Author: Chris Sanchez

Categories
CAPOX (capecitabine, oxaliplatin) Chemotherapy Colon Colorectal Patient Stories Surgery Treatments

Mark’s Experience with Stage 3B Colon Cancer

Mark S. feature profile

Intuition, Self-Advocacy, and Support: Key Lessons from Mark’s Experience with Stage 3B Colon Cancer

Mark found out he had stage 3B colon cancer at 35, a life-altering diagnosis. He began having cramping episodes of varying intensity in 2020. Doctors initially mistook these for appendicitis. However, his intuition pushed him to get more tests. His hunch proved correct after a colonoscopy revealed a tumor that was later confirmed as cancerous.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Mark had surgery to remove a section of his intestines and several lymph nodes. Although his stage 3B colon cancer was negative for a genetic component like Lynch syndrome, it had spread to his lymph nodes, making chemotherapy necessary. Mark had to choose between a prolonged or intense chemo regimen and opted for the latter, enduring side effects like neuropathy and fatigue. 

Mark S. feature profile

The physical challenges Mark had to overcome and the psychological strain of accepting help reshaped his outlook on life. After his treatment for stage 3B colon cancer, he was declared to have no evidence of disease in 2021. Mark now shares his story to raise awareness of cancer and inspire others.

Watch Mark’s story to find out more about:

  • The value of trusting one’s instincts and surrounding oneself with a supportive network.
  • Developing a more mindful approach to life and health maintenance through emphasizing physical fitness and intuition.
  • The importance of self-advocacy in health.
  • The significance of maintaining low stress and cherishing every moment.
    • Name:
      • Mark S.
    • Age at Diagnosis:
      • 35
    • Diagnosis:
      • Colon Cancer
    • Staging:
      • Stage 3B
    • Symptom:
      • Intermittent cramping of varying intensity, localized on the right side
    • Treatments:
      • Surgery: colon resection
      • Chemotherapy
    Mark S.
    Mark S.
    Mark S.
    Mark S.
    Mark S.
    Mark S.
    Mark S.

    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.

    Mark S. feature profile
    Thank you for sharing your story, Mark!

    Inspired by Mark's story?

    Share your story, too!

    More Colon Cancer Stories

     
    Danielle shares her stage 4 metastatic colon cancer
    Danielle A., Colorectal Cancer, Metastatic Stage 3
    Symptoms: Abdominal pain, constipation
    Treatments: Surgery, Chemotherapy
    Angelica A., Bowel Cancer, Stage 3

    Symptoms: Fatigue, anemia, irregular bowel movements, loss of appetite, heavy periods
    Treatments: Laparoscopy, chemotherapy, partial hysterectomy
    Jason Randall describes his colon cancer journey
    Jason R., Colorectal Cancer, Stage 4
    Symptoms: Abdominal pain, constipation, belly button discharge
    Treatments: Liver surgery, chemotherapy, radiation
    Amanda G. feature profile

    Amanda G., Colon Cancer, Stage 2A



    Symptoms: Gurgly stomach, blood in stool, chronic constipation
    Treatment: Surgery (hemicolectomy), chemotherapy (CAPOX), Zarxio
    Haley P. feature profile

    Haley P., Colon Cancer, Stage 3C



    Symptoms: Constipation, fatigue, shortness of breath
    Treatment: Surgery, chemotherapy

    JJ S., Colorectal Cancer, Stage 4



    Symptoms: Abdominal pain, blood in stool



    Treatment: Surgery to remove tumor, chemotherapy, clinical trial of Keytruda (pembrolizumab)
    Categories
    Alimta (pemetrexed) Avastin (bevacizumab) Carboplatin Chemotherapy Lung Cancer Non-Small Cell Lung Cancer Patient Stories Targeted Therapy The White Ribbon Project Treatments Xalkori (crizotinib)

    Luna’s Stage 4 ROS1+ Non-Small Cell Lung Cancer

    Luna O.

    Hope and Health: Luna’s Experience With Stage 4 ROS1+ Non-Small Cell Lung Cancer

    Luna, a retired genetic counselor, was diagnosed with stage 4 lung cancer (non-small cell adenocarcinoma of the lung, ROS1+) in December 2012 at age 54, despite having no lung symptoms before diagnosis. She shares her story of discovery, her reaction to hearing that she had cancer, and the steps she and her medical team took afterwards. 

    Interviewed by: Taylor Scheib
    Edited by: Chris Sanchez

    The diagnosis was unexpected, as Luna had been active and healthy, with no risk factors for lung cancer. Her initial reaction was shock, but she subsequently maintained a practical approach, focusing on treatment options. 

    Luna underwent traditional chemotherapy and later got tested for the EGFR and ALK genetic mutations, for which she turned out to be negative. However, her doctors discovered that she had the ROS1 mutation. She was then given a targeted oral chemotherapy medicine that eventually stabilized her stage 4 lung cancer. 

    Luna finds hope and positivity crucial in managing her health, establishing a strong support system, and encouraging biomarker testing for comprehensive treatment plans. She emphasizes the importance of a positive attitude, a balanced lifestyle, and gratitude. Luna wishes to raise awareness about lung cancer, especially among non-smokers, and supports broader screening programs.

    • Name: 
      • Luna O.
    • Age at Diagnosis:
      • 54
    • Diagnosis:
      • Non-Small Cell Lung Cancer (Adenocarcinoma of the Lung)
    • Mutation:
      • ROS1+
    • Staging:
      • Stage 4
    • Symptom:
      • None involving the lungs; severe abdominal pain
    • Treatments:
      • Chemotherapy
      • Targeted therapy

    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 to make 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.

    Table of Contents
    1. Introduction
    2. Before My Diagnosis
    3. My Stage 4 Lung Cancer Diagnosis
    4. How I Reacted
    5. Liver Biopsy
    6. My Treatments and Further Testing
    7. Hope is a Part of My Vocabulary
    8. It’s Crucial to Have a Positive Attitude
    9. My Identity Has Shifted Due to My Stage 4 Lung Cancer Experience
    10. What I Want People to Know About Lung Cancer

    So much of it is an attitude of gratefulness. I feel gratitude every single day, and that feeling keeps me going for tomorrow. 

    Introduction

    I was diagnosed in December 2012 at the age of 54 with stage 4 lung cancer. I had a small lung tumor, but my liver was loaded, and it had seeded many of my bones.

    My husband is a pediatrician. We’ve been married for 38 years. We have two adult children, Nathan and Nina, and two grandsons, Nori and Kai. I used to be a genetic counselor and worked in pediatrics, prenatal genetics, and public health genetics. In 2024, I retired after 41 years of genetic counseling.

    I’m grateful because I have such an incredible village of friends and family who’ve supported me not only after my cancer diagnosis but also pretty much throughout my life.

    Before My Diagnosis

    My stage 4 lung cancer diagnosis has a somewhat unusual history. I’ve never had any lung symptoms. 

    The week before my diagnosis, my family and I traveled to Machu Picchu in Peru. I had been training because I didn’t want to hold my family back. At the time of this trip, I was probably the fittest I had been in 20 years.

    Two days after returning from that trip, I began to experience severe abdominal pain. I was convinced it was due to drinking contaminated water during my travels. I had to visit the ER. There, the doctors performed imaging and discovered that I had advanced cancer.

    I’m grateful because I have such an incredible village of friends and family who’ve supported me not only after my cancer diagnosis but also pretty much throughout my life.

    My Stage 4 Lung Cancer Diagnosis

    There was a small tumor in my lung. My liver was loaded and most of my bones had tumors in them as well. 

    We didn’t know how my stage 4 lung cancer started at the time, but I had no symptoms. No shortness of breath, nothing. I did experience some aches when I was training, but I thought they were due to my age and physical activity, so I brushed them off.

    How I Reacted

    The ER doctor took a long time to get back to my husband and me. I later learned from a friend of ours who works in the ER that this physician was looking at my imaging. He was having trouble coming in to talk to us about the findings.

    When he finally did come in, he said, “We found lesions in your lung, liver, and bones. We’d like to admit you so we can figure out where these tumors came from.” 

    I said, “Time out. Are you telling me that I have cancer?” And he said, “Yes.” He never said the word itself.

    I was stunned and couldn’t believe what he said. I was such a low-risk person for lung cancer and had always been such a healthy person. Again, we did not know how it started at the time. So, I was admitted for a couple of days and had lots of blood tests and more imaging.

    I had no risk factors. Back then, I didn’t know that people who never smoked could still get lung cancer. I didn’t know enough about cancer itself, even about the stages of cancer. I was in that place of ignorant bliss. We were sitting with our friend who’s a surgeon and my husband was crying. I was so sad and said, “Don’t cry. Maybe this isn’t a big deal.” However, our friend said, “It is a big deal.”

    That was good for me to hear. Here I was in this la-la land, thinking I could get over this and that it would go away. I got a pit in my stomach for the first time, but I wasn’t upset. I was grateful that he put it on the line like that for me. I’m a practical person and don’t want to read between the lines, so you don’t have to talk to me with a lot of fluff. Just tell me what’s happening.

    I think I cried too because I was making everybody so sad. I think it’s somewhat cultural. My family is Japanese, so we want to know what the next step is with the realization that there is a circle of life and everything proceeds from one step to the next. I had this more practical approach to my stage 4 lung cancer diagnosis.

    I was stunned and couldn’t believe what he said. I was such a low-risk person for lung cancer and had always been such a healthy person.

    Liver Biopsy

    The next step was to do a biopsy. In 2012 and early 2013, they had just started testing for tumor markers. At the time, there were only two. Now, there are many more. However, two gene mutations were treatable with oral chemotherapy: EGFR and ALK.

    We did a liver biopsy. I was hoping I would be positive for one of the mutations because the thought of having to take a pill a couple of times a day for my stage 4 lung cancer was appealing to me. However, I tested negative for EGFR and ALK. That was in mid-December to the end of December, about two or three weeks later. We had done all this testing, but we hadn’t done anything to fight the cancer.

    My Treatments and Further Testing

    Chemotherapy

    I was getting anxious that my cancer was continuing to progress and I wanted to get something going. When we got the negative biomarker test results, I started traditional chemotherapy, a three-medication regimen. 

    My insurance hadn’t approved one of the medicines by the time I got to the chemo room. I would have to put it on my credit card. The cost stunned me — $7,800 for one dose. But if my insurance approved it and the practice received payment, I would be reimbursed.

    I said, “Why don’t I just wait? I’ll come back and get that third dose when our insurance approves it.” My husband said, “No, no, no, we’re going to put it on the credit card.” But I said no. If worse came to worst, I didn’t want to leave any debt. Eventually, we put it on our card and my insurance ended up reimbursing us.

    I had two rounds of that chemotherapy regimen and experienced all the classic side effects. Then when we did follow-up imaging, the doctors found that my stage 4 lung cancer had progressed, so the regimen wasn’t helping me at all. That’s when my doctor suggested that I get tested for this newly described gene mutation: ROS1.

    I had no risk factors. Back then, I didn’t know that people who never smoked could still get lung cancer. I didn’t know enough about cancer itself, even about the stages of cancer.

    ROS1 Testing

    ROS1 was new at the time and back then, they thought that it accounted for about 1% of people with adenocarcinoma of the lung. I thought, okay, that means a 99% chance that I won’t have this.

    When I tried to get the pre-authorization from my insurance, they declined my request because I had already undergone gene testing for ALK and EGFR. It was going to cost thousands for us out of pocket. Again, my concern was not to leave debt in case things got bad. My husband and oncologist talked me into it. They said, “If you do have it, there’s an oral chemotherapy for it.”

    The good news is that I was able to get this biopsy and turned out positive for ROS1. 

    Luna O.

    In the last several years, every oncologist worth his or her weight in gold has been doing biomarker testing.

    Targeted Therapy and Successful Treatment

    We wrangled with our insurance company and eventually got them to agree to cover my new medication, a targeted chemotherapy medicine. I’ve been on it for almost 12 years now and it’s controlling my stage 4 lung cancer. I ended up responding well to the medication and am among a handful of people who are getting long-duration on this oral chemotherapy.

    There’s a bit of a backstory to it. Initially, the lab report came back saying that I was ROS1-positive. That was when we started scrambling. My doctor split the sample and sent it to another laboratory and the people there got back to us and said I was not ROS1-positive after all.

    My oncologist called the director of the laboratory that conducted the test. They ran the test again and published a report saying that I was positive after all and that there had been a lab error. Once I got that reassurance from two separate labs that I had this mutation, I felt very confident.

    The good news for me was that once I started taking this oral chemotherapy, I had tumor shrinkage. All my other biomarker tests went down within normal limits within a few weeks. 

    Currently, there are some side effects that I must manage, but I’m alive and my stage 4 lung cancer has been stable for going on 12 years. I’ve been lucky. I’ve had a bad disease that I’ve managed with good medicine and a lot of luck.

    In the last several years, every oncologist worth his or her weight in gold has been doing biomarker testing. When I was first diagnosed, some oncologists were hesitant about it because they were waiting to see if it panned out. I get that because there were a lot of testing things that didn’t pan out in cancer, but this one was real.

    At that time, when I was talking to fellow patients, I would urge them to get a young oncologist, someone who had training in their fellowship with genetics. Now, I don’t feel the need to say that because almost all oncologists will test for it.

    There are a lot of people who have asked me, ‘Do you ever wonder: why you?’ I flip that a little bit and say, ‘Why not me?’

    Hope is a Part of My Vocabulary

    Throughout my experience, I kept repeating this mantra: “I need a little more time.”

    I felt that way because my kids were just being launched. They were in their early 20s and I felt like they were adults already, but I needed to let them know a few more things before I could check out and know that they were going to be okay. I did whatever I could to get a little more time with them. 

    Hope was wrapped up in all of that, but I also became very type A about my medications, vitamins, and exercise. I worked toward that mind, body, spirit triad, and its balance. That need for balance was my hope for my future.

    It’s Crucial to Have a Positive Attitude

    My recommendation for those facing stage 4 lung cancer and other cancer patients is to have a positive attitude.

    When I started living longer than my “expiration date,” I wanted to be the healthiest-looking sick person I know. I planned to eat right, get enough sleep, and exercise every day. What happened to me when I got this new attitude was that I almost transformed. I felt much more positive about life, that I was not going to die of cancer, and that maybe I should get mammograms and restart my statin because I could die of something else. 

    So much of it is an attitude of gratefulness. I feel gratitude every single day and that feeling keeps me going for tomorrow. It is a positive way of looking toward the future.

    The only risk factor I have for lung cancer is that I have lungs.

    My Identity Has Shifted Due to My Stage 4 Lung Cancer Experience

    When I’m by myself, other than making sure I take my medications at the right time of the day, I don’t think about being a cancer patient. There are a lot of organizational things I must do, like scheduling CT scans and MRIs and taking care of my insurance. Those tasks eat up a fair amount of my week. 

    But do I identify as a cancer patient? I guess I do because when someone tells me they have cancer, especially if it is lung cancer, it automatically establishes a connection. I want to get to know them and their story as well. I guess when I think about it, I do identify as a cancer patient, specifically a lung cancer patient.

    Moreover, when someone tells me that they are a ROS1 lung cancer patient, they get a hug. I joined a Facebook group called The ROS1ders. We are a small group because only 1% to 2% of individuals with lung cancer have a ROS1 mutation. In August, about 50 of us met in Colorado. We shared stories and contact information so that we could be in touch with each other.

    Lung cancer can happen to anybody. 

    There are a lot of people who have asked me, “Do you ever wonder: why you?” I flip that a little bit and say, “Why not me?” I feel that I’m human and vulnerable to disease, a very practical person, and a realist in terms of everybody eventually dying of something, so I never took it personally. 

    It’s better for me because I think there’s so much stigma surrounding smokers. Even if I were a smoker, I still wouldn’t deserve to have lung cancer. Some of my nurses have asked me, “Do you smoke?” My response is, “No, why do you ask?”

    I try to educate them that roughly 40% of us have never smoked and the only risk factor I have for having lung cancer is that I have lungs. I don’t know why I have it. There’s an uptick in Asian women who have lung cancer. Maybe it has something to do with our pollution and that kind of thing, but there’s no single thing that I can put my finger on, so why not me?

    What I Want People to Know About Lung Cancer

    Lung cancer can happen to anybody. 

    I’m very supportive of screening programs. The current screening criteria are very narrow. You must have smoked for many years and be over 50. But if you’re concerned, if you have a family history, or if you qualify for screening, have testing done because lung cancer is a very treatable condition in its early stages.

    Don’t just brush off any symptoms you might have. Seek medical care, take things in stride, and be brave and strong.

    Johnson and Johnson J&J logo

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

    Thank you for sharing your story, Luna!

    Inspired by Luna's story?

    Share your story, too!

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    Additional Cancer Stories


    Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



    Symptoms: Persistent cough (months), coughing up a little blood, high fever, night sweats
    Treatments: Chemotherapy (4 cycles), maintenance chemo (4 cycles)
    ...

    Tara S., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)



    Symptom: Numbness in face, left arm and leg

    Treatments: Targeted radiation, targeted therapy
    ...

    Categories
    Chronic Diseases Crohn's Disease Patient Stories Proctocolectomy Surgery Treatments

    Dana’s Path to Living with Crohn’s Disease (IBD)

    Resilience and Recovery: Dana’s Path to Living Fully with Crohn’s Disease (IBD)

    In 2010, at the age of 15, Dana was diagnosed with Crohn’s disease (IBD) after experiencing severe gastrointestinal symptoms and significant weight loss. Initially mistaken for a minor issue following wisdom tooth surgery, her symptoms later on escalated, leading to a referral to a gastroenterologist. The diagnosis was ultimately confirmed via a colonoscopy after hospitalization due to severe anemia.

    Interviewed by: Nikki Murphy
    Edited by: Chris Sanchez

    Dana’s experience with Crohn’s disease has been complex and difficult, involving various medications and surgeries. Early treatments began with corticosteroids to manage immediate symptoms, followed by oral immunosuppressants and, later, more intensive IV medications. While one of these medications induced remission for a few years, side effects later made it necessary to try different medications. Unfortunately, some of these proved less effective, resulting in her symptoms progressing.

    Dana’s condition then developed a complication known as stricturing disease or colon stricture, during which the intestines narrow and scar during the healing process. This led to her first colon resection surgery in 2014. Despite trying newer medications called biologics, she faced increasing complications, requiring a visit to Mayo Clinic. There, specialists recommended another biologic similar to her initial successful treatment, but it also failed to deliver the desired results.

    Dana subsequently faced fibrosis and severe narrowing throughout her colon and rectum. Her doctors then decided to perform an ileostomy, removing her entire colon and rectum. This significant surgery, involving a proctocolectomy and reconstruction of her pelvic floor, was daunting but ultimately transformative for Dana. It alleviated years of pain and allowed her to reclaim much of her life. However, adapting to an ostomy accordingly presented new challenges, including managing supplies and preventing leaks while dealing with skin reactions to adhesives.

    Dana acknowledges the lifelong changes and planning necessitated by Crohn’s disease, impacting spontaneity but ensuring she can continue participating in life fully. She emphasizes the importance of community and support networks, both online and locally, to combat the isolation that can accompany living with a chronic illness. Her relationship with her husband stands as a testament to resilience and ability to adapt, as it has grown stronger through their shared challenges.

    Despite the difficulties she has faced, Dana remains hopeful, advocating for a positive mindset and the benefits of connecting with others in similar situations. She encourages those also facing Crohn’s disease and similar conditions to understand that life can continue meaningfully and fully, with even greater appreciation for health and connections.

    • Name: 
      • Dana D.
    • Age at Diagnosis:
      • 15
    • Diagnosis:
      • Crohn’s Disease (a type of Inflammatory Bowel Disease or IBD)
    • Symptoms:
      • Abdominal pain
      • Diarrhea
      • Blood in stool
    • Treatments:
      • Surgeries: colon resection, total proctocolectomy with end ileostomy,
        abdominal perineal resection, myocutaneous flap
      • Steroids
      • Biologic therapy

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

    Thank you for sharing your story, Dana!

    Inspired by Dana's story?

    Share your story, too!

    Understanding IBS, IBD, and Colorectal Cancer Symptoms

    More Crohn’s and Colitis Stories

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    Categories
    Appendix Cancer Chemotherapy Cytoreductive surgery (CRS) HIPEC (Hyperthermic Intraperitoneal Chemotherapy) Patient Stories Pseudomyxoma peritonei (PMP) Surgery Treatments

    Mike’s Unwavering Resolve Helps Him Meet the Challenges of His Rare Cancer of the Appendix

    Mike’s Unwavering Resolve Helps Him Meet the Challenges of His Rare Cancer of the Appendix

    In 2024, Mike, who hails from Dallas, was diagnosed with pseudomyxoma peritonei (PMP), a rare cancer of the appendix. He initially experienced pain in his lower right abdomen, which he thought was appendicitis. Despite his inclination to “tough it out,” the unusual pain led him to seek urgent care treatment. He was redirected to the emergency room, where a CT scan revealed that his appendix had grown significantly. Fearing surgery costs, he hesitated about ambulance transport but was eventually taken to the hospital, where his greatest fear came true: doctors discovered a cancerous tumor on his appendix after surgery.

    Interviewed by: Taylor Scheib
    Edited by: Chris Sanchez

    The emotional toll of the rare cancer diagnosis was immense. Mike received the news through a Friday afternoon call from his surgeon, leaving him terrified and thinking about his young family. However, he embraced the challenge, despite his uncertainty about the appendix cancer’s aggressiveness or spread. Over the weekend, without concrete answers about his prognosis, he prepared himself mentally for what lay ahead.

    Mike’s oncologist was methodical, undertaking extensive diagnostic procedures, and ensuring a comprehensive understanding before deciding on treatment. This process included blood tests, scans, and eventual HIPEC surgery, which involved administering chemotherapy directly into the abdominal cavity. Despite Mike’s athletic background, his recovery after surgery proved unexpectedly challenging, requiring him to relearn basic physical functions such as walking. Additionally, the surgery significantly impacted his digestive system, leading to issues like the overproduction of stomach acid.

    Despite his rare cancer and all these trials, Mike’s resolve never wavered. He concurrently focused on recovery, which involved dietary adjustments and light physical activities, gradually rebuilding his body and health. His weight fell dramatically after surgery, but with determination, proper nutrition, and incremental physical activities, he gained back 20 pounds.

    Throughout his journey, a strong support system comprising his wife and daughters proved invaluable. This support, along with a shift in perspective, enabled him to appreciate life more deeply. He began to view his diagnosis as an opportunity rather than a setback. This shift in mindset also influenced his professional life, as he redirected his fitness business towards helping cancer survivors regain both physical and mental health.

    As he navigates life after his rare cancer treatment, Mike remains mindful of potential recurrence, with scheduled scans keeping him vigilant. The experience instilled in him a renewed appreciation for every moment and an unwavering belief in the body’s resilience. He advises others facing similar challenges to maintain a positive outlook, stay active, and continue moving forward, not just physically but also mentally and spiritually. His story is about resilience, transformation, and finding strength in adversity.

    • Name:
      • Mike L.
    • Age at Diagnosis:
      • 36
    • Diagnosis:
      • Rare Cancer of the Appendix: Pseudomyxoma peritonei (PMP) – low-grade appendiceal mucinous neoplasm)
    • Symptom:
      • Pain in the lower right quadrant of the abdomen
    • Treatments:
      • Chemotherapy
      • Surgery: cytoreductive surgery

    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, Mike!

    Inspired by Mike's story?

    Share your story, too!

    More Appendix Cancer Stories

    Lindsay B. feature profile

    Lindsay B., LAMN Appendix Cancer



    Symptom: Increasing urge to urinate

    Treatments: Cytoreductive surgery (CRS), Hyperthermic Intraperitoneal Chemotherapy (HIPEC)

    Faye L., Pseudomyxoma Peritonei (Rare Appendix Cancer)



    Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers

    Treatments: Chemotherapy, surgery

    Alli M., Appendix Cancer, Stage 4



    Symptom: Severe abdominal pain

    Treatments: Surgeries (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy

    Ariel M., Appendix Cancer, Stage 4, High-Grade



    Symptom: Sharp pain with gas & bowel movements

    Treatments: Surgery (radical hysterectomy), chemotherapy, PIPAC clinical trial (pressurized intraperitoneal aerosol chemotherapy)

    Hannah R., Appendix Cancer, Stage 4



    Symptoms: Bloating, fullness, UTIs, blood in urine, pain during intercourse, high blood pressure, spotting

    Treatments: Surgery (appendectomy, cytoreductive surgery), chemotherapy, radiation (to treat recurrence)
    Categories
    Chemotherapy Colon Colorectal KRAS Patient Stories Surgery Treatments

    Bill’s Stage 4 Colon Cancer is Incurable, But He’s Living His Life on His Own Terms

    Bill’s Stage 4 Colon Cancer is Incurable, But He’s Living His Life on His Own Terms

    Bill shares his harrowing yet inspiring journey with stage 4 colon cancer. He had noticed blood in his stools for several weeks, symptoms which he initially dismissed. However, his wife Lisa, who is a nurse and familiar with such symptoms, urged him to get a colonoscopy. This led to the discovery of a cancerous tumor on his colon that had spread to his liver.

    Interviewed by: Nikki Murphy
    Edited by: Chris Sanchez

    Bill’s resolve was accordingly tested by this daunting diagnosis, which was revealed a day before his 44th birthday. Faced with the financial and emotional burden of his illness, he contemplated the implications of fighting a potentially unwinnable battle. Nevertheless, he decided to give everything he had to fight against his colon cancer.

    Bill and his family decided to seek treatment for his stage 4 colon cancer at Mayo Clinic. He suggested to his doctors the possibility of performing a double surgery to address the colon and liver tumors simultaneously, to which they later agreed. Following this, Bill began six rounds of chemotherapy in Pennsylvania before eventually returning to Mayo Clinic for surgery. His surgeries, performed laparoscopically, went smoothly, allowing for a quick recovery. He remained proactive in his treatment, opting for continuous monitoring through blood work and CT scans to catch any recurrence early.

    Despite a successful initial treatment, Bill subsequently encountered recurrent tumors in his liver and additionally in his lungs. His doctors had to perform additional surgeries and chemotherapy to treat these new tumors. But Bill maintained his steadfast resolve throughout these succeeding treatments.

    Bill’s story took a new direction when a blood test subsequently revealed that his stage 4 colon cancer was incurable. Despite the grim prognosis, he researched and pursued clinical trials and new treatments, continually fighting to stay ahead of the disease. Bill’s situation took another turn when doctors discovered a brain tumor, leading to a Gamma Knife surgery at Mayo Clinic, which he endured while remaining optimistic.

    Bill embodies resilience and a fighting spirit, refusing to let his metastatic colon cancer dictate his life. He emphasizes the importance of embracing the difficult moments and not letting the hard days define him. Humor, strength, and unwavering determination to outlive the statistics mark his journey. As he faces ongoing chemotherapy and lifelong maintenance treatment, Bill also remains focused on writing his own narrative. His stage 4 colon cancer notwithstanding, he is determined to create his legacy and live life on his own terms.

    • Name:
      • Bill I.
    • Age at Diagnosis:
      • 43
    • Diagnosis:
      • Colon Cancer
    • Staging:
      • Stage 4
    • Symptom:
      • Blood in stool
    • Treatments:
      • Chemotherapy
      • Surgery

    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, Bill!

    Inspired by Bill's story?

    Share your story, too!

    More Colon Cancer Stories

     
    Raquel A. feature profile

    Raquel A., Colorectal Cancer, Stage 4



    Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
    Treatment: Chemotherapy

    Steve S., Colorectal Cancer, Stage 4



    Symptoms: Blood in stool, changes in bowel habits, feeling gassy and bloated

    Treatments: Surgery, chemotherapy, monoclonal antibody, liver transplant
    Jessica T. feature profile

    Jessica T., BRAF Mutation Colon Cancer, Stage 4



    Symptoms: Severe stomach cramps, diarrhea, vomiting, anemia (discovered later)

    Treatments: Surgery (hemicolectomy), chemotherapy

    Jennifer T. feature profile

    Jennifer T., Colon Cancer, Stage 4



    Symptoms: Weight loss, coughing, vomiting, sciatica pain, fatigue

    Treatments: Surgeries (colectomy, lung wedge resection on both lungs), chemotherapy, immunotherapy
    Kasey S. feature profile

    Kasey S., Colon Cancer, Stage 4



    Symptoms: Extreme abdominal cramping, mucus in stool, rectal bleeding, black stool, fatigue, weight fluctuations, skin issues (guttate psoriasis)
    Treatments: Surgeries (colectomy & salpingectomy), chemotherapy

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

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

    Mackenzie P.

    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.

    Table of Contents
    1. Introduction
    2. Before My Diagnosis
    3. My Diagnosis & Reaction
    4. Learning My AML Mutation
    5. My Treatment Plan and Remission
    6. Relapse
    7. Frustration and Faith
    8. Clinical Trials and How I Feel About Them
    9. How I’ve Responded to My Treatments
    10. My Message of Hope

    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

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    Lung Cancer Non-Small Cell Lung Cancer Patient Stories Surgery The White Ribbon Project Treatments

    Breaking the Stigma: Donnita’s Stage 1A Non-Small Cell Lung Cancer Story

    Breaking the Stigma: Donnita’s Stage 1A Non-Small Cell Lung Cancer Story

    At the age of 68, Donnita was diagnosed with stage 1A non-small cell lung cancer. At that point, she had quit smoking 14 years earlier and was living a healthy lifestyle with hiking as her passion. When Donnita was diagnosed, she was symptom-free, but she realized her smoking history remained her main risk factor, along with a family history of cancer and exposure to radon and asbestos.

    Interviewed by: Taylor Scheib
    Edited by: Chris Sanchez

    Donnita’s self-advocacy led to her early diagnosis through low-dose CT scans after facing insurance challenges. She underwent robot-assisted thoracic surgery (RATS), which proved successful. Post-surgery, she deeply reflected on her experiences, eventually connecting with others in the lung cancer community to manage what had become survivor’s guilt and fears of recurrence.

    The doting grandmother has become a passionate patient advocate, not just for herself, but for the countless others who have and continue to deal with a lung cancer diagnosis. Support for more lung cancer awareness grew with campaigns like the grassroots one powered by The White Ribbon Project, founded by a lung cancer patient and her husband, helping Donnita to find empowerment in sharing her story to help change public perception of lung cancer to include support for all people.

    Donnita emphasizes that anyone can develop lung cancer, regardless of smoking history, and urges others to test for radon exposure. Read below and watch the videos to learn more about how she advocates for self-awareness and proactive health measures, encouraging others to share their stories.

    If you have lungs, you can get lung cancer. That’s the bottom line.

    Donnita
    • Name: 
      • Donnita B.
    • Age at Diagnosis:
      • 68
    • Diagnosis:
      • Non-Small Cell Lung Cancer (Adenocarcinoma)
    • Stage:
      • Stage 1A
    • Symptoms:
      • None
    • Treatment:
      • Surgery
    Donnita and The White Ribbon Project

    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 programming. The Patient Story retains full editorial control over all content.

    Table of Contents
    1. Introduction
    2. Before My Diagnosis
    3. I Was at Significant Risk for Cancer
    4. My Diagnosis
    5. Undergoing Surgery
    6. After My Surgery
    7. How I Handled Survivor’s Guilt
    8. The Impact of Smoking Culture On My Life
    9. My Perspective Shifted
    10. Why I’m Sharing My Story
    11. Advocating For Myself
    12. My Identity Has Shifted
    13. What I Want People to Know about Lung Cancer
    14. More Stories with The White Ribbon Project

    If you have lungs, you can get lung cancer. That’s the bottom line. 

    Introduction

    Hi, my name is Donnita.

    My doctor diagnosed me with stage 1A non-small cell lung cancer at the age of 68.

    Right at the top of the list was a low-dose lung cancer CT screening. I got it easily; they didn’t give me a hard time at all. The day that I got it, alarms went off

    Before My Diagnosis

    I had no symptoms before my lung cancer diagnosis. I read in my insurance benefits brochure back in 2018 that I was eligible for a low-dose lung cancer CT scan, so I requested it from my primary care doctor at the time. He told me that my insurance wouldn’t cover it, but I pushed back and said, “I know it does because I saw it in my brochure. I have a history of smoking and a family cancer history, too.” He wrote it in, but I didn’t have another screening for five years for a couple of different reasons.

    I had anxiety every time I thought about that doctor because it never was a good visit with him. Then COVID became a factor and my two grandchildren were born. Between those three factors, the next thing I knew, five years had gone by and I had not had another screening.

    I had always thought cancer was a possibility because I had a significant smoking history. Not only that, I had a family history of cancer, too. 

    I realized that I couldn’t go on like this any longer. I moved to a hospital practice and went in with my list of requests. Right at the top of the list was a low-dose lung cancer CT screening. I got it easily; they didn’t give me a hard time at all. The day that I got it, alarms went off.

    I had my screening that morning. They called me that afternoon and said, “You need to get to a pulmonologist immediately.” From that point, things happened so quickly. Six weeks passed from the time I had my screening until the time I was on the table for surgery.

    I Was at Significant Risk for Cancer

    I always thought cancer was a possibility because I had a significant smoking history. Not only that, I had a family history of cancer too. My grandfather died from lung cancer and an uncle was also battling it at the time. I was hoping that the fact that I quit smoking 14 years prior had mitigated my risk.

    I was also living a healthy lifestyle. I wasn’t even thinking about radon or asbestos exposure at that time, only about my smoking history. But in hindsight, I had significant risk given all three factors together.

    My Diagnosis

    The pulmonologist I consulted told me that they found a suspicious nodule. Right away, I thought it was lung cancer. I’ll never forget how calm I was, though, when I went to the pulmonologist. He must have thought, “Who is this woman sitting here?”

    I was even somewhat fatalistic. I looked at him and said, “I’m done, right?” But he said, “No, we’re getting you in for a PET scan. I don’t even want to do a biopsy because there’s too big of a chance that it would come back with nothing found. Let’s see what the PET scan finds.”

    I’m living my life again and doing really well. But that was quite a journey I had to go on.

    Undergoing Surgery

    When I got my PET scan results back, they were lit up. My pulmonologist referred me to the thoracic surgeon and said, “That surgeon may not agree with me, but I want that nodule taken out.” I saw my thoracic surgeon, and he agreed that he didn’t want to do a biopsy ahead of time. He said, “I want it out, too.”

    I underwent robot-assisted thoracic surgery (RATS). The surgeon said, “We’ll take a section and biopsy it while you’re out. Depending on the results, we’ll proceed from there.” The first piece that he took came back atypical. He took another piece, which came back positive, and ended up removing three wedges. He had intended to remove a couple more segments, but I had some calcification going on that put me at more risk.

    Afterward, the surgeon said that he had gotten clear margins and felt good about my operation.

    After My Surgery

    My surgery had such an impact on me. It was a good thing that I was in therapy at the time. The therapist I was seeing didn’t specialize in treating cancer patients, but she was very good. She had already been working with me on breathing and meditation. Although I’ve been resistant to meditation, I’ve been receptive to breathing.

    I kept saying that hiking was my meditation. She didn’t agree with me, but we accepted that was how things were for me. But at that point, I started to realize how fortunate I was.

    Then the survivor’s guilt started to come in. I realized I needed to connect with other patients because I couldn’t burden my children with my mental health issues post-treatment. Their mother having lung cancer was already devastating to them. When we think of “lung cancer,” we automatically think it’s fatal. I knew I needed to connect with others like me, so I started my search for support communities.

    But then I started to have a fear of recurrence and that fear became overwhelming, so I had to take a bit of a step back. I’m still connected to the lung cancer community but not quite as intensely as I was in those first six months or so.

    I’m living my life again and doing really well, but that was quite a journey I had to go on.

    I’ve gotten past my survivor’s guilt by realizing that I was a victim, too. And that I didn’t deserve to get lung cancer.

    How I Handled Survivor’s Guilt

    I started to feel survivor’s guilt because I didn’t realize that there were so many people who didn’t have a smoking history who were in their 20s, 30s, and 40s, and who were being diagnosed with lung cancer at stage 3 and stage 4.

    I was coming from a place of privilege. I was financially stable, double-insured, and knowledgeable of and eligible for lung cancer screening. I had a history of smoking and a family history, yet I had all these privileges and I was diagnosed with stage 1A lung cancer. It broke my heart when I thought about what these people were going through to even get diagnosed and the journey they had to take to have it treated. My understanding of stage 4 lung cancer is that for some patients, it can’t be cured though it can be managed.

    At that point, I didn’t connect the dots and realized that I had been a victim, too — in my case, of the glamorization of the tobacco industry. I was born in the mid-50s and didn’t realize that it was the way of society. I didn’t understand how addictive tobacco was and didn’t connect the radon or asbestos exposure at that point. They were all part of my growth.

    My heart still breaks for those who are diagnosed at a later stage, but I’ve gotten past my survivor’s guilt. I was a victim, too, and I didn’t deserve to get lung cancer.

    The Impact of Smoking Culture On My Life

    When I was about 11 months old, my mother had my portrait taken professionally. I was all dressed up in a pretty pink dress, but I was cranky and fussy. My mother was a smoker and, like other women of her time who smoked, she always had her cigarettes in a cigarette case. She took her pack of cigarettes and put it in my hand to try and calm me down and make me presentable for the photo.

    There for eternity is a beautiful professional photo of me holding a pack of cigarettes in my hand. That shows you how culturally acceptable, casual, and normal that kind of behavior was at the time. My mother thought nothing of putting that pack of cigarettes in my hand for this photo.

    I’ve seen that picture on and off my whole life. I never thought anything of it until I saw it again post-cancer. My jaw dropped and I was stunned. I started to put so many things together after that.

    There are people in the community who don’t want you to talk about that, which was very conflicting for me because it’s my story and I have to talk about it.

    But because of the public perception of lung cancer and that it’s so associated with smoking, many feel that they want it to be in the closet.

    My Perspective Shifted

    I didn’t feel any shame when I was diagnosed with lung cancer. But when I discovered that there were people who had no smoking history that were getting diagnosed so young, that was when I started to experience shame. When I first started to bring up my smoking history, I got shut down.

    There are people in the community who don’t want you to talk about that, which was very conflicting for me because it’s my story and I have to talk about it. But because of the public perception of lung cancer and that it’s so associated with smoking, many feel that they want it to be in the closet.

    I struggled with that too. I felt like I wasn’t supposed to be ashamed of this, but I couldn’t talk about it either. I can’t help others if I keep silent, so even though there might be some people who don’t like what I have to say, I’ll keep on sharing my experience.

    Why I’m Sharing My Story

    Related to my previous point, the people who don’t want me to share my story think that I hurt the community when I do share it. Our goal is to change the public perception of lung cancer and the belief is that, if you talk about a smoking history, you’re not changing that perception.

    This is why it’s crucial for me to share my story as well as that picture of me as a baby with a pack of cigarettes in my hand. People who see it can start to understand my childhood, my exposure at such an early age, and the culture and glamorization of the tobacco industry. That’s helping change the public perception of lung cancer.

    I don’t have to avoid talking about my smoking history because I was a victim of it. Everybody has to choose to tell their story the way they want to. I’m hoping that those who are feeling guilty can see that if I continue to talk enough, maybe they themselves will start to feel comfortable and talk about their own stories too. If not, that’s their journey and they have to tell their story their way.

    Everybody has to choose to tell their story the way they want to.

    Advocating For Myself

    When I go to a doctor, I have a sheet of paper on which I’ve printed bulleted points I want us to take up. On the list I took to my surgeon, the first question was: will I still be getting biomarker testing? The surgeon told me, “Yes, go get biomarker testing,” although we blew on past that.

    When I went back in for my six-week checkup, I was told, “You didn’t get your biomarker testing because you were stage 1A and that wouldn’t change the treatment.” I didn’t know what to say because I’m not a doctor and I didn’t understand at that point in time that there are different viewpoints in the medical community.

    And the belief of the [National Cancer Institute]…is that everyone should get biomarker testing. There is the contrary belief that if it’s not going to change your treatment, then you don’t need it. Insurance probably wouldn’t cover it anyway because of my stage, so I had to grapple with that.

    I hit a wall and didn’t know if I was right or wrong, but I knew that I wanted biomarker testing. I felt I had to have it in order to feel okay and hadn’t grown in my understanding of that yet. When I went to the American Cancer Society Lung Cancer round table and connected with the community, everybody was singing a different tune.

    I connected with a doctor from Johns Hopkins. We set up an appointment and the following week, I went in and he did what was necessary to request my tissue and sent it off to Foundation Medicine to have my biomarker testing done.

    I’ve always realized how short life was and I’ve always been fiercely independent. But now, I’m appreciating and living each day. 

    My Identity Has Shifted

    I’ve always realized how short life was and I’ve always been fiercely independent. But now, I’m appreciating and living each day. In the past, I would get bouts of depression during which I would sit for days in the house, ruminate, and feel like I weighed 10,000 pounds. I would let too many days go by during which I didn’t live and suffered from depression.

    Lung cancer has given me the gift of pulling myself out of depression much quicker. Other than fear of recurrence, I’m not anxious or depressed now. I’m out there living.

    What I Want People to Know about Lung Cancer

    If you have lungs, you can get lung cancer. That’s the bottom line. It’s not just people with a smoking history who are at risk of getting lung cancer.

    Think about testing your home for radon. Radon is the biggest risk factor for people with no smoking history and it’s the second leading cause of lung cancer.

    When I first found out I had lung cancer and I found out that others had lung cancer without having a smoking history, I felt incredible shame. Nobody should feel shame because nobody deserves lung cancer.

    Smoking is a very addictive habit. There are other risk factors. I had the risk factors of radon and asbestos exposure too. Because I had a smoking history, that does not mean that smoking is what caused my lung cancer.

    Once again, we would like to thank The White Ribbon Project for its partnership.

    Johnson and Johnson J&J logo

    Special thanks again to Johnson & Johnson for supporting our patient education programming. The Patient Story retains full editorial control over all content.

    Thank you for sharing your story, Donnita!

    Inspired by Donnita's story?

    Share your story, too!

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    Categories
    Acute Lymphoblastic Leukemia (ALL) B-cell Acute Lymphoblastic Leukemia (B-ALL) Chemotherapy Leukemia Patient Stories Treatments

    Safyaa’s B-Cell Acute Lymphoblastic Leukemia (ALL) Story

    Listen to Your Body: Lessons from Safyaa’s Experience with B-Cell Acute Lymphoblastic Leukemia (B-ALL)

    Safyaa, who is from Madagascar but lives in Canada, was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) in December 2022. Before her diagnosis, she was a competitive bodybuilder and initially noticed changes in her health after a bodybuilding show in August 2022. She experienced shortness of breath, dizziness, tinnitus, and an increased heart rate during simple activities. She initially dismissed these symptoms as being due to fatigue, but her condition worsened afterward, culminating in a fainting episode around Christmas.

    Interviewed by: Nikki Murphy
    Edited by: Chris Sanchez

    Prompted by her father, Safyaa visited a doctor on Christmas Day, who found out that she had low blood pressure but told her that this was not alarming. Despite the doctor’s initial assessment, a blood test revealed severely low hemoglobin levels (hemoglobin carries oxygen in the blood), prompting immediate medical attention. This led to an emergency room visit where she was informed of her acute lymphoblastic leukemia diagnosis. Safyaa was also advised to stay in Canada for treatment due to the urgency of her condition and the lack of adequate healthcare facilities in Madagascar.

    Safyaa’s treatment plan started with an induction phase (an initial intensive treatment aimed at quickly reducing the cancer) in the hospital, during which she underwent chemotherapy that lead to remission by February 2023. Just prior to this, she and her team took measures to preserve her fertility. While on this chemotherapy, due to an allergic reaction to one of the medicines, her treatment had to change, increasing the frequency, requiring hospital visits every two days.

    Safyaa describes the side effects of her treatment, including hair loss, nausea, mouth sores, dry skin, vision changes, neuropathy, and weight gain. Her treatment has taken a toll on her physical and mental health, making lifestyle changes necessary and sparking introspection. Despite these challenges, Safyaa emphasizes the importance of gratitude, acceptance, and surrendering to realities beyond one’s control without giving up.

    Throughout her experience with B-cell acute lymphoblastic leukemia, Safyaa has continued to work as an online fitness coach, which has helped her stay occupied and mentally stimulated. She shares her experience as a lesson in listening to one’s body and prioritizing health. She urges others to seek medical advice for persistent symptoms.

    • Name: 
      • Safyaa I.
    • Age at Diagnosis:
      • 22
    • Diagnosis:
      • B-Cell Acute Lymphoblastic Leukemia (B-ALL)
    • Symptoms:
      • Shortness of breath
      • Dizziness
      • Extreme fatigue
      • Night sweats
      • Audible heartbeat in the ears and tinnitus
    • Treatment:
      • Chemotherapy

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

    Thank you for sharing your story, Safyaa!

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    Acute Lymphoblastic Leukemia Stories

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    Chemotherapy Follicular Lymphoma Non-Hodgkin Lymphoma Patient Stories Surgery Treatments

    Stage 3B Follicular Lymphoma: Hayley’s Patient Story

    Stage 3B Follicular Lymphoma: Hayley’s Patient Story

    Hayley, a nurse from Missouri, shares her experience after being diagnosed with stage 3B follicular lymphoma. Her story started when she experienced an intermittent sensation of pressure above her collarbone or clavicle, which she attributed to a pulled muscle due to home renovations.

    However, when she saw a significant lump in her neck and started wheezing while breathing, those first symptoms changed her mind, motivating her to seek medical advice. A chest X-ray revealed an unusual widening in the center of her chest. With her medical background, she decided to advocate for herself, leading her to insist on a CT scan.

    Interviewed by: Taylor Scheib
    Edited by: Chris Sanchez

    Hayley found the diagnosis surreal, especially considering her age and the absence of major symptoms. All of a sudden, she found herself on the receiving end of news she was accustomed to delivering in her professional capacity. Her doctor revealed the presence of a chest mass and tumors, suggesting the likelihood of lymphoma. Initially, an oncologist indicated it might be Hodgkin’s lymphoma, known for its high cure rate, but further tests confirmed it was a rare and aggressive form of follicular lymphoma.

    Facing the reality of her stage 3B follicular lymphoma diagnosis, Hayley leaned on her medical connections to seek a second opinion at the Siteman Cancer Center. While initially resistant, she appreciated the proactive support from her family.

    Adjusting to her new reality, Hayley transitioned from documenting her emotions in a diary to sharing her experiences on her social media, finding solace in connecting with others. She underscores the importance of maintaining a positive mindset in the face of her stage 3B follicular lymphoma diagnosis, emphasizing that it is not a solitary battle. Hayley acknowledges the physical toll of treatment, yet appreciates the opportunity to find her way through, highlighting the resilience cancer patients must foster. Her story serves as a testament to the strength and determination needed to navigate such an unexpected life challenge.

    • Name: 
      • Hayley H.
    • Age at Diagnosis:
      • 30
    • Diagnosis:
      • Follicular Lymphoma
    • Stage:
      • Stage 3B
    • Symptoms:
      • Intermittent feeling of pressure above clavicle
      • Appearance of lumps on the neck
      • Mild wheeze when breathing and seated in a certain position
    • Treatments:
      • Surgery
      • Chemotherapy
    Genmab

    Thank you to Genmab for supporting our patient education programming. The Patient Story retains full editorial control over all content.

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

    Table of Contents
    1. Introduction
    2. Before My Diagnosis
    3. My Test Results and Diagnosis
    4. Next Steps
    5. My Actual Diagnosis and My Reaction to It
    6. What Keeps Me Going

    My biggest thing with cancer in general is that you’re not alone.

    Introduction

    My name is Hayley. I’m from Missouri. I work in an emergency room as a nurse.

    I was diagnosed with stage 3B follicular lymphoma.

    Before My Diagnosis

    I was diagnosed on October 23, 2024. My story starts about three and a half weeks before that. 

    We were working on our flooring in the house when I felt this pressure on the side of my neck, deep down, above my clavicle. It felt like someone was pushing on my throat. It wasn’t like a sore throat or a lump in my throat. I would take my shirt off, and as soon as my hands would go above my head, it felt like something was choking me. If I was lying down in a certain position, I would feel the same thing.

    I chalked it up to a pulled muscle or something because we were working on our flooring. The pressure was there for about three weeks, and it would come and go, so I kept writing it off. 

    When I woke up one morning, there was a massive, golf ball-sized lump, so I realized it wasn’t a pulled muscle. I also felt like I was wheezing when I breathed out.

    I called my primary and got in that day with a nurse practitioner. They pushed on my throat to see if it was my thyroid. They also requested blood work and ordered a chest X-ray. They called me later that day and said, “The X-ray shows a widening of your mediastinum and we’re concerned that there might be a chest mass.” I called the hospital where I work and said, “I’d like to get a CT,” because I wasn’t going to bed thinking that I had a chest mass. 

    I thought, this can’t be real. It was like every fear that I ever had was coming to reality. And — I’m only 30. How is this happening?

    My Test Results and Diagnosis

    Being on the “other side” was surreal. I requested that CT from my colleagues. I work with one particular doctor all the time and usually, I’m the person standing beside him and giving these diagnoses.

    The doctor sat down beside me on a stool and started crying. He went, “You have a bulky chest mass and two tumors here and one in your abdomen. It’s very probable that you have lymphoma.”

    I looked at my boyfriend and said, “Are you hearing what I’m hearing? This can’t be right. I’m 30 and I feel invincible. I feel so healthy. I don’t have symptoms. What are you talking about?” When the doctor used the word “cancer,” it shook me. I said, “No way.”

    I thought this can’t be real. It was like every fear that I ever had was coming to reality. I’m only 30. How is this happening? The patients I see are much older — 75, 85, 90 years old. I couldn’t help but think, “What did I do wrong? How did I get this? What could I be doing that could have caused this?”

    Next Steps

    I went to the oncologist the following day and he told me, “With your age and how you’re presenting, it’s probably Hodgkin lymphoma, which has a 98% cure rate,” so he got my hopes up. He said that I needed to have a biopsy done. He also said, “You’re going to lose your hair.” But as it turns out, it wasn’t Hodgkin.

    I have family who know people at the Siteman Cancer Center downtown. It’s one of the top cancer centers in the country, especially for lymphoma and stem cell transplants. They urged me to get a second opinion from a lymphoma specialist. I was grateful for the advice, but I trust the people I work with; the doctor knows what he’s doing. He already seemed confident in what my treatment would be. If it turned out to be something very rare, he’d send me to a specialist. 

    But as it turns out, they went behind my back and called Siteman for a favor. Siteman called me on a Tuesday and said, “We can get you in tomorrow.” I was happy because being treated there would be like a dream come true.

    There is a way to get through it, and that’s through keeping a positive mindset when you can. 

    My Actual Diagnosis and My Reaction to It

    After I had my check-up, the doctor called and said, “You have follicular lymphoma, stage 3B.” I thought, “What are you even talking about? What is 3B? I thought we were done.” We knew it wasn’t Hodgkin — it was non-Hodgkin and we also knew that it was follicular.

    Follicular lymphoma is usually a slow-growing, or indolent cancer, but stage 3B is fast-growing. I have a fast-growing follicular lymphoma that’s super rare and aggressive.

    Back then, I was writing in my diary every day about all of the emotions I was experiencing. I did that for nine days, which was the worst period, and I haven’t looked at it since. I made an Instagram and TikTok, and transitioned to using them instead since they’re much easier to use. But I’m glad I tried writing in a diary because I couldn’t relive that experience if I tried. I suspect I have a mechanism in my head that almost blocks it all out.

    What Keeps Me Going

    I feel like other cancer patients would feel the same way I feel — like you don’t have a choice. You put one foot in front of the other, and you don’t have a choice beyond that. You go through the motions and all you see is the next step. How am I going to get to the end of it? Whatever I have to do to be healthy again is enough for me to keep going.

    I do feel bad for my body. I try and take such good care of it and yet I keep putting toxic stuff into it to try to deal with the cancer. But in the end, I appreciate being given the chance to fight. Other people don’t even get a chance to fight. They could get in a car accident or other catastrophic things could happen to them.

    I also need to emphasize that once you get a cancer diagnosis, that’s not the end of it at all. If you can keep your mind positive, that would be great. I know it’s hard because I have my tough days for sure.

    My biggest thing with cancer in general is that you’re not alone. It’s so isolating when you hear those words coming out of your doctor’s mouth: “You have cancer.” I felt like no one could understand what I was going through, that my life was over, and that I was never going to be the same.

    Of course it’s not true. Everyone in every walk of life has to deal with something like this and can deal with it. It just makes you so much stronger mentally and physically. 

    There is a way to get through it and that’s through keeping a positive mindset when you can. 

    Hayley H.
    Genmab

    Thank you to Genmab for supporting our patient education programming. The Patient Story retains full editorial control over all content.

    Thank you for sharing your story, Hayley!

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    More Follicular Lymphoma Stories

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    Chemotherapy Colon Colorectal Immunotherapy Patient Stories Surgery Treatments

    Shannin Finds Courage & Clarity Living With Stage 4 Colon Cancer

    Diagnosed at 26 with Stage 4 Colon Cancer, Shannin Finds Courage and Clarity

    At just 26, Shannin faced a life-changing diagnosis: stage 4 colon cancer. Her journey began with months of severe abdominal pain, nausea, and vomiting—symptoms that were initially dismissed as food intolerance. But Shannin knew something wasn’t right. Refusing to settle for unanswered questions, she sought multiple medical opinions. It wasn’t until an urgent care visit that tests finally revealed the truth: lesions and a complete blockage in her colon.

    Interviewed by: Nikki Murphy
    Edited by: Chris Sanchez

    Despite the prognosis from her oncologist, Shannin found determination to advocate for her health, pushing for immediate diagnostic tests and surgery. Surgeons successfully removed her tumor, reconnected her colon, and took out the affected lymph nodes and an ovary. Yet, cancer remained in her liver, leading to a treatment plan of chemotherapy and immunotherapy tailored to her tumor markers.

    While dealing with the physical toll of stage 4 colon cancer, Shannin emphasizes the importance of mental resilience. Thinning hair, weight loss, and skin reactions to treatment have all challenged her sense of self. But through it all, she focuses on what matters most—cherishing every moment with her family and her husband, Cody.

    Through genetic tests and tumor analysis, Shannin was matched with a specific immunotherapy, improving her treatment response. However, the financial burden and lack of access to advanced procedures in Canada posed challenges. She became a relentless advocate, proving that second opinions and persistence can open doors to critical treatment options.

    Shannin’s narrative underscores the power of hope and self-advocacy. Her stage 4 colon cancer story should encourage others to pursue second opinions and be proactive in their care. And, above all, never abandon hope, as statistics don’t define a person’s path.

    • Name: 
      • Shannin D.
    • Age at Diagnosis:
      • 26
    • Diagnosis:
      • Colon Cancer
    • Staging:
      • Stage 4
    • Symptoms:
      • Severe pain where tumor blocked colon
      • Vomiting after eating
      • Weight loss
    • Treatments:
      • Chemotherapy
      • Immunotherapy
      • Surgery

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

    Thank you for sharing your story, Shannin!

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    Share your story, too!

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