Author: Katrina Villareal

From Back Pain to Cancer: Michele’s Multiple Myeloma Story

Post author By Katrina Villareal
Post date February 21, 2025
2 Comments on From Back Pain to Cancer: Michele’s Multiple Myeloma Story

February 21, 2025

From Back Pain to Cancer: Michele’s Multiple Myeloma Story

Before her diagnosis, Michele experienced fatigue, anemia, and persistent lower back pain. She attributed these symptoms to aging, overexertion, and her active lifestyle as a dancer. However, during a dance rehearsal, she felt a sharp pain in her leg that led her to the emergency room. A CT scan and X-rays revealed lesions on her spine, prompting a referral to an oncologist.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Michele’s primary care doctor remained persistent and ran multiple tests. Despite the normal test results, follow-up scans showed lesions on her spine, ribs, and pelvic area. She was referred to a specialist who conducted PET scans, MRIs, and other exams. Afterward, in April 2020, Michele was diagnosed with multiple myeloma. Although the cancer had been detected early, she needed immediate surgery followed by treatment.

Despite the emotional toll, Michele remained physically active. The pandemic added another layer of difficulty as she navigated treatment. She later received a stem cell transplant, a pivotal moment in her recovery. She followed the medical team’s advice, consuming ice to prevent painful mouth sores. Witnessing the stem cells entering her body gave her hope for the future.

Following Michele’s transplant, she maintained regular doctor visits and became her own health advocate. She sought support from a diverse group of people worldwide who reassured her. She was in remission for four years before she relapsed in October 2024, which deeply affected her and her family.

Michele’s current treatment includes weekly infusions and injections. She initially had to undergo eight consecutive treatment cycles and now continues with biweekly infusions, eventually transitioning to monthly treatments for 25 months. The process has been physically and emotionally draining as she grapples with feelings of anger and frustration, particularly as her independence has been impacted.

One of the most difficult aspects of Michele’s experience was missing major life events, like her youngest child’s high school graduation in 2020. The mental and spiritual toll of her illness led her to lean on her faith and support systems. Michele emphasizes the importance of surrounding herself with positivity and cutting off negative influences. Her experience taught her to advocate for herself and others, especially within her community. She remains transparent about her experience and is determined to spread awareness.

Name: Michele J.
Diagnosis:
- Multiple Myeloma
Symptoms:
- Fatigue
- Anemia
- Persistent lower back pain
- Sharp leg pain during movement
Treatments:
- Surgery
- Chemotherapy
- Stem cell transplant

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

Table of Contents

How I Started to Know Something Was Wrong
Going to the Doctor After the Emergency Room
Getting a Stem Cell Transplant
My Life After the Stem Cell Transplant
Cancer Relapses
Emotional Part of a Cancer Diagnosis
Words of Advice

During one dance rehearsal, the pain became unbearable… it got more and more intense that I had to go to the emergency room.

How I Started to Know Something Was Wrong

I didn’t know it at the time because I thought they were normal symptoms of aging and overexertion. I was experiencing fatigue, but I thought I needed to sleep more or was working out too much, and always had anemia and had bone pain in my back. When I was working, I used to have a pad to support my back. It was always the bottom of my back that would hurt a lot.

During one dance rehearsal, the pain became unbearable. We had a move where my leg had to come out and when it did, I felt a sharp, intense pain like I sprained something. I kept thinking that maybe I spread my leg out too far or something. I would do stretches, but it got more and more intense that I had to go to the emergency room, where I got a CT scan and X-rays.

When the doctor came in, he told me, “We see lesions. You may have to see an oncologist.” I immediately called my husband but he was at work an hour away, so I said, “You have to stay on the phone with me. They’re telling me that I have lesions and I have to see an oncologist.” He asked, “What’s an oncologist?” I said, “It’s cancer.” Immediately, he stopped what he did and came home. My whole life changed.

He could not understand why everything else was saying that I’m fine, but the CT scan and X-rays were saying something different.

Going to the Doctor After the Emergency Room

My primary care doctor had access to my chart, so he already saw everything. I set up an appointment with him. I was still working out and going to dance practice because I wasn’t letting that go. It’s a part of me.

He did all kinds of tests. I was due for my first colonoscopy, so I got that done. I’m very active with getting my mammograms and the test results came out fine.

My husband and I said, “Okay, it’s not in my blood, so what was this man talking about with the CT scan and X-ray?” My doctor was very persistent. He didn’t give up. He told me and my husband, “I’m going to set up an appointment with a bone doctor who specializes in cancer.”

I repeated the CT scan and X-rays. When the report came back, he could not understand why everything else was saying that I was fine, but the CT scan and X-rays were saying something different. There were lesions on my spine, rib, and pelvic area. He decided to refer me to a doctor at the University Hospital in New Orleans.

My schedule was set for Thursday after Mardi Gras. I had PET scans, an MRI, and different exams, and on April 14, 2020, he called and said, “You have multiple myeloma. It’s good news, but it’s not so good news because to tell you the truth, we can’t even stage it because we caught it early. But you do need to have surgery.” On April 22, I had my surgery and then started treatment.

I had several meltdowns and anxiety attacks, and it had a lot to do with people being mindful and careful around me.

Getting a Stem Cell Transplant

When the time came for the stem cell transplant, I was at Tulane. On the day of the transplant, they gave me something to relax. I had to eat a lot of ice because they told me that sores could develop in my mouth and throat, and I wasn’t letting that happen because I was told it was extremely painful. I enjoyed popsicles and big cups of ice, and I was able to have them during the procedure and afterwards as well.

When the stem cells arrived, they told me it would take 15 minutes for them to go through, which was amazing. I was looking at the stem cells and they were moving. That was my life. I was getting my life back. This is going to be over and I’m going to be fine.

I healed and my hair eventually grew back. Mentally, I’m still feeling better. One of the key things they told me was because I kept physically active and took care of myself, I was able to withstand the process.

No one could come to see me. I had several meltdowns and anxiety attacks, and it had a lot to do with people being mindful and careful around me.

Make sure you have somebody who understands what this is and respects the fact that you are your own advocate.

My Life After the Stem Cell Transplant

I make sure to see my doctors and have my labs done to be monitored. To try to understand what was going on with me, I became my biggest advocate. I started looking for people who looked like me, but I found a whole realm of people of all races and religious beliefs in different countries who reached out to me and let me know it was going to be okay.

Cancer Relapses

My doctor is a myeloma specialist who’s very sharp and very on point with everything, so I’m in good hands. The key is to make sure you have somebody who understands what this is and respects the fact that you are your own advocate.

He said, “Your numbers are exceptional. Let’s do a bone marrow biopsy to confirm everything.” My fourth anniversary was October 16, 2024. My doctor told me that we’re going to have to do a PET scan. The results showed that I went from 0% to 25%. I had relapsed.

This time around, I wasn’t doing well. When I told my husband that I relapsed, he looked like he was defeated. He looked like how I felt.

I have a port in my chest where I get an infusion every week. I also get a shot in my stomach. It’s humbling and scary. I’m not taking it well. I cry every day and I’m angry.

I was doing eight cycles in a row of one of the treatments. Now I’m doing every other week of one of them. Once I’m done with this part, I’ll be going once a month for 25 months.

I’m going to be as transparent as I can be, especially for people who look like me because we have to create awareness.

Emotional Part of a Cancer Diagnosis

It gets in the way of things and slows you down, which is difficult when you’re highly independent and love to get up and go like me. It wasn’t something that I was expecting. In 2020, my youngest was graduating from high school and I couldn’t go. I had to watch videos taken by his older siblings. That messes with you mentally.

When you’re going through something like this, it alters your life physically. What does it do to you mentally and spiritually? You have to find a way. You have to have your faith, and have to have your trust in God or whoever you serve or believe in. Have your affirmations, read your Bible, and open up to talk to people, especially those who are going through the same thing.

I’m always not thinking of myself but of others, and that’s another thing that I’m working on, which is working on myself. When these situations happen, they reveal a lot about people. Don’t allow negative people in your space. I can’t have them around me. I can’t force people to accept me and be my friend. I’m being your friend and trying to look out for you, but when it happens to me and you’re not there, you have to get rid of people like that.

I have no regrets. Four years of being in remission is a blessing. It allowed me to see my grandson, so I’m looking forward to all the other years to come and stay positive. It’s hard. It’s hard on my family. I’m human. I feel hurt, anger, and disappointment. I can’t be afraid of exercising because it seems like whenever I do it, the myeloma comes back, but I can’t do that.

Words of Advice

If you’re not comfortable with your doctor, don’t settle. Move on and find someone else. I became somebody who was able to help somebody. Multiple myeloma messed with the wrong person because I’m going to run and tell everybody. I’m going to be as transparent as I can be, especially for people who look like me because we have to create awareness.

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

Thank you for sharing your story, Michele!

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The Importance of Cancer Screening in the Black Community | Lemuel Eley

Post author By Katrina Villareal
Post date February 20, 2025
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February 20, 2025

The Importance of Cancer Screening in the Black Community | Lemuel Eley

Lemuel shares a transformative health experience of when he suffered a life-threatening heart attack while working. He now literally preaches the importance of cancer and other health screenings. The incident began with symptoms like severe breathlessness and profuse sweating, which he initially dismissed. Upon seeking medical attention, he was diagnosed with 16 blood clots in his lungs, requiring immediate surgery. This wake-up call prompted significant changes in his lifestyle, including weight loss from 495 to 333 pounds, and a shift toward greater health consciousness.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Reflecting on his upbringing as an African-American male, he acknowledges cultural norms that downplayed the importance of regular medical care. His father’s heart attack at 55 reinforced the generational tendency to dismiss symptoms and avoid doctors. Now, he advocates for proactive health care, emphasizing the importance of regular screenings and prompt medical intervention. He also draws on his role as a preacher to bridge faith and science, stressing that while God provides healing, individuals must actively care for their health.

He challenges the misconception in religious communities that divine intervention alone suffices. Using biblical analogies, he underscores the necessity of human effort alongside faith and urges individuals to utilize medical resources as tools given by God. His story serves as a call to action, particularly for Black men, to prioritize their health, overcome cultural stigmas, and engage in preventive care to avoid unnecessary suffering.

Thank you to AbbVie, Genmab, and Karyopharm 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 to make informed treatment decisions.

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

Table of Contents

Introduction
Getting a Heart Attack
Recovering from the Heart Attack
View on Doctors and Health Care Growing Up
Role of Faith & Religious Beliefs in Health Care
Importance of Taking Care of One’s Health
Advice to Black Males

I told my sister that I couldn’t breathe and she told me to call 911… They found out I had 16 clots, so they rushed me to surgery.

Introduction

I’m from Henderson, North Carolina. I’m 44 years old and I have a daughter named Rachaelle.

I have a degree from Elizabeth City State University in criminal justice and psychology. I’m also a licensed preacher of The Church of Apostolic Revival in Durham, North Carolina.

I have many hobbies. My nickname’s Big Country. I have a lot of hobbies, like hunting and fishing. I like working with my hands. I like to do media. Professionally, I’m a truck driver. I have my dump trucks.

Getting a Heart Attack

In April 2021, I was driving my truck in Winston-Salem, North Carolina, and I pulled over into a company that does cement. I had to go upstairs to open up the tank and when I walked back downstairs, I noticed that I was breathing with much difficulty and sweating profusely. I didn’t pay any attention to it and thought I had a cold. I go around to the other side of the building and get loaded. I go upstairs to close the top of my tanker and as I’m going back down, I can’t take another step nor take another breath. I slid down the stairs on my backside to get downstairs.

I managed to get myself into the truck and drive home. I was sweating profusely and coughing by this point. I went to the doctor who gave me steroids to open up my lungs. I couldn’t lie down. I had to sit up in a chair. That morning, I told my sister that I couldn’t breathe and she told me to call 911. When they got there, they took care of me and brought me to the hospital to get a CT scan. They found out I had 16 clots, so they rushed me to surgery. They went up through my groin into my lungs and did the clot-busting treatment. I had to stay stable for 24 hours until the medicine worked.

My first thought was I wanted to know how bad it was. Was I going to live? How was my heart? It was a major life adjustment. I was 495 pounds and now I’m down to 333 pounds.

Our culture taught us that we didn’t need a doctor.

Recovering from the Heart Attack

My whole perspective on life changed. I’m conscious of my body now. If things happen, I get it checked. I’ve learned to hold people around me who love me because you never know. You could be here today and gone tomorrow. You have to take advantage of every God-given opportunity that you have with people because as the Bible says, life is like a vapor. Today we could be here, but tomorrow we could be gone, even in the next hour you could be gone.

It challenged me to look at life differently and to stop being selfish. If somebody asks me to do something, I do it. You never know if it might be that person’s last time. It changed my whole perspective of life. I’m more conscious about what I do, especially to my body.

View on Doctors and Health Care Growing Up

As an African-American male, we were always told that we were tough. We did what we were supposed to do. We work, work, work, and we’ll be okay, not knowing half the time that later on in life, an issue will arise and it’s going to be worse than it was.

My father wouldn’t go to the doctor. My mom made him go and the doctor told him certain things, but he never took heed. He had a heart attack at age 55, which caused issues with every other part of his life but he worked through it and now he’s good.

Our culture taught us that we didn’t need a doctor. You can take a little bit of this and a little bit of that. If you’re having some stomach issues, drink a little ginger ale or eat a little crackers. But that pain in your stomach could have been a heart attack, but you’ll never know. If you feel tightness in your chest or you feel like you can’t breathe, you have to go see a doctor and have it checked out. That’s what the doctors are here for.

We don’t take the time to talk about health care because we feel like God can do everything and sometimes, that’s the problem.

Role of Faith & Religious Beliefs in Health Care

There’s a thin line between faith and science. We’re taught that God has the power to heal, but here’s my take on this. God created the physicians to do what they’re supposed to do and when they can’t, that’s when faith steps in.

I have a great story of my friend Tony who had stage 4 cancer. He didn’t know it and was still living. He went to the doctor and found out he had it, but before he found out, he was living a good life. I found out that with cancer patients who I have known, have talked to, and have witnessed, most of them already had it before they even found out they had it.

I never had cancer and I pray I never have it. Some people think, “I have cancer. I’m going to die,’ but you don’t have to succumb to that. Look at Tony. He does everything he wants to do. He still cycles. You look at him as if nothing ever happened, but he does his part by going to the doctor, taking care of himself, eating right, doing all the things that he’s supposed to do, and what he can’t do, God does.

I’m a licensed preacher and I preach in churches, but we don’t take the time to talk about health care because we feel like God can do everything and sometimes, that’s the problem. With religion, we depend too much on God when God said I would do the part you can’t do.

I’m going to share this Bible story that I heard and it made sense. Lazarus was dead. Jesus didn’t say, “Get up out of that ground.” He told them, “Dig him up.” Jesus said, “Lazarus, come forth,” and he came out. Then he said, “Take the grave clothes off him.” They did that part. He did the part they couldn’t do. Going back to what I was saying, you do your part, God does his part. There’s a very thin line when it comes to health care and Christianity.

God put these doctors in place for a reason, so use them. We don’t talk about it because we always put the burden on God versus us taking care of ourselves. You can’t keep stuffing yourself with pork and fatback, and then when your arteries get clogged, you ask God to unclog something that you did. That’s not fair. Go out and run. Start losing weight. Do your part. We do a horrible job in church talking about health care because Jesus is going to do everything, but you still have to do something.

If you don’t get screened and something happened to you that you could have taken care of, you can’t blame anybody else but yourself because you had every chance.

Importance of Taking Care of One’s Health

God gave us the tools, the resources, and the revelation of the human body. We have all this research to help us. We have these schools of medicine and doctors.

Get your screening. If you feel something, go see a doctor. Your health is more important than anything in the world. If you don’t get screened and something happened to you that you could have taken care of, you can’t blame anybody else but yourself because you had every chance.

It’s like having tools. I cannot take a coloring book and color a page without the crayon. The crayon is the tool that goes along with the coloring book so you can color. Without the crayon, there is no coloring book—it’s just a book. The coloring book needs the crayon. You are the coloring book, but your doctor is the crayon. Let your doctor be the crayon and help you paint a good life.

Advice to Black Males

Go see your doctor. Go get your screenings. You never know what you might be going through. I’m 44 years old. Never in the world did I think I would have a heart attack in my early 40s. I’ve been a healthy and athletic guy. Let’s be honest. Health is wealth. For African-American men, we deal with prostate cancer and reproductive dysfunction because we’re not taking care of ourselves. We need our heart to work the other part and a lot of times, we don’t see that until the last minute. Have you been taking care of your body the whole time? Ask your doctor.

As part of the African-American community, a preacher, part of the Omega Psi Phi Fraternity, Inc., as part of the trucking industry, and being a young African-American man, go. Find out something that could save your life, so you don’t have to deal with it anymore. Get your prostate checked. Sometimes we feel violated, but if it turns into cancer, then you know how to deal with it. Just go.

Go see your doctor. Go get your screenings. You never know what you might be going through.

Special thanks again to AbbVie, Genmab, and Karyopharm for supporting our patient education program. The Patient Story retains full editorial control over all content

Thank you for sharing your story, Lemuel!

Inspired by Lemuel's story?

Share your story, too!

Stories Tackling Cancer Disparities

Dr. Brandon Blue

Dr. Brandon Blue shares key strategies for better health care and saving lives, especially in communities impacted by multiple myeloma.

The Importance of Cancer Screening | Dr. Colin Ottey

An internal medicine physician discusses healthcare access, preventative care, patient trust, and how both doctors and patients can improve relationships for better outcomes.

The Importance of Cancer Screening | Lemuel Eley

Heart attack survivor at 44 shares his story, advocating for health screenings and proactive care in the African-American community.

Dr. Marjory Charlot, Oncology

UNC oncologist discusses increasing awareness and access to clinical trials among Black communities

Roshonda C., Rectal Cancer, Stage 4

Symptoms: Blood in stool, blood from rectum after intercourse, sensation of incomplete bowel movements
Treatments: Chemotherapy, surgery, radiation

Tags cancer screening, Continuing the Dream

Chemotherapy Lung Cancer Patient Stories Radiation Therapy Small Cell Lung Cancer Treatments

Brian’s Limited-Stage Small Cell Lung Cancer Story

Post author By Katrina Villareal
Post date February 18, 2025
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February 18, 2025

Brian’s Limited-Stage Small Cell Lung Cancer Story

Brian was diagnosed with limited-stage small cell lung cancer in December 2024 at the age of 40. His diagnosis was unexpected and came about after an unusual fall at work, where he broke his hand and injured his shoulder. As he recovered, he experienced persistent pain in his shoulder and armpit. Concerned, he requested an X-ray, revealing a lung mass. Initially, doctors attributed the mass to a contusion or even bronchitis. Only after extensive testing and a painful needle biopsy was he diagnosed with small cell lung cancer.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Receiving the diagnosis was a devastating shock. Though Brian had feared the possibility of lung cancer, having previously experienced chronic heartburn and sought medical attention for it, nothing had indicated cancer until the imaging revealed the tumor. The news was difficult to process, and he initially struggled to find hope. Over time, he came to terms with his situation and began looking ahead to treatment.

Brian’s treatment plan consists of chemotherapy and radiation therapy. His chemotherapy regimen involves three consecutive days of treatment followed by 21 days off, and he undergoes radiation therapy twice a day for five days a week. Although he has experienced fatigue and flu-like symptoms, he has so far been fortunate to avoid the more severe side effects typically associated with chemotherapy.

His diagnosis has had a profound impact on his life. Previously, he worked a physically demanding job, but his illness has forced him to step away from that work and adjust to a new daily routine. He more time at home, focusing on rest and recovery. Mentally, the diagnosis has been his greatest challenge. A self-described introvert, he has struggled with thoughts about his legacy and the limited time he may have left. He emphasizes the importance of taking life one day at a time and avoiding overwhelming information online, which can be discouraging. Instead, he focuses on maintaining hope, as it is the only thing that keeps him moving forward.

Although Brian has received support from friends and family, he has found it difficult to locate a lung cancer support group that suits his needs. He acknowledges the value of community and continues searching for a support network. He discovered The Patient Story while researching ways to share his experience and hopes to connect with others who understand his situation.

Brian’s advice to others facing a similar diagnosis is to take things day by day and hold onto hope. He believes that fighting, regardless of the outcome, is something to be proud of. He remains hopeful about his treatment and is determined to face his illness with resilience and courage.

Name: Brian M.
Age at Diagnosis:
- 40
Diagnosis:
- Small Cell Lung Cancer (SCLC)
Symptoms:
- Persistent heartburn (suspected GERD)
- Shoulder/armpit pain
Treatments:
- Chemotherapy
- Radiation therapy

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

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

Thank you for sharing your story, Brian!

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Why Second Opinions Matter: Denelle’s Stage 3B Rectal Cancer Story

Post author By Katrina Villareal
Post date February 17, 2025
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February 21, 2025

Why Second Opinions Matter: Denelle’s Stage 3B Rectal Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Denelle was diagnosed with stage 3B rectal cancer in April 2024, after experiencing persistent symptoms for several months. In the fall of 2023, she noticed irregular bowel movements, frequent bleeding, and the sensation of incomplete evacuation. Initially dismissing these symptoms as hemorrhoids, she eventually sought medical advice in January 2024. Her general practitioner found nothing unusual, but concurrently referred her to a gastroenterologist, leading to a colonoscopy in April that consequently confirmed cancer.

The initial staging process was complex and took about a month. Early assessments suggested stage 1 or 2 cancer, but CT scans later revealed lesions on her liver, raising concerns about stage 4 cancer. However, further testing determined that the lesions were benign, confirming her diagnosis as stage 3B rectal cancer. Given the initial recommendations for surgery, Denelle afterwards sought a second opinion at Mayo Clinic. Doctors subsequently suggested a total neoadjuvant therapy, consisting of chemotherapy and radiation before considering surgery.

Denelle underwent a month-long chemoradiation treatment, taking chemotherapy pills alongside radiation therapy. As a result, follow-up scans showed significant tumor shrinkage, allowing her to proceed with systemic chemotherapy. She completed eight rounds of chemotherapy at home, midway through which scans indicated a complete response. Despite this positive development, she finished all prescribed chemotherapy treatments and then transitioned to active surveillance.

The mental and emotional toll of stage 3B rectal cancer was significant for Denelle. The initial shock of the diagnosis was overwhelming, especially as she grappled with how to share the news with her family. Throughout treatment, she experienced anxiety, particularly around scan results, and subsequently found therapy helpful in processing her emotions. Support from her community, COLONTOWN, and her family played a crucial role in helping her navigate this difficult period.

Denelle emphasizes the importance of seeking second opinions, advocating for oneself in medical decisions, and trusting one’s instincts. She subsequently learned that cancer treatment is not a one-size-fits-all approach and that finding the right medical team aligned with her goals was crucial. Consequently, she advises others to push for answers if something feels off and to build a strong support system.

Now in the surveillance phase, Denelle will be undergoing regular scans every three months for the next two years. She correspondingly acknowledges the ongoing fear of recurrence but is focused on being present in her life. Stage 3B rectal cancer changed her perspective, making her more intentional with her time and relationships. Furthermore, while she still processes the emotional impact, she is committed to moving forward with a renewed sense of purpose and gratitude.

Name: Denelle C.
Age at Diagnosis: 34
Diagnosis:
- Rectal Cancer
Staging:
- Stage 3B
Symptoms:
- Irregular bowel movements
- Frequent rectal bleeding
- Sensation of incomplete evacuation
Treatment:
- Chemoradiation (oral chemotherapy and radiation therapy)

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

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

Thank you for sharing your story, Denelle!

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Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Post author By Katrina Villareal
Post date February 13, 2025
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February 13, 2025

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy was diagnosed with stage 4 non-Hodgkin lymphoma in 2024. Her initial symptoms included persistent coughing, weakness, and shortness of breath. After weeks of worsening symptoms and ineffective treatments, an MRI revealed a large mass in her chest, which eventually led to the collapse of her left lung due to a massive tumor. A biopsy confirmed the diagnosis of lymphoma, a cancer that Sandy later described as a blessing in disguise due to its responsiveness to chemotherapy.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Treatment began immediately, consisting of six intense rounds of chemotherapy, each lasting five days in the hospital followed by two weeks of recovery at home. The process was physically and emotionally grueling, marked by extreme fatigue, weight loss, and hair loss. Despite these challenges, Sandy focused on mental resilience, which she believes was critical to her survival. She emphasized the importance of maintaining movement, even during the most debilitating moments.

To cope mentally with stage 4 non-Hodgkin lymphoma, Sandy turned to spirituality, meditation, and writing. She frequented a meditation garden where she found solace. Writing became a therapeutic outlet, leading to the creation of her book, Cancer Ramblings. Writing helped her process her experience and turn her pain into purpose.

Sandy celebrated her remission as a profound moment of liberation and gratitude, describing it as a second chance at life. She plans to monitor her health closely while maintaining a conscious lifestyle. She views sharing her story as a way to inspire others, providing hope and comfort to those facing similar challenges. Her key advice is to visualize a positive outcome and hold onto it as a guiding light through the darkest moments. Sandy’s enduring image was of herself running on the beach—a vision she ultimately realized.

Name: Sandy D.
Age at Diagnosis:
- 45
Diagnosis:
- Non-Hodgkin lymphoma
Staging:
- Stage 4
Symptoms:
- Persistent coughing
- Weakness
- Shortness of breath
Treatment:
- Chemotherapy (six rounds)

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, Sandy!

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Amrit’s Appendix Cancer Story

Post author By Katrina Villareal
Post date February 11, 2025
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February 11, 2025

Amrit’s Appendix Cancer Story

Amrit was diagnosed with appendix cancer, or appendiceal adenocarcinoma (ApAC), in 2022 after enduring a series of vague and confusing symptoms. Initially attributing her severe migraines, abdominal bloating, skin changes, and irregular menstrual cycles to perimenopause, she delayed seeking medical attention. However, persistent bloating prompted her to visit her general practitioner, who conducted further tests. A scan revealed a mass on her ovary, leading to a referral to the fast-track cancer pathway. Further imaging uncovered a ruptured appendix and mucin accumulation throughout her peritoneal cavity.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Amrit underwent a grueling 9.5-hour surgery involving extensive procedures: the removal of her appendix, spleen, gallbladder, omentum, ovaries, and visible mucin deposits. This was followed by heated intraperitoneal chemotherapy (HIPEC) to address any residua cancer cells. Post-surgery, she learned her condition was malignant, requiring additional chemotherapy. Amrit described the physical toll of treatment, including neuropathy, extreme fatigue, and other side effects.

Throughout her appendix cancer experience, Amrit confronted significant mental health challenges, including post-traumatic stress disorder (PTSD). She found coping mechanisms in running, advocating for women’s health, and compartmentalizing for her children’s sake. She emphasized the importance of women advocating for themselves, recognizing symptoms, and prioritizing their health over societal and familial pressures.

Amrit now monitors her condition under a 10-year surveillance program. While her latest scans show no active disease, the possibility of recurrence remains. She continues to process her trauma, engage in physical activities like marathons, and share her story to inspire others to take control of their health.

Name: Amrit R.
Age at Diagnosis:
- 46
Diagnosis:
- Appendiceal Adenocarcinoma (ApAC)
Symptoms:
- Persistent migraines
- Severe bloating
- Rapid weight loss elsewhere but abdominal enlargement
- Irregular menstrual cycles with heavy bleeding
- Facial rash and skin changes
Treatments:
- Surgeries: cytoreductive surgery with heated intraperitoneal chemotherapy (HIPEC); removal of the appendix, spleen, gallbladder, ovaries, and omentum
- Chemotherapy

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

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

Thank you for sharing your story, Amrit!

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Jessica’s Stage 2 Hodgkin Lymphoma Story

Post author By Katrina Villareal
Post date February 8, 2025
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February 8, 2025

Jessica’s Stage 2 Hodgkin Lymphoma Story

Jessica was diagnosed with stage 2 Hodgkin lymphoma at 26. Before her diagnosis, she led an active and healthy lifestyle, enjoying time at the gym and with her fiancé. Her first symptom was a recurring red lump on her leg, which she initially dismissed. After the lump persisted and caused pain, she visited her general practitioner, who first changed her contraceptive pill. When the lump returned, her GP ordered a chest X-ray, revealing a mass in her chest.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Further testing, including biopsies and bronchoscopy, failed to confirm lymphoma until February 2024, when a video-assisted thoracic surgery provided a definitive diagnosis of stage 2 Hodgkin lymphoma. Jessica had no classic symptoms of lymphoma, such as night sweats or significant weight loss, and was shocked to learn she had a 19 cm tumor in her chest and surrounding areas.

Her treatment plan involved fertility preservation, followed by four rounds of intense chemotherapy. The physical and emotional toll was significant, including nausea, hair loss, and isolation due to her young age in the treatment unit. Despite these challenges, Jessica found support through social media, sharing her experiences to demystify cancer treatment and connect with others.

Now in remission, Jessica reflects on how the experience reshaped her perspective, emphasizing gratitude, resilience, and the importance of seeking medical advice for unexplained symptoms. She continues to advocate for awareness and hopes her story inspires others to face cancer with courage.

Name: Jessica H.
Age at Diagnosis:
- 26
Diagnosis:
- Hodgkin lymphoma
Staging:
- Stage 2
Symptom:
- Recurring red lump on the leg (painful, swollen, hot to touch)
Treatment:
- Chemotherapy

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

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

Thank you for sharing your story, Jessica!

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Calvin’s Stage 1 Lung Cancer Story

Post author By Katrina Villareal
Post date February 7, 2025
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February 7, 2025

Calvin’s Stage 1 Lung Cancer Story

In 2020, at the age of 33, Calvin was diagnosed with stage 1 lung cancer after enduring four years of misdiagnosed symptoms, including frequent illness and breathing difficulties. His initial symptoms began in 2016, with a severe bout of illness in Germany leading to a pneumonia diagnosis. Subsequent cycles of sickness and treatments yielded no lasting improvement, and he was misdiagnosed with adult asthma. Despite consulting various specialists, it wasn’t until 2020 that further tests, including X-rays and pulmonology consultations, revealed a potential cancer diagnosis.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

A biopsy confirmed a mass in his left lung, necessitating immediate surgery. In September 2020, his left lung was removed entirely via pneumonectomy. Recovery was arduous, requiring relearning basic functions such as walking and urination. The emotional toll on his family, particularly his wife who assumed caregiving responsibilities, was profound. Determined to recover for his two-year-old daughter, he sought trauma therapy to navigate the psychological challenges.

Living with one lung transformed his life. He now prioritizes low-altitude, climate-controlled environments to manage breathing and accommodate his family’s activities. He has since welcomed a second child and adjusted to his new reality with resilience. His advice underscores the importance of self-advocacy in medical care, urging others to trust their instincts, persist through diagnostic hurdles, and seek second opinions when necessary.

Name: Calvin M.
Age at Diagnosis:
- 33
Diagnosis:
- Lung Cancer
Staging:
- Stage 1
Symptoms:
- Frequent illness (monthly cycles of sickness)
- Breathing difficulties
Treatment:
- Surgery: pneumonectomy

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.

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

Table of Contents

Introduction
Initial Symptoms
Diagnosis
Discussing the Treatment Plan
Reaction to the Diagnosis
Pneumonectomy
Recovering from Surgery
Living with One Lung
Words of Advice

Introduction

I was diagnosed with stage 1 lung cancer in 2020 at the age of 33.

Initial Symptoms

In 2016, I was traveling quite a bit for work. After a long flight to Germany, I wasn’t feeling too well and ended up bedridden for four days in a hotel room. When I arrived home, I immediately went to the doctor with the medication they gave me in Germany. My doctor in Denver looked at it and said, “It looks like you had pneumonia. Let’s treat you for that and run some tests.” After the tests, she said, “You have adult asthma. You had asthma as a kid, now you have adult asthma.”

In 2017, I kept traveling. I continuously went through a three-month cycle. I would get sick for a week or so in the first month. In the second month, we would change medications. In the third month, I’d feel okay. I kept traveling for work until COVID hit.

We went up to somewhere above Vail where the elevation was around 7,000 feet and I couldn’t breathe.

In April 2020, we were at an allergy and asthma center getting my daughter tested because she’s allergic to peanuts. I asked her doctor, “Can I get a meeting with you? I supposedly have had adult asthma for the last few years, but it’s not getting better. We’re not doing anything because of COVID and I’m still getting sick.” She ordered an allergy test, some asthma tests, and X-rays, and then told me to go to a pulmonologist.

After the pulmonologist ran some tests, she said, “You have one of three things. You have a fatal lung disease and you’ve got 6 to 12 months to live, you have cauliflower lung, which is what a lot of people get from vaping, or you have lung cancer. It’s the most probable option, so we have to do some tests.” This was around April and May 2020, so it wasn’t the easiest time to get in and out of medical centers. It took a while, but I was able to do all these different tests.

We went camping because that’s what we did during COVID. Since I lived in Denver, we went up to somewhere above Vail where the elevation was around 7,000 feet and I couldn’t breathe. I thought, “How is this possible? I’m not sick. I don’t have COVID.” We were testing all the time since we had a two-year-old then. We came back down and they said they needed to do a biopsy of my lung.

Diagnosis

They scheduled the biopsy for an hour and five minutes. As soon as they put the camera in, they saw a mass sitting over my left lung, so they stopped and pulled the camera out of my throat. The next thing they said was, “You have to come back in tomorrow. We have to remove this mass. We’ve done this a bunch, so we know what it is. We can’t tell you officially, but based on the color and the type, it looks exactly like cancer. We’ll have to take it out tomorrow. We weren’t prepared for this mass. We thought we were going to do a biopsy.”

The next day, they removed the mass and said they would get back to me within 7 to 10 days. The next Friday was the Friday before Labor Day weekend. My wife and I were sitting at home, twiddling our thumbs. It was the eighth day and we hadn’t gotten the test results back. We’re hammering our pulmonologist and everyone else to give us answers. At 5:07 p.m., the chief of surgeons called and said, “Hey, I’m sorry that it’s so late. We have the results. You have stage 1 cancer, but it’s the best outcome and it’s the easiest thing for us to treat.”

‘In 13 days, your life will never be the same. You need to grab your family, go wherever you want… you’re never going to be able to breathe this way again.’

Discussing the Treatment Plan

When we walk into his clinic, he has everything decked out. He said, “Here’s the deal. In 13 days, you’re going to have surgery. We’re taking out your entire left lung. Here’s what we’re going to do,” and he mapped it all out. We asked, “Do we have a second opinion on this?” He said, “Look, I’m on the board of Colorado with your oncologist and pulmonologist. We’re the team. This is what you’re going to do. I got you booked in because I’m the chief of surgeons here and I own the books. This is your appointment time. I’ll see you in 13 days on Thursday.”

Then he asked, “Where do you work?” I told him where I work and he asked, “They’re not going to shut down without you, are they?” I told them that they’d be fine. He said, “Here’s what you’re going to do. You’re going to walk out of this office. You’re going to call your boss and say, ‘I’ll see you in six months,’ or whatever time you can do because in 13 days, your life will never be the same. You need to grab your family, go wherever you want, see the leaves change, and go to altitude because you’re never going to be able to breathe this way again.” The mass was moved so I could breathe.

I was at the point that a lot of people go through, which is, “Wait, I feel amazing. You removed the mass. Can I wait for science? Can I wait for something to come in and fix this?” I asked him that and he said, “If you do, you’ll end up with stage 3 or 4 cancer and you will die. Don’t be an idiot.”

My wife went into full caregiver mode. It’s missed how much caregivers give, how much they put in, and what they’re going through.

Reaction to the Diagnosis

At the time, our daughter was two. My immediate thought was: what are the next steps? Lung cancer is thought of as fatal. In the lung cancer community, we talk a lot about the stigma that comes with it. I’ve never smoked. Then my thoughts went to, “What did I do wrong? What did I do to cause this? How do I stop it?” You can’t. At that point, it’s done. Finally, it came down to, “Is my wife going to be stuck raising our daughter by herself?”

There’s a seven-month part of my life that is completely blacked out, especially after surgery and the meds I was on. I don’t remember a lot of it, but I was in a lot of shock. One of the first things I did was to reach out and find a trauma therapist to get ahead of it because I knew it was going to be bad. My wife went into full caregiver mode. It’s missed how much caregivers give, how much they put in, and what they’re going through.

I’ve never only lived with one lung. I don’t know what the reality of that is.

Pneumonectomy

They took out my entire lung. I’m knocked out and my wife had to go through all of these emotions, which is way worse than anything in the moment. It was rough for her. They put me in the ICU for a day and a half and then I was in a regular room for five days.

I didn’t know what to expect as a young 30-year-old athlete who played sports his entire life. You get through injuries and it hurts, but you know you’ll get through it. I’ve never had major surgery. I’ve never only lived with one lung. I don’t know what the reality of that is.

Recovering from Surgery

I had to relearn how to walk, to urinate, and to do everything. Nothing was working. It was difficult having to relearn those, but not being able to see anyone else, particularly my daughter, was more difficult. My mom sat in the parking lot because she couldn’t come in since they only allowed one person.

If I had known four years prior when I first was getting sick, if they had immediately diagnosed and figured it out, I don’t know if I would have cared as much because I didn’t have my daughter then. Recovering from surgery was all about needing to get back to as best as I could be because I’m her dad. I’m the one that she plays with. I needed to be able to still do these things.

If you believe something is wrong, if you listen to your body and something is different, go through every process to figure it out.

Living with One Lung

Vacations are different. Getting to sea level is always amazing. We plan our trips based on where I can operate well. For example, I can’t go to Mexico anymore because I can’t breathe. I need to sit in an air-conditioned room because that’s where I can breathe.

I have a one-and-a-half-year-old son now. I can sit and throw a ball with him and play horse, but it comes with a lot of breaks. We make sure that what we do is essentially climate-controlled. It’s different and you have to work through it.

Words of Advice

If you believe something is wrong, if you listen to your body and something is different, go through every process to figure it out. Don’t be arrogant or cocky about where you believe you are and don’t blindly trust every medical professional you find. Some rules and things get in the way of how you can get the testing you need. Don’t go through the course because that’s what they tell you to do. Get hungry. Find the information. Advocate for yourself.

Special thanks to The White Ribbon Project for its partnership.

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

Thank you for sharing your story, Calvin!

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From Hospice to Hope: Eugenia’s Fight Against Stage 4 Lung Cancer

Post author By Katrina Villareal
Post date February 4, 2025
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July 15, 2025

From Hospice to Hope: Eugenia’s Fight Against Stage 4 Lung Cancer

Eugenia was diagnosed with poorly differentiated stage 4 non-small cell lung cancer at the age of 46. Her symptoms began around Christmas 2018 with a lingering illness, followed by chest tightness and coughing up blood. She initially dismissed her symptoms, but after experiencing significant bleeding, she sought medical attention in February 2019. Despite her concerns, her doctor initially attributed her symptoms to anxiety. However, blood tests indicated abnormalities, prompting further scans that revealed a 5 cm mass at the apex of her right lung and another tumor compressing her bronchi.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Initially skeptical of the non-curative treatment options presented to her, Eugenia sought alternative medical opinions. When her condition worsened, she finally met an oncologist who admitted her for further evaluation. A biopsy was performed but was later deemed ineffective due to an error in sampling. By this time, her tumor had expanded, obstructing 95% of her trachea, leading to severe respiratory distress.

Doctors started her on chemotherapy in June 2019, administering small doses due to concerns that the tumor might break apart and cause fatal complications. Despite the treatments, her condition continued to deteriorate, culminating in respiratory failure by mid-July. She was transferred to a higher-level care center where she underwent brachytherapy, external radiation, repeated cryotherapy, and CyberKnife treatment. These interventions successfully removed the tumor after nine days of intensive procedures.

During her recovery, another setback emerged: a bowel obstruction that required emergency surgery. The obstruction turned out to be cancerous, escalating her condition to stage 4 non-small cell lung cancer. Following this diagnosis, her treatment plan was abruptly halted, and she was placed in hospice care. Despite this, she remained determined to fight for her life.

Eugenia learned about an immunotherapy drug and insisted on trying it, despite her oncologist’s reluctance due to her frail condition. With limited time left, she convinced her doctor to administer the treatment, starting the immunotherapy on August 29, 2019. Over time, this treatment proved to be the key factor in her survival. Five years later, Eugenia remains alive, defying the terminal prognosis she was given. She challenges the notion of “incurable” cancer and shares her experience to inspire others to advocate for their care.

Name: Eugenia H.
Age of Diagnosis:
- 46
Diagnosis:
- Poorly Differentiated Non-Small Cell Lung Cancer
Staging:
- 4
Symptoms:
- Chest tightness
- Wheezing
- Weight loss
- Persistent high pulse rate (150 bpm)
- Coughing up blood
- Severe bleeding from the mouth
Treatments:
- Chemotherapy
- Radiation therapy: external beam radiation therapy, brachytherapy & CyberKnife
- Cryotherapy
- Surgeries: tracheostomy & emergency bowel obstruction surgery
- Immunotherapy

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

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

Thank you for sharing your story, Eugenia!

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Adenoid Cystic Carcinoma: The Rare Cancer That Almost Went Undiagnosed

Post author By Katrina Villareal
Post date February 3, 2025
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February 3, 2025

Adenoid Cystic Carcinoma: The Rare Cancer That Almost Went Undiagnosed

Alyssa was diagnosed with adenoid cystic carcinoma in September 2024. Her diagnosis followed months of unrelenting jaw pain that was repeatedly dismissed as a TMJ disorder or stress. Alyssa’s first symptoms emerged during her third pregnancy, but the pain persisted postpartum. Being a dental hygienist, she knew her symptoms did not align with a TMJ disorder. Despite her advocacy, she encountered multiple misdiagnoses and ineffective treatments until she insisted on specific imaging, which revealed a tumor in her parotid gland.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Alyssa underwent a biopsy, which was inconclusive, prompting her to proceed with surgery. The operation lasted over four hours as the surgeon carefully removed the 3 cm tumor entangled with her facial nerve, preserving nerve function. Post-surgery, Alyssa faced radiation therapy, undergoing 20 sessions at Huntsman Cancer Institute. The treatment, though effective, caused side effects like dry mouth, taste changes, sore throat, and significant skin irritation.

Her experiences with adenoid cystic carcinoma were mentally taxing, intensified by anxiety stemming from prior health challenges, including a near-fatal postpartum infection and a life-saving hysterectomy. Alyssa leaned on therapy, visualization techniques, and her faith to navigate the isolation of radiation and the emotional toll of her journey.

She emphasizes trusting one’s instincts and knowing one’s body while advocating for persistence in seeking answers. Despite challenges, Alyssa remains resilient, finding strength in her family, faith, and the hope of inspiring others to persevere.

Name: Alyssa N.
Age at Diagnosis:
- 31
Diagnosis:
- Adenoid Cystic Carcinoma
Symptoms:
- Persistent jaw pain
- Lightning-like facial pain during the first bite of meals
Treatments:
- Surgery: tumor removal
- 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, Alyssa!

Inspired by Alyssa's story?

Share your story, too!

Alyssa N., Adenoid Cystic Carcinoma

Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...

Eva G., Oral Cancer, Stage 4

Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...

Teresa B., Recurrent Breast Cancer (Hormone-Positive), Oral Cancer (Lip Cancer), and Skin Cancer (Melanoma)

Symptoms: Lip cancer: chapped lips & a pimple-like growth on lip, breast cancer: enlarged left breast with lump, melanoma: none

Treatments: Surgeries (bilateral mastectomy with reconstruction, lumpectomy, craniotomy, Mohs, surgery, wide local excision), hormone therapy, radiation therapy
...

Kandi B., Adenoid Cystic Carcinoma, Stage 3

Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue

Treatment: Surgery
...

Larry W., Neck Cancer (Malignant Neoplasm of the Neck), Stage 4

Symptom: Lumps on the right side of the neck

Treatments: Surgery (tonsillectomy, lymphadenectomy), chemotherapy, radiation, clinical trial

...

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