Tag: patient experience

Dr. Ross Camidge: I Have Stage 4 Lung Cancer

Post author By Stephanie Chuang
Post date November 21, 2025
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November 21, 2025

Dr. Ross Camidge: I Have Stage 4 Lung Cancer

World-renowned Lung Cancer Expert Shares His Experience Becoming a Lung Cancer Patient

If you look up Dr. Ross Camidge, you’ll see the incredibly extensive work he’s done in lung cancer research for over 20 years, fighting for his patients and for others. Lung cancer patient advocates have long described him as a true patient-focused oncologist who has devoted his life to saving lives.

Now he’s sharing that he is trying to save another life — his own — after becoming a stage 4 lung cancer patient. As a leading oncologist at the University of Colorado, Dr. Camidge has had to manage this seismic shift from physician to patient.

Symptoms began subtly, manifesting as shoulder pain and changes in his breathing, and led swiftly from a chest X-ray to comprehensive scans revealing widespread disease, including metastases to the brain and bones. Dr. Camidge’s rapid transition from observer to recipient of care highlighted not only the emotional strain but also the necessity of maintaining routines within his family. His daughters, then aged 10 and 12, became central to his motivation, their everyday lives anchoring him amid uncertainty.

Dr. Camidge describes his cancer as an “uneasy neighbor” — no longer cured, but not dying, responsible for periods of disruption and adaptation. His story is marked by determination to keep living fully in 90-day cycles, carving out time for new experiences and mentoring others in medicine and life.

Thank you, Dr. Camidge, for all you do for patients and for sharing your story to help others.

Interviewed by: Stephanie Chuang
Edited by: Stephanie Chuang & Katrina Villareal

Introduction: Dr. Ross Camidge

Deciding to Become a Doctor

I decided that I wanted to become a doctor at around 11 or 12. It was either that or a veterinarian, mostly because it was easier to examine dogs than people. But that changed somewhere along the way.

Medical school is an undergraduate degree in the UK. I started medical school at 19. I was a year older than most of my peers because I’d taken a year off to travel the world. Compared to America, we were all ridiculously young. I went to the University of Oxford for my first three years of medical school and then did a hard science PhD at the University of Cambridge. I worked in a lab for four years and came back to clinical medicine a little older and wiser.

The PhD had been a bit of a disaster, so I learned to deal with failure as much as success. I went into clinical medicine with the mind of a scientist but the soul of a physician. It was like doing an experiment where the person was the experiment: trying to make a diagnosis and intervening with treatment. Unlike those four years in the lab, I could show success in a matter of hours in patients like Mrs. Jones in front of me, and I liked it.

I was relatively socially awkward, but being a physician gave me the opportunity to talk to people. They would listen to me and I would listen to them. It was a social tonic for me.

I didn’t know when exactly I wanted to become an oncologist. It became fascinating after several years into my training, before I started an attachment in oncology. It seemed to combine skills I’d developed along the way. These things always appear to have a narrative in retrospect, but it was random noise at the time. Oncology had molecular biology, science, clinical trials, and a very strong interaction with the patient.

A diagnosis of cancer strips away the nonsense in conversations. You don’t talk about the weather; you get down into the nitty-gritty of someone’s life. Now we keep people alive for years, so it becomes a very close relationship, which I’ve gained from enormously and hopefully my patients have, too.

A diagnosis of cancer strips away the nonsense in conversations.
Dr. Ross Camidge, Lung Cancer Expert

Choosing Lung Cancer as a Specialty

You’re influenced by what happens along the way. I was training in Edinburgh, the capital city of Scotland. At the time, breast cancer had all the money and all the breakthroughs, but it was incredibly crowded — where the “cool kids” went.

Lung cancer was very common, especially among the working class in Scotland, and there was a huge unmet need. The patients were — and still are — the most wonderful because, for whatever reason, they don’t ask, “Why me?” They’re very accepting and humble. Many of them were smokers, which made me want to take a step towards them.

During that time, targeted therapies for lung cancer were being developed. I got a glimpse that molecular biology was going to go mainstream and that genes would become part of everyday oncology care. I saw the future: patients I liked, a huge unmet need, and exciting science about to happen. That’s why I ended up specializing in lung cancer.

There was a huge unmet need. The patients were — and still are — the most wonderful because, for whatever reason, they don’t ask, ‘Why me?’ They’re very accepting and humble.
Dr. Ross Camidge, Lung Cancer Expert

Life Outside Medicine: Humor and Personality

If my wife or best friends described me, I think the first thing they would say is that I have a sense of humor. Almost everything can be turned into something that makes me or someone else laugh. Even a trip to SuperTarget can get my wife giggling about whatever we’re talking about.

There’s fun in life. People are often surprised in my clinic because I don’t distinguish between me as Ross and me as a doctor. There’s a lot of laughter; it’s a great relaxer and leveler. Over the years, patients poke fun at me, which I love.

Do I have time for hobbies? I don’t have pastimes — no time that needs passing. As my health changed, I decided there were things that I at least wanted to try. Typically, I would work, spend time with my two teenage daughters, exercise, and occasionally cook. Like all men, I think I deserve a medal when I cook because I don’t do it often.

I am very clean with dishes — that’s one of my stipulations. I try to instill that in my youngest daughter, who likes cooking with me: you have to tidy up as you go along.

People are often surprised in my clinic because I don’t distinguish between me as Ross and me as a doctor. There’s a lot of laughter; it’s a great relaxer and leveler.
Dr. Ross Camidge, Lung Cancer Expert

Humor and Communication With Patients

My humor doesn’t usually involve jokes with a beginning, middle, and end, but my favorite, which comes from Christmas with my girls, is: Two snowmen talking and one goes, “Can you smell carrots?” You have to have the visual image.

The difference between a good joke and a bad joke is the audience; timing is everything. You don’t tell a joke immediately after giving a cancer diagnosis. The purpose is to remove stress and barriers. I don’t wear a white coat and I try very hard to remember the language I used before becoming a doctor. You don’t use big words or technical terms like Kaplan-Meier curves unless necessary. Communication is the goal and not to show how clever you are.

Communication is the goal and not to show how clever you are.
Dr. Ross Camidge, Lung Cancer Expert

Discovering the Diagnosis

My First Lung Cancer Symptoms

My mum, who was 90 at the time, came from Edinburgh to stay with us in 2022. As she improved, she insisted on returning to Edinburgh in May that same year. Around that time, I felt like I pulled something in my left shoulder after exercise, so I had a massage. The person said it was tight. It loosened up and then returned, but I didn’t think much about it. I thought I was just getting older.

Around the same time, I noticed that when I slept on my right side, my breathing sounded different. I was doing a two-phase exhale where there was a slight wheeze at the end. I wanted it to be asthma, but I kept wondering why it happened only on one side.

I tried my wife’s inhaler, which helped a bit, but I made an appointment with my primary care physician, who was a locum. He went down the asthma route, prescribed something, and said that if it didn’t work, we’d do something else. I said, “By the way, I’m a thoracic oncologist. Could we just do a chest X-ray?” He complied and I had the X-ray right away.

While I was checking my emails, the GP called and said, “There’s something on your chest X-ray; you need a CT scan.” As he spoke, I pulled up the X-ray and instantly knew it was lung cancer. There was a mass at the top of my right lung and a partial collapse.

I also saw dots in the other lung: metastatic.

I called my wife, who was with the girls on vacation, and told her not to worry and to go about her day. That same afternoon, I had a CT scan and saw that the cancer had spread. There was a mass in my right lung, lymph nodes in my chest, and bone deposits. I knew it was metastatic. A radiologist friend, who normally doesn’t interact directly with patients, called to tell me and apologized for the news; it was hard for her, but very touching.

There was a mass in my right lung, lymph nodes in my chest, and bone deposits. I knew it was metastatic.
Dr. Ross Camidge, Lung Cancer Expert

Scan Results

Saturday brought a PET scan and Sunday an MRI of the brain. The cancer had spread, with deposits in my brain, including the brainstem. The brainstem is only about an inch-and-a-half across, and I had a deposit about an inch wide — not compatible with life, yet there I was looking at it.

Monday, I had a bronchoscopy and a biopsy, performed by a friend; another friend, a pathologist, was present to confirm sampling. I didn’t pull favors; they just did this. From the chest X-ray on Friday morning to Tuesday morning, I knew I had a specific mutation, metastatic cancer, and the right treatment as an expert in the field.

Sometimes, when a patient passes, their family gives me unopened bottles of pills, which help others start therapy. Weeks before, I’d gotten just such pills from a patient’s family, which were the ones I needed, so by Tuesday afternoon, I started them. Later, I called the patient’s husband, saying his wife would be pleased we used her pills to start someone on therapy early — I didn’t say that it was me.

The GP called… As he spoke, I pulled up the X-ray and instantly knew it was lung cancer.
Dr. Ross Camidge, Lung Cancer Expert

Processing My Stage 4 Lung Cancer Diagnosis

Family, Emotions, and Planning

Having spent 20 years doing this, responding was automatic and professional, but reality would intervene. In the evening, my wife and I would sit on the stoop and cry, talking through what to tell the girls, who were 10 and 12. We wanted a plan with all the facts and treatment, so that the message was not a period at the end, but a dotted line into the future.

A week after the X-ray, we told them: Daddy has the same condition as his patients, he’s started therapy, and he’s on a pill. It’s not a cure, so the cancer’s not going away, but you’ve met some patients at fundraising events, and they’re doing well.

My eldest asked, “Are you going to die?” because that’s what teenagers say. It’s not a yes or no; it’s “Well, it’s not curable, but we’ll see how it goes. We’re not going to ask anything more of you; maybe I’ll ask for a hug, but your life stays the same.”

My eldest asked, ‘Are you going to die?’
Dr. Ross Camidge, Lung Cancer Expert

Reconciling Being Both Doctor and Patient

People say, “This shouldn’t happen to anyone, but especially not to you,” but I don’t think anyone deserves cancer more or less than I do. If anything, I know about it, so I can probably deal with it better. I think of it as taking one for the team. Less than a week in, part of my brain saw it as a privilege — a full circle moment of working on something and then literally walking in the shoes of my patients. I wasn’t angry.

In the first weeks, I’d lose control and sob uncontrollably, mainly thinking about my girls and the possibility of not having a role in their future. Dads are supposed to do certain things with their daughters. The feeling of leaving them vulnerable was hard.

Another thing that made me cry — and took longer to process — was when anyone was being nice to me. I kept the diagnosis close, but people reached out, and it’s hard to deal with others’ anxiety. I’m dealing with my own stuff; I don’t have time for yours. But you also have to accept kindness and love — not just give lip service, but actually absorb it, which is surprisingly hard.

Less than a week in, part of my brain saw it as a privilege — a full circle moment of working on something and then literally walking in the shoes of my patients. I wasn’t angry.
Dr. Ross Camidge, Lung Cancer Expert

Seeing Life Differently

Family Vacation

We had a vacation in the Florida Keys booked a week after my diagnosis, which was perfect timing. I had started targeted therapy, so we could go. Every moment and photograph feels different now because you have the concept that someone will look back on them and you won’t be there.

My wife was taking a picture of me and the girls in their bathing suits, giggling as I smiled and pointed skyward. It could mean, “This is my number one daughter, and this is my number one daughter, too.” Or maybe, if I’m not here, I’m pointing upwards so they know that Daddy’s looking down. Maybe that’s cheesy, but that’s what I felt.

Every moment and photograph feels different now because you have the concept that someone will look back on them and you won’t be there.
Dr. Ross Camidge, Lung Cancer Expert

The Girls’ Experience and Second-Line Treatment

The girls coped well. We didn’t burden them with every scan and bump. I’m a believer in minimizing cancer cell diversity — evolution needs diversity, so you want to minimize the palette. Even though the pill worked, I consolidated with chemotherapy, then radiation to all known disease sites, similar to what I would do for my own patients. Fatigue made me sleep more. The girls were fine and got used to finding me asleep on the sofa.

About 2 1/2 years in, an area progressed. I described oligoprogression as everything is controlled and when a weed comes up, you don’t panic, you just treat it. I had radiotherapy and thought to try another chemotherapy course for any microscopic disease, considering a new drug from a friend in the pharmaceutical industry. I discussed it with my oncologist, who was also a former trainee, and we tried adding this drug.

While some tolerate it fine, I had a terrible time. I had rash, scabs, couldn’t eat, lost 10-15% body weight, and threw up a lot. The side effects exaggerated those of chemotherapy, so I moved into the basement so the girls didn’t have to see me run to the bathroom as often. The oldest struggled, found it upsetting, and was polite but somewhat distanced. The youngest would sit on the end of the bed and tell me about her day, which was incredibly valuable — acting normal, showing I was still present.

I’ve recovered now. My hair has returned, I regained the weight — maybe too much — and I’m back to my routine of living 90 days at a time, which was the time between scans.

The youngest would sit on the end of the bed and tell me about her day, which was incredibly valuable — acting normal, showing I was still present.
Dr. Ross Camidge, Lung Cancer Expert

Maintaining Privacy During Treatment

For the first 2 1/2 years, privacy was easy. I only told my family, some close friends, and my medical team. I run the program. The surgeons didn’t need to know, but the radiation oncologists and pathologists knew.

When I told the team, I was a mess, but ended with three bullet points: treat me the same — if you were horrible, keep being horrible; keep the circle of trust — patients don’t need to panic; look after yourselves — it’s a shock for you, too. That worked until I had the bad reaction to the treatment, so I skipped conferences and kept the Zoom camera off as I felt so bad, like death with vomiting and constipation. I didn’t want my life to end this way or any public declaration to bring value. When I felt better in September 2025, three years after the diagnosis, I came out of the cancer closet.

I checked with the girls at a family meeting for their awareness. Beforehand, the counselor wasn’t sure the youngest had internalized what my diagnosis meant because she was 10 at the time. The counselor wanted black-and-white: Daddy is going to die from his lung cancer. During our family meeting, I used that line and everyone cried. Then, as teenagers do, they said, “What’s for dinner now?” Normality resumed, at least outwardly.

When I told the team, I was a mess, but ended with three bullet points: treat me the same… keep the circle of trust… look after yourselves.
Dr. Ross Camidge, Lung Cancer Expert

Sharing My Story: My Why

Coming out after three years had value. I could say, “You’ve interacted with me for three years, and there was value in that — you’ve been interacting with a cancer patient. Surprise!” I want to stand up and show that cancer doesn’t mean the end of value or end of productive life.

At conferences, I don’t need to be introduced as a patient — I just happen to be one. The goal is to let cancer become as much as a footnote in a speaker’s resume as diabetes — irrelevant unless germane.

I want to stand up and show that cancer doesn’t mean the end of value or end of productive life
Dr. Ross Camidge, Lung Cancer Expert

What Patient Advocacy Means: Perspective Shift

People want this Hollywood story: a terrible physician becomes nice because of cancer. I don’t think I was ever that bad. One ongoing mission is how we report side effects — grading is imprecise, missing duration. I tracked my own activities, like email replies during chemotherapy. They dropped to zero for two or three days after treatment and then returned, a visual representation of real impact for others. That’s how I see the value — showing actual patient function, not theoretical toxicity.

I benefited from my own work — how we surveil people in therapy, watch the brain, and consolidate with radiation. I was even involved in the initial trials for the drug that I’m on. I also benefited from research by my colleagues and patients who came before.

Living With Uncertainty

I’m comfortable living with the unknowns. I know the worst-case and best-case scenarios, and having seen and lived those examples, I’m okay with uncertainty.

When people say, “You’re no evidence of disease, right?” it’s not that simple. I have things going on. I’m not cured, but I’m not actively dying. It’s a middle ground — an uneasy relationship with cancer, like a slightly annoying neighbor. Sometimes it’s quiet, sometimes it knocks on the wall, but you deal with it.

I know the worst-case and best-case scenarios, and having seen and lived those examples, I’m okay with uncertainty.
Dr. Ross Camidge, Lung Cancer Expert

How I Live Life Differently Now

Now, I turn down things I don’t want to do. I no longer feel I must be a good citizen and join boring committees. I carve out time to try new things with the 90-day challenge by trying something new between scans. Yesterday, I did my first knitting class. I was terrible at it, but it was a new experience. Mentoring, encouraging, sharing mistakes and successes, that’s my legacy; I’m passionate about that.

Messages for My Daughters on Their Birthdays

You’re conflicted. You want things to be normal — kids ignoring you, rolling their eyes — but also want them to understand your situation. There’s a delight in not forcing yourself into their lives. The more they behave like typical teenagers, the better.

Thank you for sharing your story, Dr. Camidge!

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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.

Matthew’s Stage 4 Pancreatic Cancer Story

Post author By Katrina Villareal
Post date March 26, 2024
8 Comments on Matthew’s Stage 4 Pancreatic Cancer Story

May 29, 2025

Matthew’s Stage 4 Pancreatic Cancer Story

Interviewed by: Alexis Moberger
Edited by: Katrina Villareal

Initially misdiagnosed due to overlapping symptoms with his existing condition, Matthew experienced concerning symptoms such as dark urine, pale stool, and intense itching. Eventually diagnosed with metastatic pancreatic cancer, Matthew underwent different combination chemotherapy treatments, including FOLFIRINOX (leucovorin calcium or folinic acid, fluorouracil, irinotecan hydrochloride, and oxaliplatin) and GAP (gemcitabine, nab-paclitaxel, and cisplatin).

Despite setbacks and the grim prognosis associated with pancreatic cancer, Matthew’s tumor responded positively to the new chemotherapy regimen, leading to tumor shrinkage and the disappearance of metastases in the liver. Following a successful Whipple procedure, Matthew emphasizes the importance of not being defined by statistics and advises others facing similar challenges to live life to the fullest while also taking their health seriously.

His story highlights the unpredictable nature of cancer treatment, the importance of advocating for oneself in medical settings, and the significance of cherishing each moment, even in the face of adversity.

In addition to Matthew’s narrative, The Patient Story offers a diverse collection of cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Name: Matthew R.
Diagnosis:
- Pancreatic cancer
Staging:
- 4
Symptoms:
- Dark urine
- Bone white stools
- Itching on palms and soles
Treatments:
- Chemotherapy: FOLFIRINOX, GAP
- PARP inhibitor: olaparib
- Surgeries: cholecystectomy, pancreaticoduodenectomy (Whipple procedure)

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

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

Table of Contents

Introduction
Pre-diagnosis
Diagnosis
- Getting the Official Diagnosis
Treatment
Post-Treatment Scans
Follow-up Protocol
Words of Advice

Introduction

I live in Hazel Park, Michigan, with my girlfriend Natalie and our pug Monique. Because of the nature of my illness, I haven’t had a job in three years, but in my former life, I was finishing a PhD. I was going to be an academic.

Pre-diagnosis

Initial Symptoms

The most popular narrative surrounding pancreatic cancer is that not only is it very lethal but also very difficult to diagnose. The pancreas is deep in the body. The earlier symptoms are very nuanced, can go unnoticed, and can also be misdiagnosed as a multitude of other things. By the time you’re experiencing symptoms, the cancer has spread outside of the pancreas. I don’t want to say it’s too late, but that’s what conventional wisdom is.

I was diagnosed with Crohn’s disease when I was 25. Gastrointestinal distress, which is one of the more perceptible symptoms of pancreatic cancer, was par for the course for me. I probably wouldn’t have noticed even if I didn’t have Crohn’s. I lost some weight over the months, but it wasn’t until late January 2021 that I started to experience starkly distinct symptoms.

It was the COVID pandemic. I lost my job and moved to a different city to help my friend with his business. His business closed and he moved away, so I was alone when all this started.

I had dark urine and bone-white stool. I didn’t even notice the stool color for a while. At first, I thought I was hungover. I had a few beers the night before so I drank some Gatorade and lay in bed, but the urine did not get lighter.

My skin started to itch. The bathroom symptoms were pretty jarring, seeing urine that dark and poop that pale, but the itching was probably the worst. The palms of my hands and the bottoms of my feet itch. It was worse at night. I never felt anything like it before and those are hard places to scratch.

After a whole night of itching, I put my hands and feet in the tub under hot water to numb the sensation. In retrospect, it’s jarring to think about burning my hands and feet to alleviate the pain, but the itching was that significant.

Not everyone gets the itchiness. There seems to be some controversy because not every pancreatic cancer awareness campaign includes itchiness. I experienced it and it was horrible.

When something started to happen, I sat on it for 48 hours before I finally told someone. It wasn’t the most responsible, but in retrospect, not that bad. I was in a long-distance relationship with a woman I knew from graduate school. I told her and she said, “You should go to the doctor.”

I have a lot of medical anxiety. I have never been a good patient. For someone with such anxiety about doctors and hospitals, I needed someone to tell me.

Going to Urgent Care

I had recently moved to Durham and didn’t even have health insurance, but I went to an urgent care center. My blood test results showed that my bilirubin was high. We get some more tests back. The nurse said, “You don’t have a doctor here yet and these test results are troubling. You should go to the ER.”

Going to the Emergency Room

I went home to sleep because I hadn’t slept in three nights. I was so tired that despite the itching, I passed out. Early the next morning, I went to the ER and that was the beginning of my journey.

They admitted me to the hospital and ran some more blood tests to see what was going on with my liver enzymes. They did an ultrasound and an endoscopic ultrasound.

Bile Duct Stricture

They found that there was a stricture in my bile duct. Your liver produces bile, a digestive enzyme stored in your gallbladder and then released into your small intestine to digest fats and other foods. The tube that brings the bile down goes through the head of your pancreas. That tube had a stricture, so it was closed off. When bile can’t be distributed normally, you end up depositing it in your blood and your flesh, and that causes jaundice and elevated liver enzymes.

With the endoscopic ultrasound, they were able to place a stent in my bile duct in the hope that it would stretch it out. They told me to come back in a few weeks to have another endoscopy and remove the stent.

There was no sense of urgency. I was an otherwise healthy person with a history of colitis. They didn’t think that this was anything scary.

After they removed the stent, the symptoms came back, so they decided that it was my gallbladder causing the symptoms. With pancreatic cancer, it’s very common for people to assume that it’s a gallbladder issue. They decided to take my gallbladder out. After the surgery, the symptoms return.

It was late April. I went to my gastroenterologist’s office, who was the one who did the endoscopy. She said, “I don’t know what’s happening, but you for sure don’t have cancer. We have done so many brushings and you definitely don’t have cancer. If you have cancer, I will roll over in my grave.” I left her office feeling pretty confident.

Diagnosis

Getting the Official Diagnosis

Three hours later, I got an automatic notification on my phone from MyChart. One of my cytology reports came back. It said adenocarcinoma. I didn’t know what that meant, but I knew it wasn’t good.

I sat with that for about two hours. Then the surgical oncologist who did my gallbladder surgery called me. My case got automatically referred back to him. He was out of town and called me using his personal cell phone.

I told him, “This lady told me I definitely did not have cancer and now I do so I’m freaked out,” and he apologized. My surgeon is the salt of the earth. He calmed me down. I don’t know if he remembers it this way, but I’ll never forget this conversation. He said, “If this is cancer, the tumor’s very small and I should be able to get this. I’m confident.”

The area in which they found the adenocarcinoma is called the ampulla of Vater. Everything in this part of the body is pretty small and overlapping so pancreatic cancer could be an explanation. But given my age and, let’s face it, the taboo around death, no one was talking about that.

When pressed, the doctor told me ampullary cancer, which has a higher survival rate and is still incredibly rare for someone my age but less rare than pancreatic cancer in the same age category.

Treatment

Discussing the Treatment Plan

Because of the size and the layout of this part of the body, they do the Whipple procedure, also called the pancreaticoduodenectomy. They do the same surgery for ampullary cancer as they do for pancreatic cancer.

Five days after the phone call, I was in his office and he said, “I’m going to remove part of your pancreas and part of your small intestine.” I didn’t have a gallbladder, but that also would have gone including part of my stomach.

My surgeon told me that they cut me open and, contrary to what they thought, found a tumor on the head of my pancreas that had spread outside of the pancreas. Metastatic pancreatic cancer is considered inoperable so when they saw that, they closed me up.

Because of my age and because they suspect that I’m a BRCA2 mutation carrier, the surgeon said, “We have to confirm with genetic tests, but I’m pretty sure you have this particular genetic abnormality. If that’s the case, then there are targeted therapies that might work for you.”

He said, “This is a mean cancer. But because of your particular situation, after treatment, we might be able to try the surgery again in a year.” For pancreatic cancer, surgery is the only long-term survival solution. Chemotherapy and radiation are life-extending, but they’re not curative. He was pretty confident, at least in the context of a lethal diagnosis.

Later that day, he introduced me to my oncologist. He was not as confident. When pressed, he said, “With treatment, you might have 1 to 3 good years left, but that’s it.”

FOLFIRINOX Chemotherapy

This was at the beginning of May 2021. My wound had to heal. Three weeks later, I started chemotherapy. Like a lot of other people with metastatic pancreatic cancer, I was given FOLFIRINOX, which is five different drugs. It’s awful. Chemo combinations are all awful, but FOLFIRINOX was really, really abrasive.

I had a scan after three months on FOLFIRINOX. The oncologist said, “Your tumor shrank a little bit,” but you can tell from the way he’s telling me that it could be an imaging error or a minute retreat that it’s barely perceptible.

At my next CT and MRI three months later, the tumor grew. It had metastasized to my liver so things were not looking good. At this point, I was not confident that I would be a special case or a miracle. I thought this was it.

Switching Chemotherapy Regimens

My oncologist switched me to a different chemotherapy combination. He told me there was a combination that some researchers found was promising for people in my situation. It was gemcitabine, nab-paclitaxel, and cisplatin (GAP).

I was honestly relieved because after being on FOLFIRINOX for almost six months, the neuropathy had gotten so bad that I couldn’t get out of a chair by myself. I needed someone to hoist me up. I was pretty thin at this point. It was miserable.

On the new chemotherapy regimen, my quality of life improved dramatically. By the time my first set of scans came around three months in, some of the spots on my liver had started to disappear. I did three more months of chemo and made it through.

I didn’t lose my hair. I’m six feet tall. I was 215 lbs when I was diagnosed and miraculously maintained a healthy weight so I’m very thankful for that. At this point, I thought I was still dying sooner rather than later so I was trying to have fun and it certainly made having fun a lot easier.

Post-Treatment Scans

In March 2021, he looked at my scans and, if memory serves, they could not identify cancer outside of the tumor.

Almost a year to the day, they attempted to do the Whipple and, this time, it was successful. When Dr. Allen came into my hospital room, he said all of my margins were good and the lymph nodes they tested were negative.

Before this, they couldn’t see any cancer on the CT or MRI, but that didn’t mean that my peritoneum wasn’t covered in cancer. That just meant that they wouldn’t be able to tell until they got in there. They were pleasantly surprised that things had worked.

Follow-up Protocol

The last scan was a lot smoother than the others, but they’re incredibly difficult. I get a scan every three months for the next six years, but the chances of me living out those six years are astronomically small. Pancreatic cancer has a remarkably low five-year survival rate. It’s unlikely that I will see all of that time, at least on paper.

Words of Advice

It’s important to remember that you are not a statistic. I was diagnosed with something I wasn’t supposed to have at my age. It was very unlikely. It was supposed to kill me and I didn’t die so, in a sense, I beat the odds not once, but twice.

People think that pancreatic cancer is an old person’s disease. I think that’s why no one ever looked because no one ever even thought that I could have pancreatic cancer. I’ve heard over and over again that I’m too young. Statistically speaking, they’re correct. For people under 35, it’s incredibly rare, but there is a difference between statistical analysis and what statistics are for, and encountering a patient one-on-one.

Treatment is not linear. Pancreatic cancer is often thought of in linear terms as a quick, short trajectory to death. We assume that if treatment will work, it will work immediately. You don’t take one step back and one step forward. In my experience, that’s not true. Sometimes things get worse before they get better and it’s not a reason to lose heart.

Have a drink, eat the cheeseburger, and live your life to the extent that you can. That’s how I lived. Take your health seriously but also meet yourself where you are.

Thank you for sharing your story, Matthew!

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Laura’s Stage 4 Kidney Cancer Story

Post author By Chris Sanchez
Post date March 13, 2024
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my stage 4 kidney cancer story

March 13, 2024

Laura’s Stage 4 Kidney Cancer Story

Interviewed by: Alexis Moberger
Edited by: Chris Sanchez

Laura survived stage 4 kidney cancer.

Originally from south Louisiana, Laura now lives in Southern California. She splits her time between working full time in marketing in the gaming and hospitality industry, being a kidney cancer patient advocate, enjoying her sports and hobbies, and caring for her family.

Laura had been struggling with her health for at least two years before her symptoms were properly diagnosed as cancer. She suffered from elevated blood pressure and fatigue so significant that she would sometimes have to nap in her car during lunch breaks, and was also found to have a very high red blood cell count. But the doctors she would consult chalked her symptoms up to lack of sleep, stress due to her demanding job, excess weight, and so on.

Later on, Laura’s health took a turn for the worse. She started to experience back pain so bad that she sometimes had a hard time walking, and her legs became so swollen that she was unable to wear pants to a dinner out to celebrate her 29th birthday. She returned to the doctors, who started taking a closer look at her symptoms and ordered more procedures.

Blood work uncovered kidney issues. Her doctor told her to have a CT scan done that week, but she decided to take immediate action. That very night, just 5 days after her 29th birthday, she went to the emergency room. It was a pivotal and timely decision: the doctors discovered that she had stage 4 cancer and a massive 13cm tumor on her right kidney. The doctors also found that this tumor was what was causing her legs to swell, because it was blocking her vena cava–the main artery bringing blood back up to the heart from the lower parts of the body–making immediate treatment even more urgent. Laura was also diagnosed with the rare genetic disorder, hereditary leiomyomatosis and renal cell cancer (HLRCC), or Reed’s Syndrome.

Laura’s ER surgeon, a kidney cancer survivor himself, connected her with the UCLA-based surgeon who had operated on him years ago, and she ended up heading there for surgery. During a 5-hour session, the surgical team removed her right kidney, right adrenal gland, most of her inferior vena cava, and 7 lymph nodes. However, a checkup some weeks later revealed that the cancer was not only still present but had also spread to her lungs, liver, and nearly all the lymph nodes in her chest.

Laura started seeing another doctor in Las Vegas, who recommended that she take part in the S1500 PAPMET randomized clinical trial organized by the global cancer research community, SWOG Cancer Research Network. After some deliberation, she decided to join the trial, where she ended up taking the targeted therapy drug Cabometyx (cabozantinib).

The side effects of cabozantinib were crippling. But just a year after Laura started taking it, she was found to be in complete remission. Out of 147 patients who joined the trial, she was 1 of only 2 who had had a complete response to their treatment.

Laura continues to be healthy to this day; she undergoes scans every six months, and to date her status continues to be “NED” (no visible evidence of disease). But not only is she enjoying her life once again, she is also now a patient advocate, and actually works with the very doctors who concluded the clinical trial she joined.

Laura is sharing her story with us to show that a Stage 4 diagnosis does not have to be a reason to give up hope; to exhort cancer patients to advocate for themselves as a lifelong responsibility; and to urge them to get to know both their bodies and their disease, in order to be able to make the best possible choices for themselves.

In addition to Laura’s narrative, The Patient Story offers a diverse collection of stories about kidney cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Name: Laura E.
Diagnosis:
- Genetic condition: hereditary leiomyomatosis and renal cell cancer (HLRCC) (Reed’s Syndrome)
- Type 2 metastatic papillary renal cell carcinoma
Staging:
- Stage 4
Symptoms:
- Profound fatigue
- Hypertension
- High red blood cell count
- Severe back pain
- Badly swollen legs
Treatment:
- Chemotherapy: Cabometyx (cabozantinib) assigned under S1500 PAPMET 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.

Table Of Contents

Laura's Stage 4 Kidney Cancer Story
More Kidney Cancer Stories

I’m not the same person I was before I was diagnosed. There’s no way I could be.
I definitely look at life differently now…
I try my best to live as authentically as possible. Because I know time is a gift.