Shawn, 48, from Springfield, MI, discusses his ongoing battle with stage 4 colorectal cancer. He describes his unexpected cancer diagnosis after experiencing severe abdominal pain, which led to a CT scan that revealed a large blockage. Doctors diagnosed it as cancer and quickly performed surgery, removing a portion of his colon and addressing other cancerous tissues.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
After getting through his surgery, Shawn faces the emotional and physical challenges of his colorectal cancer. Nevertheless, he maintains hope in his eventual recovery, thanks to his age and metabolic health, as well as faith in his doctors’ treatment plan. He is on the verge of undergoing chemotherapy and plans to pursue additional treatments to eradicate the cancer. Shawn recounts the support of his wife, who has become an unwavering pillar in his fight against the disease, helping him through challenging moments.
Despite his diagnosis, Shawn still feels lucky, because the cancer has not claimed his life. He consequently expresses gratitude for having a type of cancer that offers some hope compared to others. He emphasizes the importance of staying positive and active in combatting his illness, and keeps busy with projects at home to counter the inactivity that comes with treatment.
Sharing his colorectal cancer story, Shawn highlights the significance of learning from others’ experiences and encourages communication to avoid isolation. He advises others facing similar challenges to seek support and information. By staying informed and connected with loved ones, one can cope better with the emotional strain of cancer.
Shawn remains optimistic, focusing on moments with his family and confronting his journey with a pragmatic approach, allowing him to face each step with resolve and purpose.
Name:
Shawn K.
Diagnosis:
Colorectal cancer
Age at Diagnosis:
47
Staging:
Stage 4
Initial Symptoms:
Appearance of a large, painful mass in his colon
Treatment:
Surgery
Chemotherapy (planned)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Erin’s Stage 3C High Grade Serous Ovarian Cancer Story
Erin shares her personal battle with high grade serous ovarian cancer. Living with her husband and two adult children in New York, she enjoys biking and creating miniatures. Her health journey began with irregular periods and persistent cramping, which she initially attributed to perimenopause. Despite experiencing chronic fatigue and gastrointestinal issues, she did not suspect anything serious until she began bleeding continuously in November 2020.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
After consulting various doctors and undergoing numerous tests, Erin opted for a hysterectomy in August 2021. About a week after the procedure, she began experiencing serious symptoms including constipation and severe pain on the lower sides of her back, and had to go to the hospital. She was struggling with these complications when it was revealed that she had extensive stage 3C high grade serous ovarian cancer. Following the diagnosis, Erin advocated for surgery before chemotherapy to assess the cancer stage. She underwent debulking surgery later in November to reduce the size of the tumor when it couldn’t be fully removed, which confirmed the widespread nature of her cancer.
Despite facing severe physical challenges, including a fistula and subsequent hospitalization, Erin remained proactive about her treatment. She researched extensively, consulting peer-reviewed journals and medical experts to make informed decisions. Her insistence on surgery first played a crucial role in her treatment plan.
Erin endured 6 rounds of chemotherapy, facing only one significant adverse reaction. The treatment exacerbated menopausal symptoms, such as hot flashes, but she persevered. By March 2022, Erin completed her chemotherapy, marking her remission with a triumphant bell ring.
Reflecting on her journey, Erin acknowledges areas where she could have improved her health management, such as quitting smoking and maintaining better hydration and exercise routines. She aims to share her story to help others avoid similar mistakes, encouraging them to quit harmful habits for better health outcomes.
Erin’s narrative emphasizes the importance of self-advocacy, thorough research, and persistence in seeking accurate diagnoses and effective treatments. She concludes with an inspiring message: never give up and continue fighting for one’s health, as life holds immeasurable value despite the challenges faced.
Name:
Erin R.
Diagnosis:
High Grade Serous Ovarian Cancer
Staging:
Stage IIIc
Initial Symptoms:
Vaginal bleeding
Multiple gastrointestinal symptoms
Treatments:
Surgery
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story
Laurie, a Los Angeles resident, was diagnosed with stage 4 follicular non-Hodgkin lymphoma in 2006, when she was 46. Her journey to diagnosis began years earlier with vague symptoms—frequent sinus infections, a tendency for her right eye to dry out, fatigue, and a lump in her abdomen. Multiple doctors dismissed her concerns, with one attributing the lump to a hernia. But a diagnostician ordered a CT scan, and it revealed a grapefruit-sized tumor and spots on her lungs.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
After undergoing a series of tests, including biopsies, Laurie learned she had follicular non-Hodgkin lymphoma, a type of cancer affecting the lymphatic system. Her initial response to the cancer diagnosis was shock, followed by depression and uncertainty about how to explain the situation to her young son and husband.
Laurie’s treatment regimen started with chemotherapy and a monoclonal antibody, which successfully reduced the tumors after 6 rounds. However, her cancer relapsed, and she explored additional treatment options, including a clinical trial using an HDAC inhibitor (therapy that helps control how cancer cells grow and divide by affecting the cancer cell DNA). It initially stabilized the cancer but ultimately failed after 11 months. Consequently, Laurie turned to alternative therapies, including radioimmunotherapy (delivering high dose radiation directly to the tumor cells) and a more aggressive chemotherapy regimen, but these also proved unsuccessful.
In 2011, Laurie enrolled in a clinical trial for a Pi3 kinase inhibitor (a treatment that works to block a pathway cancer cells use to grow and survive that can slow a cancer’s growth and help keep it under control), which kept her cancer stable for over 5 years, albeit not fully eliminating it. During this time, she learned about CAR T-cell therapy, a cutting-edge treatment using a patient’s own T cells to target cancer cells. While initially not available for follicular lymphoma, CAR T-cell therapy became an option for Laurie in 2018. She consequently underwent the procedure — a remarkable 7th line of cancer treatment. As a result, she achieved remission for the first time in 12 years. As of 2024, Laurie has remained cancer-free. Her oncologist considers her cured, as her CAR T-cells continue to be detectable in her system.
Throughout her treatment journey, Laurie faced numerous challenges, including the side effects of chemotherapy, radiation, and steroids. She developed avascular necrosis, which required hip surgery, a consequence of long-term steroid use. However, despite these struggles, Laurie’s battle with cancer transformed her into a passionate patient advocate. She now works with 3 nonprofits, helping others navigate cancer treatment and advocating for more accessible and less potentially toxic therapies like CAR T-cell therapy. Laurie emphasizes the importance of finding a specialized oncologist, self-advocacy, and the value of second opinions and clinical trials in managing cancer.
Laurie’s story underscores the evolving landscape of cancer treatment, particularly in the context of immunotherapy. She highlights the importance of staying informed and advocating for oneself or having someone advocate on their behalf, especially as new therapies emerge. Through persistence, resilience, and research, Laurie continues to support others facing similar battles. She shares her journey to inspire hope and grow awareness.
Name:
Laurie A.
Age at Diagnosis:
46
Diagnosis:
Follicular lymphoma
Staging:
Stage 4
Symptoms:
Frequent sinus infections
Dry right eye
Fatigue
Lump in abdomen
Treatments:
Chemotherapy
Targeted therapy
Radioimmunotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
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
Hip-Hop, Hope, and Health: Oya Gilbert’s Multiple Myeloma Story
Oya Gilbert shares his powerful journey battling multiple myeloma, which began in 2015. Given his high energy and healthy past, Oya knew something was wrong when he began experiencing serious symptoms such as severe fatigue, bone and back pain, and episodes of passing out.
Living in a rural area, he faced challenges getting a proper diagnosis, as local medical professionals failed to identify his condition accurately. Initially, doctors misdiagnosed his symptoms as anxiety, leading to ineffective treatments. Eventually, in 2017, doctors diagnosed him with stage 1 multiple myeloma, a revelation that was both a relief and a new challenge.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Throughout his ordeal, Oya leaned on his love for music, particularly hip-hop, to cope with the emotional and physical toll. Since his childhood, music had provided him a therapeutic escape and inspiration during difficult times. Oya’s faith in God and a love for laughter also played key roles in maintaining his positivity. Embracing humor, he founded the Hip, Hope, Hooray! Black Men Talking Health Podcast to share his experiences and spread joy.
Over the 7 years since his diagnosis, Oya has experienced a significant improvement in his quality of life. He attributes this to positive thinking and appreciating life’s small joys. He remains acutely aware of life’s precious moments, determined to make the most of his time.
Driven by his experiences, Oya became a patient advocate, founding the Health, Hope, & Hip-Hop Foundation. His goal is to address disparities in cancer treatment and use hip-hop as a positive force for change. As a speaker and presenter at the 2024 American Society of Hematology (ASH) meeting, roles typically held by doctors, clinicians, and researchers, Oya presented findings from a discussion on healthcare disparities faced by multiple myeloma patients of color in the U.S. He helped to propose actionable solutions, focusing on improving health equity for multiple myeloma patients.
It wasn’t a short road to becoming one of the three patients who are lead authors on this paper – it started with many meetings, conversations, and showing up in person to take part at two health equity summits where they, doctors, researchers, and other advocates met to discuss the huge subject of how to improve access to care and healthcare outcomes for multiple myeloma patients, especially those in the Black/African-American community. They poured countless hours into what would become a very synthesized version of their discussions – this ASH paper and presentation.
Oya’s story is one of resilience and advocacy, as he continues to contribute to the myeloma community and inspire others. With a firm belief in turning adversity into triumph, he exemplifies the power of choice — choosing to be an overcomer rather than a victim. He works tirelessly to make a difference in the lives of others facing similar challenges.
Name:
Oya Gilbert
Diagnosis:
Multiple myeloma
Staging:
Stage 1
Initial Symptoms:
Fatigue and malaise
Bone and back pain
Foam in his urine
Passing out
Thank you to Pfizer for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
You can make a choice. You can be either a victim or an overcomer.
Introduction
My name is Oya Gilbert. I’m the father of two boys and one girl.
I was diagnosed with multiple myeloma in 2017. It’s been 7 years since my diagnosis.
I love music. I grew up listening to hip hop; I can say that it’s a way of life for me. Music for me is cathartic, I’ll turn on a track I love and I can zone all the way out. Music was a way for me to escape tough moments in my childhood and create a new reality.
From fatigue and pain to a multiple myeloma diagnosis
Initial symptoms
My story started back in 2015 with fatigue and feeling weird. That was when I learned the difference between being tired and fatigued. I had never really been sick up to that point, and hadn’t even had a broken bone, and I am a high-energy kind of person, so I knew something was wrong. My sleep times would last as long as 10 or 11 hours a night, and even when I would go to work, I would nap for 20, 30 minutes.
I started seeing a lot of foam in my urine and also began to experience bone and back pain. I would be up at 12 midnight to about 4 a.m. with that pain, which would sometimes be tremendous, and I even passed out a couple of times in front of my children.
The term I use to refer to these experiences is “episodes”. These episodes progressed from that point. They would happen maybe once or twice every few months, and then they started happening more frequently, once a month, and then once a week.
Diagnosis
So I started trying to figure out what was wrong with me. I went to see the different specialists in my area. I live in a very rural area, and my community is predominantly older than I am and White. The doctors I consulted couldn’t tell what was wrong with me.
I would tell those doctors that as much as possible, I didn’t want to take medication because I didn’t want to be addicted to anything. But they didn’t really listen to me. They gave me the wrong medication and actually labeled me as having anxiety and being a hypochondriac. I tried taking the anxiety meds but they actually led to my getting into an accident, after which I stopped taking them. The specialists were at least able to tell me what I didn’t have, which was wonderful. But on the other hand, I just kept getting sicker.
I had a full-time job and was trying to work, but it was such a struggle. Depression wasn’t a concern, but I was feeling hopeless — and it got to the point that I actually thought I was going to die. I even called up my insurance company to try and increase my insurance policy.
Eventually, they finally did discover what was wrong with me, that I had multiple myeloma in my blood. Thankfully, I was in stage 1, maybe borderline stage 2, and didn’t have a lot of lesions and things of that nature.
After this diagnosis, the doctors were able to set me on the right path. But it took about 2 years for that to happen.
My experience has led me to immerse myself in the cancer realm, be part of the solution, do more for others, and become an advocate.
Reaction to his experience
I was just very blessed to not have passed away from this illness before I was diagnosed and it could be treated. But I was certainly on the way to that point.
People shouldn’t have to go through those different types of scenarios in this day and age. People should be able to be diagnosed in the early stages and not have to go through what I went through.
I describe my experience as deflating because the doctors I was seeing didn’t really listen to me and it took a long time before they finally diagnosed what I had as multiple myeloma. The health care providers I consulted didn’t seem to be educated enough about my cancer, and maybe not regarding cancer in Black people.
And when I was diagnosed, it was a bittersweet moment. On one hand, I could tell everyone, see, I really did have something serious. But on the other hand, as we all know, multiple myeloma is incurable. And so that touched off a whole new set of emotions and opened up new directions for my life.
But that being said, I’ve stayed positive and tried to stay happy. It comes partly from my faith in God. But it also comes from my love of laughter. I think laughter is the greatest medicine God created. And so I’ve channeled my love of humor into a podcast I host, the Hip, Hope, Hooray! Black Men Talking Health Podcast.
My diagnosis has also made fatherhood a little challenging, because there are such age gaps between my kids; my youngest son was 3 when I was diagnosed, while my oldest boy was 10, and there’s my daughter who’s older still. This meant that I had to have a different conversation with each one. I had to keep it from my oldest son because I didn’t think he could handle it back then. Obviously, my youngest boy didn’t know what was going on, only that his dad was in the hospital.
As I mentioned earlier, it’s been 7 years since I was diagnosed and my treatment started. My quality of life has improved. I’ve been somewhat healthy. And because I’ve been around for that length of time after my diagnosis, I’ve managed to experience many things. For instance, I’ve been able to walk my daughter down the aisle.
Cancer changes your entire perspective of life — every aspect of it. When you get cancer, you reach out and grab on to anything positive to help keep you out of that rabbit hole of agonizing over cancer. I appreciate all the little things, things we take for granted, even things like using the bathroom.
I now say that I’m very conscious of everything around me. I’m acutely aware of the importance of cherishing the moments and doing as much as we can while we’re still here. I’m going to do as much as I can while I’m healthy-ish.
Becoming a patient advocate
Setting up the Health, Hope, & Hip-Hop Foundation
Ultimately, I’m trying to learn more about my cancer, including how the disparities in knowledge and expertise that I experienced affect others too. My experience has led me to immerse myself in the cancer realm, be part of the solution, do more for others, and become an advocate.
The advocacy bug actually bit me so hard that I decided to move the needle a little bit more and start a foundation as well: the Health, Hope, & Hip-Hop Foundation.
I’ve mentioned that I’m really into music, especially hip hop. Hip-hop has touched every facet of the planet, but it’s sort of underutilized as a force for change, because we haven’t always used it for positive things. And that’s how my foundation came to be, using hip-hop, since it’s such a powerful tool that touches everyone and which so many people are already into.
It’s just like a super bright light bulb came on in my head and I went, okay, let me see if I can put something together. And it took a lot of people to help me get to this point, for which I am very grateful.
I am blessed with the opportunity to have a seat at the table and make a difference as a Black American, a member of the Black and Brown community.
The Honor of Presenting at the American Society of Hematology (ASH) meetings – as a Patient
Editor’s note: The ASH meeting is an annual gathering of tens of thousands of health care professionals from around the world, where they are selected to share clinical updates, therapies, and practice strategies in myeloma research. Oya was one of three patients to lead this particular paper and presentation, which is a rare position held by patients for ASH.
The session tackled the findings of two multiple myeloma Health Equity Summits, which gathered patients, advocates, and healthcare professionals to discuss and address disparities in multiple myeloma treatment. We identified key issues, including:
Delayed diagnoses due to lack of awareness
Cultural biases in healthcare
Limited access to specialists.
We proposed solutions such as:
Enhancing provider training
Expanding support groups
Improving health literacy through clear, accessible information.
And we also made other recommendations, including using telehealth, reducing referral biases, and increasing diversity among providers to foster trust.
So the focus was on patients’ perspectives on actionable items to address disparities in health care among patients with multiple myeloma. And what we wanted to get out of this was to figure out how we could increase health equity. And so we poured all the data and ideals we had into a bucket, and decided which ones to prioritize.
Thanks to these discussions, we put together actionable steps for healthcare professionals and policymakers to improve equity in multiple myeloma care.
I am blessed with the opportunity to have a seat at the table and make a difference as a Black American, a member of the Black and Brown community. We need to take advantage of these opportunities.
You can make a choice. You can either be a victim or an overcomer.
From Shock to Strength: A Young Mom’s Follicular Lymphoma Story
Courtney shares her journey facing grade 3B follicular lymphoma, diagnosed in 2022, and her subsequent treatment and ongoing battle with the disease. Initially, she experienced severe back pain, sinus issues, and fatigue, which led to her diagnosis of follicular lymphoma after a visit to urgent care revealed a large mass in her chest. That diagnosis was a shock to her and her husband, with Courtney feeling overwhelmed while her husband took charge of scheduling appointments and managing logistics.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Courtney started chemotherapy soon after her diagnosis, enduring 6 rounds of treatment. The process was grueling, and she vividly recalls the emotional and physical toll it took, including the distress of losing her hair. Despite the hardships, she acknowledges the critical role her care team played, particularly her oncologist and the doctor from urgent care, both of whom provided essential support.
After treatment, Courtney reached remission, but the high-risk nature of her disease requires her to be vigilant about her health. She has regular check-ups and contemplates possible future treatments like CAR T-cell therapy. Throughout this journey, she emphasizes the importance of community support, expressing deep gratitude for her family and friends who have been there for her, and who have provided welcome emotional and practical assistance.
Courtney also discusses the psychological impact of her diagnosis, sharing her need to talk about cancer as a way to cope and bring awareness. She hopes that by sharing her story, others will understand that cancer can happen to anyone and stresses the significance of early detection.
Looking forward, Courtney remains hopeful, drawing strength from advancements in medical research and the support of her loved ones. She advises others in similar situations to document their journey, capturing every moment, because it becomes an integral part of their identity. Her message to others is one of resilience and hope: while cancer is challenging, it is not insurmountable, and individuals can find a way through it with the right support and mindset.
Name:
Courtney L.
Diagnosis:
Follicular lymphoma
Grade:
Grade 3B
Initial Symptoms:
Intermittent back pain
Sinus issues
Hearing loss
Swollen lymph node in neck
Difficulty breathing
Treatment:
Chemotherapy
Thank you to Genmab 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.
My name is Courtney and I currently live in Wisconsin.
I was diagnosed in 2022 with grade 3B follicular lymphoma. I also have a triplet mutation.
Pre-diagnosis
Initial symptoms
I really didn’t start feeling sick or off for too long. My first sign that something wasn’t right was just 2 months before my diagnosis, in December 2021. I started having really bad back pain. It wasn’t present all the time, but when I did have it, it was severe — sharp, stabbing pain in the shoulder area.
I also started having shortness of breath and a lot of sinus issues. My nose was draining constantly. No amount of blowing would stop it. I also began to lose hearing in my left ear. I’d wake up in the morning and would be basically deaf in my ear. And then it would take a couple of hours to get the hearing back. And then that cycle would just repeat.
I also started to feel very tired, and talked about it to one of my coworkers at one point. I said, really wish I knew what was going on, because I shouldn’t be this tired.
One night in January, I woke up out of a deep sleep, and I can’t recall what woke me up, but I remember thinking, oh my gosh, I think I had a stroke. The next morning, I told my colleagues about it, and one of them took me to the emergency room. There, they scanned my brain and head, and they diagnosed me with a complex migraine and a panic attack. Because I have a history of anxiety and migraines.
Some time after that, I took a trip to Mexico. I woke up one morning, and I had a huge swollen lump on my neck, and nobody knew what it was. And I spent that whole week Googling “swollen neck” and trying to find out what it could possibly be. Plenty of what I found online said it could be cancer. But I convinced myself that it wasn’t, because the internet is going to tell you the worst thing.
But then I began to struggle to take the stairs — even just one flight of stairs was a challenge. And then even when I got back to Chicago, the pain continued to be a concern. I told myself, I’m going to go to urgent care because I go back to work on Monday. If I don’t go now, I’m not going to go. So I went to urgent care.
Diagnosis
When I was at urgent care, the doctor did some lab tests, and then sent me to the hospital. She told me, you should just go get a scan so we can just see what it is. She added, I will call you personally in a couple of hours to give you an update. So my labs came back while I was waiting for the scan. My platelets were slightly high, and everything else was fine.
But she called me a couple hours later — and she said that there was a large mass in my chest. She didn’t even tell me about my neck. You have to go back to the hospital, she said. At that point, I still didn’t know that meant cancer.
So, on February 12, 2022, I went to a different hospital to be admitted. The radiologist met me in the lobby and brought me directly to my room. And there he told me, you have follicular lymphoma.
I went, I don’t know what that means. He explained it, and then tried to reassure me by saying that I met the criteria for Hodgkin’s lymphoma, “the good kind”, thanks to my age and gender, and he said that I could have the mass biopsied in the morning. So I had some sense of hope.
But as it turned out, none of that was accurate, and I ended up with a kind of non-Hodgkin’s lymphoma instead. Mine is an aggressive, rare, incurable kind of cancer.
I can’t not talk about cancer.
It’s a part of me now. It’s a part of who I am.
Reaction to the follicular lymphoma diagnosis
When we received the diagnosis, my husband and I were just in shock. But between the two of us, he’s the one who rallies when he receives tough news, and I’m the one that falls apart. I might not feel like getting out of bed or the shower, I might say that I’m down, I’m done, I need some time.
So rally he did. He was at the counter scheduling the appointments. He was taking time off from work to drive me around. I didn’t have to worry about any of that, which was good because I couldn’t do it at the time. So that was great. That was everything that I needed.
As for my kids, I hate that for basically their whole lives, I will be sick. They’re not going to know any differently. But it will be all they know because they were so young when this all began. To look at it like in a good light, they were so young at the outset that they didn’t really know the difference.
Treatment for follicular lymphoma
After my diagnosis, there was no time to waste. They told me I needed chemotherapy right away. And I didn’t really have a choice — I mean, of course I could say no, but if I did, I was going to die. Within the 2 months that they thought that I had cancer, it had spread over my entire body.
I only remember a couple of things about the initial appointment at the cancer center, because I was still on pain mediciness back then. I couldn’t retain anything from that time because of my meds. I’m so thankful for my care team, my oncologist and the doctor who initially saved my life in urgent care. She’s now my primary care doctor. They are my people, they are everything to me.
I had surgery on the 13th of February. I had my PET scan, my port placed, and my bone marrow biopsy done, all within days. And then I started chemotherapy within a week.
I did a total of 6 rounds of chemotherapy. And although it was okay at first, after that, it wasn’t fun. It didn’t feel good. I would go home after my treatment, and that’s where I would get pretty sick afterwards. If I wasn’t at the cancer center, I wasn’t getting out of bed. But I think everybody who takes chemo responds to it differently.
Looking back at it, I wish they could have given me a checklist, some sort of record that I can refer to, because you want to remember experiences like that, you want to go back and know what you went through. But I do recall looking back and realizing how distraught I was. I was a wreck. And I also remember saying — am I going to die? I do know now that cancer is not a death sentence if you catch it early enough.
I did ask for statistics, numbers, but the doctor didn’t have them. She did say, though, that I would lose my hair. And that made it worse.
Why me? And why at this age? I don’t think I’ll ever stop thinking and asking that.
But it’s not just about me.
Loss of hair
The nurse practitioner I spoke with did the cancer 1-on-1 with me. She said, you will lose your hair with this. And that’s exactly what happened.
I woke up one morning after the first cycle, and my hair was just coming out. All I needed to do was touch it and it would come out in clumps, just clumps at a time. And that was really difficult for me because I have a lot of long hair.
We ended up just shaving it off. If I didn’t, it would hurt like crazy.
It was one of the worst days. But the hair does grow back.
Post-treatment
After my 6 chemotherapy rounds ended, I was thankfully in remission. But my follicular lymphoma is extremely high-risk, and this has affected my life even after my chemotherapy has concluded.
My last appointment or couple of appointments would have been 2 years out from the initial chemo session. My oncologist seemed to be on the verge of saying that we could start to space out the appointments since I was already at the 2-year mark, which is a big thing for us cancer patients, and maybe we could start seeing each other less. But then he checked himself and said, we can’t change your treatment schedule, because you really are too high-risk.
So now I’m 2 and a half years out from chemo, and that’s just great. But it does take a toll on me. Some days I feel that at my next check I’ll find that I’ve relapsed. Other days I’m more positive and I think, look, I’ve made it this far, I’ve beat all the odds.
It’s hard, it just depends.
Coping with her situation and helping others
When I’m having a really bad day, I let myself have a bad day. I know when my situation is overwhelming me. And when it comes to that, I just talk about it.
I can’t not talk about cancer. It’s a part of me now. It’s a part of who I am. And I don’t know if my need to talk about it is due to fear for other people or fear for myself.
The research out there says that it’s devastating for people my age. It’s a matter of catching it before it gets too late. So I want to bring awareness to the people around me who don’t think that cancer can touch them.
I used to not know what cancer was. Cancer is cancer, I thought, there’s no differentiation between the different sorts. Boy, was I wrong. There’s so much I don’t know about it yet.
So I try to talk about it in a way that can help other people, not just myself.
I have so many people around me whenever I need them.
I couldn’t ever have done this by myself.
Being diagnosed with cancer at a young age — and looking forward
Why me? And why at this age? I don’t think I’ll ever stop thinking and asking that.
But it’s not just about me. I also want to know why lots of people around me have been diagnosed with cancer recently, all different kinds of cancers. And none of them are better or worse than the other one. Some of my friends who have been diagnosed with different kinds of cancer have gone through worse treatments than I have. And hopefully, they will be cured.
I end up thinking, at least I don’t have to go through all those treatments like they are. But my case is different. The next step for me is a transplant, not more chemotherapy. I did ask about maintenance chemo and they said it wouldn’t be any more beneficial. I asked about genetic testing, too, because I’d also like to know if my kids need to be worried about this.
I’m young and I think my youth has helped me a great deal. My age has been on my side in this struggle. I also do know that grade 3B follicular lymphoma itself is extremely rare and is not treated as a normal lymphoma. And that’s where the difficulty lies. Determining the next steps and even navigating life itself now.
You don’t get many 30 year olds who have gone through this before. At my halfway chemo point, some people might have been clean at that point, and we were shocked that I hadn’t made progress. But I have hope that things will change. I see lots of research happening all the time across different areas. And though it is such a small percentage of people that have this, and the research isn’t being funneled my way, I hope that my time will come.
For example, I recently learned about CAR T-cell therapy. I got excited at the thought that maybe this would be my next step if I did relapse. It’s FDA-approved worldwide. It could work for me. So I have hope.
The importance of community
I have so many people around me whenever I need them; I couldn’t have ever done this by myself. I don’t think anybody can, so I just feel very lucky for all of it.
You can’t do this alone. And I am very lucky for everybody that I have around me, that listens to me, that lets me talk, lets me cry. That gives me a hug when I need it. That drops everything for me, takes me to appointments. My husband, my kids, my family, my friends, everybody.
I just I get emotional thinking about thinking about them all. I really am very lucky.
I don’t want to discount the things that I’ve gone through.
Because my experience wasn’t pleasant, but I’m all the better for it.
Advice Courtney offers
Record everything, including the first appointment, because you’re not going to remember it. Record yourself. Take photos. Even now, my brain doesn’t remember everything, so I keep on recording.
I don’t want to forget this part of my life, because it’s who I am now. I don’t want to discount the things that I’ve gone through. Because my experience with follicular lymphoma wasn’t pleasant, but I’m all the better for it.
I just hope that even 1 person hears me eventually and understands that it can happen to you, even if you don’t know what follicular lymphoma is and that there are different kinds of lymphoma, or even if you’re not aware of the basics of cancer.
Follicular lymphoma is not the end of the world. It might feel like it, but it isn’t. Yeah, you can be okay.
Special thanks again to Genmab for their support of our patient education program! The Patient Story retains full editorial control over all content.
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
Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs
Nicola is a mother and anesthetic technician who loves traveling and spending time with her dogs, cat, and 2 children. In 2020, doctors diagnosed her with colorectal cancer. By the end of 2021, she learned that her colorectal cancer had become stage 4 and had metastasized to her brain. After undergoing a craniotomy, she has been in remission for 9 months.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Initially, Nicola experienced rectal bleeding. Doctors thought it was nothing more than hemorrhoids, but eventually, they conducted a colonoscopy. The surgeon found a 4-cm tumor and performed surgery just before Christmas, and also discovered that 4 of her lymph nodes tested positive for cancer cells. She then underwent adjuvant chemotherapy, which is treatment to keep cancer from returning.
With no significant family history of cancer, although her father also had bowel cancer, Nicola’s case involved a non-BRAF, wild-type adenocarcinoma. Her chemotherapy initially made her very sick, leading to weight loss and hospitalization. Eventually, she switched treatments and completed 5 rounds before doctors declared her NED (No Evidence of Disease) for her stage 4 colorectal cancer.
Months later, Nicola began to experience symptoms such as profound migraines and vision changes. These led to the discovery of a large brain tumor; her original cancer had metastasized to her brain. She promptly underwent a craniotomy, which was deemed successful. Afterward, she received targeted radiation therapy, which thankfully did not significantly affect her vision.
Nicola remains under high-risk monitoring. She advocates for personal vigilance and early testing, sharing that she might have pushed for a colonoscopy sooner despite her age, had she known that younger people can get colorectal cancer. Now, she focuses on being present with her family and friends, and cherishes each day with gratitude.
Name:
Nicola H.
Diagnosis:
Colorectal cancer 2020
brain cancer
Staging:
Initial stage 3 in 2020
Metastasized to her brain in 2021 (stage 4)
Initial Symptoms:
Bleeding, pain (Colorectal cancer)
Focal migraines (Brain cancer)
Treatments:
Chemotherapy (Colorectal cancer)
Radiation (Brain cancer)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Scott’s stage 3 rectal cancer diagnosis stemmed from an annual physical where his doctor discovered blood in his stool. A follow-up colonoscopy revealed a tumor, even though he showed no other symptoms. This marked his second battle with cancer, having previously overcome testicular cancer in 1988 through surgery and radiation.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Scott emphasizes the importance of trusting his medical team and their treatment strategies. During his second cancer journey, the COVID-19 pandemic added complications. Despite initial fears about visiting healthcare facilities, he felt safer at his treatment center, the White Plains Cancer Center, due to the strict precautions in place due to the pandemic. His treatment began with chemotherapy, which eliminated the tumor before surgery became necessary. Though he managed chemotherapy with minimal side effects, radiation in 2021 proved more challenging, causing significant weight loss.
Scott emphasizes the importance of trusting his medical team and their treatment strategies. During his second cancer journey, the COVID-19 pandemic added complications. Despite initial fears about visiting healthcare facilities, he felt safer at his treatment center, the White Plains Cancer Center, due to the strict precautions in place due to the pandemic. His treatment began with chemotherapy, which eliminated the tumor before surgery became necessary. Though he managed chemotherapy with minimal side effects, radiation in 2021 proved more challenging, causing significant weight loss.
In April 2023, scans revealed lingering rectal cancer cells, requiring surgery. Scott underwent ileostomy surgery, lived with an ostomy bag for three months, and later had a reversal. Despite these challenges, he maintained an active social life, attending live music events even with the ostomy bag. He shares practical advice about handling the bag, emphasizing the importance of not letting it restrict one’s life.
Scott credits his positive mindset as being crucial to his resilience. He utilized visiting nurse services early in his recovery to gain confidence in managing his care independently. By staying focused on treatments and continuing activities he loves, he manages to find joy amidst adversity. His healthcare team, friends, and love for live music have been vital in keeping him motivated.
As a proud 2-time cancer survivor, Scott openly shares his experiences to inspire others. His closing message underscores the mantra that has guided him through both cancer battles: “Trust your team and trust the treatment.”
Name:
Scott M.
Diagnosis:
Rectal cancer
Staging:
Stage 3
Age at Diagnosis:
63
Initial Symptoms:
Blood in stool
Treatment:
Chemotherapy
Surgery (ileostomy)
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Diagnosed with Kidney Cancer—Then I Became My Mom’s Cancer Caregiver
Sonia shares her journey of being diagnosed with kidney cancer and the ensuing challenges she faced. She endured fatigue and persistent symptoms before her gastroenterologist finally ordered a CT scan. In December 2021, doctors discovered a suspicious tumor, and by January 2022, Duke Cancer Institute confirmed it as renal cell carcinoma. Despite significant complications, she underwent a successful partial nephrectomy in April 2022.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
As a cancer survivor, Sonia struggled to identify as one, feeling that her experience was possibly not severe enough. Her mom’s stage 4B ovarian cancer diagnosis shifted her role to both survivor and caregiver. Sonia highlights the importance of hope in fighting cancer and believes that it significantly impacts one’s ability to cope with challenges.
Sonia emphasizes the importance of advocacy and not hesitating to seek different medical opinions when necessary. She expresses gratitude for her supportive employer and highlights her youth, as kidney cancer typically affects older individuals.
Sonia advises others to prioritize finding the best care available, noting that the level of care directly affects cancer outcomes. She stresses the importance of support, both from healthcare providers and charitable organizations. Financial concerns also emerged, as her mother’s cancer fight led Sonia to temporarily leave her job, prioritizing her mother’s care over bills.
Sonia encourages focusing on what one can control and letting go of the rest, emphasizing the need to be proactive in seeking the best possible cancer care and support.
Name:
Sonia B.
Age at Diagnosis:
41
Diagnosis:
Kidney cancer (renal cell carcinoma, clear cell)
Staging:
Stage 1
Initial Symptoms:
Fatigue
Abdominal discomfort
Constipation
Flank pain
Constantly abnormal lab work
Treatment:
Surgery (partial nephrectomy, ileostomy)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers 1st Symptoms: Blood in urine Treatment: Nephrectomy (surgical removal of kidney and ureter) ...
Rashawn, a mother of 4 from Augusta, GA, is a 10-year stage 1 colorectal cancer survivor who celebrates her journey to health each year on April 28. Despite initial struggles, she maintains a 4.0 GPA while pursuing middle grade education after years away from school.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Rashawn’s cancer story began in 2014, when persistent fatigue and blood in her stool led her to seek medical attention. A colonoscopy revealed a golf-ball-sized mass in her colon, which was later confirmed as cancer. Determined to attend her son’s graduation, Rashawn underwent surgery within weeks, during which doctors removed a significant portion of her colon as well as a large number of lymph nodes. Recovery was challenging but marked by resilience, with support from her family.
Rashawn faced emotional and mental challenges post-diagnosis of stage 1 colorectal cancer, including confusion, fear, anger, being diagnosed with a different kind of cancer, and a lack of readily available resources for colon cancer patients. The absence of support groups and tailored education at the time left her feeling isolated. Over time, she developed strength through self-advocacy, faith, and a desire to help others. Rashawn emphasizes the importance of knowing one’s body and seeking prompt medical attention when something feels off, as delayed action can have severe consequences.
Today, Rashawn continues to manage her health vigilantly, undergoing regular screenings and addressing any concerns immediately. She attributes her survival to her proactive approach and strong support system, which included her mother, a breast cancer survivor, and her extended family. Despite lingering anxiety about recurrence, Rashawn finds purpose in sharing her story to raise awareness about colon cancer and empower others to prioritize their health.
Rashawn’s recovery journey also involved adapting to physical changes, such as altered taste buds and dietary habits. While challenges linger, she finds joy in helping others and living a life of gratitude. Rashawn practices her faith daily, expressing thanks and paying her blessings forward by assisting others. Her transformation into her best self over the last decade exemplifies resilience, faith, and purpose.
Rashawn advises others to trust their instincts, know their bodies, and seek timely medical care. By doing so, she believes more lives can be saved, and individuals can live fuller lives despite adversity.
Name:
Rashawn M.
Diagnosis:
Colorectal cancer
Staging:
Stage 1
Age at Diagnosis:
37
Initial Symptoms:
Extreme fatigue
Blood in stool
Treatment:
Surgery
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Emily, a 32-year-old from Alabama, was diagnosed with stage 4 colon cancer at age 27, despite having led an active and healthy lifestyle since her youth. Initially, she experienced abdominal pain and blood in her stool, which led to a life-changing ER visit. Doctors found a tumor in her colon, determined that it was cancerous, and also found that it had already spread to her lymph nodes. This discovery began a grueling series of surgeries, chemotherapy, and setbacks, including bowel obstructions and pancreatitis.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Emily endured multiple chemotherapy regimens with debilitating side effects like neuropathy, nausea, fatigue, and early menopause. Despite these challenges, her faith and determination kept her strong. When standard treatments failed, she turned to immunotherapy and clinical trials at Dana-Farber Cancer Institute. Although some therapies stopped working, she found hope in a clinical trial medicine that reduced her lung tumors by 20%. Despite the trial’s discontinuation, the treatment remains available to her, for which she feels immense gratitude.
Throughout her stage 4 colon cancer journey, Emily and her husband have relied on their faith, community, and a desire to help others. Recognizing the emotional and physical toll of cancer, they founded Fighting with Hope, a nonprofit that sends free chemo care boxes to patients worldwide. These boxes contain over 20 thoughtfully chosen items, such as blankets, ginger candies, and other sweets to help with port flushes, alongside handwritten notes of encouragement. With support from volunteers and media coverage, the organization has delivered just over 1,000 boxes to date.
Emily’s advocacy also emphasizes the importance of early detection. Reflecting on her missed diagnosis due to her young age, she urges healthcare professionals and patients alike to remain vigilant.
Despite ongoing treatments and the unpredictable nature of cancer, Emily remains a beacon of hope. Her faith provides her with peace and strength, enabling her to inspire others through her story and nonprofit work. She advises fellow patients to fight relentlessly, embrace their support systems, and accept help when needed.
Emily’s mission goes beyond her personal battle. She hopes her journey demonstrates the power of resilience, community, and faith in facing life’s greatest challenges. Through her advocacy, she continues to bring light and support to countless individuals navigating the trials of cancer.
Name:
Emily K.
Diagnosis:
Colon cancer
Staging:
Stage 4
Age at Diagnosis:
27
Initial Symptoms:
Abdominal pain
Blood in stool
Treatment:
Surgery
Immunotherapy
Targeted therapy
Clinical trials
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
