Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer
Allison describes herself as outgoing, energetic, and always on the move, so when back pain began interrupting her workouts and daily activities in late 2022, cancer wasn’t even on her radar, let along stage 4 lung cancer (ALK positive). She pushed through months of pain, assuming it was a muscular issue, until one night in May 2023, when her husband had to carry her to the bathroom. That moment shifted everything.
After urgent care scans revealed spinal lesions, Allison’s medical background helped her piece together what was happening before doctors even confirmed it. Within weeks, she learned she had stage 4 ALK+ lung cancer, a diagnosis that felt surreal for someone who never smoked, lived a healthy lifestyle, and was deeply engaged in her family and community. The shock was intense, but Allison quickly realized that information, self-advocacy, and support would be key to moving forward.
Once biomarker testing identified her ALK mutation, she started an oral targeted therapy. The results were dramatic. Within a week, Allison’s pain diminished, and she was able to sleep comfortably again. However, treatment wasn’t without hurdles. She dealt with side effects like a severe rash, high cholesterol, neuropathy, and swelling, but she leaned on her medical team, expert consultations, and peer support groups to find ways to manage. Alongside medication, she underwent radiation to stabilize her femur and strengthen her bones against further damage.
Throughout her experience, Allison has emphasized the importance of self-advocacy. She highlights the importance of asking questions, seeking second opinions, and bringing ideas to doctors, especially since rare mutations like ALK require specialized expertise. She continues to work closely with her local care team and renowned experts to explore treatment strategies, including potential clinical trials and even surgical removal of her primary tumor.
Living with stage 4 ALK-positive lung cancer has changed Allison’s perspective. She now plans life in 90-day increments between scans, while still looking ahead to milestones with her kids and future adventures. Although the unknowns remain challenging, Allison focuses on hope, community, and joy. She encourages others to face the light, believe in progress, and remember that anyone with lungs can get lung cancer. Her message is one of resilience, empowerment, and choosing to live fully while navigating life with cancer.
Watch Allison’s video to find out more about her story:
How back pain turned out to be a sign of stage 4 ALK-positive lung cancer
Why never smoking didn’t protect Allison from a lung cancer diagnosis
The targeted therapy that brought her relief within just one week
How self-advocacy shaped her care and treatment decisions
The hope and positivity that guide her every step forward
Biomarkers and Targeted Therapy: How Lung Cancer is Treated Today
Name: Allison Z.
Age of Diagnosis:
45
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
ALK
Symptom:
Severe back pain
Treatments:
Targeted therapy: ALK inhibitors
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.
How Faith Sustains Maria Through Incurable Stage 4 Stomach Cancer
Maria’s life changed dramatically in 2021 when what she thought was a simple stomach issue turned out to be stage 4 stomach cancer. She was an energetic, vibrant former model and devoted mom, busy moving during the pandemic. Her initial symptom seemed minor, but rapid, unexplained weight loss, fatigue, and vomiting pushed her to seek urgent care. An emergency endoscopy revealed something far more serious.
From that shocking diagnosis onward, Maria faced the disease on multiple fronts — physically, mentally, emotionally, and spiritually. She leaned deeply on her faith, her church community, and her close-knit family. Prayer became a daily anchor, not just for comfort but as a source of strength and hope. She joined her church’s prayer team, finding meaning in supporting others even as she navigated her illness.
Physically, Maria stayed active even on her weakest days. She walked on a treadmill, sang, and did small acts that made her feel good because they reminded her she was still living. She embraced a healthier diet, adapted her routines, and refused to let cancer completely define her daily life.
Medically, Maria’s path was complex. After initial chemotherapy, she underwent laparoscopic surgery at Memorial Sloan Kettering, which removed the tumors blocking her digestion while preserving her stomach. For a time, things looked promising. But multiple recurrences brought more chemotherapy, changes in treatment, and targeted radiation. She sought second opinions at top cancer centers, navigated genetic testing, and made thoughtful decisions about her care, always emphasizing self-advocacy.
Spiritually, Maria experienced a transformation. Before her diagnosis, she wasn’t a particularly spiritual person, but cancer shifted her perspective. She says faith not only changed her outlook but also helped her body heal. She credits her medical team, prayer, and staying active for getting her to where she is now: living without current signs of active cancer, with only a small area of uncertainty that doctors are monitoring closely.
Maria is honest about the ongoing challenges, like fatigue, physical limitations, and the ever-present fear of recurrence. However, she emphasizes the importance of hope, gratitude, and the power of community. Her advice is to stay engaged in life, ask questions, and take an active role in your care. “Hope is what keeps us going,” she says, and her story proves it.
Watch Maria’s video to know more about her story:
Maria thought it was just an upset stomach until the endoscopy changed everything
Why staying active even on her weakest days became her lifeline
How faith transformed her cancer experience in ways she never imagined
The self-advocacy lessons Maria wants every patient to know
How prayer and worship gave her hope despite incurable stomach cancer
Name:
Maria C.
Age at Diagnosis:
50
Diagnosis:
Stomach Cancer
Staging:
Stage 4
Symptoms:
Rapid weight loss
Fatigue
Inability to hold food down
Treatments:
Chemotherapy
Surgery: robotic distal gastrectomy
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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
Symptoms: None; found during the evaluation process for kidney donation Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation ...
How Flu-Like Symptoms Led to Megan’s Stage 4 Melanoma Diagnosis
Megan’s road to stage 4 melanoma began in 2018, when she spotted a new mole near her neck and face. A dermatologist confirmed it was melanoma, stage 1A. She had two surgeries: first to remove the mole and any lingering cancer cells, and another for reconstructive purposes. With no follow-up treatment recommended, she kept up with regular skin checks and assumed the risk of recurrence was low.
Years later, flu-like symptoms over the holidays turned into severe chest pain. An X-ray revealed a collapsed lung. After tests, doctors confirmed the melanoma had returned — this time as stage 4 melanoma in her lung. Megan was shocked, especially since her lymph nodes were clear. But she quickly found a supportive care team and even sought a second opinion at Moffitt Cancer Center to ensure she was on the right track.
Megan’s first treatment was immunotherapy, which didn’t stop the tumor’s rapid growth. At one point, the tumor reached 26 cm, causing extreme pain and breathing problems. Because she was BRAF positive, Megan started targeted therapy pills. One drug didn’t work well, but another produced almost instant relief and significantly shrank the tumor. This allowed for surgery in January 2024, followed by radiation for two small recurrences. (Editor’s Note: According to the Johns Hopkins Medicine website, BRAF is a gene found on chromosome seven that encodes a protein also called BRAF. A BRAF mutation is a spontaneous change in the BRAF gene that makes it work incorrectly, but not all mutations in BRAF cause cancer.)
Life with stage 4 melanoma has changed Megan’s perspective on health, priorities, and community. Side effects from long-term treatment include fatigue, occasional body aches, and digestive issues, but she’s learned to manage them. She’s also navigated deeply personal losses, like the likelihood of not having children, something never discussed with her doctors early on.
Megan now focuses on nourishing food, meaningful connections, and work that energizes her. She’s active in melanoma support groups, sharing her experience to help others feel less alone. She emphasizes the importance of early detection, advocating for skin checks, sun safety, and rejecting harmful beauty standards leading to risky procedures like tanning.
Megan’s story is one of resilience as she chooses to live fully, connect deeply, and help others navigate the complicated emotional and physical realities of survivorship. Her authenticity, advocacy, and openness make her a voice of hope for anyone touched by cancer.
Watch Megan’s video to find out more about her story:
How a single mole changed Megan’s life forever
The shocking way her melanoma returned years later
Why one pill changed everything
The part of cancer care no one told her about
Megan’s heartfelt advice on health and self-acceptance
Name: Megan S.
Age at Diagnosis:
28
Diagnosis:
Melanoma
Staging:
Stage 1A (2018); Stage 4 (2023)
Symptoms:
New mole
Cough
Wheezing
Chest pain
Back pain
Treatments:
Surgeries: mole excision, reconstructive surgery, thoracic surgery
Immunotherapy
Targeted therapy: BRAF inhibitors, MEK inhibitors
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.
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
Decades of Unanswered Symptoms Finally Lead to Michelle’s Stage 1 Papillary Thyroid Cancer Diagnosis
Diagnosed with stage 1 papillary thyroid cancer at 39, Michelle had already spent decades dealing with unexplained health problems: mood swings, extreme weight changes, painful periods, digestive issues, anxiety, and crushing fatigue. For years, she was dismissed, being told that they were all in her head or to diet and exercise more. In reality, her body had been sending warning signs that no one connected to her thyroid.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
When a lump in her clavicle appeared, Michelle pushed for answers despite being told it was “nothing.” She finally insisted on an ultrasound, which led to a biopsy and the diagnosis. What followed was a crash course in papillary thyroid cancer, a disease she didn’t even know existed.
Surgery was urgent, but Michelle refused the first surgeon who wouldn’t prioritize preserving her voice. Instead, she found a skilled doctor who discovered that the tumor had wrapped around her vocal cords and carotid artery. Choosing to go with that doctor likely saved her voice and, possibly, her life.
Treatment didn’t end there: Michelle had another surgery, radioactive iodine therapy, lymph node removals, countless scans, and eventually ethanol ablation for a new tumor. Alongside the physical toll came the emotional one. Michelle was told papillary thyroid cancer was the “good cancer” and was also discouraged from even calling herself a cancer patient. Without support groups or resources, she felt silenced, on top of dealing with chronic tall cell cancer, which still lives in her neck and requires constant monitoring.
Michelle’s advocacy now is rooted in what she wishes she’d known: “Check your neck.” She urges anyone, especially women with unexplained hormonal, menstrual, or weight issues, to demand a full thyroid panel. If a doctor won’t listen, find one who will. She knows firsthand how exhausting it can be to keep pushing, but she’s living proof that persistence matters.
Michelle also speaks openly about the mental health impact of cancer — how fear can linger long after treatment, how years of being dismissed or not taken seriously by doctors can affect your sense of self, and how finding the right balance between wellness and joy is key. She’s reclaimed her body, her career, and her voice, both literally and figuratively. And she’s determined to make sure other thyroid cancer patients are recognized, respected, and heard.
Watch Michelle’s video to find out more about her story:
The lump everyone dismissed and why she kept pushing for answers.
What papillary thyroid cancer really feels like to live with.
The comment that made her walk out of a surgeon’s office.
How years of unexplained symptoms finally made sense.
Why self-advocacy is the reason she still has her voice.
Name: Michelle L.
Age at Diagnosis:
39
Diagnosis:
Papillary Thyroid Cancer
Staging:
Stage 1
Symptoms:
Hormonal imbalances beginning around age 10
Severe mood swings and depression
Unexplained weight gain and weight loss, no control over fluctuations
Chronic digestive issues: constipation, bloating, distended stomach, general digestive discomfort
Frequent illness and weakened immune system
Painful and irregular periods
Anxiety and insomnia
Persistent fatigue and low energy
Noticeable lump in the neck, initially dismissed as swollen gland
Difficulty singing
Shortness of breath from minimal exertion
Physical weakness
Pain radiating down the arm
Loss or change of voice
Hormonal imbalance symptoms intensifying before diagnosis
Treatments:
Surgeries: lymphadenectomy, total thyroidectomy, partial right neck dissection
Radioactive iodine therapy
Ethanol ablation
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.
Symptoms: Lightheadedness to the point of fainting, low blood pressure, loss of menstrual period, weight loss, brain fog, joint pain (old injuries and surgeries hurting), soreness and stiffness of legs, depression, severe anxiety, trouble concentrating, sweaty palms, dry eyes, sensitivity to light and sound, tingling in hands and feet, hair loss, weak nails, tiny bumps on legs, digestive issues (soft stool and diarrhea), rapid heartbeat, fatigue despite sleeping for long hours, insomnia, nightmares/night terrors, temperature dysregulation/burning sensations, (burning hands but feet and ears ice-cold)
How an ER Visit Uncovered Hayley’s Pancreatic Neuroendocrine Tumor (pNET) at 27
At just 27 years old, Hayley’s life took a completely unexpected turn. She was living a busy, family-focused life when sudden pelvic pain sent her to the ER. The scans didn’t explain the pain, but they revealed something she never saw coming: a mass on her pancreas. That incidental finding turned out to be a pancreatic neuroendocrine tumor, a rare diagnosis that often goes unnoticed until much later.
What’s striking about Hayley’s experience is how quickly things moved. Because she was already working with a surgeon for a completely unrelated concern, she was able to get a biopsy within weeks. The tumor was small enough for her to qualify for a Whipple procedure, also known as pancreaticoduodenectomy. This complex, hours-long surgery removed part of her pancreas, duodenum, bile duct, and gallbladder. She didn’t need chemotherapy, something her medical team told her was a huge blessing.
Even though Hayley’s treatment happened fast, its mental and emotional toll has been long-lasting. She admits that she struggles with “scanxiety” before each follow-up imaging and feels the weight of survivorship, especially knowing she’s much younger than most people diagnosed with pancreatic cancer. She also deals with lasting digestive changes from the procedure, forcing her to completely rethink her diet.
Through it all, Hayley has stayed focused on what matters most: her son. Being apart from him during surgery was the hardest part, but she credits him with motivating her to get through every step. She’s deeply grateful to the ER doctor who took her situation seriously and pushed for follow-up, believing that early detection quite literally saved her life.
Her advocacy centers on the importance of early detection. Hayley hopes that one day, full-body scans will be part of routine physicals so more people have a chance at catching serious illnesses before symptoms appear. She wants others to know that survivorship looks different for everyone, and that even when the road is difficult, there’s hope.
And in a surprising twist, those scans revealed more than cancer: Hayley learned she was born with one kidney and a unicornuate uterus, conditions she never would have discovered otherwise. That makes her son’s full-term birth feel even more miraculous. (Editor’s Note: A unicornuate uterus is a rare condition where only one half of the uterus forms.)
Hayley’s story is a powerful reminder to listen to your body, advocate for yourself, and push for answers because sometimes the thing you weren’t looking for ends up being the most important discovery of your life.
Watch Hayley’s video to find out more about her story:
How unexpected pelvic pain led to an early pancreatic neuroendocrine tumor diagnosis
The rare discovery that may have saved her life at just 27
Why her doctors called her one of the “lucky ones”
The life-changing truths she learned from a single scan
How early detection shaped her future and her mission to help others
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.
Symptoms: Fainting spells, fatigue, dizziness, anemia, shortness of breath, absence of menstruation, unexplained weight loss, night sweats Treatment: Surgery (total gastrectomy with a Roux-en-Y reconstruction) ...
The Power of Positivity and Advocacy in Mary’s Stage 4 Endometrial Cancer Care
Mary’s story is a reminder that life can shift in an instant, but so can your focus, priorities, and resilience. In September 2023, she was diagnosed with stage 4 endometrial cancer (stage 4B) after a late-night ER visit with the symptom of sudden right-side pain. Until that moment, her only clues were unusual fatigue and a couple of unexplained UTIs, which she and her doctors linked to her recent diabetes diagnosis.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
When scans revealed a mass, things moved quickly. She was scheduled for a procedure that same night to place kidney stents, a fast referral to oncology, and eventually an open hysterectomy in late October. Surgeons discovered the cancer had spread to both ovaries and fallopian tubes, but thankfully not to other common areas like the bladder or liver.
Mary’s approach from the start was grounded in trust, education, and a commitment to living fully. She leaned on a stellar care team that developed a treatment plan tailored to stage 4 endometrial cancer. This included six rounds of chemotherapy, followed by ongoing immunotherapy infusions.
While the fatigue and bone pain from treatment were rough, Mary says she fared better than many, avoiding severe reactions or illness. She also benefited from strong advocacy within her medical team, especially when insurance initially balked at covering her treatment before it was officially approved for endometrial cancer.
Her mindset was to stay positive, stay involved, and to keep doing what matters. Mary believes in being an informed, proactive patient by researching enough to understand her stage 4 endometrial cancer diagnosis, asking questions, and trusting her doctors when evidence-based recommendations aligned with her needs. She encourages others, especially women, to listen to their bodies, push for answers, and not dismiss even small changes in health.
Outside of treatment, Mary continues to work, travel, and immerse herself in the hobbies she loves, from antiquing to gardening. She makes time for concerts, dinners with friends, and family trips, including a bucket-list Alaska cruise in the works. Her community of family, friends, and neighbors has been a lifeline, stepping in with meals, rides, and everyday support. For Mary, this experience reinforced the value of connection, self-advocacy, and finding joy in both small outings and big adventures.
She hopes sharing her experience helps others learn about stage 4B endometrial cancer, the importance of early evaluation, and the reality that advanced disease still has multiple treatment paths. “It’s about living your life,” she says, “and not letting fear keep you from what matters most.”
Watch Mary’s full interview to find out more about her story:
How a late-night trip to the emergency room changed Mary’s life
The treatment decision that made all the difference for her
Why she says attitude is just as important as medicine
The surprising role her friends and neighbors played in her care
Her must-hear advice for women about paying attention to symptoms
Name: Mary M.
Age at Diagnosis:
58
Diagnosis:
Endometrial Cancer
Staging:
Stage 4B
Grading:
Grade 2
Symptoms:
Unusual fatigue
Urinary tract infections
Extreme pain on the right side of the abdominal area
Treatments:
Surgery: hysterectomy
Chemotherapy
Immunotherapy
Thank you to Karyopharm for supporting our independent patient education content. The Patient Story retains full editorial control.
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.
Looking back, I probably had a couple of symptoms that I did not realize.
Introduction
My name is Mary and I was diagnosed with stage 4 endometrial cancer (stage 4B) in September 2023. I have a husband and two kids, who are now 21 and 20. We adopted our kids from Guatemala and they have been with us since they were babies. After we had fertility issues, we decided adoption was the way to go. It was easy for us because my father-in-law is adopted and I have some cousins who have adopted children, too.
I grew up in St. Louis, Missouri, and have lived here my entire life, except for the time I went to college at the University of Missouri, which is two hours away. I’ve spent most of my life working as a paralegal.
I enjoy doing so many things. I love gardening. I love walking. I like spending time with my family. I do a lot of antiquing, whether it’s painting furniture, refinishing things, redoing things, trying to critique things, or creating things to make them a little better than when I got them. I have booths at two antique malls in St. Louis.
I like hanging out with friends. I love live music, concerts, and musical theater. I like to read. For many years, I wasn’t able to read much, but I’ve got a little bit more time to do that now, so I’m trying to read some things I haven’t read. My favorite genre is murder mysteries.
My family and friends would probably say that I have a good sense of humor. My kids would say I can be judgmental at times, although I try to do my best with that. It’s usually done in good humor and not in a mean way.
I have done so much volunteer work over the years. I love to do volunteer work, like with the parent-teacher association at school. I love to travel. I like to go to places I’ve never been before. I don’t want to always go to the same place. I like seeing something new.
My daughter would say I’m always dressed up. I don’t feel like I’m fancy, but I do like to wear dresses and I’ve always liked to since I was a child.
I started having pain in my right side, which was pretty intense and I have a pretty high pain tolerance.
When I First Felt Like Something Was Wrong
Looking back, I probably had a couple of symptoms that I did not realize. I was a little more tired and I am not a napper. I’ve never been a napper, so I should have known that was something.
I had a couple of urinary tract infections (UTIs) and I also never had a UTI before. I’m diabetic, so they were always assuming it had something to do with it, but I had only been diabetic for about a year, so that was still new. They thought it was diabetes or kidney-related. I was put on some medicines and the UTIs went away.
One evening in September, I started having pain in my right side, which was pretty intense and I have a pretty high pain tolerance. It was 10:30 p.m., so I thought I’d try to sleep it off, but if it’s still bothering me in the morning, I’d call the doctor.
It didn’t occur to me to take some pain medication. I don’t like to take anything I don’t have to take. I remembered my mom having her gallbladder taken out when I was in high school. I thought that if anything’s wrong and they need to take my gallbladder out, I probably shouldn’t have anything in my stomach.
It kept hurting, so my husband and I finally decided that since it’s 2:00 a.m. and no one’s getting any sleep, we should go to the emergency room. We looked at the online check-in and there was no line, so we took it as a sign to go since nobody was there and we live 15 minutes away.
At the ER, they initially thought it was my gallbladder. Then all hell broke loose after that.
‘We think something is pushing on your kidneys, so we need to put stents in.’
What Happened in the Emergency Room
They took us in right away. They checked my blood pressure and temperature, and asked a million questions. I hadn’t had any issues prior. I wasn’t having intestinal issues or inability to tolerate spicy food. Nothing weird had been going on.
They started with an ultrasound and gave me pain meds through an IV. During the ultrasound, I thought, “Could she push harder on this area? It’s painful.” Then she said, “We need to do a CT scan.” It all happened quickly because the ER wasn’t crowded. During the scan, he said, “Oh, yeah, I don’t know. I see something in there.” They don’t tell you anything at that point.
We go back to the room and my husband said, “I’m going to let the dog out.” I said, “Let the dog out? Can’t we call a neighbor to let the dog out?” He left to let the dog out and not even 15 minutes after he left, two doctors came in. They introduced themselves and they were very pleasant.
They said, “We think something is pushing on your kidneys, so we need to put stents in. There’s some kind of mass in there. We have an opening and we can do it at like 8:45,” which was 45 minutes from then. It all happened very fast.
I still see the urologist whom I met that night. He’s a nice, very comical guy. I like his personality. He’s a little younger, so I like that too, because I don’t want to have a whole bunch of doctors who are older than I am.
After the procedure, they decided to let me stay the night. I had a temporary catheter in and they wanted to make sure everything was okay. Back in the room, the doctor came in and said, “The surgery went great. We got the stents in. They can stay in for up to three months. We’re going to have an oncologist come in.”
Until he went in to do the hysterectomy, he still thought it was ovarian cancer. It turned out to be endometrial cancer.
At that point, I thought, “Wait a minute. What’s going on?” That was the first time anybody mentioned cancer. I thought about it when they initially said mass, but I wasn’t putting the cart before the horse. My oncologist ended up having a bad reaction to his COVID shot, so he couldn’t come in until the next morning.
When he came in, he said, “We’re going to have to do some more tests. We need to do a PET scan, but I see something on your ovaries. I think you have ovarian cancer. I’m going to schedule a PET scan. I need you to come into the office next week.”
Everything moved quickly. You hear some people who wait forever trying to get in. It was all very fast for me. I was wondering if it was good that everything’s happening fast or if it meant it was bad because everything’s happening.
I got scheduled for a hysterectomy. He was going to be out of town, so he didn’t want to do it for a few weeks because he wanted the stents to have a little time to heal. I had my hysterectomy on October 30. It was an open hysterectomy, not laparoscopic.
Until he went in to do the hysterectomy, he still thought it was ovarian cancer. It turned out to be endometrial cancer. It had traveled to both ovaries and fallopian tubes. It was a large tumor — grapefruit-sized, is what he said.
I had already gone through menopause. I had just turned 58 when I was diagnosed. I went through menopause four years prior. I didn’t experience menopause like other people have. I didn’t get hot flashes. It was just my face that got hot. I did not have the worst experience. I know so many endometrial cancer patients have had bad periods and bad bleeding, and I never had that.
The worst part was calling to tell the kids since they were both away at college.
The worst part was calling to tell the kids since they were both away at college. It would have been different if I were able to tell them in person. It was hard on them because my brother passed away a year before due to complications from COVID and they were close to him. He was young and he wasn’t sick before that. He had a bad two years, but it was all COVID-related.
We told them before the hysterectomy because it took about a month to get the hysterectomy. My son was freaked out. He wanted to come home that day and I told him, “Let’s wait. Let’s see what’s going to happen. I’m still at the hospital.”
Two days later, he came home. He didn’t have a car, so he asked somebody to drive him home. It was a friend he’s had forever, so it was nice. He lives near us and they went to preschool together.
My daughter came in the following weekend. She took a train from Chicago. I think they felt better. I think they thought I was going to look terrible and I looked normal. I don’t look sick. You can’t always tell somebody’s sick by how they look.
My Husband as a Care Partner
He’s incredibly supportive. He will do anything for me. He drives me anywhere I need to go. I can drive and do all those things, but he is very ready to help with everything all the time. It was a change because I’m the motivator of everyone in the house. If something’s going to get cleaned, it’s because I’m motivating people to clean.
He was upset. He was trying to keep himself contained, so I didn’t see him upset. I got more upset. We’re not crazy emotional. One of his sisters is a nurse, so he was on the phone with his sister, when I didn’t know he was on the phone, trying to figure out what was going on and how things were.
The support I have had from friends and family has been amazing.
The Support I Received from Family and Friends
The hardest thing is telling everybody. I have several groups of girlfriends. He was also talking to a couple of my girlfriends on the side, telling them what was going on. It was a lot, but I think he was trying to take over everything.
I’m the super positive one. I always think everything’s going to work out no matter what. Through this diagnosis, through everything, I still think it’s all going to work out. We’re going to make it work. Whatever we need to do, we’ll do.
I have one sister. Telling her was hard, too. The nieces and nephews are all concerned. There was a ton of concern. Even the neighbors were concerned.
One of my grade school mom friends set up a meal train. People were bringing food every day. People were asking, “What do you want? I can make this, this, or this. What do you want?” People were texting me. Neighbors were bringing food, mowing our lawn, and doing whatever we needed done. Everybody was great.
One friend even asked, “Can I come clean your house?” I declined and said, “No, you’re not cleaning my house. It’s okay.” I did let my sister clean my house a little bit, but other than that, we managed to get it done between feeling crappy and not feeling crappy. We’re making it work.
I feel bad for people who don’t have support like that because the support I have had from friends and family has been amazing. My husband has four sisters and they’re all very supportive. We had different kinds of support from different people. Everybody’s sharing what they’re good at. I have a friend who always wanted to buy. “What do I need? What do you need from the store? What can I get for you guys? What can I do?”
It was nice to know that people care and want to help. You don’t expect something like this to happen, but when you do, you want to make sure somebody’s there to help you. I have had so many people offer to bring me to chemo appointments. One time, I had a friend from college drive in from about six hours away to bring me to chemo. That was above and beyond. It was very nice.
I liked my doctor. He was experienced and a good surgeon, so I had the right fit going in.
How I Found My Care Team
It didn’t occur to me that I should be looking around for somebody different. I liked my doctor. He was experienced and a good surgeon, so I had the right fit going in. The team at his office was amazing. Everybody was great, from the physician assistant to the chemo nurses. They did everything I needed done, so I didn’t have issues with anything.
My doctor fought for my infusions. She said, “They don’t want to approve it, but I’m going to keep talking to them until they do.” I said, “Okay, if that’s what you think I need to do.” I didn’t even know what endometrial cancer was when I was diagnosed. My husband and I are not medically informed.
I have several friends who are nurses, so we ask them, “What does this mean? What do you think about this?” One of my nurse friends had breast cancer, so she knew a lot. One of my good friends had breast cancer, so we could talk about chemotherapy and all of those side effects, which was helpful.
My care team was a great group. My doctor left his practice, so I ended up finding a new oncologist. My first appointment with her was in March 2025. She was with my former oncologist and he was a great surgeon, so everything worked out. He got me on the right path and we’re continuing with everything through my new doctor and she’s great as well. She’s easy to talk to and takes time to listen, which is important because it’s easy for me to bring things up.
My oncologist had a great treatment plan and I was happy with it.
My Reaction to Finding Out I Had Endometrial Cancer
It was upsetting, but no matter what it was, I still would have gone through treatment. At least, they knew what it was. It was something that they treated before, whether they didn’t think it was curable or not, which they don’t think is curable. However, I still could go into remission sometime. I feel like they’ve done everything they can.
I already had my big cry. I’m the type of person who, when I cry, I’m done. I’m not going to keep crying. I know everybody’s different, but I’m not going to keep crying every day about it. Some days were more emotional than others.
My Treatment Plan
You need to be aware. You don’t want to push people, but you need to know your treatment plan. My oncologist had a great treatment plan and I was happy with it. I’ve had six chemo treatments, then immunotherapy infusions with chemo, and then 13 standalone immunotherapy infusions.
He said, “Even though your endometrial cancer was in more places, it was better than I thought. Even though it’s advanced in stage, I feel like it was very contained. It wasn’t in your abdomen, your liver, or your bladder, which are common places for endometrial cancer to go. You were very lucky it stayed where it was.” When they did the pelvic wash, they didn’t find any cells in the pathology, any cancer cells out and about.
There’s this small nodule on my lung that they’re watching. They’re unable to biopsy it because it’s too small. He thought that the endometrial cancer had traveled there, but there has been no change on any scans. My current oncologist doesn’t think it’s cancer.
When I met with them, we talked about the treatment plan and what we were going to do moving forward.
The Side Effects I Experienced from Treatment
The chemo side effects were not good. It was mostly fatigue. The bone pain was terrible, but there wasn’t much that I could do about it. The best thing for me was heating pads or ice packs, which sounds weird because even in the middle of winter, I’d still use ice packs.
Chemo days were hard, but I wasn’t emotional about it. We had to get through it. I’m the caretaker. I have to make sure that everybody’s okay and making the right decisions. I’ve never been sick before. I had an ovarian cyst removed 25 years ago, but that was done laparoscopically and was the only surgery I’ve ever had. I’ve never broken a bone. All this was new.
Playing a Role in Treatment Decisions as a Patient
When I met with them, we talked about the treatment plan and what we were going to do moving forward. Hopefully, this chemo would get rid of anything that might be hiding in my body.
The chemo nurse was available all the time. If I had questions, she said I could call anytime. They were always very flexible. I didn’t have a lot of weird things I needed to call about. I would wait until I had a couple of questions before calling her, but she was always very helpful, very friendly, and willing.
He said I was the right candidate for the immunotherapy. Luckily, I didn’t have many side effects.
When I would have an infusion, I would notice people who were having serious side effects. I didn’t have any reactions, so I was hoping that it worked out for them. I also noticed a lot of ladies who were older than me and I felt bad for them. It wasn’t fun at my age, but it has to be less fun when you’re older.
My oncologist sent me to the wound care specialists since I was diabetic. He wanted to make sure everything healed properly. Thankfully, I had no problems, but I was happy to have another set of eyes.
They even had a nurse come to change the dressings twice a week. We could do that at home, but I was happy for them to do it because they could tell if something didn’t look right because I wouldn’t know. We’re not medically inclined to know if something looks bad. Thankfully, my incision healed well. I didn’t have any issues. It was all smooth sailing.
Talking With My Care Team About Clinical Trials
My doctor discussed clinical trials and said, “Even though it’s not FDA-approved for endometrial cancer until June 2024, I want you to do this. It’s one of the newer treatments for endometrial cancer.”
Radiation wasn’t recommended for my stage and grade, which was fine because I felt like the treatment I had was good. He said I was the right candidate for the immunotherapy. Luckily, I didn’t have many side effects from immunotherapy. I would have fatigue on the day of and the day after, and then I’d be fine.
I have an infusion every six weeks. I’ll have a scan to see how things look. Hopefully, everything will be good. There’s a lot to say about having a good attitude, trying to still live your life, and doing what you want to do.
If my insurance is going to cover it, if the doctor’s on top of what he does, and if that’s what he recommends, then I’m all for it
I did minimal research and read all the side effects, but I don’t do that anymore. My doctor’s a gynecological oncologist. There were good statistics from the clinical trials and it worked well for some people. If my insurance is going to cover it, if the doctor’s on top of what he does, and if that’s what he recommends, then I’m all for it. Thankfully, it all worked out.
Keytruda has been approved for 18 different cancers now. Hopefully, it’s helping a lot of people feel better and be able to live their lives. The main thing is to be able to live your life, have time with your family and friends, and do what you want to do. None of us ever knows how much time we have.
How I Continue to Live My Life
I don’t want to sit in my house all day, every day. I have two part-time jobs. I like to go out and about. I’ve scaled back on volunteering, but that’s something I want to get back into. I taught English as a second language and citizenship classes before, which I enjoyed and got a lot out of. I always have something I want to do. We love to go to live music. I like to see concerts. I like to go out whenever I can, whether it’s something small and local or a big concert.
In 2024, I decided I wanted to see Green Day, so we went to Milwaukee and saw them. It was a bigger festival and we saw four bands. I thought, “Am I going to be too tired to do that? No, let’s get the tickets. Let’s just go. I’ll make it work. I can sit down if I’m tired. I’m not going to be so tired that I fall asleep.” It all worked out and we had a great time.
I’m happy to have my hair back. It was crazy curly at first. I shaved it once it started falling out a little bit.
We’ve done a couple of trips with the kids and we’re planning a couple more. I’ve always wanted to go to Alaska, so we’re going on a cruise in 2026. Some of them are bucket list items, but we like to go on vacations. If I had more money, I could vacation more.
I like going out to dinner with friends and trying new places. You have to do the things you love. I still paint my furniture. I love to decorate. I like to help somebody when they need something. I’ve scaled back on those things.
In 2024, we had a ton of graduation parties. For the first couple of parties, I wore a wig. When my hair was a little bit longer, I decided to go without a wig and it was fine. It was a whole new look. People have asked, “Are you going to dye your hair?” I’m getting used to it now. I wasn’t planning on going gray, but you do what you have to do and embrace what you have.
I’m happy to have my hair back. It was crazy curly at first. I shaved it once it started falling out a little bit. Everybody has a different opinion. Some people do cold capping. I thought I would freeze to death if I did that. It wasn’t covered by my insurance either, so I would have had to pay out of pocket.
So much of you is attached to your hair. I thought, “How does my hair look? I didn’t get my hair cut. Do I need to color my hair?” I wore a lot of knit hats. It was wintertime, so that all worked out.
Because this happened to me, I’m better about connecting with friends whom I hadn’t seen in a while.
Doing what’s important to you and spending time with people who are important to you is a big deal. It makes life better and it makes me happier. I have my animals and that’s fun too.
We still have to enjoy the time that we have. It’s always been important for me to do what I want to do. They don’t have to be expensive. You can go to a park, a free concert, or a botanical garden. They aren’t expensive activities, but they’re fun and if you like to do them, do them.
I feel like I’ve always had a positive attitude to some extent. My husband would say, “She always wants to do something.” My daughter would say, “She always has a list of stuff.” I have different lists, like things we need to do or things we need to get at the grocery store. I have a list of major projects, like painting the bathroom or repainting the kitchen cabinets. I have always wanted to do those and I’m now more motivated to keep moving forward.
I’ve always felt like there are things I need to do. My grandmother was like that. She was a sewer, a gardener, and a doer. I feel like I got a lot of that from her. She was probably a little tidier than I am, but we always used to do about that when I was a kid.
I’ve always had a positive attitude. I graduated from college and got my master’s. I got student loans, but I was still able to do it and enjoy myself while doing my best.
I have a religious side. I’m Catholic and I think that should be part of your life too. Hope is part of it. I have always hoped that something better is around the corner, whether it’s politically or environmentally, or whether it’s somebody finding a cure for something or a drug that will help a type of cancer or disease. There should always be hope that something good will happen.
I don’t know if any of that is religion-based. If I didn’t have any religion in my life, that’s how I would feel anyway. You need to be hopeful and hope that things are going to work out. Do they always work out perfectly or as you expect them to? No. Does everything happen for a reason? Probably. I don’t know. We don’t always know what that reason is, but I don’t feel like I was cursed with cancer. I don’t think that’s the way it works.
Take the things that happen in your life and turn them into good things. Because this happened to me, I’m better about connecting with friends whom I hadn’t seen in a while, like my college girlfriends. I invite them to get together. It doesn’t have to be a big, fancy trip. It can be getting together at somebody’s house and having a drink or an appetizer. Spending time with people makes your life more hopeful. Keep doing what you can do as long as you can.
If you truly think something is wrong, you’re going to have to push for yourself… Nobody’s going to advocate for yourself better than you.
What I Want Others to Know
If you feel like something’s off or not right, if you’re experiencing a symptom, even if you don’t think it’s anything, contact your doctor. Maybe it’s something, maybe it’s nothing.
Sometimes doctors will say you’re fine. If you truly think something is wrong, you’re going to have to push for yourself. A family member might, but you need to advocate for yourself. Nobody’s going to advocate for yourself better than you.
There needs to be more education about endometrial cancer.Would I have known I had it? I don’t know, but I wish I had read about it before it happened. I hope that everybody who knows me and hears someone tell them about something they’re experiencing would push them to see a doctor. Some people worry that they may seem like a hypochondriac. Those are usually people who aren’t hypochondriacs and people who are hypochondriacs don’t think they are.
Women are so busy with their lives and taking care of everybody else that they put themselves on the back burner. Take care of yourself, too. I don’t know if I would have known I had it. If I had other symptoms, maybe I would have thought about it more.
There are treatment options. Whether you’re stage 1 or stage 4, there are still treatments for you. You can do whatever you need to do to make yourself better. There are more things I could probably do to have a better lifestyle. It’s a different experience to have cancer. You don’t know what it’s like until you have it yourself.
Thank you to Karyopharm for supporting our independent patient education content. The Patient Story retains full editorial control.
Living with Metastatic Lung Cancer: Clara’s Honest Take on Life and Treatment
Clara’s story is one of change, resilience, and real talk about life with metastatic lung cancer. Diagnosed at just 30, Clara was an avid runner, living independently, and working full-time as a graphic designer. Throughout most of 2024, she chalked up her growing discomfort and hip pain to running-related injuries. After an MRI revealed a herniated disc, it seemed like a clear explanation for her pain, but it turned out that the discomfort was also linked to metastatic lung cancer that had already spread to her bones and joints.
What made things especially confusing was that Clara didn’t experience the classic symptoms of lung cancer. There was no coughing or shortness of breath; none of the usual warning signs associated with it. Instead, she felt dizzy, lightheaded, lost weight, and had swollen lymph nodes, neuropathy, and unexplained headaches.
For months, Clara pushed through it all, thinking it might be a blood disorder or an autoimmune disease. The breast lump she noticed in October raised red flags, but she set it aside until things escalated. Eventually, she landed in the emergency room after throwing up nonstop. That’s when doctors found the metastases.
When Clara was diagnosed with stage 4 lung cancer, she was stunned. Her cancer had spread not just to her bones, but to her liver and brain. It felt surreal, like it was happening to someone else. Once she returned to Iowa for treatment, things moved fast.
Clara started brain radiation immediately and underwent genetic testing that revealed the MSH6 mutation, something she had never heard of before. This biomarker guided her treatment plan: a combination of two chemotherapies and immunotherapy. She is still on immunotherapy now and will be for life.
Becoming disabled has been one of the most difficult parts of this experience. Clara went from running half marathons to relying on a walker or a cane. Losing that level of independence hurts, but she’s working through it with honesty and strength. She also stresses the importance of self-advocacy, listening to your body, asking questions, and making your needs known, whether in the doctor’s office or around loved ones.
Now, Clara’s mission is to advocate and educate others through her TikTok and beyond. From breaking down scary medical procedures like brain radiation to showing how a chemo port works, she’s demystifying the parts of cancer that are often misunderstood or feared. She’s open about the emotions, the identity shift, and the practical realities of living with metastatic lung cancer, while reminding others that life doesn’t stop — it just changes, and that’s okay.
Watch Clara’s video to find out more about her story:
How a running injury masked the signs of metastatic lung cancer
Why Clara didn’t have any typical lung cancer symptoms and what she felt instead
What it’s like to become disabled after a stage 4 cancer diagnosis
How Clara uses creativity and TikTok to educate and advocate for others with cancer
What surprised her most about brain radiation and why it’s not as scary as it sounds
Name: Clara C.
Age at Diagnosis:
30
Diagnosis:
Lung Cancer
Mutation:
MSH6
Staging:
Stage 4
Symptoms:
Pelvic pain
Joint and bone pain
Breast lump
Extreme lightheadedness and dizziness
Vomiting
Fainting spells
Swollen lymph node in the neck
Neuropathy
Headaches
Unexplained weight loss
Severe anemia
Treatments:
Radiation therapy to the brain
Chemotherapy
Immunotherapy
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.
Symptoms: Pelvic pain, joint and bone pain, breast lump, extreme lightheadedness and dizziness, vomiting, fainting spells, swollen lymph node in the neck, neuropathy, headaches, unexplained weight loss, severe anemia Treatments: Radiation therapy to the brain, chemotherapy, immunotherapy ...
Symptoms: Persistent dry cough, shortness of breath, heaviness in the chest, coughing up blood, weight loss, right rib pain, right shoulder pain Treatments: Targeted therapy, chemotherapy, radiation (SBRT) ...
Beneath the Surface: A Surfer’s Story of Melanoma and Self-Advocacy
Mart’s story is a powerful reminder that when it comes to skin checks awareness, you know your body better than anyone else. Initially diagnosed with stage 2 melanoma in February 2023 while living in the Philippines, Mart now lives in the UK and continues to monitor and manage his health after several subsequent melanoma diagnoses.
Always adventurous, Mart lived life in the sun, especially while surfing, without fully realizing how much UV exposure might catch up with him. About a year before his diagnosis, he noticed a persistent lesion on his lips that eventually healed, so he didn’t follow up with a dermatologist. Then, in May 2022, he spotted a small black dot on his arm. Despite two doctors reassuring him it looked benign, Mart couldn’t shake the feeling that something was wrong.
Eventually, as the lesion grew and even began to bleed, he pushed for a biopsy. His anxiety during the 42-day wait for pathology results skyrocketed, something many patients facing a possible cancer diagnosis can deeply relate to. When the results finally came in, it confirmed his gut feeling: it was melanoma, 1.2 mm deep and ulcerated. His world felt like it had been turned upside down.
Getting treatment in the Philippines was complicated. Melanoma is relatively rare there, and many doctors hadn’t seen cases like his. Eventually, Mart found a skilled surgeon in Davao City who had trained in the U.S. and performed the wide local excision. After healing, Mart tried returning to normal life, but new and suspicious lesions appeared on his back, chin, and face. He moved back to the UK to access more consistent care through the National Health Service (NHS), although long wait times and delays left him feeling isolated and frustrated.
Since then, he’s had multiple melanomas diagnosed, along with a basal cell carcinoma, and has undergone several surgeries. What’s striking is how often doctors initially dismissed these lesions as benign, reinforcing Mart’s message to trust one’s instincts and push for a biopsy if something feels off.
The emotional weight of repeated diagnoses and leaving behind his dream life in the Philippines has left Mart deeply reflective. He believes stress may have contributed to his condition and has radically changed his lifestyle to support healing. He’s adopted a strict plant-based, organic diet and incorporates juicing, vitamin D, and immune-supportive supplements. He still surfs and remains physically active, but he practices sun safety religiously.
Mart’s experience is a call to action: be your own advocate, listen to your intuition, and know that taking action early could change everything. His vulnerability and strength shine through, and his story offers both education and hope for others facing melanoma.
Watch Mart’s full video to find out more about his story:
Why melanoma didn’t just affect Mart’s health, but also uprooted his entire way of life
Why Mart believes trauma and environmental stress may have played a role in his melanoma
The one piece of advice Mart gives anyone who finds something strange on their skin
What Mart wishes dermatologists understood better
How Mart continues to live adventurously with a new awareness and purpose
Name: Mart H.
Age at Diagnosis:
49
Diagnoses:
Melanoma & Basal Cell Carcinoma
Staging:
Melanoma: Stage 2A, Stage 1B, Stage 1A, Stage 0
Basal Cell Carcinoma: No stage mentioned
Symptoms:
Non-healing lip lesion
Black mole on upper arm that grew, changed color, and bled
Treatments:
Surgeries: Wide local excisions on the arm, chin, cheek, and back
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.
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
Mary Jane Redefines Life with Inoperable Stage 4 Stomach Cancer
Mary Jane, diagnosed at 39, is living with inoperable stage 4 stomach cancer. Her story is not just about a diagnosis. It’s about identity, advocacy, resilience, and redefining what it means to truly live.
Mary Jane lives an active and full life — hiking Arizona’s trails, paddleboarding, hosting dinner parties, gardening, and doting on her two dogs. She was diagnosed with COVID in 2020 and afterward, she noticed subtle but persistent changes: overwhelming fatigue, night sweats, back pain, and weight gain. For years, doctors attributed her symptoms to post-COVID effects, menopause, and even hemorrhoids. Despite being a healthcare professional, she struggled to be heard.
Her stage 4 stomach cancer diagnosis finally came in November 2023, after years of persistent, unexplained symptoms. What followed was an emotional rollercoaster that involved overwhelming scans, inaccessible appointments, and endless insurance calls. Even as a nurse, navigating the cancer system was foreign and disorienting. But through it all, Mary Jane leaned into self-advocacy, refusing to accept vague answers and seeking multiple opinions. Her persistence was a lifeline.
Though the cancer is incurable and has spread extensively, Mary Jane has found hope in treatment. Immunotherapy, targeted therapy, and chemotherapy have helped manage her symptoms and extend her life. She’s now learning how to live with the side effects while centering joy, peace, and meaning in her day-to-day life.
Mary Jane’s story shows that stage 4 stomach cancer doesn’t erase identity, but reshapes it. Her mental health has become a focus, and she leans on nature, movement, and friendships to keep her grounded. She took a break from work, finished her degree, and has traveled the world, checking off bucket list dreams with gratitude and purpose.
Her perspective has shifted. She no longer saves joy for later. Every moment counts, every meal matters, and every mountain hike is a victory. Mary Jane wants others to know how important it is to listen to your body. She urges others to trust themselves and speak up. Her story is about survivorship, not in terms of years, but in finding meaning — through strength, clarity, and peace even through terminal illness.
Watch Mary Jane’s interview to know more about her story:
How a psychiatric nurse practitioner learned to trust her instincts despite years of dismissed symptoms.
What it’s like to be diagnosed with stage 4 stomach cancer while navigating grad school and divorce.
Why Mary Jane says her life became more meaningful after her terminal diagnosis.
From paddleboarding to the Camino de Santiago, how Mary Jane is still chasing joy with incurable cancer.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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
Symptoms: None; found during the evaluation process for kidney donation Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation ...
Learning How to Be Positive: Kelle’s Approach to Navigating Bile Duct Cancer
Kelle’s story is one of resilience, following the clues and getting the tests that would eventually lead to a diagnosis of bile duct cancer, or cholangiocarcinoma, in April 2024. Initially, her symptoms seemed minor. She experienced stomachaches after a ski trip, which she attributed to food poisoning, but additional symptoms like jaundice, intense itching, and fatigue led her to seek medical help.
Her husband, being a doctor, ordered an MRI that showed a blockage in her bile duct. After a series of procedures, including a stent placement and several biopsies, Kelle received the unexpected and life-altering news the night before a family vacation that she had cholangiocarcinoma (bile duct cancer). This was despite being initially told she likely didn’t have cancer.
While the news rocked her, Kelle took the advice of her doctor and decided to maintain some normalcy, continuing with plans to visit Hawaii while arranging expert care. Her and her husband’s research led her to the Huntsman Cancer Institute, where she would receive a life-saving Whipple procedure, also known as pancreaticoduodenectomy.
As a health coach, Kelle had always been proactive about her wellness, but this didn’t shield her from the emotional turmoil of a cancer diagnosis. She was forced to step outside her independent nature and lean into the support of family and friends. Her role as a coach helped her learn how to take her own advice and ask for help when needed, something she hadn’t been used to doing.
Kelle also developed creative coping mechanisms to manage the challenges of bile duct cancer treatment, from meditating during chemotherapy to practicing yoga and journaling. Even as she navigated the side effects of chemotherapy and immunotherapy, including fatigue and neuropathy, she remained committed to staying mentally and emotionally grounded.
Her attitude of self-advocacy extended beyond the medical side. Kelle was transparent about her diagnosis with her kids, explaining the changes ahead without overwhelming them. She also found strength in sharing her experience on her podcast, Ambitious-ish, where she empowers high-achieving women who may also be experiencing burnout. Kelle credits the pressures of constant hustle in her life for contributing to her cancer diagnosis. Since then, she’s worked on slowing down, listening to her body, and cultivating rest.
Kelle’s perspective on survivorship is all about embracing the rollercoaster without succumbing to fear or dread. With guidance from mentors, self-reflection, and a strong support system, Kelle has learned to redefine what it means to live a fulfilling life despite her diagnosis. By sharing her story, she provides hope, not only to those dealing with bile duct cancer but also to anyone who feels lost or overwhelmed by life’s challenges. Her experience is a reminder that, even in the face of uncertainty, there’s always a way forward if you listen to your inner truth.
Watch Kelle’s full interview to find out more about her story and discover:
How Kelle turned her bile duct cancer diagnosis into an opportunity for self-discovery and growth
How she navigated the emotional and physical challenges of bile duct cancer and what she learned along the way
Kelle’s advice on self-advocacy and building a supportive team of doctors when facing bile duct cancer
How she uses meditation, coaching, and self-care to thrive through her treatment for bile duct cancer
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
