colonoscopy at age 51 led to an unexpected stage 4 colorectal cancer diagnosis on her husband’s birthday, reshaping how she thinks about time, work, and legacy
Her experience with multiple treatment regimens has been physically and emotionally intense, but she emphasizes that, “There is beauty to be found… There is hope, and there are lessons to be learned.”
Kristie shifted from being a constantly producing teacher to a writer and researcher, focusing on presence, purpose, and connection
Her story highlights how serious illness is as mental as it is physical; it demands feeling hard emotions without staying stuck in despair, and choosing where to place hope each day
Kristie’s marriage, faith, and friendships have deepened as she and her husband both live with cancer diagnoses, learning to let others help, protect space for caregivers, and hold on to joy alongside uncertainty
Name: Kristie C.
Diagnosis:
Colon Cancer
Age at Diagnosis:
51
Staging:
Stage 4
Symptoms:
pencil-thin stools
constipation (had always been chronic and she attributed to perimenopause)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I am from South Carolina, and I was diagnosed with stage 4 colorectal cancer. My cancer is technically colon cancer, but it is in the sigmoid part of my colon, which is so low that they go back and forth as to how they treat it, whether it is just straight colon or rectal, but it is technically colon cancer.
I was diagnosed with colon cancer on my husband’s birthday
I was diagnosed on July 12th, 2023, and I remember the date because it was my husband’s 58th birthday.
I had recently visited my OB-GYN. I saw her at 50. She told me I needed to have a colonoscopy, and I said, “Yeah, it is time.” I had watched my husband go through one at 50 and did not think anything about it, but it was not long after we had just started going back, opening up after COVID, and so I did not get a call from them. So when I went back at 51, she said, “Did you not get a colonoscopy?” And I said, “No, they never called me.” And she said, “No, no, we are going to take care of this right away,” and she had her nurse call an office in town, and they got me in within a couple of weeks.
When the nurse called, she said, “We have an opening on July 12th,” and I was hesitant. My husband happened to be there, and I said, “It’s your birthday.” And he was like, “No, no, no. Go get it done. Get it done in the morning, and then we will go do something fun for the rest of the day for my birthday.” And I said okay but it was my very first colonoscopy ever.
I woke up from the medicine, and the doctor said, “We found cancer.” That was the first thing he said. I was really silly about it. I was like, “How much is this going to disrupt my life?” And he said, “Oh, this is definitely going to disrupt your life.” He said, “I have already tattooed it and biopsied it, or I have taken some to be sent for a biopsy. I referred you to a surgeon. You should get a call from them within a couple of days.” So it was obviously big enough for him to tell that it was going to be a problem.
My life before my colon cancer diagnosis
I was one of those people. Some people would call me an overachiever. I was definitely one of those people who felt like a moment could not be wasted in a day. I was busy all the time. I taught secondary English. Most of the time, 11th graders. I would have a couple of 10th graders, and I would have a couple of seniors, but the majority were 11th grade. I was the department chair.
I was working on my PhD, which I did finish. So I was teaching during the day. I was writing a couple hours at least once a week, sometimes twice a week for my classes, conducting action research, very much active in church and community, and with friends, and so there was hardly ever a day when I just came home. I have two grown sons. They are now 27 and 22. When I was diagnosed — well, my younger one is still in college. He is working on a graduate degree, but my younger son was playing college baseball. My older son teaches. He teaches high school as well, high school social studies, and coaches football and baseball. So we were traveling to see my younger son play, and we were going to see my older son’s teams play. We were just very active. I did not slow down at all.
Teaching, faith, and identity as an educator
It is an immense factor in my identity. I would say, first and foremost, my identity is as a follower of Jesus, but then second, I am a wife and mom, third, an English teacher, and every one of those other identities has been shaped by my role as a teacher, my husband as a teacher, my older son as a teacher. We are a family of educators.
I have advocated at the state and national level for public education, for the National Writing Project, and for National Board Certified Teachers. I am a National Board Certified Teacher. I do not know how to look at the world outside of being a teacher. In fact, I was talking about children and my need to protect children. I said, I am a Christian, a mom, and a teacher. My entire existence is focused on protecting and educating children. The high school where I teach — or I did teach — was the high school my husband graduated from and both of my sons graduated from, and my husband taught in the same school district. I used to tell people it would be really hard to find somebody more invested in our local school system than me. Both of my sons played sports there. My husband did too. He coached. Our worlds center on school activity.
Subtle colon cancer symptoms and “Pay attention to your poop”
I tell everybody there were no signs, none that I would have been aware of recognizing. I did battle constipation. However, I have battled constipation most of my life. It was nothing new, and I was reaching the age of perimenopause, and I knew that that was also a time when digestive issues go along with perimenopause, and so I thought constipation was just part of my life. I had no idea that it could have been indicating colon cancer.
Later on, I found out that smaller, they call it pencil-sized stools, are an indication of colon cancer, I guess because the tumor takes up part of your colon and makes the stool smaller. When I look back, I can say, ‘well, yeah, I did notice some of that,’ but I was not aware that that was an indication of colon cancer. So when I was first diagnosed, I was just absolutely blindsided because I had no idea how to look for it. I had no hereditary expectations of it. Nobody in my family had ever been diagnosed with colon cancer. I was clueless. Maybe, had I been aware a little more of the idea of a pencil-sized stool, I might have been alerted. But I also was so busy and, as I said, had hit a point in my life of perimenopause, I probably would have attributed it to something else.
I have also tried to make it one of my goals when March comes around, and Colon Cancer Awareness Month, I try to make sure people know to get their colonoscopies. But I have adopted this hashtag on my Instagram. Whenever I talk about my colon cancer, I do hashtag “pay attention to your poop,” because I did not know that there was even the idea that there was a pencil-sized stool. So I really want to make people aware of this. It is gross, and people do not like to talk about it, but we need to pay attention to our poop.
Sharing a cancer diagnosis on my husband’s birthday, and his own cancer experiences
I have tried to make a conscious effort not to bring it up on social media on his birthday. I want it to still be his birthday, you know, but we are aware of it, and we make jokes about it between the two of us. I am very open on social media about my battle with cancer, but on his birthday, it is all about him. I try to make sure that he gets the spotlight and not, oh, yeah, this is my diagnosis anniversary. It is there. It is real. I am not ashamed of it or anything, but I do not want to take away from him.
He is also a prostate cancer survivor. He was diagnosed with prostate cancer in the spring, right before I was diagnosed. He had had his prostate removed the month before I was diagnosed, and in his prostate cancer journey, you know, the different MRIs and PET scans and things that we do, they found a meningioma in his brain, and so he had to have that removed. That was benign, though, but he had that removed the week before Thanksgiving, as I was in the middle of my first few rounds of chemo. So we have had our encounters with cancer.
Marriage, caregiving, and being in the “C-Word Club” together
It is absolutely huge. I tell everybody there is no way I do not think I would have done as well as I have done had he not been supportive. When major events like this happen, it does one of two things to a couple: it either brings them closer or it separates them. While he was with me in childbirth and stuff, prostate cancer meant that he came home from his prostate surgery with a catheter, and all the gross things that happened with colon cancer — when I had my colon resection, I had a temporary ileostomy.
He has seen me in a lot of really yucky situations, where my poop was hanging out of my stomach in a bag, and now, after the colon resection, I battle what is called LARS, low anterior resection syndrome, which means that I do not have a lot of wait time to go to the bathroom. He has been nothing but supportive and has seen me in lots of really gross situations, and I am so grateful that it has brought us closer, that it has made us a stronger team, and it has really made us understand that we do not want to go through life without each other.
We have seen each other in new lights and in some gross situations, but at the same time, it has really put the focus on our friendship, our partnership, our companionship, and our dependence on each other. I always thought I was quite the independent person, and cancer will not let you be too independent, especially when you are recovering from surgeries and have things like ileostomies. So it has made me appreciate him as someone I can depend on.
Hearing “stage 4 metastatic” for the first time
I want to tell you that when I met with the surgeon the first time — and he was wonderful to me — but the first time I met him and sat in his office, he was the one who had to deliver the news that I had already seen, which was stage 4. I had already seen the CT scan results because we get those online on MyChart, and I can read them, which I am very grateful for. The CT report showed everything was clear except for my liver; there were spots in my liver. So I knew that it was in my liver.
But when I sat in the office with him across from me, with my husband beside me, and he said, “It is stage 4 metastatic cancer. We do not talk about cures in stage 4. We will talk about palliative care,” he unloaded on me first and foremost, from the very beginning, before he said anything else, the worst case scenario. I did not understand that that was what he was doing at first.
My association with palliative care was when my father-in-law died when he was placed in a palliative section of the hospital, and they just gave him pain medicines as he died. So that was my first image of what he meant by palliative care. I started crying, and he said, “I know this is upsetting. I would be worried about you if you were not upset about this.”
Then he gave me the worst case scenario first, but then he sort of framed it for me —“Now that I have given you the worst case scenario, let me walk you back.” He said, “First of all, be very careful of what you read on the internet. A study that was current even just five years ago is out of date now. There are so many new treatments being created every single year. So the numbers from five years ago do not hold anymore. Secondly, even if we are not able to cure it, there are lots of treatments. It does not mean that you will die within two years. That may be what the numbers say right now, but we have lots of options.”
He said, “You clearly have a good support system,” with my husband being there. “What happens from here on out depends on your attitude and the approach you take. There are lots of supports available to you. If you keep a positive outlook, if you do what you are told in terms of taking care of yourself, still trying to eat and exercise, it does not have to be an immediate death sentence.” But he scared me pretty good to begin with.
Immediately, I thought about things like, I do not want to die in my 50s. My mother, who had some chronic illnesses — never cancer, but some chronic illnesses — died in her 60s, and I thought, “I am not even going to make it as long as my mom did.” Then my next thought was, “I am not going to get to be a grandma. I am not going to know what that feels like,” because I want to enjoy being a grandma. I immediately started thinking about all the things I was not going to get to do, and that upset me tremendously. I did a lot of crying. I did a lot of questioning, like, why? How did this happen?
I was so concerned about my health before I found out I had cancer. I am going to grab a Kleenex because my nose is running, and that is part of chemo stuff. Literally less than two months — it was probably closer to a month — before I was diagnosed, at the end of May, six weeks before I was diagnosed, I ran a 5K. I ran 5Ks probably three or four times a year, competitively. I would run for practice at least a mile, two, or three times a week, probably a 5K at least once a week. I used to be an active member of a cardio kickboxing group. It closed as a result of COVID, but I did yoga twice a week. I was in great shape. I was really particular about what I ate. My husband and I hiked all the time. That was our favorite thing.
We would hike and tent camp. Literally, the summer before, within a couple of weeks before I was diagnosed, when we would go see my younger son play in summer ball in North Carolina, we would tent camp. We would find a national forest or a campground close to the ball field, and we would bring our tent, and we would tent camp and then get up and hike, go get something good to eat, and then go see my son play ball. That was how we intended to spend all summer long. So I was wrestling with this: you have done so much to take care of your health, and it did not stop colon cancer.
Then I went on a thing of, well, where is this coming from? It is not hereditary — some people’s are, but mine was not. When they did the tests, they determined that it was not hereditary. It was environmental. So I went through this whole thing about processed foods. My area of research is adolescent literacy in the outdoor classroom, so I am quite the advocate for environmental concern and protection. I went through this thing like, these are environmental conditions that we have brought in, and so then I get angry. I went through a whole lot of trying to find what gave me this, despite trying to take care of myself, and I struggled a lot with questions of why and how this happened to me.
Telling our adult sons about stage 4 colon cancer
My husband and I, we have — I do not know if you call it a policy — we have just agreed that no matter what happens, whatever news we get medically, we do not do anything until we talk in person to Jordan and Joel, our sons. They hear first directly from us. My younger son happened to be playing ball in Virginia when I got this news. My older son, I came home and had him come to the house, and I told him, sitting on the couch.
My older son is the one who stuffs his emotions. So he listened really quietly and just said, “Yeah, okay,” and did not let me know how he was feeling at all. When we told my younger son, when we went to see him play ball in Virginia, the first night, we were like, we are not going to tell him before he throws. He is a pitcher, because I did not want this on his mind to affect his performance when he was on the mound. He came in — he is a relief pitcher, a left-handed relief pitcher — he came in for just two innings. After the game, we were cheering him on, had a really good two innings, and he said, “Coach said because I did not do but two innings, I am probably going to be in the bullpen again tomorrow night.” So we went, well, we cannot tell him now. He played an away game the next night.
So we went to see the away game, and it started raining. He had a really rough outing that time, but we had to tell him because we were going back home and, like I said, I was not going to tell anybody else — I was not even going to tell my dad — until I had told him. So we had to tell him after the game, before he got on the bus to go back, and it was awful. I hated telling them because I wished we had had more time to talk it through, but I said, “Joel, I have to tell you what the test results said.” We tried to reassure him. It was like, “It is okay. I am probably going to start chemo. We want you to stay and keep playing. There is no reason for you to have to come home because your dad will take me to treatments.” It was in the summer, so we were out of school. I was like, “You keep doing you. We want you to focus on your future,” which I realize now that was really how we felt, but that was impossible for him.
The summer leagues only go through the end of July anyway, so we only had a couple of weeks left, and when he came home before he went back to school, he was like, “Mom, you know I could not think of anything else. It was on my mind,” and I was like, “I know, but there was nothing you could do.”
Later on, when the chemo got really rough, and they were planning for the colon resection surgery, he would talk to my husband on the phone without me, and my husband would tell me later. He would say things like, “Do I need to come home?” My husband said that he would tell him, “I will let you know when it is time to come home. If I thought she was in that bad of shape, I would have told you to transfer to a school down here. But she would be so upset if you gave up baseball to come back home.” So what we ended up doing was, when he played his college games, my husband would — we had a Jeep Wrangler and a Subaru Outback — whichever vehicle we took, he would clear out the back and lay blankets and pillows down, and I would lay in the back until our son came in to pitch, and he would text me, “He is in the pen.” Then I would get out, go sit in the stadium, watch him throw, and then I would go back to the car. We made it work.
I am going to tell you one other quick story. After my colon resection — that was on January 29th, 2024 — they ran more tests. They do CT scans and things like that to see if the surgery worked. When I went back to my oncologist, he told me, he said, “You look clear now.” He said, “Come here,” and he pulled me up to the screen. I have to say this about all of my oncologists and surgeons: they have been wonderful about this. Whenever they pull up the records on the screen, they would have me come sit beside them, and they would show me exactly what they saw. He said, “I want you to look,” and he had changed my diagnosis from palliative to curative.
Now we are back at palliative because it has recurred in my liver — that is another story — but when he told me that, when he showed me that he moved it to curative, my friend Vicky, who takes me to several treatments — I have been so blessed with friends who have taken me to treatment: Vicky, Evelyn, and Sherry. They have taken me to my chemo treatments so my husband can continue to work during the chemo treatments. That way, he saves up his days so that he can be there with me in surgeries. His current employers have been wonderful about letting him get comp time so that he can be with me during the surgeries, but for regular everyday chemo, my friends would take me.
So my friend Vicky was there. My husband met us there. After that meeting, I came out and told them first. We got in the car, and I called Joel first in West Virginia and told him that they had moved it to curative, and I could hear him crying, and I am going to cry thinking about it. Then we got home, and I waited for my older son to come in from work and got him in the living room, and told him that it had been moved to curative. He said, “Good,” and he went to the bathroom, and I heard him break down. As I said, he is the one who stuffs his feelings.
That day, it was clear to me how much effect it had had on them when it was like they could finally relax. They handled it pretty well in front of me, but when I was able to give them the good news, that was when it really became clear to me the effect it had had on them. Honestly, my older son moved home. At first, he moved home to stay. He never said outright that it was because I was in chemo, but for the first year of my chemo and surgeries, he lived at home. That next summer, after I had had the surgery and it looked much better, he moved back out. As I said, he will not say it out loud, and the other one says it to my husband, not to me. I think they do not want to upset me either.
What chemotherapy and radiation really felt like
I despise chemo. I am on a chemo break right now because I am scheduled for a liver resection on December 23rd. Today, the day that I am recording this, would have been my next chemo treatment, and I am so grateful that I am not in that infusion center. Let me say, my infusion nurses have been nothing but good to me. They are so compassionate and caring.
I only had five days of radiation. They did radiation right before my colon resection because they said that would improve my chances of not having a recurrence, but because I had radiation, that is what required me to have the ileostomy. They said it did so much damage that they did not want me to try to pass stool through that damaged area. That is why they had to do the temporary ileostomy, and I am very fortunate and grateful that my ileostomy was able to be reversed.
As far as chemotherapy, I have been through three series now. The first one: seven treatments, seven treatments of this drug combo, and I had an eighth treatment before my colon resection without one of the drugs because they needed to stop that earlier than regular chemo before I had the surgery. What the pump means is — this series, I would go on a Tuesday and get probably five hours’ worth of infusion in my port, and then they connect me to a pump. Then I wear the pump home for two days, for 48 hours, and then I go back on a Thursday, and they disconnect the pump.
In my experience, chemo side effects are cumulative. The first couple of times that I had chemo treatment, it was not horrible. I got a little sick to my stomach. I did have diarrhea. One of the side effects of every chemo version I have had has been diarrhea. I have to run to the bathroom, but at that point, to begin with, it was before I had my colon resection, so it was manageable. In the first two series, I had to go to the hospital a couple of different times. They discovered through all the scans that I have diverticulosis, and the first time I had that one chemo drug, it irritated that, and it turned into diverticulitis, which caused fever. One of the things they tell chemo patients is that the minute you get to 100.4, you have to go to the emergency room immediately. That is where we discovered the diverticulitis, which was painful and caused a fever. A couple of times, I have gotten dehydrated, especially with the ileostomy.
The side effects are rough, no lie. I did not have much neuropathy at first. The worst of the first set was diarrhea and nausea, and dehydration. While I had the ileostomy, I went through my second series. They called it adjuvant chemo. They were hoping just to prevent recurrence, and it has worked for the colon — praise God, I have not had any recurrence in the colon. It did not prevent recurrence in my liver. For the adjuvant chemo, they moved me to another chemo drug. That has some really yucky side effects.
I now have neuropathy. My feet, especially — I have some in my fingertips but mostly in my feet — which is numbing and painful at times. I have really sensitive feet. This new chemo drug also causes cold sensitivity. You cannot drink cold drinks. It literally sends electric shock waves in your mouth when you go to drink something. I will never forget the first time I felt it in my fingertips. I thought I was putting sour cream on a baked potato or something, and we had the squeezable sour cream. I picked it up and dropped it and screamed; it was like electric shock waves through my fingertips. It is just massive cold sensitivity.
Of course, I have lost some of my hair. I have not lost all of it, thank goodness, and I am very appreciative of that. I can try to rock a pixie cut. With the new chemo drug, the cold sensitivity got so bad that we tried to do oral chemo. I forgot what it was called, but I tried the pill because I had read on several support groups online that people did not experience the side effects with the oral chemo as they did with the infusion chemo.
So I tried that. Well, then I had what they call hand-foot syndrome, and I got to the point, after a few weeks of oral chemo, where I could barely walk. I would go see my son play baseball. I would stay in the car, and then my husband would drive me to the front and help me walk to the seat. My feet were in such pain and so tender, and they were peeling, the skin was peeling, that it was just horrible. It was just painful, and the skin on my hands was peeling. So then the doctor said, “Okay, we need to stop this for a while,” and so we went on watch and wait until it showed back up in my liver.
I have had two liver ablations, where they have gone in and done lasers to try to cut those out. After the second one, when it showed up again, my new oncologist — my prior oncologist moved away — said, “We are going to have to go back on chemo.” This time, I was on the first combo I tried again, but instead of one drug, they did another. Again, the worst parts of that have been the diarrhea, but the new drug caused what they call “chemo rash.” That has been on my face and neck, but they cheer when you get the chemo rash because that is an indication that the chemo is working, and it has.
I tell everybody, and it is such a cliché, but chemo is a literal and a metaphorical toxic relationship. It is literally putting toxins in your body to kill the cancer, but you have to be grateful for the toxicity because it is killing the cancer. It is the definition of a toxic relationship. I watch my face break out and flake; then it dries out. If my face looks shiny right now, it is because I am constantly putting Aquaphor or baby oil on it to counter the dryness that comes from the new drug. Here is the funny part about it: my hair is coming out because of the regimen, but the new drug is turning my face into werewolf world because my eyebrows are not normally black (they are normally brown), and my cosmetologist said I look like Bert and Ernie. She trims up the eyebrows, but the eyelashes, boy, they are on point. They are just thick. I am getting little hairs all over my face like I never had before in my life.
It is just such an emotional roller coaster: you are throwing up one minute, you are pooping another, your hair is falling out, but it is growing on your face, and there is the fatigue. That is the word they use, but I say it is more like weakness. I told somebody it feels like what it feels like when you are in the ocean, and you are trying to walk against the waves, and you are having to push so much harder on your legs. That is what chemo fatigue feels like. My friends have learned. I am like, this is chemo week. I am in the house this weekend. Then, on my off week, I start feeling stronger, and I can go do things again.
It is a whirlwind, a storm of symptoms and emotions and ups and downs mentally and physically. People told me over and over again, all my nurses and doctors said, the cancer battle is as much mental as it is physical. It is. You have to learn to accept when you cannot do things and then take advantage of the moments you can, and you must learn to deal with the uncertainty. Anyway, I would not wish chemo on anybody except for the fact that it kills the cancer. Now, because of the chemo, I can have a liver resection, but I never thought I would say, “Please cut on me.” I would rather you cut on me than go through another chemo treatment.
My original diagnosis vs. recurrence and living with chronic cancer
I think the original diagnosis was worse, and I will tell you why, but my reaction to the relapse is a different one. The original diagnosis threw such a curve in my life. My husband would probably say a U-turn. It was so unexpected. It derailed my expectations for my life in such a way. I honestly thought I was going to be back at work after a semester.
I remember the first time insurance people started telling me to apply for disability. I thought, “They think I am going to die.” I planned to go get chemo, get surgery, and be back. I struggled for months with that initial diagnosis before I came to be at peace with the idea that I may never go back to work full-time, that I am going to have to fulfill my destiny differently, and it is not going to be full-time teaching anymore. So I wrapped my mind around, well, you have always wanted to write. Here is your chance to write. You can write from the bed. So that is what I have tried to embrace. I have tried to embrace a new academic purpose in my life.
The relapse has a different reckoning. When I went back on chemo this third time and we started the Signatera test, those are the blood tests that indicate whether, even if the scans show clear, there is still cancer in your blood somewhere, that it is still there, that there are cells they just cannot see yet — my Signatera, ever since the first one I have had, has been positive. That means I am not rid of the cancer, regardless of what the scans show. Then I saw the numbers increase. So I had to reckon with, “Okay, what am I going to do with this time that I have, and how am I going to negotiate having a chronic illness?”
It goes from thinking you are going to be cured to dealing with chronic illness and dealing with how you navigate life that way. Then I had to confront the idea: Am I okay with chemo for the rest of my life? Because that is where it was leaning. Probably less than two months ago, my oncologist said I would most likely be on chemo for the rest of my life. I might qualify for a liver transplant, which was a whole other scary option, because that is a huge major surgery. That is when I started thinking about second opinions.
I have been blessed with wonderful insurance, and that is truly a blessing. My insurance has a medical nurse and a mental health nurse who call me once a month, and I have fully taken advantage of that service. They have been so helpful and supportive in helping me talk through my thoughts on what is happening. My medical nurse asked me if I had thought about a second opinion, and I said I had not before now, but I am now. I need to see if there are other options out there. She said, “If they are in network, we cover it,” and I was like, “This is wonderful news.”
So I started doing some research and reached out to MD Anderson in Houston, and I was amazed at how quickly they responded. They were like, “Yes, come here, let us see what we can do.” When I met with my oncologist there, she said that I had received excellent care, which I knew I had. I have received nothing but top-notch care, excellent doctors. She said, “I am not sure that there will be other options,” and she was honest with me at the beginning, too. “But let us do some really high-powered tests and see what we can find.”
When I got the first results from those high-powered tests, they showed some things in my abdomen and lungs. My immediate reaction was, “It has spread even further,” and I really had a breakdown moment then. I went through that again: “I do not want to die in my 50s,” and I thought, if it has spread, it is going to go quickly. Then, when I talked to my oncologist again, she relieved me of those fears. She said, “No, that is not cancer there,” and when I met with my surgeon, he said the same thing. “The spots in your lungs are most likely scars.” I have had COVID three times. They could be scars from COVID or from some type of lung infection as a child or something. She said their machines were just so powerful that they were going to pick up any abnormality, but those are not cancer. I was so relieved.
I had a moment of confronting that my death may be far more imminent than I had pretended before. I faced a moment then, and my husband was so positive. He was like, “You do not know that yet. Do not buy trouble before you know.” I did, though. I honestly thought at that point that I needed to give specifics of the funeral I wanted. Honestly, before I had my colon resection, my husband and I did go visit an attorney and have all the paperwork drawn up for wills and living wills, and powers of attorney, and those kinds of things, because it made it real. I had to confront the reality of what may happen, and that is not pleasant at all.
The good news is that when my oncologist called me, she said she had presented the scans to the tumor board, and an amazing surgeon has agreed to do a liver resection. They actually think that I may not have to have chemo afterwards. So I am holding on. I am holding on to faith that that is what is going to happen. As I said, my liver resection is on December 23rd. But now, because I have been through these ups and downs, it is never out of my mind that this is what we are going to try now. I am not banking ever on it being over. I am praying hard that I will not have to do chemo again, and my oncologist is certain that we have lots of options later on if it recurs again.
The idea of recurrence is always there now. I will die, whenever that is — when I die, I will die expecting a recurrence. It is part of my life now.
Living with stage 4: hope, faith, and not choosing despair
I have to hold on to my faith. I have to believe that God will turn this into something good. He already has, and He will continue to turn what is yucky in human terms into something beautiful. I have seen it happen. I have seen it happen multiple times. It does not change the reality that death is close, but the fact that death is close has made me reckon with how I want to spend the time that I have.
I had a friend ask me, “How can you be so hopeful? How are you holding on to your faith?” I am like, “What is my alternative? If my alternative is despair, do I want to spend the time I have left in despair? No.” I do not want to spend a moment in despair. It has really made clear to me that, if before my diagnosis I was conscious of making every moment count, it was in a different way of making every moment count. I was very driven by this idea that I had to produce. I had to produce professionally. I had to produce in terms of service. I had to be working toward something good.
It is the same now, but it is a different good. It is not necessarily a production that is valued in the professional world. It is: how am I going to make every moment count for when I am gone, that I will have left a positive legacy, that I will have invested in the people that I love, that I will have invested in what I want to say to the world in terms of my writing, and what I want to leave for others?
It has made me hyper-aware of my privilege. I can stay at home and focus on my health and doing what I want to for the rest of my life because I was a public school teacher who built up retirement funds and has really good insurance. It has made me hyper-aware of that, and so I am driven to shout about the injustices that exist in our health care system, that people who do not have the insurance that I have are trying to work and have chemo. Some people lose their homes because they cannot afford treatments and have to choose between medicine and essential elements of life. As I said, this has made me hyper-aware of my privilege, so I feel like God is telling me, “You need to use this time to advocate for others. You need to use this time to raise awareness and to show others that there can be hope in a desperate situation.”
It all comes down to, I have to choose how I am going to spend whatever time I am given, and I do not want to spend it in despair. So where do I find my hope? I find my hope in God. I find my hope in the love of my family. I find my hope in spending time in the beauty that is nature, finding healing in nature, and sharing literature, because that is why I became an English teacher: to share stories. That is why I was interested in this. Our lives are composed of stories, and I want my story to be a good one, one of hope.
It has made me far more dependent. I mean, I did daily devotions before I was diagnosed, but my conversations with God are so much more real now, and I thought I understood what depending on God was when it came to my children growing up, when I could not protect them anymore. It has just intensified now. I have seen marriages break up. I have seen people get angry at God, but for me, if God and my family are what matter most, I want to use this time to draw closer to them, and they are what bring me happiness.
Redefining my identity after cancer as a writer, researcher, and outdoor person with chronic illness
Part of me takes pride now in calling myself a writer/researcher. That is what I call myself now, not necessarily a teacher. I am teaching one class adjunct at a local college, and I love that, but my body is not going to allow me to be a full-time teacher anymore. So I am trying to embrace it, and I take some pride in saying that I am a writer and researcher.
But gosh, my friends in my PhD program are headed to Las Vegas this week to the Literacy Research Association conference, and I am not going with them. That still sticks in my craw. That is not completely out of the picture in the future, but sometimes I get a little anxious, thinking that I am losing ground professionally. And then I have to readjust. I have to readjust.
Last spring, May of 2025, the school where I taught had a large AVID program. AVID is a particular program to help students get college-ready, and every year I taught a group of AVID students English 101 and 102. These are early college students who graduate with an associate’s degree with their high school diploma. The AVID director would invite me to a graduation celebration of those AVID students.
This past May, I was invited, and that was my last group. That was my last group of students to graduate from the school where I taught. The kids that are at the high school where I taught now, the kids that are there now, I do not know them. I did not teach any of them, and that hurts my feelings when I think about it. Then I have to readjust my thoughts: you are not teaching that group of students anymore. You are reaching a different group of students now, and you are reaching a different audience. You have a different purpose now.
My husband has said that I might not have pursued this part of my career had cancer not happened. I would have held on to those high school students so long. He was like, “This is giving you a chance to see what else you can do,” and that is what I have to think of it as.
My identity as an outdoors person — sometimes I wonder if others will view me as a fraud because, as I said, my research is adolescent literacy in the outdoor classroom, and I can still do small lessons outdoors. But the person who used to hike 7 to 10 miles and then come back to a tent, I cannot do that anymore because I have to be close to a bathroom. I can do short walks, and I try to as often as I can, but I really miss that part of my identity. I always have to be conscious of where the bathroom is and whether I have taken Lomotil so that I can go out in the woods.
That part of my identity, I am struggling with losing that part, and I have to reshape it. I cannot run right now, one, because of chemo, and two, because of neuropathy. So I am like, well, when I can start training again, when I have the energy to start training again, maybe I can start doing race walking instead of running. Then I see, well, this is okay. You can be an example, a spokesperson for what it means to be outdoors with a chronic illness. As I said, it is constantly readjusting my thinking.
My message to newly diagnosed cancer patients and caregivers
First message is for caretakers: caretakers have to be taken care of, too. I have seen my husband. We have recently had to help his mother move into assisted living as she is getting older, so he is taking care of an elderly parent and me, and he has worn thin, just frazzled. He needs time where he can relax, where he can do what he wants to do. Sometimes that means away from all humans. Sometimes he needs to be by himself, and sometimes asking him, “What would you like to do?” is even too much for him. He is just like, “No, you just decide and let me chill.” So I definitely want to say caretakers need to be taken care of, too.
In terms of being diagnosed, it is okay to feel what you feel. It is okay to feel it and acknowledge it. One of the things I try to do is say, “Okay, this is fear that I am feeling right now,” or, “This is jealousy that I am feeling right now.” It is okay to feel what you feel. Know that people are not going to understand unless they have been through it. They are not going to understand. Some of them will want to understand. Some of them will be afraid and step back.
Some people will say things that are hurtful and they do not intend to be hurtful, and it is okay to say, “That was hurtful” — even if you do not say it in front of them — to acknowledge it again, to say, “that hurt my feelings.” Process your feelings. Acknowledge them, and when you are feeling down, say, “It is okay to feel down now,” but know that it is not good to stay there. It is not good to stay down.
There is hope. We can keep going. Our lives may not look the same, but there is beauty there, too. There is beauty in learning what your body can do, even as it is battling chemo side effects. There is beauty in learning that you are more than what your face says. The women’s issues — losing hair and things like that — I have really had to reckon with my vanity, and that is what it is. It is vanity. Beauty truly is more than what is on your face.
The friendships that last while you are battling cancer are the real friendships. Those are the ones with the people who truly care about you, and those are the ones worth holding on to. Those are the ones that will see you through it, whether it is the friendship with my husband and my friends that carry me to treatments, the ones who pray with me, or the ones who send me sweet messages. Those are what carry me through.
it is okay to feel down, but try your best not to stay there. Try to change your thinking to see where the beauty is. What is the message God is sending you? What is there to see that you did not understand before? Maybe think of it as a new quest, a new challenge in life. As an English teacher, I used to say, “This is a plot twist in my story. Where is this going to take me, and what new things am I going to discover?”
It does not mean that you are not going to be in pain, both physical and emotional, but again, what is there to learn from the pain? What is there to see in the pain? How does that make you more sympathetic to others’ pain? Where is this journey going to take me now? I have learned things about teaching from my experience as a patient. So there is beauty to be found. There is hope, and there are lessons to be learned.
Spencer’s Fertility Journey and an Unexpected Ovarian Cancer Diagnosis
Spencer and her husband were in the process of trying to grow their family through fertility treatments. The executive producer, mother, and wife had endured the challenges of IVF before, and in early 2025, a routine baseline screening for a second embryo transfer altered the course of her life. When an unexpected ovarian abnormality appeared, further follow-up and surgery confirmed that she had early-stage ovarian cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
The diagnosis of ovarian clear cell carcinoma, a rare and aggressive subtype of ovarian cancer, meant that Spencer had to undergo immediate and life-altering surgery. She underwent a hysterectomy, an oophorectomy, and a salpingectomy to remove her reproductive organs, and she lost the ability to have another child. She openly describes the dual grief of confronting cancer and the end of her personal fertility, navigating both with the support of her husband and community.
Throughout her treatment, which also included chemotherapy, Spencer did her best to maintain normalcy for her young son, relying on family, friends, and a flexible workplace. She shares how complex it is to explain cancer to a toddler, her son’s pragmatic response to the physical changes she underwent, like hair loss, and her increased appreciation for small daily moments that followed her experience. Spencer also discusses the financial and emotional realities of fertility treatment.
Now in remission, Spencer focuses on vigilant monitoring, making full use of her new knowledge of genetic risk factors such as BRCA positivity and Lynch syndrome. Her story highlights the lifesaving potential of routine screening during fertility treatment, the limitations of current ovarian cancer detection strategies, and the power of self-advocacy. For fellow ovarian cancer patients, Spencer underscores the importance of listening to one’s body and asking for support: “You have to be strong, but you don’t have to do it alone.”
Watch Spencer’s video and read through the edited transcript of her interview below to learn more about how:
Early detection of ovarian clear cell carcinoma can be lifesaving
The impact of cancer extends beyond treatment to fertility, finances, and emotional health, making insurance and community support critical
Self-advocacy and attentive listening to one’s own body are crucial for any patient facing a serious health condition
Asking for and accepting help is an act of strength, not weakness, especially when facing the realities of cancer and intensive treatment
Spencer’s experience demonstrates personal transformation; she emerged with deeper gratitude and a more present, accepting approach to life
Name: Spencer L.
Age at Diagnosis:
35
Diagnosis:
Ovarian Cancer (Ovarian Clear Cell Carcinoma)
Staging:
Stage 1
Mutation:
BRCA
Symptoms:
None; mass in the ovary discovered during preparation for IVF
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with ovarian cancer in April of 2025. It was stage 1 clear cell carcinoma, to be exact. I am from Charlotte, North Carolina, originally from Las Vegas, but I have lived in Charlotte for 11 years now.
I am a mother and a wife, and those are the two titles I am most proud of. My son is two and a half. I have been married for just over six years now, but my husband and I have been together for a little over 11 years.
I love to read. I am a part of the Junior League of Charlotte and have held some good roles there. I took a little bit of a step back after I was the Executive Vice President. I am also a part of the Zeta Tau Alpha alumni group here in Charlotte. I was a Zeta throughout college.
I am an executive producer at WCNC Charlotte, so I work with our reporters, our producers, and everyone in the building to tell the news and what is going on in Charlotte.
I am a daughter, a sister, a niece, and a cousin. I love my family.
IVF, fertility challenges, and discovering ovarian cancer
We did IVF to have our son. That was a long process. We had talked about whether we were going to have another child. Initially, my husband and I both wanted three kids, but life took turns, and it took longer, so we decided maybe we would have two. I was a little bit on the fence, and I think I was just scared. We had gone through some miscarriages, and IVF is tough, so it was not an easy process to get pregnant. Just knowing I would have to go through that again was hard. But we ultimately decided we would try.
In January of 2025, I went to my IVF clinic to get some of the first baseline testing done, just to make sure we were good to do another embryo transfer. They took some blood work and looked at my lining. They said everything was great, and to come back in a month and start my meds. A couple of weeks from that appointment, I was supposed to come back in a month, and we would be ready to transfer.
I came back almost a month to the day later in February, and they told me most things looked good, but my right ovary had doubled in size in a month. They did not really know what was going on and told me to come back in two days to see the actual doctor so he could get a better look at it.
I came back in two days. He said he did not really know what was going on and that it was weird that I was not in pain. He said he would think I should be in pain, but I was not. He sent me straight to an oncologist. That was on a Thursday. I saw the oncologist on Monday.
She had seen the ultrasound they sent over and thought maybe it was just a mass, especially because I was not having any pain. I am young, so there is that thought that cancer does not come this young. We know that it does, but I was not in any pain, and I did not really have any symptoms. She took some blood work, and one of my cancer markers was high, but she said that could be high from other things going on in my body. I still left that appointment hopeful.
We scheduled a surgery because she said if I wanted to get pregnant, I should not have this mass or cyst in my body. We agreed to plan to get it removed, no matter what. That was February 24th. My surgery was scheduled for April 2nd.
We had a conversation about what to do if it were cancer. She said they would test the tumor after they removed it. They would test the mass for cancer, and if it came back positive, did we want them to take everything, or did we want them just to stitch me back up so I could decide later? I said that if it was really bad news, if it was high grade and highly aggressive, to just take everything. My main thing was that I wanted to be alive and here. That was what mattered.
I went in for the surgery and woke up still groggy. My husband had to tell me that it was cancer and highly aggressive. They had removed everything: my uterus, my ovaries, my tubes, everything. In a span of six weeks, I went from thinking I might have a second child to being told I was never going to carry a child again. It was hard, but I am glad that I am here, and that was my number one thing.
I feel crazy saying that I kept battling between whether I wanted a second kid or not, and I kept thinking, “Send me a sign, send me a sign.” I remember thinking, “I did not want this big of a sign, but I guess that is my answer.”
Processing the word “oncologist” and the fear before surgery
I remember being told I was being referred to an oncologist and just saying, “Okay, okay.” I do not think in my mind, at that moment, I fully recognized what an oncologist was. Then I got this call: “Hey, this is Levine Cancer Institute with the oncology department,” and that was when it hit me. I thought, “Oh my God, oncology is cancer.” I asked the woman on the phone why she was calling and said I had just been told to be there, and asked if she could tell me what was going on. She said she was just the scheduler and was sorry. I apologized to her because it was not her fault, but I felt so thrown.
I was so thrown by going from “Okay, I am going to have this kid,” to “No, now you are not,” and I was not processing it well. As bad as it sounds, that first initial moment was the hardest part for me. I was more scared then than I was when I woke up from surgery and was told I had cancer. I think it was because that was the initial part. After that, I had about five weeks to stew.
Once I learned about the symptoms, I started being more in tune with my body. I think the symptoms started coming after I heard about them. I was losing weight, I got fuller more quickly, and I had some bloating. I started thinking this could actually be cancer. I had five weeks to stew with that possibility and know it was real.
It is crazy because at that first oncologist appointment, she said surgery was probably in about five weeks. I remember asking her if it was five weeks because she did not think it was cancer, and if it would be sooner if she thought it was cancer. She said no, they were just really booked up. I thought that was crazy. Maybe if they really thought it was stage 3 or 4 cancer, things would have moved quicker, but I kept thinking, “Thankfully it was stage one, because I would have wondered the whole time whether those five weeks mattered.”
The agony of waiting and realizing that I had been walking around with cancer
The waiting was awful. People say the waiting is the worst part, and it really is.
You cannot do anything. You are just waiting and sitting in your thoughts, and that is not healthy.
I did not feel like I had been experiencing symptoms before all this, so realizing I had been walking around with cancer in my body was terrifying.
Once I knew there was something there, I became more aware of every feeling and change. I started connecting potential symptoms in a way I never would have before.
The more I learned, the more I saw how easy it would have been to dismiss what was happening as something minor.
Grief, embryos, and not being able to carry another child
Some days, I do not know if it has fully hit me that I will never carry another child. We still have embryos, so we could have a biological child, but I would not be the one to carry the pregnancy. I remember getting a bill from our fertility clinic saying we had to pay for the next year of storage for our embryos. I had that thought of whether we should do it or not. Everyone around me said not to think about it yet, but I had to think about it because I had to decide whether to pay for the storage or not.
We chose to pay for it because I could not fully think it through, but I did not want to totally give up yet. We are still going through that. I have looked into surrogates, but they are so expensive. People say we can just do that, but it is not that simple. We have some IVF and fertility insurance, but it does not cover nearly as much as a surrogate would cost.
I still go up and down with it. I think about how I was asking for a sign, and this is the sign, but it is a brutal one. I do not know if I have fully dealt with it yet because I have been trying to deal with the cancer and stay alive. I have been trying to focus on being here. If I am being honest, I do not think I have fully processed the loss of carrying another child.
Motherhood, perspective, and how my son grounded me
I say that every pregnancy is beautiful and everyone is appreciative of being pregnant, but people who go through IVF and have had losses appreciate it differently. I feel like I appreciate having a child a little bit more.
I feel terrible saying that because I know everyone loves their kids, but there is a different layer of gratitude when you have fought so hard to get there.
The other day I woke up and work was already go, go, go. People were calling out, and I was thinking, “That is more that I have to do now.”
My son was awake, and I went in to get him out of his crib. He said he wanted to read some books. We read a couple of books, and he was just so joyous about the books and each page. I remember thinking, “This is what matters. That’s all that matters.”
I am sure I appreciated him before, but now I hold on to him even tighter. He has been the daily reminder of why I wanted to live and what I was fighting for.
Navigating marriage, communication, and shared loss
Neither my husband nor I is very emotional. I do not know if that is good or bad.
I remember talking to him either the night before surgery or the week before and saying that if it was cancer, what did he want me to do. I asked if he wanted me to get stitched back up so we could figure it out later, or if he wanted them to take everything. He kept saying it was up to me, but I told him that if they had to take everything, it would impact him, too. When it comes to another child, that is not just about me.
He told me he wanted me to be alive. If they needed to take everything, they should take everything. I said, “Okay.”
He has always been a partner who is very 50/50 with things, and even more so now. He has been great with our son, the house, groceries, and cooking. He is the better cook, so he has already cooked more than I did, but he stepped up even more.
We have tried to live life as much as we can. I was lucky I did not have super bad side effects, but I still had to be vulnerable at times and ask for help, which I am not good at doing.
I also had to remind myself that I was not angry at people; I was angry at the situation. That helped me keep perspective when my emotions were high.
The financial reality of IVF and fertility care
The financial side of IVF and alternative ways of having a child is a lot. I am lucky that both my husband and I had IVF benefits through our jobs. We still had to meet our deductible, which is high and feels crazy, and we did take out a small loan for part of it. Thankfully, we have paid that off now, but we did it just so we could make it happen.
So much of IVF coverage is paying up front, whereas with other medical bills, you can often get on a payment plan or receive your bill later and deal with it over time. I was lucky to work for a place that has IVF benefits, so we could pursue that path.
I am in Facebook groups full of women who ask how others are doing this with no coverage. It is super unfortunate. There is a lot of push to get more benefits covered because fertility treatment is more common than people realize. More and more women and couples are going through this, and not just heterosexual couples; LGBTQ couples need fertility support to build their families, too.
It should be something more affordable and accessible.
Infertility, guilt, and a late discovery of silent endometriosis
I remember feeling like there was something wrong with me. My husband felt defeated, too, when we finally moved into the IVF world. He felt like he could not provide for his wife to have a child. We both got tested and were told nothing was clearly wrong, which made it harder because we did not understand why it was not working.
On the cancer side of things, I now see some things that were probably making it harder. During my surgery, they told me I had some endometriosis. I was shocked because I had gone through all that IVF work, and no one ever found it. My doctor said it is hard to diagnose, and you basically have to see it, which requires being cut open. Again, I was not having symptoms, and I had heard people talk about silent endometriosis and assumed I did not have it. Maybe I did.
Looking back, I think that could have been part of what made it harder for me to get pregnant and then harder to continue to carry a child once I did get pregnant.
Choosing to work through chemotherapy
I coped with treatment by trying to live as normal a life as possible. I used no PTO days for the chemo infusions themselves. Round one of chemo was the day after my son’s second birthday. I made sure to have his birthday party and enjoy the weekend. Then we went into round one. My family was in town for my son’s birthday, and I felt pretty good overall. We had plans and went out around the town. I went to a friend’s child’s fourth birthday party. I worked and felt okay.
I had that week off work anyway because I had taken it months earlier for my son’s birthday and family visiting, so that timing worked out. After round two, we went to Florida for the 4th of July. Round three was when things started to hit a little harder. I think round three was the first time I had to call out of work for a day because work was crazy and I was doing too much. I realized that was not great.
By round four, I decided I would work from home a couple of days a week after chemo, and that was much better. I did not do that for round five because we were so busy, and then I had to call out again. By round six, I knew I definitely needed to work from home after treatment.
I had a great job with flexibility and great bosses. That made such a difference. I tried to balance rest with not just lying in bed, because lying around made my body hurt worse. I really wanted my son not to know too much. His being two was, in a way, a good age where he did not really understand, which was nice. At the same time, I would have to tell him I could not play right then and needed to lie in bed.
He was also the one who got me out of bed every day and kept things normal. I was especially worried about him seeing me lose my hair. That felt like it would be really hard for him.
Hair loss, wigs, and my son’s reaction
We shaved my head one day and made it a shaving party with some friends, but we did it during my son’s nap because I thought it would be too hard for him to see. I had some wigs ready. We did the shave on a Monday, and I did not show him my bald head until Thursday. I was really nervous.
We filmed his reaction. It was just normal to him. He thought it was funny. He wanted to take the wig off and put it back on, so you can see us playing with it in the video. Some days he wanted to wear the wig himself, so I put it on him a couple of times. It has been normal to him. I think once my hair grows out, he will be confused about why it does not come off anymore.
I told my husband I hope our son starts going to him and asking him to take his hair off. Thankfully, he has not tried that with anyone else. I think he knows it is just a “Mommy thing.”
We will see what happens as my hair grows back.
Balancing work, income, and intense chemo
My plan was always to work through chemo because we needed my income, and also because I wanted to stay connected to something that felt normal. I really love what I do, and I knew that if I could work through treatment, it would give me a sense of normalcy. When I was out on maternity leave for 12 weeks, I loved the time with my son, but I was excited to get back to work because it is a big part of who I am. It makes me a better person and a better mother.
Chemo days themselves were five to six hours, so I took those days off. My chemo days were on Fridays because my husband was off on Fridays and could come with me. I was usually back at work by Monday and, for the most part, felt pretty good through most of the rounds, especially at the beginning.
Telling coworkers about cancer and being seen
I think my boss checked in the day after my diagnosis, or I called him the next day, and I told him what was going on. I told him he could share with people if he wanted to, so I would not have to be the one to tell everyone. He said he would, and I was grateful he shared with the other managers.
I am not an emotional person, and I did not mind people knowing, but I knew people would feel bad for me. That was one of the hardest parts: having to share news that would make other people feel bad. I knew I had to tell people, but I did not want to.
People at work already knew I was going to be gone for two weeks for surgery because I had told them I had a mass and needed surgery. That part was not a surprise. After I got my diagnosis, I told my direct team and some people I was close to. Then I realized everyone would need to know eventually, and I did not want to be texting every single person.
A couple of days before I went back to work, I made a long social media post about everything. When I went back, some people came up and talked to me, and others just commented online or checked in that way. When I finished chemo and rang the bell, one of my friends who works with me was there. She sent the video to the station, and they played it on the newscast that day.
When I came back on Monday, someone said they had no idea. I explained that was why some days I had turquoise hair or pink hair, or short hair, or long hair, or a hat where you could tell I had no hair underneath. It was nice that people did not necessarily see me as that different or treat me like I was fragile. At the same time, it was still hard because I did not want to make people feel bad, but I also needed them to know what was going on.
Ringing the bell and post-chemo scans
Ringing the bell was complicated emotionally. You ring the bell, but you still have to do a scan after chemo. I am very superstitious and believe in jinxes. I worried that if I rang the bell and then had a scan in a month that was not clear, I would feel stupid for celebrating.
I tried to remind myself that my scan before chemo had been clear, so it really should not come back during chemo. I told myself I should be okay and that I would be glad I rang it. I was really happy I did. My husband brought my son, and a couple of close friends who had been checking in on me and supporting me came as well. I brought cake or cupcakes, balloons, and flowers. It made the day feel celebratory and special.
My last round of chemo was September 19th. My scan was on October 31st, Halloween. I was a rare case in the sense that I had stage 1 ovarian cancer, which is not common to catch that early. After surgery, I did a scan before I even started chemo, and it was clear. They believed they had gotten everything with surgery, but cancer cells are tiny, and you do not always see everything. They still wanted to do chemo to kill any remaining cells. I agreed.
I expected my post-chemo scan to be clear, but I was still nervous. I had five weeks between chemo and the scan. Cancer usually does not come back that fast, but so much of my case had been rare that I was worried I would get the bad kind of rare. It was all clear. Everything looked good.
Right now, I see my doctor every three months for blood work. The plan is to monitor my tumor markers that way. She does not want to scan me over and over unless my blood work shows something concerning or I have symptoms. If I get to the six-month or one-year mark and feel nervous, she said we can scan then.
BRCA, Lynch syndrome, and lifelong surveillance
During all of this, I found out that I am BRCA-positive and have something called Lynch syndrome.
BRCA increases the risk of breast cancer and ovarian cancer. Lynch syndrome increases the risk of ovarian cancer, colon cancer, skin cancer, and a handful of other cancers.
Because of this, I now have a yearly dermatologist appointment so they can check my skin. I do breast MRIs and mammograms, rotating every six months. I have already had both this year, and they were clear. I will start colonoscopies next year.
It will be a lot of doctor’s appointments, but hopefully all of them will be preventative and allow us to catch anything early.
IVF as a life-saver
I say that doing IVF saved my life. My husband and I had a conversation about whether to have another child on our anniversary in September 2024. We decided we would start trying again in the new year. I think about how bad things could have gotten if I had not gone when I did.
I was not having symptoms at that time. Even when I did start noticing symptoms, it was only because I knew what they were and was looking for them. Otherwise, I would have thought they were just PMS or my body being weird. The symptoms were not super painful or obvious. That is what is so weird and scary about cancer: the symptoms can be vague and easily attributed to something else.
I think about the timing of going in for IVF and how, during a transvaginal ultrasound, they caught my enlarged ovary. There is no standard screening test for ovarian cancer. We do mammograms for breast cancer, but for ovarian cancer, we do not have a routine screening that everyone gets. There is a blood marker test, but that is usually done once there are already concerns.
I was lucky that it was seen incidentally on that ultrasound. It makes me wonder why we do not do transvaginal ultrasounds yearly for women, or at least for those with risk factors. We should be doing more to prevent things. Breast cancer is more common, but often caught earlier and is not as deadly as ovarian cancer. Ovarian cancer is often caught late, and that is why it is so deadly.
Living in survivorship and learning to let go
Each bit of good news felt like a physical weight lifting off my shoulders. People talk about that metaphorically, but I actually felt my shoulders drop after each positive update. I am a nervous patient in general. Before every chemo round, they tested my blood to make sure my body was recovering and checked my tumor markers. I would be so nervous waiting to see if my marker had risen.
They would take my blood pressure and tell me it was a little high. I would say it was because I was sitting there waiting for results. The moment they told me things were okay, and I could move on to the next round, my blood pressure would come down. After my post-chemo scan came back clear, my blood pressure was totally normal. There was nothing to be anxious about in that moment.
Each bit of good news made me feel like I could make a plan for next year, next week, and next month. I am very much a planner, so not being able to plan during treatment was tough. I would think, “Okay, three days after chemo, I might be okay to do something, but five days after, maybe not.” I had to schedule my life around that.
Now I am learning to let things go in a new way. My son had picture day recently. I had an outfit picked out for him, and he said no; he wanted to wear his football shirt. Before all this, I would have insisted on the outfit I chose. Instead, I said okay, he could wear the football shirt. I thought, “What does it matter? You might not even order the photos. This is who he is right now; he loves sports and balls, and that is what this photo will show.”
We took our Christmas pictures the week before. I had lost all my eyelashes at the very end of chemo. I am really low maintenance and have never worn fake eyelashes. I suddenly felt like I needed eyelashes for the photos. I bought lashes and glue and had someone at work show me how to use them. Then I lost the glue and could not find it in time. I was so upset at first, but then I had to tell myself this is my life right now, and it is okay. People are not going to notice as much as I do. I remind myself to have fun and to let go of things that do not truly matter.
This time of year, with the holidays, is full of plans, and I love that. I also have to remind myself to schedule rest because if I do not, I will go, go, go, my body will hurt, and it will be mad at me later. I am trying to balance what is realistic for me to do with permitting myself to rest.
Asking for help, community support, and redefining strength
I would tell anyone going through something similar to advocate for themselves and listen to their body. Ask for help when you need it, because you are going to have to be so strong. I found so many people wanted to help me, even if it just meant talking.
At first, I did not know how I needed help. I would say we were fine. People kept asking, and eventually I told them to let me get through that round, and then I would tell them what I needed. So many people want to help and be there for you. They feel bad if they cannot, so it is important to find ways you truly do need help and be specific about it.
I realized dinner was really hard. I often did not have the energy to cook. So being able to say, “Dinners are hard. I do not have the energy. Can you send this?” made a big difference. Whether you want something specific or are okay with anything, having people take that off your plate is huge.
It is okay to take each day in stride and to accept that you are not going to be exactly who you were before. In a way, this experience changes you for the better because you see life in such a different light.
Nicole’s Stage 1 DCIS Breast Cancer Experience: How She found ‘Beauty in the Breaking’
Nicole is a self-described “bubbly” career coach and avid solo traveler, but everything changed when she felt a small lump in the shower. She was 41 and had never had a mammogram. Still, she went on a planned trip to Milan, but cut it short to get her lump checked. Imaging led to a biopsy, then a meeting with a nurse navigator that made everything feel real. Days later, during her annual exam, she heard the official words: ductal carcinoma in situ (DCIS) breast cancer, a very early form.
Interviewed by: Ali Wolf Edited by: Chris Sanchez
Nicole remembers sitting in a paper gown, mind racing about deductibles as a self-employed person, then driving straight to her brother’s office, repeating, “She said it’s cancer.”
Nicole’s DCIS breast cancer was fast-growing and aggressive, but caught early. Her surgeon told her she had saved her own life by finding the lump when she did. Within 13 days of meeting her care team, she underwent a lumpectomy with clear margins and no lymph node involvement. Then came one of the hardest decisions: whether to do chemotherapy. She had the choice because her Oncotype score was right on the cusp. After prayer and reflection, she chose chemo as a preventive measure to lower the chance of recurrence.
Her treatment plan included four rounds of chemotherapy, a month of radiation, and ongoing tamoxifen. Throughout it all, Nicole fiercely protected pieces of herself, especially her curly hair, through cold capping.
Today, Nicole describes herself not just as a survivor, but as someone transformed: softer, more empathetic, and more willing to sit with others in their darkest moments. Looking back, she calls her breast cancer experience “the most beautiful” of her life, not because it was easy, but because of how it expanded her capacity for love, faith, and connection.
Watch Nicole’s video or read the interview transcript below to know more about her story.
Her DCIS breast cancer experience started with a self-detected breast lump before a trip abroad, showing how fear and denial can live right alongside intuition
A theme in Nicole’s story is the importance of community; once she shared her diagnosis, she discovered a powerful network of family, friends, survivors, and patient advocates who held her through every phase
Her relationship with her mom deepened as they navigated caregiving, vulnerability, and independence together, transforming two strong women into a softer, more mutually supportive team
Through this experience, Nicole’s perspective shifted: she now sees her body as resilient, her life as “a blessing” simply because she is alive, and her cancer chapter as lesson in empathy that allows her to sit with others in grief
Even after treatment, she keeps her “bubbly” identity and love of travel, integrating cancer into her story without letting it define or diminish the parts of herself that bring her the most joy
Name: Nicole F.
Age at Diagnosis:
41
Diagnosis:
Breast Cancer (Ductal Carcinoma in Situ or DCIS)
Staging:
Stage 1
Symptom:
Appearance of a lump in the right breast
Treatments:
Surgery: lumpectomy
Chemotherapy
Radiation therapy
Hormone therapy: tamoxifen
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in San Francisco, born and raised in the Bay Area, and in October of 2023, I was diagnosed with stage one breast cancer.
My bubbly personality and love of community
Yeah, so I think the word I get most is “bubbly,” which I’ve gotten since I was young. I’m like, is that young? But I love bringing joy. I love bringing people together, building community.
Whether that’s at church, in my volunteer work, or in my work as a career coach, I think most people are just like, “I really like the energy you bring. I feel like I could be really comfortable with you,” and I love that. I love that people can just be themselves and find a place.
Travel, faith, and what lights me up
On my first trip abroad, when I was 16 years old, I went to Romania to work with kids on the street. Then I studied abroad in Florence years later, and I loved the freedom that came with travel. I’ve been solo traveling since my first sabbatical, when I was at a company called Genentech, when I was 29. I love learning new things through culture.
Travel has been such an extensive part of my life that that’s where I’ve always spent my money and my time. I’ve been to all 50 states, 70 countries on seven continents, and I think about five Canadian provinces. I love learning about people, and I love learning about myself through other people’s eyes. “I love learning about people, and I love learning about myself through other people’s eyes.”
Faith, perspective, and traveling alone
I’m a believer and a woman of very deep faith. So to me, when I travel, I see the mountains, the seas, and the cities as love letters to me. It’s like you go out and you see that I know what I know, and I don’t know what I don’t know. When I go out beyond myself, I learn so much more about empathy.
Empathy is a very big thing for me, and I think the best way to see that is to be in other people’s shoes as much as you can. You can’t always do it. But I’m so filled; I’m filled to the brim when I’m traveling and learning new things, seeing how far I can push myself, and strengthening the muscles of resiliency. To me, it’s really important to see the difference between being lonely and being alone, and knowing that I can travel alone and survive it. I can sit at a table and eat alone, and I can meet new friends.
I love Airbnb experiences because I’m always meeting new friends and new people. The quote that says, “A stranger is a friend you just haven’t met yet,” is so true. I now have friends all over the country and the world because I love meeting new people and seeing the world through other people’s eyes. When I come home, I feel so full because I realize that my little thoughts are so small in comparison to everything else.
Perspective, advocacy, and humanitarian work
That’s what I’ve been dancing around. The perspective that other people bring makes you vote differently. It makes you talk to people differently. It makes you represent yourself differently. It makes you speak out for the other.
Some people don’t have voices, and I love speaking on behalf of those people. I’ve done a lot of humanitarian work as well. Seeing what life looks like in other places is a new perspective. “The perspective that other people bring makes you vote differently, talk to people differently, and speak out for the other.”
Food Network to Genentech and oncology work
Well, I started my career at the Food Network in New York City, in Manhattan, downtown. It was so cool. But then I wanted to move back to the Bay Area, and my aunt at the time was like, “You need to work at this company called Genentech.” I was like, that sounds boring because science — and I was a broadcast journalism major in college. So I thought, “Science, I don’t know if it’s up my alley.”
Honestly, my eight years at Genentech were the highlight of my career. I worked in oncology. I worked on Herceptin; I worked on all of our oncology portfolio and met amazing physicians and nurses — salt of the earth, the best people ever created — and salespeople who were changing the face of cancer in real time, which was really cool because Genentech’s products were standard of care. From that, I did a lot of meeting planning. I met a lot of patients. It was a really cool experience, and the people there were phenomenal. The products we were making were earth‑changing for people.
The first sign that something was wrong
I found, I felt, a lump on my right breast when I was in the shower. It was one of those things where you’re just kind of doing your thing. I was not being super responsible and doing a breast self‑exam and all those things. I hadn’t even had my first mammogram. I thought, “This feels weird.” I felt it with this part of my wrist, and I thought, that feels weird that there’s something there.
You kind of think about it, but it never happens to you. It’s not supposed to happen to you. So I didn’t think too much.
But then I mentioned it to my best friend. I said, “It just feels weird. There’s this thing here.” She said, “Let me feel it,” as girls are wont to do. I asked, “What do you think?” She said, “It feels like a blueberry.” Then I went to my mom and asked, “What do you think?” She said, “It’s better to get it checked.”
Delaying the doctor to take a dream trip
Being that I love to travel, I had a trip to Milan scheduled, and I really didn’t want to miss it. I thought, “If this is cancer, I don’t want them to tell me I can never travel again.” So I actually went to Milan for two months, knowing this, knowing that this lump was here.
Women are so intuitive, and as I was there, I thought, “This just feels weird.” I kept feeling weirder and weirder. I did leave a little bit earlier to come home, and that’s when I showed it to my mom. That week, I went to my physician because it was there. It was not there, and then it was there. It wasn’t gradual.
I want to speak to that. There is a fear. You don’t think it’s going to be you, but you’re also like, if it is me, I don’t want to face it, maybe. I don’t want to uproot my life, even though this is a very big deal. Cancer is a big deal. Illness, grave illness, is a big deal. But I just thought, I don’t want it to upset my life. I don’t want it.
First mammogram, biopsy, and realizing it was cancer
So I went to my doctor. It was so fast. I went to my GP, who I’ve gone to since I was in high school. She said, “Okay, we’ll see. You’re due for your first mammogram anyway.” So we did an ultrasound and a mammogram, a bilateral mammogram.
It was very interesting because the radiologist came in and said, “This feels suspect; you need to come in for a biopsy.” I thought, “Okay, kind of no surprise.” I had friends who were like, “Oh no, I’ve had to have a biopsy before.” But then they walked me into the nurse navigator’s office, and I thought, “Why am I here?” I went by myself. My mom didn’t think she needed to come to my first mammogram with me. I’m sitting in this office, and she’s saying, “If this is cancer, these are the next steps you take.”
I was like, what? I’m so confused. Why is that me? I’m so confused as to why we would be talking about this. I got home because we have a family dinner at my mom’s house every Tuesday, so all my appointments were on Tuesday. I got home, my brother was there, my two nieces were there, my mom was there, my sister‑in‑law had a night off, and I just started crying. I absolutely started — I think I knew then what it was. I think I cried more then than when she told me it was cancer.
I went and got the biopsy on a Monday. I had my annual physical on a Wednesday. It was so apparent that they were like, “There’s no way that we’ll know by Wednesday.” I had an appointment on Friday, and I found out on that Wednesday, after the Monday biopsy, that it was cancer.
Hearing “It’s cancer” at 41
I was 41.
It was like, are we — so my mom was supposed to be with me again, but I was just going to my annual appointment. My physician said, “I have the results here if you just want to know.” My mom was supposed to be with me, and I kind of knew. I thought, if it wasn’t anything, she would have just said, “It’s nothing,” and off we would go.
I’m sitting there in one of those paper gowns, getting ready to have a Pap smear, and she said, “Do you still want your Pap smear?” I said yes. Another big thing for people is that I’m self‑employed. I pay for my own insurance. I was already imagining my deductible going through the roof. I only have a certain number of visits. I was off my Genentech, my Meta, my Airbnb — everywhere I had worked — plans and had to have my own insurance.
I just remember being there. I was shocked, and then I started crying. She said, “Can I hug you?” and I thought, “That’s the least you could do. I’ve known you for 20 years.” I was stunned. I didn’t know where to go or what to do. I immediately texted my friend Kirk, and then I immediately called my friend Elaine, one of my nurses from Genentech, a hematology nurse, and she talked me off the ledge.
My doctor also didn’t know too much. She said, “All I know is that it’s cancer. I can’t really tell you anything else.” I thought my mom would be at Bible study, so I drove to my brother’s office, my big brother. We’re all very close. He was out; his receptionist had him come back. I just kept saying, “It’s cancer. She said it’s cancer. She said it’s cancer.” I was also crying there. I was a bit hysterical, but you’re in shock, like, what is happening? The shock was absolutely overwhelming in the moment.
Financial fears, travel plans, and an amazing care team
I was actually supposed to go back to Milan in the fall, right when I was diagnosed again. I was telling my friends over there, “I don’t know if we can make plans, because this thing is happening.” It’s true: my whole world shifted. I’m sure for people with kids, it shifts even more. This is not how it was supposed to turn out. I was supposed to be able to do all these things.
I told my brother, who’s a financial advisor and therefore my financial advisor, “This is not what I saved my money for.” He said, “In fact, it’s exactly what you saved your money for.” I thought I was supposed to be traveling. It sets off a ripple. But my care team was so phenomenal that any question I had was immediately answered. I felt surrounded.
I’ve thought about this: we’re so scared to find out because it is life‑altering. It changes the trajectory of your life. My team said, “If you could have any diagnosis for breast cancer — not that you want one — this is the one to have because it’s run‑of‑the‑mill. We’ve got it. We can treat it.” The fear of handling it alone or not knowing pales in comparison to what happens when you get the news and find out how surrounded you are by people, by patient advocates, by friends, by family, by people you didn’t even know had breast cancer or a type of cancer. You find out so many more people, and they surround you. That’s a really beautiful thing that comes out of being in the cancer community.
From hiding the lump to feeling deeply supported
If I go back to that time in Milan, I wasn’t telling anybody, because obviously that would be irresponsible. There would be so many things about living with a lump in your boob for two months and not doing anything about it. I want to name that, because sometimes we let things go, and we should address them. I would have just been scared by myself, because I knew something was different with my body, and I was living in this dream world where nothing would happen, even if I got it checked and nothing happened.
When I finally did share, I had friends who came immediately. They were shopping for me. They were on my couch, answering questions. You find out, oh my gosh, I’m so supported and so well loved, even by people you don’t know. It doesn’t have to just be your family; there are people, survivors. It’s an amazing community.
The amount of conversations I’ve had across from people, just having tea together, to be an encouragement — saying, “I’ve been there. I understand. I understand the grief. I understand the fear. I understand not knowing how to navigate the insurance or having to call weekly to say this should have been approved, but it wasn’t approved” — is huge. You’re constantly doing it when you’re feeling well and when you’re not feeling well.
Talking about my energy, I would go to different appointments, and they’d say, “Are you really going through chemo? Are you going through radiation? Were you just diagnosed?” Because I would be, to me, to be alive is a blessing. That’s it. That’s what’s great. At the same time, the chemo part of it was really hard because I didn’t understand how I couldn’t will my body to feel a different way. I thought, “Oh my gosh, you’re letting me down.” But at the same time, my body also protected me. We’re these resilient beings. It protected me and kept me safe through all of it.
Meeting the care team, and my fast‑growing tumor
One of the best things my care team did was to have a nurse navigator. She made sure I knew who everybody was. We were supposed to have a call on Friday because I was told on Wednesday. She moved things around; we had a call on Wednesday. By Monday, I was meeting my care team: my radiation oncologist, my surgeon, everyone. I didn’t get to meet my medical oncologist right away because my insurance didn’t cover the person who was on.
I thought, “I don’t need chemotherapy. I’m super great.” My surgeon, whom I met, said, “We can get this; it’s in a great place; it’s going to be a lumpectomy, not a mastectomy,” all these things. I met the whole care team while I was still stunned. My surgeon said, “Six months ago, this wasn’t here.” It was a fast‑growing, aggressive tumor. She told me that I saved my own life. She said, “If you had waited even a couple more months, this would be a totally different conversation.”
While I was sitting in Milan, being like, “Should I? Should I not?” — it was growing exponentially at a 40% rate, which is quite high for a Ki‑67 score. Within 13 days, it was out. I had an MRI to make sure it hadn’t spread. There were so many appointments, but between the time I knew and my lumpectomy was 13 days.
I thought, “We’re going to be totally fine.” There was no lymph node involvement. They had clear margins. They got it right out. My surgeon called my mom and told her I was cancer-free. That was mid‑October, and in early November, I saw my oncologist for the first time. “My surgeon told me, ‘You saved your own life; if you had waited a couple more months, this would be a totally different conversation.’”
Oncotype score, tough chemo decision, and prevention
I kept trying to move that oncology appointment earlier because I was pretty sure that with a high Ki‑67 score and how aggressive the tumor was, my oncotype score would be high. That’s the score used to figure out whether chemo is necessary for premenopausal or postmenopausal women. It was right on the cusp, and I had to decide to do chemo.
My oncologist said, “You’re on the cusp. If it were this, I’d say yes, chemo. If it were that, I’d say no. But you’re on the bottom where you don’t need to, but with this margin of error, what is the difference?” I went home and thought about it. I prayed about it. My mom gave me space. Then I decided, “Okay, we’ll have to do it. We’re going to do chemo.”
The one thing I didn’t want to do, from the moment of getting the diagnosis, was chemo. Please don’t let me do chemo. I did not want to lose my hair. I found out afterwards that it’s the biggest concern for many people. I did not do any online sleuthing because I thought, “This is only going to depress me.” For me, as a big personality with big energy, my big curly hair was a huge part of my life. Being mixed race, it took me a long time to appreciate my hair. It was a very big thing to be like, wait, you can’t take it from me. This is a huge part of me.
Women think about their hair all the time. If you have long hair, cutting it to a pixie cut would be a huge decision. That was what I was thinking, but I said, “We’ve got to do it. My being healthy and alive is more important.” At that point, chemo was preventative. It was to cut down my recurrence rate. That was a very tough decision.
Chemo side effects, hair, and cold capping
It’s a huge thing. I kept saying to everybody, I don’t care how sick I get with chemo. I don’t care about all the horror stories with chemo. I can be throwing up in the toilet for 21 days straight as long as I don’t have to lose my hair. I thought, “My body is resilient.”
My friends said that because of my traveling, I have never gotten sick while traveling. We’re talking street food in Thailand. I’ve never gotten sick. They said, maybe you have so many antibodies or whatever. I didn’t really get very sick during chemo. I did the usual three days afterward, where I was lethargic, and my body felt weird, but thankfully, I was able to handle most of the chemo side effects.
You’re right, the hair is a huge deal. The hair is what makes people look at you and think, “She’s sick, even after chemo.” How long would it take for my hair to grow back? Years. Even now, it would be super short. I was blessed that I did cold capping, and it totally worked for me. I would say it didn’t, but it did. Everyone else was like, “You can’t even tell.” I would say, “I can tell,” but it was a blessing that they have that now as a treatment.
My sorority sisters pitched in — our alum group — my friends helped pay for it because it is pricey. But to keep your dignity, I think it’s an amazing option.
Hair trauma, mom as caregiver, and the chemo cut
My hair was — if you asked me, I’d say it was not unscathed — but it was much thinner. My friends said, “Well, you had a lot of hair to lose.” My mom and I were religious about hair care. My hair was in braids, just soft braids, the entire time. Anytime you see me in a cold cap, you’ll see me in braids.
She would wash my hair. When you wash, no matter what, some is going to come out. A huge heartbreak for me was that my mom was the one who washed my hair, because we did it in the sink. I never got into the shower; nothing ever touched my head. We used a pitcher, and she was the one seeing it come out. I kept thinking what it must be like for her to be taking care of her adult child with the hair coming out.
It was on my birthday. This was all happening through the holidays. My birthday is in January. My 42nd birthday was after round three, and that was the first time I saw bald spots here and here. I remember a picture of me blowing out my candles with my family. At Christmas, my sister‑in‑law’s family saw me in a dress and high heels, my hair big, and they were like, I’m so sorry; I thought Nicole was sick.
For my birthday, I remember seeing it. My mom said, “No one else can tell.” I said, “I can tell.” I could tell that under here it was all gone and thinning. It is very, very traumatic. So much of the journey is sad. It’s just sad. There’s no other word for it. I speak about grief, definitely, but sometimes it’s just really sad.
For all intents and purposes, I remember in May of 2025 going to my hairstylist and friend and saying, “It’s time. It’s long enough here. Let’s do it.” It was this small little bob, but it was my chemo cut. I called it that because my hair was back. Now it’s grown even more.
My mom, our small family, and caregiving
Thankfully, my family was there the whole time. My brother left work early so we could meet my care team and then go to my mom’s house. We’re a very small family unit. Growing up, it was my mom, my brother, my grandma, and me. My grandma passed about ten years ago. My brother has been married for 20 years, so my sister‑in‑law and I are very close, and I have nieces. But growing up, it was the three of us.
When this happened, it was the three of us again. My mom just stepped into action. My mom was a single mom, very strong, very resilient. I think I learned a lot of my independence from her. She stepped into action, and I’m so blessed she took care of me in the home I grew up in. It wasn’t some weird place; I felt so comfortable there. My friends felt comfortable there. I call her the Martha Stewart of the West. It was Christmas, so the whole place was decorated. It was warm.
I did arrange my meal train. She said, “Well, Nicole, I’m not the one who’s sick,” acting like she could do it all. I thought there would be an emotional toll. So I called our friend from church, and she helped organize, because I wanted my mom to be able to take care of herself. I knew she would want to be strong for me, and that’s even more exhausting.
During radiation, I would walk to the women’s center. It took 45 minutes, but I said, I’m going to keep my walks up. She would watch me walk by myself and get teary because my body was weak after chemo. This was just weeks after chemo. There was a space between her wanting to take care of me and her letting me be myself. She walked that line so beautifully.
We learned so much about each other. Our relationship has never been — as two strong women — it’s never been better. She learned how to soften for me, and I learned how to soften for her, needing each other in this time. It was good for us both. There are so many beautiful gems that come out of an experience like this, even though it’s sometimes hard to see. That’s one of them for me.
Chemo, radiation, and tamoxifen
I had four rounds of chemo and a month of radiation. Then I was put on tamoxifen. All this time, I’m planning my next trip because I’m like, “I’m out of here.”
I did four rounds of chemo, 21 days of radiation. Then I met with my oncologist, and she said, “Okay, let’s get you on tamoxifen”—five years of that hormone. I’m two years into the tamoxifen now.
Living as a stage 1 breast cancer survivor
It’s weird. I think the only way to say it is weird. Going through it, I thought, “Well, it’s only stage 1. I only have four rounds. I’m on TC; of my four rounds, it’s a pretty manageable chemo regimen.” My nurses would always say, “No, no, no, no, no.”
Elaine, my dear friend, would say, “The experience is still the experience. It’s still valid. It’s still life‑changing.” I always thought, “I don’t have ‘that’ story. It’s not stage 4. I’m not terminal.” But it’s still the story. It’s still the experience of going through it.
When you’re in it, you think it’s never going to end. Then suddenly you’re two years past it, and you’re like, “Oh.” Suddenly, you’re five years past it, and you’re like, “Oh.” You forget your tumor size, which you thought you’d remember forever. It’s weird to think, “I’m a cancer survivor,” because it is in the past. From diagnosis to my last day of radiation was six months. I wouldn’t even have a baby at that time if I were pregnant; new moms go through longer.
I think it’s about honoring the story, honoring my experience, and saying, “You still did it.” Being thankful for my body, thankful that my body was able to heal, that it handled chemo so well. I would talk to my body. I’d be here in my living room having quiet time, holding myself and saying, “Thank you for keeping me safe.”
Sometimes we think, “My body did this; something mutated and now there’s this thing.” But it also rallied. The immunity rallied around everything else to keep you healthy. For me, it really did, and that’s how I looked at it. But yes, it’s sometimes weird to be like, “Oh yeah, I had cancer.”
Beauty in the breaking, and how cancer changed me
There is a book called “The Beauty in the Breaking,” and I think that title captures it. The idea that I can now sit with people who have gone through deep grief and heartbreak is the most beautiful thing. I have a friend whose husband just went through stage 3 colorectal cancer at 40. I told her, “If you will let it — and this is not all pink roses and rosy glasses — if you allow it, it can be the most beautiful thing that comes out of your life.”
For me, it was. I became a softer person, a more understanding person, a more empathetic person. I became somebody who understands grief, which is not easily understood. Sadness and sympathy, yes, but to sit with people in deep sadness and deep grief is something you can only get by going through it.
I would say this experience has been the most beautiful experience of my life. I can’t remember the author’s name for that book, but “The Beauty in the Breaking” is an absolutely beautiful way to say it.
Grief, anger, and the feeling of drowning
There is not a part of me that I grieve now. In the middle of it, I thought, “Why me? This is not supposed to be me.” Going back to me being a believer, I thought, “I believe in a good God. Why would this happen?” You ask all the questions: why do bad things happen to good people?
In the moment, yes, you’re grieving. There’s pain. I was overcome. There were times I would just yell — not at my mom, but around her — “Why?” Anger. Also, I was on steroids. When you’re in it, it’s like being in a well.
The way I explained it to friends was that I felt like I was drowning. It was after my third infusion. I thought, “I do not know how people do longer than four.” I was tired of being tired — the mental part of it. It feels like I’m drowning, and I know I’m going to survive because people kept saying, “You’re almost done, you’re almost done.” But when you’re drowning, you’re still suffocating. You’re still underwater. Knowing you’re going to survive and someone is going to save you doesn’t make it better.
In the midst, you’re grieving. But looking back at it and looking back at the woman I’ve become, I can only rejoice in it. I talked with a friend, another Genentech gal who has a PhD in something with breast cancer. She lives in Milan as well, and I adore her. We talked about how we would never have this perspective if it weren’t for cancer.
We talk about my traveling, offering different perspectives. We would never have this perspective if it weren’t for cancer. She had her own diagnosis; I had mine. She’s in the clear. I can’t grieve it because so much beauty came out of it, but yes, I was deep in grief when it was happening.
Owning “bubbly” again after cancer
I would still describe myself as bubbly. I am back. I still go to see my infusion nurses. When they see me, it’s, “Oh, there she is.”
There’s a scripture that says, “We are oppressed, but we are not destroyed,” and that’s how I felt throughout. I was oppressed, but I was not going to let cancer have the final word. That’s why I walked to my radiation. That’s why I was always joyful going into my infusions. Cancer was not going to redefine me in that way. It would only redefine me in a better way.
I still feel very bubbly and energetic, still a person people love to talk to. It’s one more thing I bring. I had a client call the other day. We talked about coaching things, and she said, “I saw that you were a cancer survivor.” We talked for half an hour about that, and how she’s also a cancer survivor, and what that looks like.
As I mentioned in the beginning, there’s a camaraderie in being seen and being able to tell your story.
When a Mole Becomes Melanoma: Tara on Body Image, Wellness, and Being Heard
Tara’s stage 1B melanoma experience began with a small but nagging change on her back that refused to be ignored. In her early 30s, she noticed a mole on her shoulder blade getting thicker and increasingly irritated by her bra strap. Despite bringing it up repeatedly at annual skin checks, her concerns were brushed off as “cosmetic.” Eventually, encouraged by a friend and limited by Medicaid’s provider restrictions, Tara sought a second opinion at a skin clinic within her primary care network. A shave biopsy first came back clear, but pigment quickly returned, leading to a second biopsy and the call no one expects in their early 30s: melanoma.
Interviewed by: Keshia Rice Edited by: Chris Sanchez
Hearing the word “melanoma” while sitting in a salon chair, waiting for her eyebrows to be waxed, Tara’s mind leapt straight to chemotherapy, hair loss, and mortality. Instead, her treatment course centered on surgery: a wide excision of the melanoma site followed by a sentinel lymph node biopsy a few months later. In less than two months, her tumor went from 0.35 mm to 0.85 mm and from Stage 0 to Stage 1B, a stark reminder of how aggressive melanoma, a kind of skin cancer, can be. While she didn’t need chemotherapy or radiation, the emotional, financial, and employment impact ran deep. A physically demanding retail job let her go while she was still healing, leaving her to juggle rent, food, and medical needs during the isolation of the COVID-19 pandemic.
Before cancer, Tara had already lost about 50 pounds through diet and exercise. After her diagnosis and pandemic disruptions, her weight climbed to around 240 pounds, and she began experiencing joint pain she’d never had before. Requesting bloodwork and nutrition support, she committed to her health in a new, more holistic way — focusing on nutrition, therapy, and sustainable movement rather than perfection. Over time, she lost 110 pounds, got into the best shape of her life, and eventually transitioned into full-time work as a personal trainer, with plans for a future in physical therapy.
Today, Tara talks openly about scars, both visible and invisible. She emphasizes that skin cancer is not “just” skin cancer, that surgery-only treatment is still real treatment, and that survivorship is valid whether or not chemotherapy is involved. Her experience has turned into advocacy: urging young adults to push for second opinions, learn their insurance, stay on top of skin checks, and seek out community resources and young adult cancer groups so no one feels alone with a melanoma diagnosis.
Watch Tara’s video or read her edited interview transcript for more about her story.
Trust your instincts and advocate for yourself; Tara pushed past repeated reassurances and a dismissive response to get a second opinion that ultimately found her melanoma early
Melanoma can progress quickly, even without a family history or tanning bed use, underscoring the importance of regular skin checks and acting on changes
Surgery-only cancer treatment is still real treatment; survivorship is valid and meaningful even when it doesn’t involve chemotherapy or radiation
Tara’s experience led her to rebuild her relationship with her body, moving from fear and fatigue to losing 110 pounds and finding empowerment as a fitness professional
Community support, mental health care, and young adult-focused cancer organizations helped Tara feel less isolated and more empowered to speak up for others
Name: Tara S.
Age at Diagnosis:
31
Diagnosis:
Skin Cancer (Melanoma)
Staging:
Stage 1B
Symptom:
Mole on back that became thicker and changed color
Treatment:
Surgeries: wide local excision, sentinel lymph node biopsy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I am in Pennsylvania. I was diagnosed with Stage 1B melanoma in 2020.
The first signs that something was wrong
I was always kind of a very “moley” person. That sounds so weird to say that out loud, but I had a few pretty prominent moles on me. There was one roughly around the shoulder blade that I was getting really concerned about. It kept irritating my bra strap whenever I would go to change or adjust it. At the time, I went to my dermatologist. I would go and get yearly skin exams, and for a couple of years, he kept saying that it was just cosmetic and didn’t need to be removed. I went in with the intention of having it checked out.
I was noticing changes. It’s either getting a little bit thicker or it’s getting a little bit bigger. Something’s going on. He said his same song and dance, and I was a little bit frustrated.
I was on Medicaid at the time of my diagnosis and stuff. I say that because in 2020, it was already really challenging to get into doctors’ appointments, whether they were for somebody new or somebody that you were already going to.
A friend of mine and I go to the same health system for our primary care physician, in different locations, but within the same health system. She had mentioned to me that they had a skin clinic. She said, “Maybe you should try to get a second opinion from there, because with Medicaid, you are relatively limited in terms of providers to be able to go see.”
At the time, I didn’t necessarily want to drive all the way out into the city. I lived about 45 minutes south of Pittsburgh at the time. I went to the PCP’s office for a regular checkup exam and got the referral. I got scheduled for that skin clinic. This was right after COVID was really starting to get rampant in the U.S., when it was starting to get more publicly known, so late spring of 2020.
When I got referred to the skin clinic, they ended up doing a shave biopsy. They said they would send it out and let me know the results within a couple of weeks. Initially, the first biopsy done with them was fine, but then maybe about a month or so later, not even, I noticed pigment coming back onto the same area that they had biopsied.
I went back and said, “Hey, I’m noticing some pigment. What’s going on here? I don’t know if you guys said anything.” I saw the same doctor. He said that sometimes with a shave biopsy, they don’t get deep enough into the skin, so they would go ahead and do a second biopsy and let me know the results. They said sometimes a shave biopsy just doesn’t get big and doesn’t go deep enough, so I shouldn’t be too concerned. I had no family history of skin cancer and melanoma, so I really didn’t think too much of it.
Then I got the call. I want to say it was sometime in early June, maybe the end of May. I can’t remember an exact date off the top of my head, but I got the call around 5:30 or 6:00 at night while I was sitting at the salon, which was relatively late for a doctor to be calling me. I got the call that I had melanoma. They said that it was caught early. It was called melanoma in situ, so I would need to see my dermatologist to have the excision done and continue tests.
Hearing “melanoma” and my first emotional reactions
I’m 36 now, so I was 31 at the time of diagnosis.
Again, you hear the C-word, you hear cancer, and the general population doesn’t think of someone our age going through a cancer diagnosis. You hear the C-word, and you think pediatrics, or you think geriatric or older adult. I was freaking out internally. I was in the salon, getting my eyebrows waxed, so I couldn’t really do too much at that point, but I did mention to the lady that I was seeing, “I have cancer,” and she knew me pretty well, so it wasn’t crazy. I was scared because I knew skin cancer existed, but I didn’t really understand what the course of treatment would look like for me. Was I going to lose my hair, go through chemotherapy and radiation? Am I going to die? I hate to be morbid, but you hear the C-word and your mind automatically goes there.
I also felt very frustrated and angry because, as I said earlier, for two years I was seeing this dermatologist, and he continued to blatantly ignore my concerns. When I did finally get in, on July 22nd of 2020, when I had my wide excision done at the dermatologist, he had the gall to say, “Thank God the person that found this did when they did.”
I was sitting there during the cauterization, when they were finalizing the excision and trying to stitch back up, making sure that there was no blood loss or anything. I was sitting there with stitches being pulled through my skin and feeling angry. I wanted to say something to him at that point, like, “No thanks to you. You didn’t listen,” and I just didn’t really have the wherewithal.
To finish up the initial cancer story, when the dermatologist did their biopsy, they sent it out as well. It went from a 0.35 to a 0.85 mm cancer in under two months. From that second biopsy I had done at the PCP’s office near the end of May or June to the time I had the wide excision done, it went from Stage Zero to a 1B in under two months.
It was aggressive. Melanoma can get aggressive very quickly; it’s one of the most aggressive forms of skin cancer. It was really concerning. At that point, my dermatologist referred me to an oncologist to potentially do a sentinel lymph node biopsy. I had that done in October of 2020.
What surprised me about melanoma treatment
I was surprised about treatment in terms of not needing to go through immunotherapy, chemo, or radiation, but I was ignorant. I had no idea. You automatically hear cancer, and your mind goes to those things. I really didn’t have much education about skin cancer. That was definitely a bit of a surprise.
I also didn’t realize how much of a toll it was going to take on me financially and emotionally, and even in terms of employment. At the time, I was working in retail, living paycheck to paycheck. I still do, it’s 2025, right? I was working in retail as an online grocery shopper, putting together customer orders. It was a relatively physically demanding job. For two weeks, because I had stitches in my back, I had to be on light duty. I couldn’t do the full load of what I did for my employment, and they ended up letting me go because I had been there for under a year. I wasn’t eligible for benefits through them yet.
I couldn’t get FMLA, and I essentially got screwed over with my job because of it, which led to a lot more difficulties — being able to afford food, rent, car payments, and basic needs. I struggled with that for a couple of years because, as I was looking for new employment, oftentimes these jobs didn’t want to accommodate me for the time off I would need to go to my checkups. That included therapy, because I’m a huge advocate for mental health, and going to my new dermatologist, because I definitely found somebody different after that initial diagnosis was cleared.
The emotional and mental toll of melanoma
A lot of it was due to everything happening at once. In full transparency, right before the diagnosis, I had finally gotten my first appointment through some different programs where I live. Not only am I a cancer survivor, but I’m also a domestic violence and sexual assault survivor. I was finally getting out of that. The situation wasn’t active per se, because a lot of this stuff happened in my childhood, but during the pandemic, there were a lot of community resources and nonprofits doing housing programs and things like that. I found out about them during the pandemic.
I was trying to process all these things. I was moving out for the first time, then I got hit with cancer, I lost my job, and I was trying to figure out how to support myself. There was also the isolation that 2020 brought. We had to be socially distanced, so I couldn’t have friends coming into the doctor’s appointments with me. We had to wear masks, so you couldn’t see anybody’s faces. I feel like 2020 brought on a lot of isolation that led to a lot of mental health problems as well.
How cancer shifted my view of health and wellness
I’m going to backtrack a little bit. Before my diagnosis, I lost about 50 pounds through diet and exercise. My weight always fluctuated a little bit throughout my adulthood. Then, with the pandemic shutting the world down — gyms down — and dealing with cancer, priorities shifted.
I gained it all back, plus some, and I reached a lifetime high of almost 240 pounds, believe it or not. You look at me now, and you’re like, “What?” Getting diagnosed with cancer, once I was out of the initial clearance of the surgeries and follow-up visits, I reached out to my PCP’s office. I could feel the weight that I had gained on my joints, especially. I had never really had joint issues before. I thought, “I really need to start getting this together. I have a good baseline, but I want to see where my bloodwork is now so I can start fresh. I’m out of this initial diagnosis; let’s go from here.”
My A1C was borderline pre-diabetic. I asked for a referral for nutrition services, and that’s what really started helping me take care of myself both nutritionally and through therapy, really working on holistic health and wellness overall, and then working on my diet and exercise.
I ended up losing 110 pounds and got in the best shape of my life. It also transformed my career, which I’m sure we’ll touch on later.
Staying committed to weight loss after cancer
The shifts in perspective because of my diagnosis definitely helped me stay committed to taking care of myself.
When you get hit with that C-word, you really start to think about what you’re putting in your body. I am not perfect by any means, still to this day. I will sit here and eat a processed protein bar because it is satiating and filling. If I want something that’s a bit of a sweet treat, I would rather eat a protein bar than a candy bar. At least it has protein.
Do I eat whole foods 100% of the time? Absolutely not. However, I’m a lot more mindful about what I put in my body. My meals now, the majority of the time, are a lot more balanced as well. Working in the fitness industry full-time, I’m surrounded by that, and it’s a constant motivation to continue down that journey. Even when you have slip-ups, one meal doesn’t matter. That’s okay; you just continue to go along the path.
Changing careers into fitness and future goals
My original background was actually nonprofit. I have done some marketing and development work in that industry. It’s a very challenging field to get into because a lot of people in that industry stay in it for a long time.
A lot of the positions I was involved in were more short-term or volunteer. I’ve done AmeriCorps, which is a domesticated version of the Peace Corps. You get placed at a school or a nonprofit agency, but it never led to anything long-term for me. I found myself wanting to be more involved in the health and fitness industry.
I’m a full-time personal trainer. I teach some group fitness classes, but ultimately, my next steps are to go back to school for physical therapy. I feel as though physical therapy is a really great combination of what I do now as a personal trainer and a more holistic perspective in a medical-based field, which leads to longer-term career opportunities.
Identity, cancer, and taking power back through fitness
It’s funny, because being a melanoma survivor and having a lot of excisions done — cancer, pre-cancerous, or moles removed for diagnostics just to make sure they don’t become cancerous — I have a lot of scars on my body. Some of them have faded better than others. I remember I had one on the side of my jaw that got removed a few years ago.
My dermatologist at the time said, “Do you want me to send you a referral over to the plastic surgeon’s office?” She didn’t necessarily feel the most comfortable removing that one since it was on my face. At that point, I said, “You know what? Just do it. If you are comfortable enough to remove it, I’m going to trust you.” I said that I would rather live with a thousand scars than ever have to fight cancer again.
Going back to my cancer story, I’ve never used a tanning bed. Clearly, look at me. I’m very fair-skinned. I’ve never used a tanning bed. Have the thoughts been there? Absolutely. I remember a few weeks when I was going to Planet Fitness, which is notorious for its Black Card and having the hydro bed and the tanning beds. Have I been tempted? Absolutely. But I never did. I was aware enough of skin cancer and the UV rays from those that I didn’t want to risk it. It’s a good thing I didn’t. I would rather live with the scars than ever have to deal with this diagnosis again because it’s life-changing.
I was blindsided. I’ve even gone through genetic testing, and there was no family history. There was nothing that should have ever determined me to have skin cancer as far as I know, unless it was something environmental, but I was completely blindsided.
Working in fitness has helped me feel more present and powerful in my body. It’s part of how I took my power back.
Fitness, strength training, and finding empowerment
My decision to go into the fitness industry helped with my identity and empowered me again after my health diagnosis. I was on this journey before the cancer diagnosis, so who knows what would have happened if the pandemic hadn’t happened.
I started doing a lot of cardio. Initially, when I was on my health and fitness journey, I would incline walk or use the elliptical. I didn’t start out running like a lot of people think I did. Eventually, I got into running and decided to start training for my first half-marathon. The Pittsburgh Marathon is a huge event in the city. They do what’s called Run for a Reason, a charity program where they have a list of charities that you can help fundraise for. If you raise a certain amount — I think it was about $500 for the half — you get your registration fee back. On this list was a group called Young Adult Survivors United. They are a Pittsburgh-based nonprofit that helps support young adults who have had a cancer diagnosis between certain ages.
It was a full-circle moment to help support an agency that means so much to me now, and to bring awareness to young adults who have been through cancer and the impact of that. In the fitness industry, I find strength training makes you a lot more mindful and physically aware of your body because of the contractions you’re doing with lifting weights. You’re more present in that. There’s still some of that in running, but running also takes your breath, so it’s a give-and-take. I find strength training to be a lot more empowering, especially as you continue the process and start noticing progress. If I’m using 10-pound weights and then I start pressing 20-pound weights, that’s really cool.
As I joined that group and talked about my story on social media, people saw me as a fitness expert, this person who has been through cancer and come out on the other side. It’s been a really interesting story.
Being diagnosed in my 30s and medical dismissal
I feel like being diagnosed in my 30s is a disadvantage because doctors felt that since I was young, it’s less likely that something is wrong. I told you before, I was seeing the same dermatologist for two years and never noticed too many changes with a lot of the moles on my body. But this one was pretty prominent. I even had a couple of pictures I was taking of it, the best I could — it’s a little hard to do a selfie with your back — but I definitely feel like he continued to ignore my concerns because I’m not a doctor and I’m young. I don’t look like I’ve ever tanned, so he didn’t seem to care, honestly. That was really frustrating.
I also want to include that they don’t talk about the aftermath or the support we still need. Just because I “only” had skin cancer doesn’t make my cancer any less significant. I don’t think doctors either have the knowledge or care to talk about support for cancer diagnoses, especially for people our age.
What survivorship means to me
The biggest thing I can think of is that survivorship means something different to everyone. As a skin cancer survivor, I hear all the time, “It was just skin cancer, it’s not that serious.” I’ve had friends tell me that, family tell me that, random strangers tell me that.
This summer was my fifth cancer anniversary. For me, survivorship was when my excision was removed, and I got to go to the hospital where my second surgery, the wide excision and lymph node biopsy, was done, and I rang the bell.
When I called the hospital, one of the staff members said the bell was typically reserved for people who had finished chemotherapy, immunotherapy, or radiation. I said, “Just because I didn’t have chemotherapy or any formal suppressive therapies doesn’t make my survivorship and my anniversary any less significant.”
My treatment was all surgery-based, and that doesn’t make it any less significant. That’s something I really want to push forward and speak about to the public: just because somebody doesn’t have those types of treatments doesn’t make that cancer any less significant. It is still cancer at the end of the day.
Skin is the largest organ of the body, and it’s just as important to take care of it as anything internal.
Stigma, tanning, and public perception
I had a couple of people mention spending too much time in the sun or hitting tanning beds, but anyone in my personal circle never really approached it that way because they know me well enough to know I’ve never used a tanning bed. They either said, “It’s just skin cancer, it’s not that big of a deal,” or they didn’t know what to say because it’s the big C-word, and they were scared. They didn’t understand, just as much as I didn’t understand what was happening to me at the time.
This is why I want to have these conversations — podcasts and public awareness — because I don’t feel like there’s enough attention to melanoma and skin cancers. I’m speaking out of my own experience; my cancer was still relatively early, so I don’t know what treatments look like for stages two, three, four, and so on. I’m just speaking about my story.
My messages for doctors and young cancer patients
To medical staff and personnel: listen to your patients. Reflecting on my experiences with that dermatologist, I felt so dismissed by his ignorance as a dermatologist, as a professional in the field of skin cancers. For him to say that it was just cosmetic and didn’t need to be removed was ignorant. I want these doctors to just listen. I want them to show compassion. I want them to treat their patients like family. I know their cases are loaded, but if we can ground ourselves, be more centered, and be individually focused, making sure that you are listening and being attentive to those needs, that goes a long way.
To young and new patients: don’t be afraid to get a second opinion. Obviously, it depends on the stage, but I had no idea my PCP’s office had this skin clinic at the time. Being able to get into that clinic wasn’t with a traditional dermatologist, but it literally changed my life. I got the diagnosis because of that. With Medicaid, it can be challenging to find a physician because there are limitations, but don’t be afraid to drive farther to get a second opinion. That’s something I wish I had thought about initially. I have anxiety driving in the city and in areas I don’t know, and I feel like maybe I would have found out sooner if I’d made that choice sooner. Lean into community resources because losing my job because of cancer was frustrating. It leads to a ripple effect of potentially losing food, rent, and so many things. Do your research on community resources locally and in the young adult cancer population. There are organizations out there, but it takes research and time. Be patient, but it’s out there. If I can do it, anyone can.
My advice on moles, skin checks, and early detection
This is actually something I’ve learned recently, as I’ve gone through my forms of treatment, which were skin checks every so many months. At initial diagnosis, it was every three months. As I progressed through that five-year course of checks, it went to every six months, and now I’m back to yearly.
If I notice something, I’m going to get in sooner. That would be one thing: if you notice something, get in as soon as you can, even if it’s just your PCP’s office, because they can do skin checks too. I forget the formal name of this, but you take, say, a mole on your shoulder and compare it to a coin, like a nickel. You use that coin on the edge of the mole to continually check over several weeks or a couple of months. If you’re noticing that the mole continues to grow along with the size of that coin, that’s a good indication that something is changing. It’s time to go to the doctors to get an opinion.
With skin cancers, they talk about the A, B, C, D, E of skin cancer: asymmetry, borders, color, diameter, and evolving. If the size changes, it gets darker, or has irregular borders, those are important things to notice in any moles or marks on your body.
What I wish I’d known before cancer
I think the biggest component is advocacy. I hear it in the cancer space. I hear it when my friends have health issues over time and have to navigate health systems, or they find out they have one issue, and the course of treatment causes another issue.
Advocate, advocate, advocate, because you know your body more than anyone else, so you have to fight for it no matter what. That is something I will continue to preach. I literally got a second opinion because I was noticing changes, and this doctor wouldn’t address them until it was almost too late. It was already there, and thankfully, it was caught early, but no thanks to that doctor.
In terms of melanoma, doing self-checks between appointments to make sure nothing is changing is important. I’m not saying to be a hypochondriac, but sunscreen, sunscreen, sunscreen, and self-checks between doctor’s appointments are key. Continue to advocate.
Try to have a good base knowledge of your insurance and be prepared to get a second opinion if you have to. Reach out to your insurance to find other providers that are in-network, because there is a cost to medical care. I went through an insurance change this year that ended up affecting who I was able to see. There are two major networks in the Pittsburgh area for health insurance and hospital systems. My insurance changed at the beginning of the year, and I had to change half of my doctors because my local health system went to one network, and my insurance took the other. That meant dermatologists and my PCP, whom I’d been seeing for 15–20 years. It was really frustrating to get blindsided when you build trust in doctors and suddenly can’t see them anymore.
Do your education on insurance, reach out, and understand your benefits. Often, there are navigators either within the insurance company or within the doctor’s offices to help you. Do as much research as you can.
Impact on friendships and relationships
A therapist of mine never ceases to remind me that when she gets her skin checks, she thinks of me. She always reminds me how much seeing me go through my diagnosis affected her, even though she had already gone for yearly exams. She’s a lot more diligent about checking her skin now, as well as her husband’s skin. I’ve always appreciated that. Some of my friends, not so much. I still have one who likes to go tanning, and another who has been supportive but doesn’t really do skin checks. She’s more, “If something comes up, I’ll deal with it.” My friends have been supportive as best as they can. It’s one of those things: with the C-word, you don’t know what to say until you go through that process. I get it.
The pandemic made things really challenging because I couldn’t have anybody with me. The lymph node biopsy was the first time I had ever had a true hospital surgery. Pre-cancer, the most I’d had was my wisdom teeth removed under twilight sleep. The aftermath was painful, but it was okay. Being in the hospital with nurses, being put under, the pre-surgery process — I was terrified. I was so scared. I was isolated because I couldn’t have anybody with me. It took three nurses to get a vein for the IV. That was traumatizing because I was getting poked and prodded, I didn’t know what was happening, I was overwhelmed, and then I woke up with a drain tube attached to my armpit. That drain tube was there for about two weeks after the surgery, for fluids from the lymph node biopsy in my right armpit.
The lymph node biopsy determines which lymph node stands the biggest risk of cancer. The day before surgery, I went for a radiation tracer near the melanoma site, the initial tumor, to determine which lymph node had the biggest risk of cancer. That lit up to my right armpit. Then I had the surgery, they removed the lymph node, and I had a drainage tube for about two weeks that was stitched to my armpit for the fluids coming out from the surgery. Thankfully, it was clear; everything was good. I’ve only had one other mole that was higher risk since the initial diagnosis, but it was not pre-cancerous or cancerous. I’ve been very lucky since. Knock on wood.
Living as a melanoma survivor today
The worries and fears I had are definitely still there, especially around checkups. I don’t think this is necessarily a cancer thing, but because the surgery was correlated to cancer, my mind goes there.
When I had the lymph node biopsy, I ended up with some numbness in my right armpit from the nerves. When I talked with other ladies in our support group from Young Adult Survivors United, they said that’s normal after surgery. Even my best friend, who had an ACL reconstruction, still has numbness around her knee. For me, that’s directly correlated to cancer, so when I go to shave, I’m reminded of that surgery. I think, “Oh yeah, that’s a thing. I hate this.” Then I think, “I should get a tattoo in my armpit because I wouldn’t be able to feel it anyway,” because that’s where my weird thoughts go. I have quite a few tattoos; I have one on my chest, and I’m pretty covered.
Certain little things remind me of that diagnosis. I’ll catch a scar, and I’m reminded of those times. It comes and goes. I have periods where I do pretty well and am just going through the motions, and then something will remind me of when I was going through that, or something in the community will bring it up again. I have my ebbs and flows. I don’t want it to take over my life, but it still shaped who I am today. It’s still a huge part of me. I think there needs to be more awareness. Somebody has to be the one to talk about it, and that’s why we’re having this conversation today. I appreciate the opportunity to speak on melanoma and the young adult population.
Finding community and other young adult survivors
I told you how I found out about Young Adult Survivors United through the Pittsburgh Marathon. That’s really what started it. This isn’t just melanoma-specific; it’s for young adults. A lot of the members in the Pittsburgh area and beyond join in virtually. We even have people from out West. Because of that group, I was able to get involved in other organizations targeted to young adults.
I had the opportunity to go to a retreat camp through an organization called True North Treks in the Upper Peninsula of Michigan. It was a retreat camp specifically for melanoma survivors through the Melanoma Research Foundation. It was absolutely incredible. The views were amazing, and I think I have a couple of pictures uploaded from that trip. What made it special was that it was specifically for melanoma survivors. At the time that I went, it was the first time I had ever met any other melanoma survivors.
It was cool — even though cancer sucks and none of us want to go through that — to meet other survivors who can literally understand what you’ve been through.
Fun fact: melanoma can happen in the eye. Ocular melanoma is actually a thing. I didn’t know that until that trip.
My final messages for young adults facing cancer
For the young adult population: when you get hit with cancer, you typically think geriatric adult or pediatrics. Young adult cancer is so unique because this is the time of our lives where we are developing our careers, buying our first homes, getting out of abusive situations, getting married, dating, having kids — and then you find out that you have cancer and it has such a large effect on so many areas of your life. I say support the local organizations that support young adults specifically, because they are, in a way, the most vulnerable. Sometimes you are forced to choose: do I pay for my medical treatment or keep a roof over my head? That’s not an easy decision to go through. Groups like Young Adult Survivors United, the Melanoma Research Foundation, and anything geared toward that specific population are so important to support because they have a direct impact on the livelihood of young adults who have been through cancer.
Get your yearly skin checks. Stay shady, use sunscreen, and be a community. There are so many things happening in this world right now, and when you get hit with a diagnosis, be a support.
A Creative Life, Interrupted: Red’s Experience With Tongue Cancer After Losing 40% of Her Tongue
Working as a wig attendant and makeup artist, Red had just begun embracing her creative dreams with a close-knit theater community when her health took a dramatic turn. She was in the middle of building a life she loved when a small canker sore on her tongue refused to heal. What first seemed ordinary became the start of an experience that would lead to a tongue cancer diagnosis that changed her life, tested her instincts, and forced her to examine her sense of self.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez and Jeff Forslund
As the sore on her tongue stubbornly refused to heal, Red was initially net with medical dismissal but trusted her instincts and pressed her doctor for a referral to a specialist. That one moment of self-advocacy in that first appointment led to a specialist appointment with an ENT where she finally received a frightening diagnosis: stage 3 tongue cancer. Moreover, the news arrived in the midst of a hectic photoshoot.
Rather than yielding to fear, Red channeled her energy into connecting with friends, colleagues, and even cast members at the theater, who were more than happy to support her and lend encouragement. She also found symbolic and creative ways to cope, including naming her cancer “Carl” for privacy and maintaining humor and compassion throughout her experience.
Surgery followed; doctors removed 40 percent of Red’s tongue and performed reconstructive surgery afterwards. Recovery was demanding, involving rigorous procedures to save her speech and swallowing abilities, physical therapy, dietary changes, and pain management. Eventually, she also underwent radiation treatment. The unwavering support of her medical team, family, and fellow artists made a difference throughout her experience. Karaoke nights, theatrical send-offs, and simple acts of care became touchstones of hope and solidarity before surgery and after.
Returning to work after treatment marked a new chapter in Red’s life, highlighting the emotional and psychological adjustments required after surviving tongue cancer and similar kinds of cancer. She emphasizes the critical role of self-advocacy, resilience, and the right to appear and feel confident at every stage, whether through creativity, community, or self-care practices. Red’s tongue cancer experience reminds others that healing is a lived, ongoing process that is personally defined by each patient.
Watch Red’s video and browse the edited transcript of her interview below to learn more about how:
Advocacy is vital: Trust yourself and push for answers if something feels wrong
Creative outlets like makeup can empower recovery and restore confidence after major life changes
The support of community, namely, family, friends, and colleagues, provides essential strength during tough times
Healing is not linear; recovery from cancer includes both physical and emotional milestones
Red’s transformation involved reclaiming her confidence, advocating for herself, and finding a new purpose
Name: Red S.
Age at Diagnosis:
35
Diagnosis:
Tongue Cancer (Squamous Cell Carcinoma of the Tongue)
Staging:
Stage 3
Symptom:
Persistent tongue ulcer that increased in size
Treatments:
Surgeries: partial glossectomy, flap surgery
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with oral cancer, specifically tongue cancer, in 2025.
And I am from all over, but I currently live in Stratford, Ontario, Canada. I am a dual citizen, so I’ve lived all over the US as well as up here in Canada.
Currently, I am a wig attendant as well as a makeup artist with the Stratford Theater Festival. I actually did a career change; before that, I was working in the TV and film industry with a large multimedia company, Disney, for over ten years, working at ABC News, ESPN, Disney Channel, and Disney Junior on the corporate side of things.
I’ve always considered myself to be more of a creative individual. After going through some other hardships, I reevaluated what I wanted to do with my life and realized my passion really is makeup and storytelling, and the way that we use makeup to tell a story. It’s not just a glamorous vanity thing; it gives people so much more than that.
I do glamor makeup, theater makeup, and special effects. I create scars and burns and can recreate all of that. It’s kind of funny that after everything I went through, I now have the best reference photos I could have: my own. It has been a wild journey, and to get this diagnosis right when I finally got to a point in my career where I thought, “I’m here, I’ve made it, this is the dream, I’m living it,” and then cancer showed up, it was a lot.
How cancer arrived in the middle of my dream job
There is never a good time to get cancer. There’s never a perfect schedule where it’s right on time. No one wants that, ever.
It weirdly did the work for me, which I wasn’t expecting, because of the community I was in and the location I was in. I had family support, medical support, and I was able to see specialists very quickly because it is such a rare thing.
I was very lucky. Even by US standards, I probably still would have been waiting much longer. The support from my theater community was something I never anticipated, especially because it was my first season. I had only been working with people for a short time, but when you are doing their wigs and makeup, you work very closely. People rallied behind me, reached out, and sent me so much love and support that I still could probably cry about it.
The hospital bed stretch video that connected me to my crew
Part of our warmups with the crew was stretching our bodies. We were working on Robert Lepage’s Macbeth, set during the biker wars in Quebec, and there are literally motorcycles going around on stage and backstage. We would stretch out our hands, twist, and move as though we were revving a motorcycle to loosen our wrists.
When I was in the hospital, they told me I had to stretch in my hospital bed. I asked my dad to record me doing our “rev the motorcycle” stretch. He thought I was on medication and had no idea what I was doing. Then I got a message from my crew where every single person was doing the same warmup and saying, “Hi, Red, miss you.” It was silly but incredibly memorable and meaningful.
Being a young non-smoker with rare oral or tongue cancer
Oral cancer itself is rare. From what I read, about 1% of annual cancer diagnoses are oral-related, and that includes the whole mouth. Tongue cancer specifically is even rarer. For someone my age who is not a smoker and doesn’t fit the usual risk profile, it’s very unusual.
We don’t know why I got it. It wasn’t HPV-related, it wasn’t smoking-related, and although I have one relative who had cancer in his jaw, that is different. It remains a mystery, and part of why I want to share what’s going on is that it is occurring in younger people.
People need to get checked and tell their dentist if anything seems off. I just had a canker sore I thought wouldn’t go away.
The “canker sore” on my tongue that turned out to be cancer
At the beginning, I noticed a bump on the left side of my tongue, by my teeth, and I kept hitting it. It was really annoying, and I didn’t know why it was happening. I had just accepted the job with Stratford and was still working at Sephora. One of my managers, who was interested in that kind of thing, looked at it and said, “Yeah, that is weird. I don’t know what that is.”
The mouth heals quickly if you burn your tongue or bite it, but this bump wasn’t going away. Months into my job, I realized that now that I was more settled, I needed to do something because it was starting to hurt. I began avoiding certain foods because they hurt to eat. I went to the local hospital in Stratford and, because there was no walk-in clinic, I went to the emergency room. The doctor looked at it and said I had bitten my tongue.
I am not usually confrontational, but something in me pushed back. I told him it had been like that for months, and there was no way this was just a bite. If it were a bite, maybe there was an infection, but it was definitely something more.
He did not seem to like that I pushed back, but he referred me to an ENT specialist.
Getting the biopsy and the phone call that confirmed cancer
The ENT was fantastic. She said we should do a biopsy because something odd was happening, but she kept saying how young I was (I’m in my 30s), so it couldn’t possibly be cancer in her mind. Still, she booked the biopsy.
On the opening night of my musical, Dirty Rotten Scoundrels, I was in the middle of a fashion photo shoot for Pride Month. I was doing hair and makeup for friends of mine, working with photographer Neil Graham, and I knew I had a show later that night. In the middle of the shoot, my doctor called and said, “It is cancer.” I was sitting down, and it still felt like the floor gave out from under me.
Who gets told it’s cancer in the middle of a photo shoot before a show? I had to go back into the shoot knowing this, but in a way it worked out beautifully.
My friends and colleagues were there to comfort me immediately. They asked if I wanted to stop the shoot, and I said no, we needed to keep going.
The emotions that came out in that photo shoot made it really special because we created something beautiful out of something awful.
We nicknamed my cancer “Carl”
On the way back to Stratford, I stopped at a thrift store and picked up a beautiful dress I had been eyeing for the opening night party. I had thought it might be “too much,” but after that phone call, I decided if there was ever a time to be “too much,” it was that night.
I told the people who were at the shoot and my immediate team, but I did not want to throw off opening night for everyone else. They were excited and ready to perform, and cancer had already affected me; I didn’t want it to affect everyone else yet.
We started calling my cancer “Carl,” so we could talk about it in front of others without alarming them. We would say things like, “How’s Carl?” “He’s such a jerk,” or “He’s not so bad today,” as our code.
My 10-hour tongue cancer surgery and flap reconstruction
My surgery was what they call a flap surgery. They removed up to about 40% of my tongue to take out the cancerous area. They made an incision in my neck to remove lymph nodes for testing, and because I was already stage 3 squamous cell carcinoma, the staging was serious.
They also used my own body as a transplant. They took tissue from my arm, along with the veins, and used it to reconstruct my tongue and reattach it to my neck. I now have about 60% of my original tongue left, with taste buds that are slowly coming back.
I learned the hard way that my taste buds had returned when a shot that used to taste like water suddenly burned again.
The surgery feels like something out of science fiction. I had staples running up my neck, wires coming out so they could monitor the tissue, and tubes they plugged in that made ultrasound-like sounds to check blood flow. Hearing that living-tissue sound and realizing, “That’s my tongue,” was surreal.
Walking up from tongue surgery and already speaking
After surgery, I had my arm bandaged, staples in my neck, wires, drains, and an NG tube. The NG tube was actually the most painful part because they placed it on the side of my incision to avoid blocking my airway if the other side swelled. Every time I swallowed, it hit the incision, and the sharp pain became all I could focus on.
They told me I might need a tracheostomy and that I would not be able to speak for a while. I worked with a speech pathologist and had a communication board ready. But when I woke up from surgery, I saw my parents and said, “Mom.” Everyone was shocked that I was speaking clearly enough to be understood.
We still don’t know why that happened. I joke that my own body tried to shut me up, and even that didn’t work. I have always been a yapper, and apparently, even major tongue surgery couldn’t stop that.
Learning to swallow again and choosing radiation
The first focus after surgery was on swallowing. To get the NG tube out, I had to prove I could swallow, but swallowing with the tube in hurt so much that it became a catch-22. My team realized the tube was holding me back, cut the sutures from my nose, and pulled it out, which was not an experience I would recommend.
We started with liquids, then purees, soups, and protein shakes, and I had to relearn biting and chewing. I did tongue exercises with my speech pathologist focused on mobility and strength, and I got up to walk even though I felt like Frankenstein’s monster after a ten-hour surgery. I still do physio for my shoulder because my arm had to stay in one position for so long.
They removed 51 lymph nodes, and one tested positive for cancer. My team explained that while the amount was small, tongue cancers can move quickly. The options were to wait and risk it spreading or to do 30 sessions of radiation, Monday through Friday.
I told my doctor, “Kill it with fire,” and we moved ahead with radiation, even though they warned it would be hard and would affect my mouth and swallowing.
Daily radiation, crushing fatigue, and singing karaoke again
For radiation, I drove from Stratford to London, Ontario, Monday through Friday, a little over an hour each way, for about a 15-minute session. The treatment itself feels like getting an X-ray; the hard part is the cumulative side effects afterward. The team was wonderful about playing music for me; sometimes spa-like Zen music, sometimes upbeat, depending on my mood.
The fatigue hit like a wall. I’m someone who normally operates on very little sleep, so suddenly sleeping a full eight hours was wild. My tongue swelled, and it still does on some days. There are days, like today, that are not my best because of the swelling, but then there are days where I do big things again, like singing karaoke for the first time since surgery.
Before surgery, I hosted a big karaoke night called “Red Sing Out.” I invited people casually, thinking only my small team would show up, and we didn’t even have a real karaoke machine, just music and phones with lyrics.
Instead, stars from the shows I worked on showed up, and they could actually sing, which is so unfair at karaoke. We had a tongue-shaped cake that said “Goodbye, cancer,” and we all cut into it together. I opened the night with “I Will Survive,” and we all sang it together again to close the night.
Returning to the theater after tongue cancer surgery
Everyone has their own timeline. If I had not come back for the rest of the season, no one would have faulted me. But I had worked so hard to get there, and the community and the work meant so much to me that coming back gave me something to strive for.
I focused on exercises, stretching, rebuilding stamina, and being physically able to do a fast-moving job with stairs, crossovers, and quick changes. The part I didn’t anticipate was the emotional impact of coming back to the same shows after being so changed. Shows like Anne of Green Gables, where a character dies in a heartbreaking scene, suddenly hit me much harder, even though I’d seen them many times.
Almost everyone at the theater was incredibly supportive. One person treated it as though I had been on vacation and made comments like, “Did you enjoy your time off?” That was frustrating, but some people simply don’t understand.
The positive support far outweighed that; performers and crew clapped for me, hugged me, and shared their own stories of surgery and illness.
Learning to love my scars and advocate for my body
Some people don’t know how to handle someone going through hardship. One colleague would stare at my scars, make faces, and say they were gross. I like my scars; they tell a story and remind me of what I have been through and how I got past it. It is all about perspective.
I have been through trauma before cancer; I am part of the MeToo movement and an assault survivor. Therapy helped me a lot, and I genuinely believe everyone, especially people dealing with cancer, can benefit from therapy. Both experiences involve relearning your body, dealing with inappropriate questions like “What did you do for this to happen?” and refusing to accept victim-blaming.
Making jokes is how I cope, but that doesn’t mean it’s right for everyone. For me, working toward coming back to the work I love, helping tell stories, and telling my own story helps me process everything.
What I want others to know
There are so many big and small moments that come from a journey like this, and there is no wrong way to handle it as long as you are not hurting yourself or others.
For some, putting on makeup again feels wild; for me, it was part of feeling like myself. I have a photo where my arm is wrapped, I’m wearing a turban to protect my incision and cover hair loss, and I’m in makeup. People sometimes assume hats always mean chemo, but there are many reasons people wear them.
I’m working on projects to help people get the hats they need and to get involved with organizations that help patients with makeup and skincare. Sometimes what helps you feel your strongest is as simple as a moisturizer that makes your skin less dry or a red lip that makes you feel like yourself. Other times, it’s cosplay, horror, or body gore looks that help someone reclaim their body.
As a makeup artist, I try to make beauty tools as accessible as possible. Before my surgery, I taught at a school for the blind because people often assume blind people can’t wear makeup, but they absolutely can if they want to. The same goes for any patient: whatever you need to feel better in your own skin and stronger in your journey, if there is any way I can help, I want to help.
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective
Cardia cancer, a rare and aggressive cancer at the junction of the stomach and esophagus, fundamentally changed Luwen’s day-to-day life, career aspirations, and connection to her body and community. Diagnosed in Paris in December 2024 after months of misattributed symptoms, her experience reveals the often-overlooked complexity and adversity surrounding late-stage cancer diagnosis.
Interviewed by: Keshia Rice Edited by: Chris Sanchez
Immediately preceding her diagnosis, Luwen balanced the challenge of beginning her career in theater with daunting physical symptoms, including persistent back pain, chest burning, and a profound sense of unease. As her symptoms intensified, she underwent multiple consultations and procedures. The French healthcare system posed its own hurdles, involving both public and private pathways, and required out-of-pocket payments until her diagnosis of cardia cancer, a kind of stomach cancer, categorized her illness as a long-term condition eligible for government coverage.
The emotional toll of stage 4 cardia cancer was magnified by isolation, as Luwen navigated both the diagnostic process and her mother’s concurrent battle with breast cancer, while extended family remained abroad. Self-advocacy proved essential; despite repeated dismissals from medical professionals and friends attributing her symptoms to stress, she persisted, ultimately insisting on crucial tests that revealed the true nature of her illness.
Treatment transformed every aspect of Luwen’s life. Eight months of chemotherapy and immunotherapy followed by a major surgical resection altered her physical relationship with food and her body, requiring new dietary habits and a lasting regimen of medication. The physical challenges were matched by emotional transformation; what mattered shifted from professional achievement to peace and well-being.
For others living through stage 4 cardia cancer, Luwen’s story offers important lessons: trust in oneself as the expert of one’s body, the necessity of persistence within medical systems, and the possibility of redefining one’s priorities after illness. Her experience is a testament to the power of self-advocacy and adaptability, and to the meaningful changes that can result from even the most difficult diagnoses.
Watch Luwen’s video above and read through her edited interview transcript below. Both will provide insights into why and how:
Advocacy matters: being persistent to get the correct diagnosis is vital, especially when symptoms are minimized
You are the real expert on symptoms; trust yourself when you know something’s wrong
Major illness like cancer often forces patients to reconsider what matters most in life
Support networks such as family, friends, and therapists, help patients endure treatment and uncertainty
Transformation is possible: Luwen’s priorities shifted toward peace, self-care, and authentic living
Name: Luwen S.
Diagnosis:
Cardia Cancer
Age at Diagnosis:
25
Staging:
Stage 4
Symptoms:
Backaches
Heartburn and acid reflux resulting in vomiting bile
Fainting spell after eating
Fatigue
Inability to swallow
Treatments:
Chemotherapy
Immunotherapy
Surgeries: esophagectomy, partial gastrectomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed in December 2024 with stage 4 cardia cancer. The cardia is basically the junction between the esophagus and the stomach. I was diagnosed in Paris, and I live in Paris.
I had just finished university and was getting my first job in theater. I’ve always had an interest in theater, and I was really happy because I was working on this big production. I remember it because my cancer basically started to grow at the same time that I got my job. So, during the summer of 2024, I was very stressed. I was trying to find a job after my internship and couldn’t find one. As I interviewed for many positions and eventually got the job I wanted, my symptoms worsened.
Alongside this, my family lived in China, and my mother was diagnosed with breast cancer in November, a month before my own diagnosis. I did a lot of back-and-forth travel between China and France, while my grandparents lived in America, so I was used to traveling. But, yeah, that was pretty much my life before I got cancer.
My initial symptoms
It was really strange because I started with back pain. Basically, I had metastasis along the spine, and those were my first symptoms in the summer of 2024. It started in June. I remember this because I was at a Buddhist retreat, sitting cross-legged all day for a week, so I thought it was the retreat that had caused the pain. I started to take ibuprofen and paracetamol, hoping to ease the pain, but it didn’t help.
In August, I developed chest burn, which I didn’t know was acid reflux at the time, and which I later learned to name. That was my mistake: I called it acid reflux, so the doctors just stuck with that diagnosis, saying there was nothing else wrong. I was misdiagnosed for six months, going from doctor to doctor, always being told I had nothing. All the while, my back pain and chest burn continued to worsen.
I remember once in September, it was the first real alarm in my head. I woke from a dream where I was on a sterilized hospital table, doctors trying to get something out of my stomach, and they couldn’t. I woke up to realize the pain wasn’t a dream; it was very real. That’s when I realized I really needed to see a gastroenterologist, but the first one I saw was really bad and misdiagnosed me.
Navigating the French healthcare system
In France, you typically have a primary physician. I saw mine at the end of August, after I’d started my new job and when my symptoms had worsened. One night, I had a really bad hunger pain in my stomach, and I knew that eating would ease it. So, I went to eat, then fainted, which had never happened to me before. I was lucky I didn’t hurt myself.
After that, I saw my primary care doctor, who said I needed a physiotherapist for my back, and that the chest burn (acid reflux) could wait until November for a gastroenterologist appointment. So, I started physiotherapy, which didn’t help. In September, after continuing to wake in pain, I realized I couldn’t wait any longer.
France has an app for scheduling doctor appointments, but it’s hard to know which doctors are good; you have to check reviews online or hear about them through friends. No one around me knew a reputable gastroenterologist, so I chose from the limited, less-recommended options available on short notice. Appointments with specialists are particularly hard to get.
There’s public healthcare, where you don’t pay out of pocket, and private practitioners, who set their own rates. I paid my private gastroenterologist €80 per visit, three times total during this process. I also returned to my primary care doctor about ten times in three or four months, but he couldn’t figure out what was wrong. I underwent many scans and imaging, some of which I had to pay for, depending on whether it was public or private healthcare.
I was really lucky that after my diagnosis, everything switched to 100% public healthcare. I didn’t have to pay for my treatment. But during the diagnosis period, I spent about €2,000 to €3,000 on doctors and scans. In France, once you’re categorized as having a long-term disease, anything related to it is covered by the government. So, after diagnosis, cancer care was paid for.
I processed everything while I was alone
You have to keep in mind that I was alone in Paris. My parents were in China, and my grandparents were in America.
I was navigating all of this by myself, getting more stressed with my job, when I got the news that my mother was also sick. It was a lot to process alone.
It was weird, trying to get an answer while everyone around me kept saying, “You’re insane, you’re making this up, it’s just stress.” I heard that so many times that eventually, I began to believe it myself, despite knowing deep down it was more than stress.
I even started doubting my own symptoms because of all the repeated dismissals from those around me.
My body broke down, and I doubted myself
At work, my boss was running a show and an exhibition, and I was supposed to go to Marseille for two weeks for my job. I stayed for just two days before my body gave out.
I had driven myself to the breaking point. Everything happened so quickly that, only in January, right before starting treatment and after returning from Christmas holidays, did I realize just how hard this all had been to take on alone.
I don’t think I trust the health system. Even though I am cured, thankfully, it’s hard for me to see a doctor and believe they are telling me the whole truth or getting to the root cause. In my case, my gastroenterologist just treated the symptoms (acid reflux) with omeprazole, which masked the symptoms and delayed realizing the underlying (cancer) problem.
My persistence led to second opinions and the key endoscopy
When my body finally broke down, I was sent back to Paris and put on sick leave. That week, I saw about four gastroenterologists, but for some reason, none wanted to give me an endoscopy. I had known since October that I needed one, but I wasn’t taken seriously.
I finally texted a friend, who knew a really good private gastroenterologist. I emailed him all my symptoms on a Sunday night and was lucky; he let me come in the next day. I decided I wouldn’t leave without an endoscopy scheduled. I had to exaggerate my symptoms, saying I couldn’t swallow water or eat (even though I could still drink), just to be taken seriously.
At my endoscopy, the doctor said, “Don’t worry, it’s probably nothing; we’ll just give you more omeprazole.” I insisted that omeprazole hadn’t helped me. He told me he’d call after the procedure to say everything was fine, but when I woke up, he was there in person. He said, “Do you have a minute? I have bad news for you.”
Later, he returned to my room and told me, “You have a lesion; it also has an ulcer, and it might be cancerous.” That was the first time I heard the word cancer regarding myself. I felt so relieved: “Oh my God, I’m not crazy. I’m not making things up.”
From there, everything moved very quickly. Doctors aren’t technically allowed to tell you outright that you have cancer, so he just said, “It might be cancerous.” But he made sure all tests happened within a week, which is rare for the French system. My endoscopy was on December 5th; my first meeting with my oncologist was on December 16th. The weekend before that, my friend from the UK came to stay with me because I was so stressed.
When I was finally able to process information, I realized how serious this was: scans, blood tests, a glowing spot in my stomach. I didn’t even know what cardia was until I looked it up. Everything fell into place piece by piece.
My treatment experience
It got quite bad before I began treatment. I was in constant pain, couldn’t eat or drink, and was losing weight week by week. I don’t like to say I stared death in the face, but it did feel close. During this time, after my diagnosis and before starting treatment, I returned to China to be with my mother, who had just started her own breast cancer treatment.
Having my mother go through chemo ahead of me meant I had someone who understood each step. I knew how to pack a chemo bag, what to expect, and how symptoms might develop. I was relieved to learn I wouldn’t lose my hair.
My first chemo was the worst. I was so sick I could barely get out of bed; I was overcome with nausea. Fortunately, my body responded well to immunotherapy. By the second chemo, I could almost eat normally again. By the third, I had regained some strength; by the fourth, scans showed the metastasis in my spine was completely gone. I had chemo and immunotherapy for eight months, and the cancer was gone in six months.
I had surgery, and how I recovered from it
After eight months of chemo, I was cancer-free, but we weren’t sure it was totally gone. Surgery (esophagectomy) was needed to remove the cardia and ensure there were negative margins. This meant removing most of my esophagus and a third of my stomach.
Now, my stomach is higher, and I don’t have an esophagus. Food falls directly into my stomach and then into my intestines.
Learning how to eat after that is difficult. I had surgery on September 8th, and as of now, I’m still recovering. I’ve lost about 10 kilos (~22 lbs). Eating requires extra care; monitoring oil, sugar, and food quantities to avoid dumping syndrome, which causes stomach pain, nausea, and diarrhea when food moves too fast into the small intestine.
Despite losing weight and always having had a sweet tooth, I have to be careful now. The way my body processes food has changed, requiring lifelong meds for acid reflux. It’s challenging, but it pushes me to adopt healthier habits. My life, needs, and desires have all changed.
Moving forward, and my new priorities
Cancer has taken away a lot, but weirdly, it has given me a lot too.
I used to work as a theater producer, but lost the desire to continue due to the stress and ego management. What I want now is to be happy, peaceful, and healthy. It’s no longer about pleasing others; it’s about making myself feel good and putting myself first.
I am not on maintenance therapy; all treatment ended before my surgery. Now, I just get regular scans every three months, then every five, then yearly.
It is behind me in the sense that I don’t want to think about it, but surveillance and the reality of stage 4 cancer mean you never quite feel “cured.”
My biggest fear today is that what comes back could be worse: pancreatic, stomach, or lung cancer. The word “cancer” will always be a part of my life now.
How I coped with the hardest moments
During treatment, I often lost my mind. My mother came back to France to care for me while she was ill, and I cared for her too. Once, she had a kidney failure episode, and I rushed her to the emergency room; if I’d been 20 minutes later, she could have died. That was on Mother’s Day.
What got me through was calling my best friend to cry and having therapy. I was surrounded by personal and healthcare therapists.
Ultimately, it was the mentality of, “I don’t get a choice; I just have to keep going. You can cry all you want, but you have to do the next round of chemo.”
I was lucky that my treatment worked, which made it a little easier to endure.
Lessons for young cancer patients
I was 25 when diagnosed. Having cancer at a young age is often dismissed; people expect youth and health to go together. Being young and female, women’s pain is often minimized, so I had to exaggerate symptoms to be taken seriously. My oncologist told me, “You’re lucky; apart from the cancer, you are otherwise very healthy because you are young.”
Most patients I saw during chemo were in their forties or older. But statistics show more young people getting cancer, even if it’s still rare. The main thing I would tell other young people: you know your body best. If you know something is wrong, trust yourself.
Cancer taught me how to advocate for myself, how to say, “No, you are wrong; I am in pain.” If a doctor doesn’t listen, see someone else until you get an answer that satisfies you.
I didn’t really connect with any other young people with cancer at the same time. I mostly navigated it by myself, though I had friends, family, and a lot of therapists in my life. Illness sheds false friendships, but it also brings new, real ones closer.
Healing, recovery, and looking forward
Words like “recovery” and “healing” have new meaning for me now; they exist where before they didn’t.
When you’re young, you’re focused on chasing the next thing; when you fall off that hamster wheel, you realize you must learn a new way forward, and it isn’t just about health. It’s about building a life again after illness.
I hope I get to do the job I want; publishing and writing, maybe publishing a book someday. I pay more attention now to health, food, and exercise. It’s scary to start over, but exciting. There are so many new opportunities and people to meet.
Statistics were not on my side. My oncologist told me that if immunotherapy hadn’t been available, I would have had only 4-6 months to live. That made me realize how far medicine has come. I really did beat the odds.
Still, I feel I’m on borrowed time and need to enjoy it fully while I have it.
My final reflections
I survived; long story short, I survived. It was not easy, and I’m very tired.
I tell my best friend that if cancer does return, I’m not sure I want to fight it again, but we’ll see when we get there.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
Finding Cancer by Chance: Cyndi’s Papillary Thyroid Cancer Story
Cyndi’s papillary thyroid cancer experience began with no warning signs. Her life revolved around motherhood, theater, and artistic expression. During a routine endocrine visit for unrelated thyroid level checks, her doctor noticed a nodule. Cyndi had always attributed the fullness in her neck to her natural features, never suspecting it could be cancer. A chief radiologist saw reason for concern, and a thorough surgeon conducted further scans and a biopsy.
Interviewed by: Carly Knowlton Edited by: Chris Sanchez
The diagnosis of papillary thyroid carcinoma came as a shock. Genetics revealed a RAS mutation, and Cyndi also found out that her left thyroid lobe housed both cancerous and pre-cancerous nodules. Surgery, including a central neck dissection, set off a storm of emotions. She faced a difficult initial recovery, the unexpected loss of her voice, and adjusting to a new appearance.
The months after surgery challenged Cyndi’s sense of independence, body image, and leadership. She found transitioning to being a patient the hardest part. Professional support, tailored endocrinology care, and connecting with another patient who also had surgery the same day became anchors.
Today, Cyndi’s papillary thyroid cancer experience has redefined her life rhythms. She takes thyroid medication, celebrates improved energy, and has reprioritized presence for her son and students. She wants the world to know that thyroid cancer is not truly ‘the good cancer,’ as it is often known; it leaves scars both visible and invisible. She reflects, “Thyroid cancer is often seen as the ‘good cancer,’ but the experience isn’t easy.”
Watch Cyndi’s video and read the edited transcript of her interview below. You’ll delve into how:
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with stage one papillary thyroid carcinoma in May 2025.
I am most passionate about my son, but I am also passionate about my work. I’m a theater director and playwright. That is what I do outside of being a mom.
For fun, I like attending theater and making theater fun.
If my friends were to describe me, they would say I’m definitely creative, original, unique, and optimistic.
No red flags: my cancer was discovered incidentally
Honestly, there were no red flags. It was totally caught incidentally.
I had gone to an endocrinologist for something I thought was unrelated. I just needed my thyroid levels checked. She checked them, but then said, “No, you have a pretty big nodule right there.” I thought that was just my face or my neck because I’d had it for such a long time. I had no idea there was anything abnormal. Looking back at photos, I realized there was a pretty big nodule there.
She had me go for an ultrasound, and the scan actually came back benign because it was read by AI. The report even said “generated by AI.” My husband works in healthcare, saw that, and suggested getting a second opinion. He showed it to his friend, the chief of radiology at a major hospital. That person said, “No, she should definitely get a second opinion and see a surgeon.” So, I saw the surgeon, and within a few minutes, he said, “Nope, you definitely need a biopsy,” and threw out the first ultrasound report. He did an ultrasound and a biopsy right in that exam room. Two weeks later, I received the pathology, which felt like a million years waiting.
My biopsy
Two weeks later, the results came back with a RAS mutation, which is usually only found in anything follicular in nature. It also came back as having nuclear changes and positive gene expression, meaning it was acting like cancer, but it was confusing. It wasn’t acting exactly like follicular, so I thought it was a follicular variant papillary. I was wrong.
My left lobe was so big it had two nodules. One was cancerous, the other was pre-cancer. Because it was so big, it was crushing my parathyroid and pressing against several lymph nodes, so they took out all the surrounding lymph nodes. I ended up with a central neck dissection and a parathyroid transplant.
I had clear margins
I waited another two weeks for the pathology to confirm that it was papillary. When I woke up, I learned there were two nodules. I actually saw it on my patient portal before I was told. I found out at 5 a.m. because I was checking the portal hourly, trying to figure out what was going on. I tapped my husband and said, “By the way, it’s papillary.” He asked what I meant, and I said, “It’s right here. I had cancer and now it’s gone.”
All the notes said my margins were clear, so I was focused on the fact that I wouldn’t need the other side taken out. I was nervous about the possibility of needing a second surgery, but my margins were clear.
My doctor called that same day. I said, “Yeah, I already know.” He said, “I have somewhat good news.” I said, “Is it that I had cancer and now I don’t?” He asked how I knew, and I said I saw it on my portal. That’s the danger of patients having instant access to their records.
My surgery in detail
This is how my surgery went.
Preparing was standard, like preparing for any surgery, with all the checkups and medical tests. The surgery experience itself was not bad or traumatizing. I arrived at the hospital around 10 a.m. for a noon surgery. The staff was pleasant, and nothing about the process was negative. I walked into the operating room, greeted everyone, and joked, “Just make this part go away.” The next thing I remember, I was waking up.
When I woke up after surgery in the hospital, I wasn’t able to move. I legitimately thought I was paralyzed, but it turns out I was not. They reassured me that my head was just immobilized the way they wrapped me. I have not seen any other pictures of people being wrapped that way after surgery. I wasn’t expecting that. It felt very hard to breathe and very hard to move. My heart rate was really high when I woke up. I was very tachycardic, and I think I was more distracted by that because they kept saying, “Oh, your heart rate is high, your heart rate is high, it’s not coming down.” I was just very distracted by that as well.
When I woke up, I again thought I was paralyzed and unable to breathe, but that was not true. My doctor was calm and patient; I really lucked out with finding him. Due to my tachycardia, I wasn’t allowed out of bed, so going to the bathroom was an ordeal. Eventually, I learned to unhook myself, but I was scolded by the nurse: “You will not unhook yourself!” After that, I called for help each time I had to go. I stayed in the hospital one night, and though they offered more time, I was eager to go home.
Early days at home: my emotional adjustment
I made friends with the woman in the next bed and had a good conversation, even though my voice sounded like Minnie Mouse for a while, since my vocal cords had been moved during surgery.
They wrapped me again before I left, looking much like a mummy; something I haven’t seen in other surgery pictures. Seeing my scar for the first time at home was emotionally difficult; it was a hard day where everything hit me all at once. My heart rate was still high, and I was troubled by the loss of my voice. Compelling Quote: “Seeing my scar for the first time at home was emotionally difficult; it was a hard day where everything hit me all at once.”
Accepting change, my recovery timeline, and lasting effects
I had to accept how I look now, and given my performance background, growing up where appearance matters, this was hard.
Recovery took about two months before I stopped noticing the scar at all, though if I lie down the wrong way, I still feel it. Swallowing is when I feel scar tissue the most.
The importance of support and finding the right community
My advice for someone going through this surgery is to find someone who really understands.
I connected through a Facebook thyroid support group with someone who had the same surgery date, and we became each other’s support through everything.
Her outcome was different. She needed a second surgery and radioactive iodine. But our connection helped us both.
It’s best to avoid general cancer support groups; thyroid cancer is in its own unique category. It’s not less traumatic just because it’s called the ‘good cancer.’ Many survivors deal with lingering health issues, and I see the world more patiently now as a result.
Adjusting to medication
I was actually thankful to go on medication because I wanted to feel like myself again.
It took several endocrinologist visits to get complete testing. Many doctors only checked my level of thyroid-stimulating hormone or TSH, and not the levels of T3 and T4, which are hormones the thyroid gland produces.
My current endocrinologist tested everything and found my T3 was off. Starting thyroid meds helped, and now I feel like myself again.
If I eat too close to taking my medication, I feel different.
Thyroid cancer’s impact on me
The experience made me more present in everything in my life, especially for my son and my students. I was always overbooked and overstimulated before. My experience forced me to reprioritize and slow down.
The initial discovery of the nodule was the hardest part for me, since it was my first medical issue and required surrendering control. I’m used to being in leadership roles and making decisions. But cancer means letting others take over, which was tough. Adjusting to being a patient was the hardest part, but I’ve now accepted that regular doctor’s visits are my new normal.
Thyroid cancer is often seen as the ‘good cancer,’ but the experience is not easy. There are no walks or marches for thyroid cancer like other cancers, and it’s often seen dismissively by others and even doctors.
Survivor’s guilt is real, and just because papillary is the most common, that doesn’t mean it can’t become serious. I’ve seen cases that spread and required lifelong oxygen or tracheostomies. I was fortunate mine was caught early, but others aren’t as lucky.
I’m now going to be monitored every three months for the first year or two, then every six months, and eventually annually. I’m a little anxious that my surgeon might retire someday since I’ve become so comfortable with him.
What I want others to know
I hope sharing my story brings more awareness and encourages others to think twice about minimizing thyroid cancer as ‘the good cancer.’
