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Niccole is Redefining Life After Stage 4 Stomach Cancer

Niccole is Redefining Life After an Stage 4 Stomach Cancer

Niccole is a stage 4 stomach cancer survivor who embraced traveling the world after her diagnosed in 2021. After experiencing stomach pain, acid reflux and vomiting, she went to the doctor for testing that revealed her cancer. Ultimately, Niccole had 80% of her stomach removed, changing the way she lives each day.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Niccole’s tumor was blocking her stomach’s pyloric sphincter, and stomach cancer surgery meant that she might lose her stomach altogether. She initially underwent a chemotherapy regimen that worked by shrinking her tumor before surgery. Through biomarker testing, Niccole also learned that she carries the BRCA1 mutation, inherited from her mother’s side, linking her diagnosis to a known familial risk. 

Niccole B. stomach cancer

Niccole underwent surgery to remove her gallbladder and 80 percent of her stomach. Life afterward required a complete lifestyle change, requiring her to eat much smaller meals.

Two years later, Niccole’s cancer metastasized in her ovaries, liver, spleen, and peritoneum. She faced another uphill climb through HIPEC treatment and further surgery. Now on ongoing immunotherapy and ctDNA monitoring, she continues to live fully in the present, knowing that time is uncertain. Her story embodies acceptance, grit, and the power of patient advocacy. Through Debbie’s Dream Foundation and Hope for Stomach Cancer, Niccole mentors others navigating the unknown. She proves that life after a life-altering diagnosis can still be full of purpose.

Niccole’s story delves into:

  • Small, early symptoms can signal deeper issues. Listening to your body can save your life
  • Treatments may eradicate disease, but often transform how patients live afterward
  • Advocacy and patient communities provide essential emotional support and empowerment
  • True strength is not found in control but in embracing uncertainty with purpose
  • Niccole’s transformation unfolded not just through healing, but through redefining what it means to truly live

  • Name: Niccole B.
  • Age at Diagnosis:
    • 37
  • Diagnosis:
    • Stomach Cancer
  • Staging:
    • Stage 4
  • Mutation:
    • BRCA1
  • Symptoms:
    • Stomach pain after having alcoholic drinks
    • Eating less
    • Slight weight loss
    • Acid reflux
    • Vomiting
    • Getting full fast
  • Treatments:
    • Chemotherapy: hyperthermic intraperitoneal chemotherapy (HIPEC), open HIPEC with cytoreductive surgery
    • Surgeries: partial gastrectomy, cholecystectomy, splenectomy, partial colectomy, partial hepatectomy
    • Radiation therapy: targeted radiation therapy
    • Immunotherapy
    • Targeted therapy: PARP inhibitor
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer
Niccole B. stomach cancer

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

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



My name is Niccole

I am a stage 4 stomach cancer survivor. I was diagnosed in August of 2021 at the age of 37, and I live in Arizona.

So, I am huge into travelling. Ever since my diagnosis, we have decided that we are going to travel the world because we do not know who is going to make it to what age. I am a realtor here in the Valley, and I love what I do. I do residential real estate. I work with buyers and sellers out here in the Phoenix metro area. I have two dogs. They are my pride and joy. I love them. No kids, so they are my fur babies. 

Originally, the first trip that we ended up doing was on my bucket list. After I finished my chemo in 2022, we booked a cruise. We did a seven-day cruise to Alaska in May of 2022, and it was amazing. It was beautiful. We want to go back, and we want to do a land and sea cruise.

More recently, last year, we did a Mediterranean cruise. We started in Barcelona. We spent three days in Barcelona and then travelled the whole little coastal area. We went to Pisa and Florence, which were amazing. We ended in Rome, and we spent an additional three days in Rome. I think we were out there for about sixteen days. We have been to Ireland. We went to Lisbon, Portugal. We have been to the Canary Islands, so we have been all over the place. We still have a bunch of stuff to do on our bucket list, but those are some of the most recent trips.

Just getting to learn about the culture is why travel means so much to me. I really think it is important that we get outside of the United States because I really think it opens up our eyes. We really like seeing the churches and the history and just getting to understand where we came from, honestly. It is a lot of fun to see the different sights. There are so many cool things out there that are old.

Ireland was pretty cool. It was very, very wet. It rained a lot. We went in October of 2023, I think. We did a cruise. We are big into cruising, so we have done a lot of different cruises. It allows you to see multiple areas versus going to one location and then trying to figure out your travel and your stay and all that kind of stuff. The cruise line is pretty much your food and driver, and the place you lay your head.

I had a quiet travel year after a cancer recurrence and HIPEC treatment

This year has been quiet because I got busy with work, and then with the recurrence, I had surgery. We are coming up on a year in November. I had surgery in November because I did HIPEC with CRS, and that recovery was really, really rough. It was not until probably March that I was really back into—I do not even want to say normalcy, because I am still somewhat a little different—but I got more consistent with being able to do things and getting my energy back and all those types of things. So this year has been a little bit quieter on the travel front for us.

We have done a couple of things. We just got back from Holden Beach, North Carolina. But otherwise, it has been a soft travel year for us.

My early symptoms, and the first signs that something was wrong

At the beginning of 2021, none of the things that I had were really extremely “boom, in your face.” I was 37. I chalked up a lot of the things that I had going on to maybe stress with work, and just that, as we age, things happen.

We used to go and enjoy margaritas with the girlfriends. We would go out, and I would have a drink, and I would be in agonizing pain. I remember a couple of times we went out with some couples to have drinks. They were going to go out afterwards, after we did dinner and everything. They were going to go to another place, and I had to go home, because I was literally curled up in the fetal position because my gut felt so bad. So that was kind of the start of it.

I had lost a little bit of weight, but it was not significant. It was not a super extreme weight loss. I was struggling a little bit with getting full faster, and then it kind of progressed. That was probably all at the beginning of 2021, January, February time frame.

I had worsening symptoms, including acid reflux

Then things started progressing. Probably about the March-April time frame, I started to get a lot of acid reflux, and I had never experienced acid reflux before. It got to the point where I could not even lie down in my bed anymore. I would have to go sleep in our living room on the sofa, because the sofa was able to prop me up, so I was not lying down. If I lay down, I would wake up vomiting in my mouth.

I had started to take some over-the-counter medications. My family is all kind of in the medical field in one aspect or another. I had reached out to my uncle when I was having some of these problems and asked, “What can I take to calm some of this acid reflux and these intense symptoms? I am just feeling sick.” He advised me and helped me with some stuff, and I started taking some medication.

I am one of those people who reads the bottle and only takes it if I need it. That goes for pain medication and all that kind of stuff. I took it for 14 days, and it made me feel a little bit better. I thought, “Okay, this is great. I am feeling good.” The acid reflux had calmed down.

As soon as I came off of it, it got severely worse, to the point where if I ate anything by mouth, even drinking water, it made me vomit. It was making me so sick. The entire month of July 2021, I essentially spent on the sofa. I could not eat anything. We tried everything from crackers to chicken noodle soup, all of your grandmother’s secrets to help you feel better.

Of course, at the age that I was and with COVID going on, I had been healthy before all of this happened. I had no idea that I would be facing stomach cancer. So I did not have a built-up primary care physician or know where to turn. I was Googling and talking to people, and asking where I should go.

To get into anything then was insane because nobody was taking new patients. I finally got into a GI place.

My initial GI visit and missed testing opportunities

The woman I saw, her first plan for me was, “Okay, we are going to get you in for an endoscopy.” Nothing was leading up to that. We did not talk about H. pylori possibilities. We did not do a breath test. We did not do all these things.

She put me on pantoprazole. I have now learned, after the fact, that the first thing we should have done was test for these things, which I did end up coming back negative for—H. pylori and all that stuff. But I would have had to come off the pantoprazole, which was helping me with some of my acid reflux symptoms. I would have had to come off it for two weeks for them to actually even do the test.

The advice I had gotten from my family was, “Before we go to this extreme where they have to put you under to do the endoscopy, let us see what else we need to do first,” because that is a pretty extreme first step. So I ended up getting into a primary care office about a week after I went for this GI consultation, and that was even worse than my GI thing.

I had an alarming ultrasound and was urged to go to the ER

The only good thing the primary care provider did for me was to send me for an ultrasound of my stomach area. When I went in to get that done, the tech who did it asked, “When was the last time you ate?” I said, “I followed your directions. I have not eaten or drunk anything in the last 12 to however many hours. Why?” She said, “Because your stomach is full.”

She showed me the picture, and it was big and full. I was advised to go to the ER. I thought, “I am not going to go spend $1,000 at the ER when the estimate for doing this endoscopy was like seven or eight hundred bucks. I will just go back to the GI.”

It was a bit of a fight on that aspect, too, because the PCP was saying, “You need to go to the ER right now,” and was very insistent. I ended up going back and getting in with the GI. Instead of seeing one of the physician assistants, the GI actually called me to get me in almost immediately because he looked at my chart and the notes that the other provider had taken, and he got me in immediately.

Rapid escalation: scope, CT, and oncology referral

I went in, I think it was a Thursday, and met with him. The following week, he got me in for my scope. I think I went on a Wednesday for my scope. Friday, he had me in for a CT. The following Monday, he had me connected with his oncologist partner, who I still see today—my current oncologist.

I went in for my oncology consult and my surgical consult on Monday. By that following Thursday—so the same week—after my Monday consult, they had me in for a diagnostic laparoscopy and to place my port. This was all done before we even had my pathology back. We got my pathology back the same day that I met with my oncologist.

My oncologist called it without even having the pathology report back. He said, “You are either going to be a stage two or stage three, depending on what they find—how much it has gone into the stomach lining.” I ended up being a stage three when they went in and did the diagnostic laparoscopy.

The phone call, my panic attack, and hearing “oncologist”

Before I actually went in to meet with the oncologist, I received a phone call. I did not have any idea that it was going to be a cancer diagnosis. My GI doctor did not have the results yet, and he did not have the pathology. He said, “It could be cancer,” but there was no real discussion yet.

He wanted to fast-track me. I received a call from the oncologist’s office. I looked up what an oncologist was because I had no idea, and I literally almost died—or at least it felt like it. I looked it up, and, as I said, I had been struggling to eat. I had lost a bunch of weight.

I think I was at 109 pounds. I used to be about 130–135 pounds. When I started getting sick, I was about 120. By the time I actually got in and was diagnosed, I think I was at about 109 pounds, maybe 105. I cannot remember exactly now. I was not eating, and every time I ate, I was throwing up.

When I got that call, I had a panic attack. I literally had a panic attack to the point where I almost felt like I was going to black out. I could not move my hands. I was trying to text my boyfriend when I got this, and I was just really freaking out about it.

I am very blessed that I have some friends who live really close to me. Instead of me calling 911, I had a girlfriend who came over, and I had a couple of friends who came and visited with me and soothed me and calmed me down. It was a pretty freaky experience. It is not an easy diagnosis to get.

Involving my family and getting a second opinion

My second opinion was pretty much my uncle’s. When all of this started coming down the pipeline, I called him because he is essentially my dad—my dad is not in the picture. 

My uncle has a medical background. He is a retired pediatrician and did a lot of education and other things, so he was my go-to for all of this.

When I found out about this, I called him immediately, and he actually flew out here to be with me for my first appointments.

Understanding the tumor location and the possible removal of my stomach

It is interesting when I talk to different people. When I talk to my significant other, he remembers things a little differently, but we both remember how intense it was.

When we went and met with the surgeon—again, this was all before having the actual pathology report back—my stomach cancer was at the base of my stomach. It was covering my pyloric sphincter. That was why nothing was going through, and it was all coming back up. Nothing could pass into my small intestine. I was not passing bowel movements or doing any of those types of things. It was all coming back up as vomit.

When I met with the surgeon, we were sitting in his office, and he was showing me this diagram. He said, “Okay, I am going to have to cut out probably at least 50, if not more, percent of your stomach. This is where your tumor is. It is at the bottom of the stomach, and down here is where everything is supposed to come through. This is all being blocked off. I am going to have to get clear margins and come up higher to wherever I get clear. I may have to take your entire stomach.”

That was freaky in and of itself. I asked, “What if the chemo works?” We were now having a conversation about both. We would start with chemotherapy and then go into surgery if chemo shrank the tumor, because essentially the plan was: start with chemo, shrink the tumor, and then go in and do the stomach removal to whatever portion he needed to — 30, 40, 50, or even 100 percent of my stomach.

Facing life without a stomach, and my initial treatment plan

My biggest question was, “How am I going to live without a stomach?” It is one of your most needed organs for processing food and nutrition and all those types of things. There are definitely ways around that, because I am still here. But it was terrifying.

We did the surgeon consult with that fear of his taking my stomach out, and then we went and met with my oncologist. The process was to do four rounds of chemotherapy and then have an endoscopy to see how much the tumor had shrunk or reduced in size. Then we would make the plan for getting me in for surgery.

I am a BRCA1-positive. I have BRCA1, which is the gene mutation that usually puts you at a predisposition for either ovarian or breast cancer. I actually do have breast cancer in my family. My mom passed away from breast cancer when I was seven years old. Her mom passed away about a year after her. I have multiple family members on either side who have had breast cancer.

Honestly, I thought that was going to be my cancer. It turned out that BRCA actually caused my stomach cancer.

Tumor disappearance, major surgery, and creating a new stomach pouch

My tumor actually shrank and was gone by the time we did my endoscopy before my surgery in November. I am coming up on four years celebrating my 80 percent removal of my stomach and my gallbladder. On November 4th of this year, it will be four years.

When we did my endoscopy before my surgery, my tumor was completely gone. I was very blessed that my response to chemotherapy was pretty much 100 percent. The surgeon went in and did an 80 percent removal of my stomach. They brought my small intestine up and attached it to my esophagus to whatever is remaining of my stomach up there. Then he created a little pouch for me. I no longer have a full stomach; I have a little pouch that they made with a hole in it that goes down into my small intestine.

He also removed my gallbladder at that time, too. There was no metastasis there, but they say that the gallbladder tends to become an issue with some of the things we have going on with this specific cancer. I am actually very grateful he took it.

Completing chemo and radiation, and my first declaration of NED

We did four rounds of chemotherapy, the surgery, and then I ended up having 25 rounds of targeted radiation. Then I had four more rounds of chemo. It was a process.

I got my first NED—no evidence of disease—in March of 2022. We continued on a PARP inhibitor that is supposed to target the mutation, my genetic mutation. We had me on that for about a year. We continued with scans to make sure nothing was showing up.

A suspicious PET scan and surprise hysterectomy findings

I had a PET scan that came back looking really weird in, I think, August or September of 2023. My oncologist was on me to get my ovaries removed because the PET scan was showing some weird stuff down by my ovarian area. They were uncertain exactly what it was or what it could be.

I finally decided to do a total hysterectomy. In April of 2024, I got scheduled and went in for my total hysterectomy. That surgery was estimated to be an hour and a half, but ended up taking four hours. He brought in a second surgeon because I had metastases to my ovaries, my tubes, and my peritoneal lining. It was on my spleen and my liver. We also found out there was some in my small bowel.

Again, I have been very blessed with my team of doctors. He could have easily said, “I am not touching this,” with the amount of metastases he found. Instead, he brought in somebody else to help, and they removed everything they could within the scope of the hysterectomy.

We proceeded to start me on chemotherapy again, just on a different drug. I asked my oncologist, because it went into my peritoneal area, if we were going to do something called HIPEC.

HIPEC and major cytoreductive surgery

We found the recurrence, and we decided to get me back on the old chemo drug. I talked to my oncologist about doing HIPEC. He referred me to my HIPEC surgeon, who was amazing. We got me qualified.

I think I had five or six treatments of that one particular chemo drug. We ended up having to take me off one of those drugs because I was having some really bad allergic reactions to it. That kind of chemotherapy is intense. It really affects your body.

I met with my HIPEC surgeon in, I think, July of last year and went in to get my PCI score done to make sure that I could qualify for HIPEC, which I did. I think I ended up with a score of 10 or 11. I qualified for HIPEC.

The first HIPEC that we scheduled was at the end of September last year. It was done laparoscopically. They did three incisions, one on either side of my abdomen and one in the middle so they could have the camera in there. Then, five weeks later, they had me come back and do open surgery. He did open HIPEC with CRS, cytoreductive surgery. He went in and removed all of the tumors that he could see or cancerous areas that were questionable.

He also did a splenectomy. They removed my spleen, two feet of my small intestine, the spot that was on my liver, and anything else they could find. That was my big surgery back in November last year.

Ongoing immunotherapy and close surveillance

We have had me on immunotherapy since my recurrence in April of last year. We are also doing a ctDNA blood test called Signatera. Unfortunately, my last Signatera test just came back showing positive. We do not know if it is a false positive or not.

Right now, the plan is to have me on immunotherapy for two years, starting last April when we started it. I still have probably another 6 to 8 months, potentially more, depending on how my body holds up to it. Currently, I go every six weeks for immunotherapy.

We do all the scans. I had a PET scan done in June. We just did a CT scan. I am going for another endoscopy and colonoscopy here in the next month or so. We are on surveillance at this point, along with the immunotherapy.

They cannot really do anything with any of the positive tests until they see something again. That is kind of where we are sitting. Every three months, I am doing a scan. Unfortunately, none of my stuff shows up on my scans. A CT scan is just protocol with this, but I do not ever expect to see anything.

If my next Signatera test comes back positive, the plan would be to go in for another diagnostic lap to see if they can find what or where the potential cause of the DNA showing cancer circulating in my bloodstream is.

I’ve adapted to life without a stomach

The biggest challenge has been the lifestyle change. Losing your stomach is huge. When they first did my stomach removal, there were a lot of things I could not eat. You have to be very cautious and conscientious about what you are putting into your body, which, I mean, we all should be, but especially after this kind of surgery.

When I first had my surgery, I would go into severe dumping if I ate certain things. The first six to eight weeks after my stomach removal, I could not eat any bread products or pastas or those types of things. I could not have coffee because it would just put me in the bathroom.

Now, four years out, I have gotten used to my new way of eating and drinking. I have to have a plan. I feel like I am always continually thinking about eating because I have a very small pouch. I do not have a stomach, so I have to continually eat throughout the day. If I forget, you will know, because “hangry” is definitely a thing. My boyfriend will say, “When was the last time you ate?” and I am like, “Oh, was I that mean? I am so sorry.”

I live with the fear of recurrence, but I’ve chosen joy

It is always at the back of my mind: When is the next recurrence going to happen? I will be completely honest. I live my life, and I live my life to the fullest, but it is always going to be there.

When people ask me, and we talk about it, and I say, “Oh yeah, I have been NED since last year,” they say, “Oh, congratulations, that is great.” And it is. I will live my life to the fullest, and I will do everything every day. I tell people that we could all walk out tomorrow and get hit by a car, to be honest. 

But I feel like I live my life differently because I know that I may not make it another twenty years.

Finding strength and support through family, friends, and stomach cancer communities

I am much more on Facebook than I ever was before this diagnosis, but I had the same question as a lot of people: I had no idea. Stomach cancer is not a very well-known or talked-about cancer. It was actually quite difficult for me in the beginning to find people who were like me.

My family was all very helpful. My cousin’s wife recommended that I get on Facebook and look at some of the different groups that were specific to stomach cancer. I ended up connecting with a couple of different organizations.

One that I am really involved with is called Debbie’s Dream Foundation: Curing Stomach Cancer. They are based out of Florida. We do a lot together. I do mentorship with them because they offer a mentorship program. If people want or need help and want to know about treatment and different things, I am really active with them for that, and for advocacy.

We go to Washington, D.C. every year to talk to our legislators to make sure that they continue funding stomach cancer research and allocate funds to our specific disease. Stomach cancer is one of the top five deadliest cancers, yet it receives a very minimal amount of funding for research.

We go every year for advocacy with them. I am also part of a smaller group called Hope for Stomach Cancer. They also do a lot of education—so does Debbie’s Dream—with different symposiums and things. Hope for Stomach Cancer also does the same thing.

We call each other family, to be completely honest. Next month, I am going out [to Los Angeles] because November is Stomach Cancer Awareness Month, and Hope for Stomach Cancer is doing a patient summit in LA. I am going to see some of my “family” and get some good knowledge on what is going on in the stomach cancer world.


Niccole B. stomach cancer
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Categories
ALK Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments Tyrosine kinase inhibitor (TKI)

Shauna’s Story of a Cold, a Cough, an X-ray, and Stage 4 ALK+ Lung Cancer

Everything was Fine Until It Wasn’t: Shauna’s Story of a Cold, a Cough, an X-ray and Stage 4 ALK+ Lung Cancer

Shauna was living her healthiest, most active life at 51 when everything shifted. After what seemed like a simple cold in the fall of 2018, she noticed a cough that wouldn’t go away. A quick trip to urgent care during her lunch break led to an unexpected X-ray, and within days, she learned there was a mass in her lung. Not long after, a biopsy confirmed the diagnosis: stage 4 ALK-positive lung cancer.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Naturally, the news was shocking. Shauna had no family history, had never smoked, and had just sent her kids off to start their own lives. She and her husband were busy, working full-time, and looking forward to the next chapter. Instead, she had to face something that seemed impossible.

Shauna D. stage 4 ALK+ lung cancer

From the start, Shauna leaned into both her medical team and the online ALK-positive lung cancer community. She discovered support groups on Facebook, where people openly shared knowledge and resources. That encouragement helped her seek second opinions from specialists in Nashville and Boston, giving her confidence in her care. Although she stayed with her local oncologist for several years for convenience, she eventually transitioned to a larger hospital in Indianapolis to explore clinical trials and gain access to more advanced care.

Shauna’s treatment has centered on targeted therapies. Her first tyrosine kinase inhibitor (TKI) kept her stable for about five years, even though she had to adjust her dosage due to side effects like bradycardia and pneumonitis. She also underwent radiation for specific spots of growth along the way. (Editor’s Note: A tyrosine kinase inhibitor is a type of targeted therapy used to treat cancer. Tyrosine kinases are enzymes that may be too active or found at high levels in some types of cancer cells, and blocking them may help keep cancer cells from growing.)

By 2024, when new nodules appeared, she switched to a second TKI. Thankfully, her scans are stable again, and she feels better on this newer medication, with fewer side effects and more energy.

Through it all, Shauna has prioritized mindset and lifestyle. She focuses on staying as healthy as possible, embracing a mostly vegan diet, exercising, and paying attention to how her body responds. Though stage 4 ALK-positive lung cancer is treatable but not curable, she chooses not to live in fear. Instead, she invests in her relationships, grateful for every moment she’s been able to spend with them.

She’s also thinking ahead about clinical trials, recognizing how important they are for advancing treatment and offering patients more time. Her biggest challenge is knowing her time may be cut short, but she finds peace in her faith and purpose in encouraging others. As she puts it, life is short for all of us. She reminds people to live fully, not to waste days in worry, and to be kind.

Shauna’s story highlights the importance of support, second opinions, staying proactive, and holding onto hope while navigating life with stage 4 ALK-positive lung cancer.

Watch Shauna’s interview to find out more about her story:

  • How a lingering cough led to a life-changing diagnosis
  • Why she turned to online communities for knowledge and support
  • The role her husband and family play in her care and outlook
  • What clinical trials could mean for her and others with ALK-positive lung cancer
  • Her message about choosing hope and living fully each day

Scroll down to read the transcript of Shauna’s interview.


  • Name: Shauna D.
  • Age of Diagnosis:
    • 51
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • ALK
  • Symptom:
    • Persistent dry cough following a cold
  • Treatments:
    • Targeted therapy: tyrosine kinase inhibitors (TKI)
    • Radiation therapy
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung cancer
Shauna D. stage 4 ALK+ lung 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.



Hi, I’m Shauna

My name is Shauna. I live in Indiana. I was diagnosed with stage 4 lung cancer in 2018.

My family and friends would describe me as dependable and fun-loving.

When I first noticed something was wrong

Early in the fall of 2018, I had an illness, a normal cold, but my cough stayed after a couple of months. It didn’t go away. During lunch break at work, I went to an urgent care clinic where they did an X-ray and found a mass in my right lung. The person who did my X-ray talked to me about seeing the mass and told me I would need to see a pulmonologist and get scheduled.

As you can imagine, I was shocked. I scheduled with a pulmonologist and he scheduled a biopsy. I had a needle biopsy and all the scans that came after, and the biopsy came back positive for cancer.

The moment everything changed

I had just turned 51 that October and I was diagnosed in November. I was in the best shape of my life. My two kids had just flown the nest, and my husband and I were still working full-time. I was shocked. I had been eating well and exercising. I don’t have a family history of lung cancer. I have never smoked. It came out of nowhere. It was upsetting, for sure.

I searched for a different opinion

I live in a more rural area in Indiana, so we’re not close to any big hospitals. I started with a pulmonologist who was local and very good, and he was able to do what I needed done and diagnosed me. Then I found an oncologist who was local as well.

I came across a Facebook group for ALK-positive lung cancer, which helped a lot. It’s very educational, informative, and supportive. The people in that group have a lot of knowledge and that steered me to think of getting a second opinion, so I did. I went to a specialist in Nashville, Tennessee, and at Mass General in Boston, who is an ALK-positive lung cancer specialist.

I stayed with my general oncologist for about five years because I knew I was getting the standard of care. The treatment would be the same as I would get anywhere, and it was convenient being close to home. But since then, I have switched my care to a bigger hospital in Indianapolis because things are getting a little more complicated and I know I’ll have better access to clinical trials. It’s just a better facility.

It was pretty easy for them to tell, even with just the X-ray. They could see that it was in both lungs. I have innumerable little nodules in both lungs and one primary tumor in my right lung, so that made it stage 4.

How I learned about my biomarker

One of my second opinion doctors, who I see now at the Indianapolis hospital, is the one who submitted my sample to a company for biomarker testing. Everyone on my team knew what direction to go. I didn’t have that problem at all. Right off the bat, I’d say within a few weeks, I came back as ALK positive. I knew that there was a mutation and the thoracic oncologist told me that I likely had a mutation because of my age and some other things.

My treatment plan

Immediately, they started me on my first tyrosine kinase inhibitor (TKI) and at the full dose. I had some of the more serious side effects right away, like bradycardia and pneumonitis. My oncologist would lower the dose each time I experience an event like that.

At the time, that was the best and newest TKI available. We decided to stay the course and see because it had been proven with others that you could take half the dose and have it still be effective. In my case, that’s what we found. I was able to take half the dose and all the side effects went away. I was stable. I was never no evidence of disease. It probably shrank my original tumor about 40% and I’ve been stable since that time.

I was also able to scale my dose back up. By the last couple of years on that TKI, I was taking the full dose again with none of the same serious problems. I was on that first TKI for about five years until I started having some new spots in my left lung.

Then I had radiation. I don’t know what year that was exactly. They were about a year apart from each other. The radiation was targeting a certain spot where they thought they saw growth. Then I was stable and continued to stay on my first TKI.

In mid-2024, we started noticing some more growth in different spots. We were beginning to realize we had probably run out of time on my first TKI and that maybe it was time to switch because there was a newer drug out by that time. Research is so important because if I didn’t make that jump, that would have been it.

I started on my second TKI in August 2024 and that’s what I’m on right now. I have had some questionable scans, but my last scan in Indianapolis read stable.

What life is like on a targeted therapy

I haven’t had a lot of problems with side effects on either drug. I know I had a couple of serious ones off the bat because I was probably taking too big a dose for my body to adjust to it, but then I was able to go back to the full dose.

With the first TKI, I had a lot of bloating, awful constipation, and some sensitivity, but the side effects are nothing compared to the drug working. To me, that’s the most important thing.

When I was out in the sun, I learned to wear sunscreen, a rash guard, and a hat. I got used to how long I could stay out in the sun without burning. I found something to use for the constipation.

The second TKI causes a little neuropathy and tingling in the hands. I live with it, but that went away somewhat. I don’t even notice it now. I have so much more energy on this TKI as well and not as much weight gain. I’m very happy with this, as long as it’s working.

I thought that I would throw everything at it and make sure my body was in optimal position to fight what may come. As we know, it’s terminal, so I’m trying to live as long as I can. I’ve always been pretty healthy. I always exercised and took care of myself, but I’ve taken it to a whole new level now. I’m mostly vegan and eat anything that’s anti-cancer and strengthens my immunity.

I’m considering clinical trials

I came back from a conference in San Diego, where they talked a lot about clinical trials. The ALK+ Summit was there. They have a yearly conference that’s so informative because they have amazing doctors and patients who talk.

Clinical trials are the only way these new drugs will ever come into play. They have to go through trials to be approved so that everyone can benefit. I’ve spoken to my oncologist and though it’s not something we’re necessarily looking for yet, it’s definitely on my mind.

What my biggest challenge has been

My future as a grandma is gone. I have seven grandchildren and I was able to see a lot of them be born since my diagnosis. I feel for the younger moms with kids at home. I’m thankful that I was able to raise my kids.

Cancer is so prevalent everywhere you look now, in younger and younger people, and all kinds of cancers. I can’t say I was necessarily that surprised. I was surprised at what type of cancer I ended up with, but it happens everywhere.

I would love to be on treatment indefinitely if it would last that long and if this could be treated like a chronic illness.

My message of hope

I have my faith. My hope is in my eternity. I realize that life is short. It’s short for all of us. It’s but a vapor. My life here on earth may be cut short, but I live each day to the fullest and try to be kind to everyone. I’m enjoying my family and friends, and I try to have a balance in life with this diagnosis.

I have my main people: my two daughters, my sister, my husband, and my parents. Those are the people whom I feel like I could go to right at the beginning and anytime I’ve needed them.

What I want others to know

Life is short. Take each day as a new chance. Don’t be scared. Don’t live your life in fear. It took me about two years before I was able to not worry anymore. I’m not going to worry about this one more day. I’m going to live like I have all the time in the world.


Shauna D. stage 4 ALK+ lung cancer
Thank you for sharing your story, Shauna!

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More ALK+ Lung Cancer Stories

Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
Shauna D. stage 4 ALK+ lung cancer

Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy
Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy
Stephanie W. feature profile

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B



Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Categories
ALK ALK inhibitor Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments

Allison’s Example of Self-Advocacy Living with Stage 4 ALK+ Lung Cancer

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.

My Stage 4 Lung Cancer Diagnosis Video

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

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.

Allison Z. stage 4 ALK+ lung cancer

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
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung cancer
Allison Z. stage 4 ALK+ lung 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.


Allison Z. stage 4 ALK+ lung cancer
Thank you for sharing your story, Allison!

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More ALK+ Lung Cancer Stories

Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
Shauna D. stage 4 ALK+ lung cancer

Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy
Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy
Stephanie W. feature profile

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B



Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Categories
Chemotherapy Immunotherapy KRAS Lung Cancer Metastatic Non-Small Cell Lung Cancer Patient Stories Treatments

How Wyatt Navigated a Surprise Diagnosis of Stage 4 Lung Cancer

How Wyatt Navigated a Surprise Diagnosis of Stage 4 Non-Small Cell Lung Cancer with KRAS G12D Mutation

When Wyatt found out he had stage 4 lung cancer in early 2021, he had no idea it would reshape not just his health but also his purpose. Diagnosed during the height of the COVID pandemic, Wyatt’s experience navigating stage 4 non-small cell lung cancer with a KRAS G12D mutation has been anything but typical, and he’s turned that into his strength.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

It all started with migraines so intense they’d knock him out for days. Wyatt visited the emergency room multiple times, but doctors told him it wasn’t serious. Then came vision loss and frightening neurological symptoms, so he went to see his neurologist, who told him he had to have his shunt replaced. After a CT scan post-surgery, they spotted the lesions in his lungs.

The initial reassurance of it not being cancer quickly gave way to a life-changing diagnosis: stage 4 non-small cell lung cancer. Wyatt was blindsided. No cough, no pain, no classic signs — just cancer hiding behind confusing symptoms.

Wyatt D. feature profile

From the beginning, Wyatt had to learn the power of self-advocacy. He realized that doctors don’t always connect the dots unless you speak up. At one point, he had to document everything he was eating and throwing up just to be heard. For him, building a relationship with the right oncologist made all the difference.

Living with stage 4 non-small cell lung cancer meant becoming an active participant in his care. Wyatt didn’t know about biomarker testing or what the term “KRAS” meant at first. However, over time, he discovered communities like KRAS Kickers and began connecting with others like himself. That connection was powerful, especially for someone who also lives with HIV and has often felt overlooked in medical settings.

Through trial and error with treatment, Wyatt learned to advocate, adjust, and persist. He’s on his seventh line of treatment now, managing side effects like neuropathy, nausea, fatigue, and chemo brain with humor, creativity, and ginger candy. But what truly fuels him is sharing knowledge and support.

Wyatt’s not just surviving — he’s making sure others don’t have to feel as lost as he once did. He’s working on building an online document of resources, pushing for access and inclusion, and showing up for others. Community has been a lifeline, and Wyatt’s working to strengthen it, one conversation and connection at a time.

Watch Wyatt’s full interview to find out more about his story:

  • Discover how a brain shunt led to an unexpected lung cancer diagnosis.
  • How self-advocacy helped Wyatt reclaim control over his care.
  • Learn why finding the right doctor is more important than just going to a big-name hospital.
  • See how one resource-filled document opened doors Wyatt didn’t know existed.
  • From cancer camps to ginger tea hacks, he shares tips with heart and humor.

  • Name: Wyatt D.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4
  • Mutation:
    • KRAS G12D
  • Symptoms:
    • Intense migraines
    • Vision loss
    • Muscle cramping in the hands
    • Fainting
  • Treatments:
    • Chemotherapy
    • Immunotherapy
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation

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.


Wyatt D. feature profile
Thank you for sharing your story, Wyatt!

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More Non-Small Cell Lung Cancer Stories

Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
Drea C. stage 4 ROS1+ lung cancer

Drea C., Non-Small Cell Lung Cancer, ROS1+, Stage 4 (Metastatic)



Symptoms: Swollen ankle resulting from a deep vein thrombosis or blood clot, mysterious bruising, extreme weight loss, persistent shortness of breath, rattling sound coming from the throat while breathing

Treatments: Radiation therapy, chemotherapy, targeted therapies
Lysa B. stage 4 ROS1+ lung cancer

Lysa B., Non-Small Cell Lung Cancer, ROS1+, Stage 4 (Metastatic)



Symptom: Severe but intermittent back pain

Treatments: Chemotherapy, radiation therapy, targeted therapy (including through a clinical trial), surgeries (lung resection, metastatic spine tumor surgery)
Ashley C. stage 4 HER2+ lung cancer

Ashley C., Non-Small Cell Lung Cancer, HER2+, Stage 4 (Metastatic)



Symptoms: Fatigue, breathlessness, persistent back pain, multiple rounds of bronchitis

Treatments: Chemotherapy, targeted therapy

More Metastatic Lung Cancer Stories

Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
...
Ashley C. stage 4 HER2+ lung cancer

Ashley C., Non-Small Cell Lung Cancer, HER2+, Stage 4 (Metastatic)



Symptoms: Fatigue, breathlessness, persistent back pain, multiple rounds of bronchitis

Treatments: Chemotherapy, targeted therapy
...
Loryn F. stage 4 HER2 lung cancer

Loryn F., Non-Small Cell Lung Cancer, HER2+, Stage 4 (Metastatic)



Symptoms: Extreme fatigue, persistent back pain, chest pain, joint pain in the feet, hips, legs, shoulders, and elbows

Treatments: Chemotherapy, radiation therapy (foot and elbow to help with mobility), antibody-drug conjugate
...
Clara C. metastatic lung cancer

Clara C., Lung Cancer, MSH6, Stage 4 (Metastatic)



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
...
Wyatt D. stage 4 non-small cell lung cancer with KRAS G12D mutation

Wyatt D., Non-Small Cell Lung Cancer, KRAS+, Stage 4 (Metastatic)



Symptoms: Intense migraines, vision loss, muscle cramping in the hands, fainting
Treatments: Chemotherapy, immunotherapy
...

Ashley V., Non-Small Cell Lung Cancer, Stage 4 (Metastatic)



Symptoms: Trouble swallowing, shortness of breath, fatigue, loss of appetite, chest pain, swelling in her body

Treatments: Surgery (removal of lung), chemotherapy, immunotherapy, radiation
...

Categories
ALK Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments

From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

From Foot Pain to Lung Cancer: Kathrin’s Unexpected Stage 4 ALK+ Diagnosis

When Kathrin was diagnosed with stage 4 ALK+ lung cancer in 2024, it came as a complete shock. She didn’t have a cough, chest pain, or shortness of breath — none of the symptoms you’d expect. Instead, it all started with subtle signs: persistent fatigue, frequent illness, and a lingering pain in her left foot that she chalked up to an injury.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Being a fitness professional, Kathrin assumed it was nothing serious, but after the pain worsened, an MRI revealed something unexpected: a tumor in her foot. Initially thought to be benign, the biopsy showed it was a malignant metastasis. From there, a full-body PET/CT scan uncovered the real culprit: stage 4 ALK+ lung cancer, which had already spread to her bones, abdomen, and liver.

Kathrin W. stage 4 ALK+ lung cancer

Despite the shock and the immediate fear of not surviving, biomarker testing provided a silver lining. Kathrin was ALK-positive, making her eligible for targeted therapy. Treatment began with radiation on her foot, followed by a daily ALK inhibitor pill. Within weeks, the treatment produced remarkable results.

Kathrin’s scans looked almost clear, which felt like being handed back her life. She describes this part as surreal, going from imagining death to being filled with hope. While the physical treatment has gone well, the emotional part has been more complex. Even though the cancer was under control, the reality of living with an incurable condition remains. She knows it may come back, so she consciously chooses to focus on what she can control: her mindset, her movement, and her moments of joy.

Exercise has been Kathrin’s anchor. Even during radiation, she kept moving. For her, movement isn’t just fitness; it’s therapy. It’s how she reconnects with herself, processes her emotions, and taps into her inner strength. She emphasizes the importance of staying active, not just for the body but for mental clarity and emotional balance.

Her story highlights a powerful truth: stage 4 ALK+ lung cancer doesn’t always look like what we expect, especially in women. Kathrin’s experience is a reminder of the importance of advocating for your health, listening to your body, and honoring your strength, even when life throws something unimaginable your way.

Watch Kathrin’s full interview to learn more about her story:

  • She had no cough, just foot pain. That’s how her stage 4 ALK+ lung cancer was discovered.
  • Kathrin opens up about the emotional whiplash of a sudden diagnosis.
  • How yoga and exercise became her daily lifeline through stage 4 ALK+ lung cancer.
  • Why Kathrin believes powerful treatments and positivity can change everything.

  • Name: Kathrin W.
  • Age of Diagnosis:
    • 44
  • Diagnosis:
    • Lung Cancer
  • Staging:
    • Stage 4
  • Mutation:
    • ALK+
  • Symptoms:
    • Weakness
    • Decline of performance in sports
    • Depression
    • Pain in left foot
  • Treatments:
    • Radiation therapy
    • Targeted therapy
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung cancer
Kathrin W. stage 4 ALK+ lung 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.


Kathrin W. stage 4 ALK+ lung cancer
Thank you for sharing your story, Kathrin!

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More ALK+ Lung Cancer Stories

Laura R. ALK+ lung cancer

Laura R., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Persistent cough, fatigue, bone pain

Treatments: Targeted therapies (tyrosine kinase inhibitors or TKIs, including through a clinical trial)
Shauna D. stage 4 ALK+ lung cancer

Shauna D., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Persistent dry cough following a cold
Treatments: Targeted therapy (tyrosine kinase inhibitors), radiation therapy
Allison Z. stage 4 ALK+ lung cancer

Allison Z., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptom: Severe back pain
Treatments: Targeted therapy (ALK inhibitors), radiation therapy
Kathrin W. stage 4 ALK+ lung cancer

Kathrin W., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



Symptoms: Weakness, decline of performance in sports, depression, pain in left foot
Treatments: Radiation therapy, targeted therapy
Stephanie W. feature profile

Stephanie W., Non-Small Cell Lung Cancer, ALK+, Stage 2B



Symptoms: Persistent cough, wheezing
Treatments: Surgery (bilobectomy), chemotherapy, targeted therapy

Categories
Chemotherapy Irreversible electroporation NanoKnife Pancreatic Cancer Patient Stories Radiation Therapy Surgery Treatments

Hope in Pancreatic Cancer Treatment: Biomarkers & NanoKnife

How Biomarkers and the NanoKnife Offered Elise New Hope in Her Pancreatic Cancer Treatment

When Elise was diagnosed with stage 4 pancreatic cancer in 2012, she never expected to be utilizing emerging pancreatic cancer treatments. Through biomarker testing and a newer procedure called the NanoKnife, Elise found options—and hope. 13 years later, she describes the experience as “a gift in a strange package,” which shows how she found purpose through pain and resilience despite the hardship.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Elise’s symptoms began with persistent pain, indigestion, and unintentional weight loss. After countless doctor visits, a CT scan with contrast revealed a large tumor near her pancreas, confirming the diagnosis of stage 4 pancreatic cancer. Her relentless push for answers underscores the importance of self-advocacy in healthcare.

Elise T. stage 4 pancreatic cancer

Elise’s experience also highlights the significant role of genetic and molecular testing, commonly called biomarker testing. She was found to be BRCA2-positive (this is a genetic mutation linked to increased cancer risk). This revelation not only clarified her diagnosis but also opened doors to targeted treatments. She received chemotherapy, radiation, and an innovative procedure called irreversible electroporation, which helped eliminate her tumor.

Through it all, Elise’s positive attitude became her anchor. Her doctor’s encouraging words and approach provided her with the mental strength to face each day. This highlights how crucial a doctor’s words can be in shaping a patient’s mindset. Elise’s faith, family support, and the unwavering belief in hope played key roles in her recovery.

Elise’s stage 4 pancreatic cancer story emphasizes the need for advocacy, the importance of biomarker testing, and the power of optimism. She passionately advises others diagnosed with pancreatic cancer to seek second opinions, advocate for themselves, and never give up hope. As she beautifully puts it, “Hope trumps fear.”

Watch Elise’s video and find out more about:

  • How numerous doctor visits turned into a miracle in her fight against stage 4 pancreatic cancer.
  • The simple words from a doctor that transformed Elise’s outlook.
  • Why biomarker testing can be life-changing for cancer patients.
  • How her positive attitude and faith fueled her recovery.
  • The innovative procedure that helped save Elise’s life.

  • Name:
    • Elise T.
  • Age at Diagnosis:
    • 43
  • Diagnosis:
    • Pancreatic Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Severe and persistent back and stomach pain
    • Weight loss
    • Indigestion
  • Treatments:
    • Chemotherapy
    • Surgery: irreversible electroporation
    • Radiation therapy
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic cancer
Elise T. stage 4 pancreatic 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.


Elise T. stage 4 pancreatic cancer
Thank you for sharing your story, Elise!

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More Pancreatic Cancer Stories


Roger R., Pancreatic Cancer, Stage 2



Symptom: None

Treatments: 5FU (folfirinox), Gemzar, NK cell expansion therapy, Dendritic cell expansion therapy, Neoantigen peptide vaccine
Matthew R. feature profile

Matthew R., Pancreatic Cancer, Stage 4



Symptoms: Dark urine, bone white stool, itching on palms and soles
Treatments: Chemotherapy, surgery

Chris P., Pancreatic Cancer, Stage 4



Symptoms: Significant weight loss, stomach and digestive problems

Treatment: Chemotherapy

Jessica B., Pancreatic Cancer, Stage 1B



Symptoms: Upper abdominal pain, nausea, vomiting

Treatment: Surgery (Pancreaticoduodenectomy or Whipple procedure)
Elise T. stage 4 pancreatic cancer

Elise T., Pancreatic Cancer, Stage 4



Symptoms: Severe and persistent back and stomach pain, weight loss, indigestion

Treatments: Chemotherapy, surgery (irreversible electroporation), radiation therapy


Categories
Acute Myeloid Leukemia (AML) Chemotherapy Patient Stories Stem cell transplant Treatments

Acute Myeloid Leukemia (AML) Stories: Mackenzie Navigates with Faith, Joy, and Family

Acute Myeloid Leukemia (AML) Stories: Mackenzie Navigates with Faith, Joy, and Family

Mackenzie P.

Her first symptoms of acute myeloid leukemia (AML) hit Mackenzie in 2023, a medical student, when she experienced excessive bleeding while shaving and noticed an increase in fatigue when working out. Then during a clinical rotation, she suddenly vomited and then passed out. When Mackenzie finally got her diagnosis, she found herself more concerned about how her family members were taking the news.

There was a significant shift in Mackenzie’s diagnosis with the discovery of a biomarker. This provided her and her medical team information about risk levels of things like relapse. Her treatment experience began with induction chemotherapy, leading to remission, followed by two rounds of consolidation chemotherapy as she awaited a stem cell transplant.

While the transplant proved successful, Mackenzie’s leukemia relapsed on a molecular level six months post-transplant. She underwent more chemotherapy, but the treatment was unsuccessful, leading to a full relapse. She faced severe complications during her hospitalization, including pneumonia. Her faith, however, provided a glimmer of hope. After an unsuccessful initial clinical trial, she embarked on a new trial at MD Anderson, holding onto her optimism.

Watch her story and read more below to hear from Mackenzie on many topics:

  1. The importance of clinical trials and how they offer hope to patients, including herself.
  2. How she held onto her optimism even during the most difficult times.
  3. What she found solace in as she learned how to navigate losing her sense of self.
  4. Her top takeaway for others.

  • Name: 
    • Mackenzie P.
  • Age at Diagnosis:
    • 23
  • Diagnosis:
    • Acute Myeloid Leukemia (AML)
  • Symptoms:
    • Shortness of breath
    • Passing out
    • Getting sick easily
    • Bleeding and bruising quickly
  • Treatments:
    • Chemotherapy: induction and maintenance chemotherapy
    • Stem cell transplant
    • Clinical trials

Kura Oncology

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

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



Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Every day, find something to be grateful for. Something that you love. Something that makes you happy, smile, or feel light.

Live for it, no matter what it is.

Introduction

My name is Mackenzie. I’m a medical student.

I was diagnosed with acute myeloid leukemia (AML) in 2023.

Before My Diagnosis

The first time I said, “This is weird, it’s time to get it checked out,” was on the first day of my second year of medical school. I was on a clinical rotation and we were in a patient’s room, but we weren’t performing any procedures. I threw up and passed out. It was quite random and embarrassing. I called my doctor to get blood work done. 

Before that point, though, I had also been experiencing a few suspicious symptoms that I had been pushing to the side. When I shaved, my legs would bleed a little more than they usually did. I realized that it couldn’t have been anything else, like a razor that wasn’t sharp enough.

Additionally, I was an athlete in college and had been finding it harder to work out than I normally did. The passing out was the final straw.

I had been waiting all this time to figure out what was wrong and then to have it confirmed as cancer… it turned my world upside down.

I knew everything was going to change at that point. 

My Diagnosis & Reaction

Because my family is in healthcare, my story might be somewhat different from other cancer patients’ stories. My dad is president of the hospital in my hometown where I got my biopsy, and my stepmom works there, too. Because of that, they got my results through MyChart, which I didn’t have then. Instead of getting a phone call and being told, “Hey, you need to come to the office right away,” I found out that I had cancer through them.

It was a normal Thursday in August 2023. I was back home from a simulation lab and was typing up the History and Physical form for the patient I had seen earlier that day. I heard a knock on the door, and my mom, dad, and stepmom walked in. I knew right away that it wasn’t good news.  

My dad was trying to talk, but he was crying. My stepmom looked at me and said, “It’s leukemia.” Part of me had known it all along, so I was almost prepared for it. But I wasn’t sad — I was mad. I had been waiting all this time to figure out what was wrong and then to have it confirmed as cancer… It turned my world upside down. I knew everything was going to change at that point. 

When I received my acute myeloid leukemia diagnosis, I felt more hurt for my family and friends than for myself. In my line of work, I’ve made a few phone calls to inform other people of their diagnosis and they were very hard to do. My way of coping with this diagnosis for the longest time was trying to make sure that everyone else was okay and show how strong, brave, and optimistic I was. I believed that I was going to get through this, so I needed my friends and family to believe it, too.

Learning My AML Mutation

The doctors tested my bone marrow for different mutations and found out that I have a mutation for AML that means that I have a high risk of relapse. Patients can be at high, moderate, or low risk for relapse. Those at moderate to high risk might need to consider a stem cell transplant or might require a transplant. And I did have to undergo a transplant.

What was worrisome for me was that I had a first cousin who had acute lymphocytic leukemia (ALL) when she was little and a second cousin who had prolymphocytic leukemia (PLL) when he was in his 30s. I was worried for my sister and for my future kids. The doctors took a skin biopsy to try and determine if this mutation developed spontaneously in my leukemia cells or if it was an inherited mutation that was in my DNA. They determined that it was a spontaneous mutation that I won’t be passing down. I just got unlucky and wound up getting cancer. 

I believed that I was going to get through this, so I needed my friends and family to believe it, too.

My Treatment Plan and Remission

Right after my acute myeloid leukemia diagnosis, I started induction chemotherapy to try and get myself into remission. I also had my first long hospital stay. Thankfully, after that, I got into remission and then we waited for my first stem cell transplant. It takes a while to find a donor and coordinate the transplant, so in the interim, I had two rounds of consolidation chemotherapy, each round lasting one week, in the fall of 2023. I was in the hospital for about three weeks during that time. 

I underwent the transplant and afterward, the doctors determined my chimerism. A chimera is an organism whose cells don’t all have the same DNA. When a patient receives a bone marrow transplant, they get stem cells from a donor that contain the donor’s DNA. The patient ends up with a mix of their own and the donor’s DNA. The higher the percentage of donor chimerism in the patient, the more donor cells they have and the better their outcomes could be. I had a 100% chimerism, which means I had 100% donor cells. I was also still in remission at this point.

Relapse

However, six months after my transplant in July 2024, I had a bone marrow biopsy and it revealed that my acute myeloid leukemia had relapsed on a molecular level. The doctors had observed a change in its molecular marker. Further tests found that 0.002% of my cells lit up for leukemia.

I underwent chemotherapy again to try to put me back in remission. I got two rounds of a lower-dose chemo medicine. Neither of them worked; my leukemia kept growing. At a certain point, it got to an 8% blast in my marrow — it was no longer just a molecular relapse but a full relapse.

I was admitted to the hospital again for more induction chemotherapy, but there were complications. I ended up in the ICU with pneumonia. Then, after I got out of the ICU, I had a bone marrow biopsy, which determined that the induction chemo had been ineffective.

I can’t think about my situation too much or it’ll overwhelm me. I have to stay positive. Otherwise, I’ll wallow in hopelessness and doom.

Frustration and Faith

That entire hospital stay was quite unpleasant. I couldn’t breathe on my own. I had to wear an adult diaper. And then after all that, my biopsy results came back and showed that I wasn’t in remission. I felt like I had undergone all of that for nothing. I felt doomed and hopeless. At a certain point, I felt like I was going to die and accepted that.

But my faith gave me some hope. The doctors sent me home and by the grace of God, I got on a clinical trial, which was about four weeks long. The results from that trial were inconclusive — it worked but not all that much. I’m in a new trial at MD Anderson in Texas. I’m still optimistic and I feel that this is where I’m supposed to be and that it’ll get me back into remission.

Having hope and faith has also helped my family get through this. We’re optimistic with every opportunity that God gives us. 

I also realize that I can’t think about my situation too much or it’ll overwhelm me. I have to stay positive. Otherwise, I’ll wallow in hopelessness and doom. My family, friends, and husband matter very much to me, and I need to fight for them.

Clinical Trials and How I Feel About Them

When I got on my first clinical trial, the conversation I had centered around how the chemotherapy regimen I underwent for my acute myeloid leukemia wasn’t working any longer and that other types of chemo were too toxic for my body, especially given how tough my last hospital stay had been.

However, we had previously taken up the subject of clinical trials when I first relapsed and when the disease burden was lighter. Back then, the doctor laid out the chemo regimen and also said that clinical trials were available in case the chemo didn’t work.

A clinical trial is research that tests new ways to find, prevent, and treat cancer. Different trials include treatment, screening, prevention, and supportive care. Clinical trials are not right for everyone, but they can give patients access to the latest treatment options. Patients who join these trials may not have to pay full expenses because researchers may cover the costs, but this can vary. Patients will need to talk to their healthcare providers to understand the options they can access.

When standard treatments don’t work, doctors and patients can see if clinical trials can help. Fortunately, I joined one clinical trial and when that didn’t work, another one was available after I got discharged from my first trial.

Clinical trials make me a little nervous, like being a part of something that no one else has been a part of. But there’s a lot of science and research behind them, and they also start you depending on where you’re at in the trial. If, for instance, you come in right at the start of the trial, you begin with a small dose of the medicine, and as the trial progresses, the doses increase. That’s how they find the best dose of the drug — the effective amount that isn’t toxic or harmful.

I would urge those considering joining a trial to ask questions about it. Both the trials I joined have already been tried in other countries and are now being brought to the USA, so there’s already some data on their effects and how patients have responded to them.

Realize this is bigger than you and out of your control. All you can do is your best.

How I’ve Responded to My Treatments

So far, the more treatments I’ve gotten for my acute myeloid leukemia, the harder it’s gotten for me. I struggle to do something as simple as standing in the kitchen to cut fruit. Sometimes I need to be in a wheelchair to attend appointments or to walk long distances, like in an airport.

That’s very frustrating because I joined three varsity teams in high school, played basketball in college, and was a runner. It’s hard and humiliating, but it also opens my eyes and helps me empathize with others who are dealing with chronic illnesses and who can’t do things the way they want to. 

I try my best. I walk around when I feel good and rest when I need to. I also do chores around the house because those are exercises for me right now. Additionally, I should point out that I’ve been so blessed. My husband, friends, and family know when I need help and take on the little things that I find hard and are a burden to me now. They free me up to enjoy the things that make me happy.

From the perspective of my emotions, there are different stages. The first stage was losing a sense of myself in every aspect of my life. I was no longer a medical student, a runner, or a beautiful wife who goes out with her husband or meets up with her friends. There are lots of parts of me that I feel like I’ve lost and I’m reminded of that every time I look in the mirror. 

When I was first diagnosed, I felt like I could overcome this — it’s not beating me, I’m not going to die from this, I’m going to have a low-risk mutation, I won’t need a stem cell transplant, the chemo is going to work immediately, I’m going to go right back to school. And that’s the second stage

Realize this is bigger than you and out of your control. All you can do is your best. Take care of yourself and your body. That’s when I dove into my faith and gave it all to God. I’m very type A and usually want to have control of my situation. 

My Message of Hope

Every day, find something to be grateful for. Something that you love. Something that makes you happy, smile, or feel light. Live for it, no matter what it is. If you’re having a hard day and your mom makes you feel special, call her to brighten your day. Find something every day that gives you something to fight for.


Kura Oncology

Special thanks again to Kura Oncology for supporting our patient education program. The Patient Story retains full editorial control over all content.


Mackenzie P.
Thank you for sharing your story, Mackenzie!

Inspired by Mackenzie's story?

Share your story, too!


More Acute Myeloid Leukemia (AML) Stories

Shelley G. acute myeloid leukemia

Shelley G., Acute Myeloid Leukemia (AML) with NPM1 Mutation



Symptoms: Fatigue, rapid heartbeat, shortness of breath, low blood counts
Treatments: Chemotherapy, clinical trial, stem cell transplant
Joseph A. acute myeloid leukemia

Joseph A., Acute Myeloid Leukemia (AML)



Symptoms: Suspicious leg fatigue while cycling, chest pains due to blood clot in lung

Treatments: Chemotherapy, clinical trial (targeted therapy, menin inhibitor), stem cell transplant
Mackenzie P.

Mackenzie P., Acute Myeloid Leukemia (AML)



Symptoms: Shortness of breath, passing out, getting sick easily, bleeding and bruising quickly

Treatments: Chemotherapy (induction and maintenance chemotherapy), stem cell transplant, clinical trials

Grace M., Acute Myeloid Leukemia (AML)



Symptom: Headache that persisted for 1 week

Treatments: Chemotherapy, stem cell transplant
Load More

Categories
EGFR Lung Cancer Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Surgery Targeted Therapy The White Ribbon Project Treatments

Jill Feldman’s EGFR Non-Small Cell Lung Cancer Story

Jill Feldman’s EGFR Non-Small Cell Lung Cancer Story

Jill Feldman has become one of the most recognized names in the lung cancer advocacy space, not just for other patient advocates, but also for key lung cancer doctors and researchers.

A dedicated lung cancer advocate from Chicago, Jill’s story begins in her youth, with the losses of her grandparents, father, mother, and aunt to cancer, all within a relatively short time frame. It drove Jill to advocate for lung cancer research and early detection, including through assuming leadership roles at the LUNGevity Foundation.

Then she got her own lung cancer diagnosis.

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez

In 2009, doctors diagnosed Jill with stage 1A lung cancer during routine surveillance she had pursued due to her family’s history. Her EGFR-positive status allowed her to benefit from targeted therapies, and she highlights the critical role of biomarker testing in personalized cancer care. Her cancer responded to the treatment, but returned some years later.

Jill emphasizes the stigma surrounding lung cancer, often tied to assumptions about smoking. She argues that such misconceptions detract from providing patients and families with proper support and compassion. Her advocacy aims to shift the narrative and ensure that every patient receives understanding, regardless of their history.

Jill underscores the importance of building trust and empathy between medical professionals and patients, advocating for clear and compassionate communication throughout the diagnostic and treatment journey. Her advocacy extends beyond her diagnosis. She continues to educate others, including on social media, about lung cancer screening and the advancements in treatment that save lives. Jill believes that empowering patients with knowledge about biomarker testing can help them make informed decisions and feel more in control during a challenging time.

Jill’s personal life remains a source of joy and motivation. She cherishes time spent with family and friends, outdoor activities, traveling, and volunteering. She explores new hobbies and finds solace in giving back to the community that supported her.

Jill’s message focuses on hope, resilience, and the power of advocacy. She encourages others to confront stigma, share their stories, and lean on one another for strength. Her journey, intertwined with loss and triumph, illustrates the importance of raising awareness, fostering empathy, and supporting ongoing research for better treatment outcomes. Jill concludes by reminding listeners that every story holds power and that no one should face their journey alone.


We would like to thank The White Ribbon Project for its partnership.

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

Johnson and Johnson J&J logo

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


  • Name:
    • Jill F.
  • Age at Diagnosis:
    • 39
  • Diagnosis:
    • Non-small cell lung cancer with EGFR exon 19 deletion
  • Staging:
    • Stage 1A
  • Symptoms:
    • Nodule found during periodic scan
  • Treatments:
    • Surgery
    • Targeted therapy
    • Radiation

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

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


Thank you for sharing your story, Jill!

Inspired by Jill's story?

Share your story, too!


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Categories
Adriamycin (doxorubicin) Breast Cancer Chemotherapy Patient Stories Radiation Therapy Taxol (paclitaxel) Treatments

Francina’s Stage 2B Breast Cancer Story

Francina’s Stage 2B Breast Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Francina is a breast cancer survivor, a mother of 2, and a grandmother of 4. She enjoys traveling, going on cruises, and spending time with family and friends. Francina is an advocate for cancer awareness, working with the American Cancer Society Cancer Action Network and the Sister to Sister Alliance to educate communities on cancer prevention and the importance of early detection.

Francina discovered her breast cancer during a routine mammogram. After further tests, she was informed that the mass was cancerous. Despite the shock, she remained calm and turned to her faith, vowing to use her journey to bring glory to God. Her treatment journey included two surgeries, chemotherapy, and radiation, and thanks to biomarker testing, she received a treatment tailored to her specific cancer type. After going through these challenges, she is now cancer-free, and has been so for 6 and a half years.

Throughout her journey, Francina relied on her faith, support from family, and her church community. She credits her strength and positive mindset for helping her fight cancer, as well as the help of a close friend who accompanied her through treatment and recovery. She emphasizes the importance of self-breast exams, early detection, and knowing one’s family medical history.


  • Name: Francina B.
  • Diagnosis:
    • Breast Cancer
  • Staging:
    • Stage 2B
  • Symptom:
    • None
  • Treatments:
    • Surgery: lumpectomy; removal of cancerous sentinel nodes
    • Chemotherapy
    • Radiation

AbbVie
Genmab
Karyopharm Therapeutics logo

Thank you to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.

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



I’m enjoying life.

You know, God has given me another chance and the opportunities afforded me not only enable me to use my voice, but also to enjoy life.

And that’s exactly what I’m doing.

Introduction

My name is Francina. I’m a breast cancer survivor. I am a mother of two, a daughter and a son and a Nana of 4. 2 boys and 2 girls. I am one who loves to travel. I love going on cruises. And I also love spending time with my family and friends. 

I’m also an advocate with the American Cancer Society Cancer Action Network, and also I’m with Sister to Sister Alliance, a support group. We go out into the communities and events like health fairs to empower, to equip, and to enlighten men and women about cancer.

I’m enjoying life. You know, God has given me another chance and the opportunities afforded me enable me not only to use my voice, but also to enjoy life. And that’s exactly what I’m doing.

Pre-diagnosis

Initial Symptoms

Well, I didn’t experience any symptoms. It was my annual routine mammogram, and maybe about a few days, maybe a week later, I got a phone call from my doctor. 

They needed to do another mammogram and also ultrasound because they had seen a mass.

They wasn’t really sure what it was, but they were concerned. 

Diagnosis

So I went and I got my mammogram done. I got my ultrasound done, and I was on my way to the gym.

As soon as I get to the gym, I get a phone call from my doctor that the mass was cancerous. 

And she said, I’m going to set you up with other doctors, you pick what you want and go from there.

… you don’t hear everything that’s being said because you’re still trying to figure out them 3 words. “I have cancer.”

Reaction to the Diagnosis

And so I’m sitting in my car and so I call my pastor and I call her aunt. 

And after that I said, you know what, God? Because I never questioned Him. I never asked Him why. I said, If I’m going to carry this, it’s going to be to Your glory. 

I said, I’m not going to call my children yet because I know they’re going to have many questions. So let me go, wait and see and talk to my doctor, you know, get information so that I can share with them. 

My concern was having to go home and tell my husband. So I went into the gym and I worked out. I went home and my husband was in the bedroom, and I went and told him, and immediately it was negativity. You know, you go there thinking the worst. And so I had to throw my hand up and said, I don’t receive that. And I walked out the room. And so it was a process. 

I had a friend that I went to talk to. I used to take care of her son for 2 and a half years, and he had passed away. So I went to her, you know, and let her know what was going on. And she’s a godsend.

I thought that her son was my reason. No, it was her because she went with me through my whole cancer journey from day 1: treatments, surgery, changing my bandages. I mean, the whole bit. And even took notes that I didn’t even know she had taken. 

Because, you know, when you go to see your doctor and they tell you that you have cancer, you know, your mind is all over the place. And you don’t hear everything that’s being said because you’re still trying to figure out them 3 words: I have cancer. 

Treatment

Options

So my surgeon was very compassionate. He explained everything to me until I understood. He gave me options. 

Then he said, you go home and you pray about it, and you come back and let me know what your decision is. 

Lumpectomy and biopsy

So I elected to have a lumpectomy done. 

And in the process of having the lumpectomy done they found in my sentinel nodes that I had 3 cancerous cells. That means it was outside of the mass. 

And so 2 weeks later, I had to have another surgery where they had to go into my armpit. And you have 3 tiers where they took out 2 tiers of cancers.

And it was clear. Clear margin. So the cancer had not spread. So that was a blessing. 

So then I had to have a biopsy done so they would know what type of cancer I had.

Chemotherapy and radiation

So in the process of finding out what type of cancer I had, I was able to get a treatment that was tailor-made for my specific cancer. So I had the first round. 

I had 4 rounds of chemo every 2 weeks, and then I had to have 12 rounds of another chemo. 

The first chemo was doxorubicin, what we call Red Devil. That’s really a powerful, potent treatment. 

And then I had paclitaxel, which was for 3 months.

After that, I had either 32 or 33 rounds of radiation. 

And from there I was cancer-free. That was 6 and a half years ago. 

Being Cancer-Free

And it was due to biomarker testing that at the time I did not know I had it done. I just found out the early part of this year. And it was that that contributed to the type of treatment that I needed for my specific cancer, which worked. 

And like I said, to God be all the glory because I am cancer-free. I am healed.

And the moment when the doctor pulled me in and said, hey, your scans are clear. Oh, I mean, I was ecstatic, but I already knew because I had a conversation with God, you know, and he gave me 3 words as well. And his 3 words was: I got you. And when God said he got you, he got you. 

So I never was stressed or worried about my cancer journey at all. 

“I had people”

You know, everybody says something different, but it was just the stress mentally, you know, physically and emotionally of going through and the challenges that I had because of it.

I had to stop working, I was no longer able to work. And so in the process, I exhausted my savings. And so I had no health, no health care.

And so I applied for assistance, but I didn’t qualify, and I had no income.

But I had people. 

My social worker was awesome. And she connected me to organizations as well as my niece, because I had a sister that passed away from breast cancer in 2015. So she wasn’t as fortunate.

So I used my voice on behalf of her as well as those that are next to me, but also coming behind me. 

Advice Francina Wants to Share

Get tested

So based on my experience, I now advocate testing. 

You know, we have to advocate. We have to stop being silent, being quiet, and to let people know cancer does not have to be a death sentence. 

Early detection is key. And so, you know, you want to make a point of people to go ahead and get their screenings done. And those that are not old enough to have mammograms to do self-breast exams monthly. 

So I’m about educating and giving information, you know, sharing my story, my journey so that I can help others along the way.

And my advocacy has also extended to me urging my daughter to get tested too. And she does get tested, every 6 months. And I also have a sister on my father’s side who also gets tested. 

My niece also gets tested because it was her mother that passed away, and I’m her aunt. So, you know, you got to look at that connection. So they all are proactive in getting their screenings. They get MRIs and do self-breast exams as well. I have 2 granddaughters I’m trying to teach about doing self-breast checks. 

When we go to health fairs, there are a lot of young adults that are not old enough to get mammograms, don’t know how to do self-breast exams, don’t even know about it. So I’ve asked them, you know, when you go get your physicals, do you talk to your physician? They say, no. 

I said, when you go, you ask them to not only perform it, but to show you how to do it yourself, because a lot of times people find those lumps themselves. Also, they’ll be the first to see a change in their body. 

So they need to know what to look for. So we like to educate and give information so they are aware.

Link with support groups

Connecting with support groups helped, surrounding myself with positive people. And also learning from them about people who beat cancer. Not just seeing the success, but gathering information from them. 

But it was also inspiring to see patients who are now 5 years, 10 years, 20 years cancer free. You know, that was the stuff that gave me something to push forward to. 

That can help you through your journey, because there are a lot of people that have already been through what we’re going through so they can help us.

You know, they can be an encouragement and inspiration to us and also be there to support us.

Cancer doesn’t have me.

I’m going to be in control.

It’s not going to take me. 

Develop a positive mindset

And also having a positive mindset was so important. 

Cancer doesn’t have me. I’m going to be in control. It’s not going to take me. 

I’m going to enjoy my life, you know, and do some of the things that maybe I wouldn’t have normally do. 

But, you know, just to be an inspiration and encouragement to other people that listen, you can fight this, you can beat this, you can overcome this. You can still have quality of life. 

Put your mind to do the things that you want to do, and surround yourself with positive people. Get connected to support groups.

Lean on family and friends 

It was so amazing to be supported by my church family, their prayers, having them rally around you and cheer you on. 

Plus the support from my family was so heartening. Because when I did finally tell my children, my daughter looked at me. Mom, she said, you know, you’re a strong woman, you’re going to beat this. 

My son wanted to run and come to his mama. You know, but they all know that their mama is a fighter.

I’m not one to give up. I’m not one to quit. So I’m going to push. I’m going to press. 

But my daughter, every time I look around, she was leaving Maryland, coming to see about her mama. If I didn’t sound right on the phone, she was there. 

So, like I said, my family means a lot, because they see me doing my journey. But it also helps them too, as we’re creating memories and also leaving legacies that they can follow and continue with.

Be aware of any family history

Another key thing that I tell people is, know your family history. 

See, when I was growing up you didn’t ask questions as a child. So now all your matriarchs and the patriarchs are no longer here.

You know, you don’t have the information. So it has to start from me with educating my children and my grandkids. 

And I’m seeing me when I’m going through and understanding what I do and why I do it.

So with their support and the support of my friends, you know, I’m I believe I’m making a difference.

Learn about biomarkers and why they matter

I also wanted to talk a little bit about biomarkers and their importance. Basically, they get a sample from your tumor and they test it, you know, and then and it determines the type of cancer that you have.

Well, I’m still learning about biomarker testing, but what it did for me was it was able to target the type of cancer that I had. So a lot of people are not aware that they’ve had it done because, you know, you didn’t hear of it. Even my doctors, they didn’t tell me anything about biomarker testing. 

It was my advocacy group that was discussing it because it’s something that we’re trying to get out there trying to talk with our lawmakers. Making that a policy. We’re not there yet. So we’re trying to get petitions and we’re educating, you know, our lawmakers. With personal stories. 

That’s something that we could bring to the table when it comes to insurance companies, because right now, a lot of insurance companies will not pay for it because they feel that it’s experimental. But when you got these positive outcomes from people who have had it done to me, you know that makes it makes a difference.

So now they can go back and see, okay, what treatment would be best to combat this type of cancer. And so for me, that’s what they did.

So the regimen that I was on, even though it was hard, it was something that did what it needed to do. And that’s why I am cancer-free because it was targeted for my specific cancer. 

It’s cost effective because, if you really don’t know what you what you’re dealing with, you don’t really know what type of treatment is best for that. You’re trying different regimens and it puts a lot of stress and strain on the patient. 

But if you’re a doctor and you know something is targeted that this is going to work for this type of cancer, if you use this type of treatment, this medication, then, okay, you’re saving your patient, but you’re also giving that that person quality of life and also extending their life.

I want everybody to be advocates for themselves.

Because who knows your body better than you do? 

Advocate for others—and yourself

Let me finish by sharing the most important efforts in the work I’m doing with the American Cancer Society when it comes to the black and African American community. 

Bringing about awareness, equipping them, empowering them to get out there and to do what they need to do for themselves. Leading by example. Sharing my story with them and letting them know. 

Again, cancer is not a death sentence. Early detection is key. We must get out there and do our screenings, and also do our monthly breast exams, and not allow fear to keep you from getting the care.

Because everybody deserves to have some type of quality care.

I want everybody to be advocates for themselves. Because who knows your body better than you do? 

And sometimes you go to doctors and you tell them things are going on and they push you off. And my thing is, if you go to a doctor and they cannot do what you’re asking or requiring them to do, go somewhere else where somebody will. 

Because there are people that have been diagnosed and they’re already stage 3. Stage 4. Whereas if they would have had it done initially, they may have caught it earlier. 

So we have to also be advocates for ourselves. We deserve to have care. We deserve to be listened to and to be understood.

AbbVie
Genmab
Karyopharm Therapeutics logo

Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.


Thank you for sharing your story, Francina!

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Categories
Chemotherapy Immunotherapy Lung Cancer Metastatic Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Treatments

Ashley’s Stage 4 Non-Small Cell Lung Cancer Story

Ashley’s Stage 4 Non-Small Cell Lung Cancer Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Ashley, a 36-year-old mother of two, living in Northern California, shares her experience of being diagnosed with stage 4 non-small cell lung cancer.

Ashley had initially experienced trouble swallowing, chest pain, shortness of breath, fatigue, and swelling in her body. Prior to her diagnosis, she dealt with repeated misdiagnoses and medical gaslighting. Specialists brushed off her symptoms as due to work stress or anxiety, or misdiagnosed her with conditions like asthma, pneumonia, and long COVID. It wasn’t until a trip to the emergency room, where doctors discovered blood clots and conducted a CT scan, that her lung cancer was revealed. It took Ashley by surprise; she had no history of smoking and was otherwise healthy and very active and athletic.

Ashley reflects on the biases in healthcare, particularly against people who don’t fit traditional risk profiles for lung cancer. She explains how her healthy appearance and lack of smoking history contributed to doctors dismissing her symptoms for over a year. She believes that this is a systemic issue in healthcare, not just individual doctors’ fault. This is why she advocates for the importance of self-advocacy and trusting one’s body.

After her diagnosis, Ashley underwent chemotherapy, radiation, surgery to remove one lung, and immunotherapy treatments. She notes the importance of biomarkers in determining treatment for lung cancer. She does not have any biomarkers, which limited her options to immunotherapy, radiation, and chemotherapy. Her experience included serious side effects, including liver failure from immunotherapy. She had to stop immunotherapy and explored other treatment options, including clinical trials and further radiation therapy.

Ashley emphasizes the need for patients to advocate for themselves and seek second opinions. She shares her experience with various doctors, particularly the importance of one doctor making eye contact and truly listening to her concerns, which helped her feel validated.

Ashley’s journey has taught her the value of mental health support, palliative care, and integrative services, such as physical therapy and nutrition. She highlights the importance of having a support system, both in terms of healthcare providers and loved ones, to navigate the complexities of cancer treatment. Despite the challenges, Ashley remains proactive in managing her care and encourages others to stay informed and engaged in their treatment.


  • Name:
    • Ashley V.
  • Diagnosis:
    • Non-small cell lung cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Trouble swallowing
    • Shortness of breath
    • Fatigue
    • Loss of appetite
    • Chest pain
    • Swelling in her body
  • Treatments:
    • Surgery (removal of lung)
    • Chemotherapy
    • Immunotherapy
    • Radiation

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

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


Thank you for sharing your story, Ashley!

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