Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Jazz, a resident of Texas, shares his journey of being diagnosed with stage 3, borderline stage 4 colorectal cancer. His story began during a vacation in Hawaii when he experienced frequent bowel movements, discomfort, and rectal bleeding. Initially attributing his symptoms to hemorrhoids, Jazz delayed seeking medical attention until his girlfriend noticed his weight loss and urged him to see a doctor.
After a visit to the ER, Jazz’s hemoglobin count was dangerously low, leading to the discovery of a tumor causing internal bleeding. He underwent a colostomy surgery and learned that the tumor was cancerous. Despite the overwhelming emotions, Jazz remained positive, focusing on the support of his girlfriend and healthcare team. Over time, he also encountered other cancer patients, finding strength in their resilience and the uplifting environment in the chemo room.
Jazz describes his experience with chemotherapy, noting that although it was exhausting, he avoided severe side effects like hair loss or vomiting. He also reflects on the emotional toll of having a colostomy bag, which initially caused feelings of depression, but he learned to adapt. During his treatment, another tumor was discovered in his stomach, but doctors were able to remove it.
As part of his ongoing treatment, Jazz underwent chemotherapy, radiation, and will eventually have surgery to remove the remaining tumor. Despite the challenges, Jazz remains optimistic about his future, crediting his girlfriend’s unwavering support and the care of his doctors. He emphasizes the importance of never giving up, trusting in medical professionals, and finding strength in loved ones.
Jazz advises others to listen to their bodies, seek support, and never lose hope, believing that with the right mindset and help, it’s possible to overcome even the toughest battles.
Name:
Jazz P.
Diagnosis:
Colorectal cancer
Staging:
Stage 3/4
Initial Symptoms:
Constant urge to defecate
Slight anal bleeding
Weight loss
Treatment:
Surgery (removal of tumor)
Chemotherapy
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Brittany D., a 38-year-old stage T1b stomach cancer survivor, shares her journey from diagnosis to recovery. Diagnosed in June 2021, Brittany describes herself as a wife, dog mom, and nurse who loves fitness, fashion, and food.
Brittany’s cancer journey started unexpectedly with a choking incident at work, which led her to seek medical advice despite initially being reassured by her doctors. Brittany recalled experiencing neck and shoulder pain, difficulty swallowing, and a history of H. pylori infection, a risk factor for stomach cancer. She underwent a series of tests, including an upper endoscopy, after which her doctors found a 1-cm mass in her stomach which was eventually diagnosed as gastric adenocarcinoma with signet ring cells.
Upon learning about her diagnosis, Brittany sought expert opinions, researching and joining support groups, particularly No Stomach for Cancer and Stomach Cancer Sisters, which provided her with valuable information. She consulted several surgical oncologists before deciding to undergo treatment at Memorial Sloan Kettering Cancer Center in New York City with Dr. Sam Yoon, a specialist in early-stage stomach cancer. Dr. Yoon suggested a curative surgery without chemotherapy, to Brittany’s relief.
In Brittany’s surgery, 60% of her stomach was removed, along with 25 lymph nodes. Fortunately, the lymph nodes were cancer-free, and she did not require chemotherapy. However, the physical and mental toll of the diagnosis and recovery was significant. She lost weight due to fear of eating and experienced post-surgery challenges, such as dumping syndrome, which affects her digestion and energy levels. Learning to manage her diet became crucial, and she adapted to eating smaller, protein-rich meals frequently throughout the day.
The emotional impact of cancer has lingered, and Brittany sought therapy, mindfulness practices, and spiritual healing to cope with anxiety and the fear of recurrence. She emphasizes the importance of gratitude and a new perspective on life, realizing how precious it is after facing such a life-altering event. Though she still deals with physical challenges and occasional difficult days, Brittany is thankful for her recovery and strives to live with a greater appreciation for every moment.
Name:
Brittany D.
Age at Diagnosis:
35
Diagnosis:
Stomach cancer (gastric adenocarcinoma with signet ring cells)
Staging:
Stage T1b
Initial Symptoms:
Choking suddenly while eating and attempting to speak
Symptoms: None; found during the evaluation process for kidney donation Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation ...
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Anna, a Brooklyn-based photographer originally from Prague, Czech Republic, shares her personal journey through triple positive breast cancer. On her 37th birthday, Anna discovered a lump in her breast, which led to a breast cancer diagnosis. At the time, her son was 2 and a half years old, and she and her husband, Jordan, were contemplating having a second child. Her experience became a photo-documentation project, capturing her emotional and physical journey.
After discovering the lump, Anna immediately sought medical advice. Despite her gynecologist dismissing the need for immediate concern, Anna pushed for further tests. She learned that 40% of women have dense breast tissue, making mammograms less effective. An ultrasound revealed the tumor, and a biopsy confirmed the diagnosis: triple positive breast cancer. The news was delivered over the phone while Anna was at work, a moment that profoundly affected her. She recounts how Jordan’s mother, who had also survived breast cancer, helped them navigate the situation.
Anna underwent a lumpectomy, followed by chemotherapy and radiation. She describes the physical and emotional toll of the treatments, including the onset of menopause at 37 due to hormone therapy and the devastating impact on her fertility. The prospect of not having a second child was deeply painful for Anna, who felt grief and resentment over the situation. While people often told her to be grateful for her existing child, Anna explains that it’s possible to experience both immense love for one child while grieving the loss of the possibility of another.
Mentally, the experience was overwhelming. After her surgery and treatments, Anna found herself struggling with depression and even suicidal thoughts. She vividly remembers an intense moment, and how this experience convinced her to seek therapy and antidepressants. Jordan also played a crucial role in helping her recognize her mental health struggles, encouraging her to seek help.
Anna found solace in photography, using her camera to document her cancer journey. This project, initially personal, helped her process the trauma and provided a way to visually articulate her experience. She and Jordan collaborated on this project, which eventually turned into a book. The process of creating the book was both therapeutic and challenging, as it forced Anna to confront painful memories. However, the feedback from others who connected with her story through the photographs was incredibly healing.
Anna’s story also highlights the importance of survivorship. She discusses how society often overlooks the ongoing struggles of cancer survivors, assuming that once physical recovery is evident, the person is fully healed. For Anna, the emotional and psychological healing continues long after the treatments have ended, and her photography serves as a powerful tool in that journey.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Francina is a breast cancer survivor, a mother of 2, and a grandmother of 4. She enjoys traveling, going on cruises, and spending time with family and friends. Francina is an advocate for cancer awareness, working with the American Cancer Society Cancer Action Network and the Sister to Sister Alliance to educate communities on cancer prevention and the importance of early detection.
Francina discovered her breast cancer during a routine mammogram. After further tests, she was informed that the mass was cancerous. Despite the shock, she remained calm and turned to her faith, vowing to use her journey to bring glory to God. Her treatment journey included two surgeries, chemotherapy, and radiation, and thanks to biomarker testing, she received a treatment tailored to her specific cancer type. After going through these challenges, she is now cancer-free, and has been so for 6 and a half years.
Throughout her journey, Francina relied on her faith, support from family, and her church community. She credits her strength and positive mindset for helping her fight cancer, as well as the help of a close friend who accompanied her through treatment and recovery. She emphasizes the importance of self-breast exams, early detection, and knowing one’s family medical history.
Name: Francina B.
Diagnosis:
Breast Cancer
Staging:
Stage 2B
Initial Symptoms:
None
Treatments:
Surgery: lumpectomy; removal of cancerous sentinel nodes
Chemotherapy
Radiation
Thank you to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
You know, God has given me another chance and the opportunities afforded me not only enable me to use my voice, but also to enjoy life.
And that’s exactly what I’m doing.
Introduction
My name is Francina. I’m a breast cancer survivor. I am a mother of two, a daughter and a son and a Nana of 4. 2 boys and 2 girls. I am one who loves to travel. I love going on cruises. And I also love spending time with my family and friends.
I’m enjoying life. You know, God has given me another chance and the opportunities afforded me enable me not only to use my voice, but also to enjoy life. And that’s exactly what I’m doing.
Pre-diagnosis
Initial Symptoms
Well, I didn’t experience any symptoms. It was my annual routine mammogram, and maybe about a few days, maybe a week later, I got a phone call from my doctor.
They needed to do another mammogram and also ultrasound because they had seen a mass.
They wasn’t really sure what it was, but they were concerned.
Diagnosis
So I went and I got my mammogram done. I got my ultrasound done, and I was on my way to the gym.
As soon as I get to the gym, I get a phone call from my doctor that the mass was cancerous.
And she said, I’m going to set you up with other doctors, you pick what you want and go from there.
… you don’t hear everything that’s being said because you’re still trying to figure out them 3 words. “I have cancer.”
Reaction to the Diagnosis
And so I’m sitting in my car and so I call my pastor and I call her aunt.
And after that I said, you know what, God? Because I never questioned Him. I never asked Him why. I said, If I’m going to carry this, it’s going to be to Your glory.
I said, I’m not going to call my children yet because I know they’re going to have many questions. So let me go, wait and see and talk to my doctor, you know, get information so that I can share with them.
My concern was having to go home and tell my husband. So I went into the gym and I worked out. I went home and my husband was in the bedroom, and I went and told him, and immediately it was negativity. You know, you go there thinking the worst. And so I had to throw my hand up and said, I don’t receive that. And I walked out the room. And so it was a process.
I had a friend that I went to talk to. I used to take care of her son for 2 and a half years, and he had passed away. So I went to her, you know, and let her know what was going on. And she’s a godsend.
I thought that her son was my reason. No, it was her because she went with me through my whole cancer journey from day 1: treatments, surgery, changing my bandages. I mean, the whole bit. And even took notes that I didn’t even know she had taken.
Because, you know, when you go to see your doctor and they tell you that you have cancer, you know, your mind is all over the place. And you don’t hear everything that’s being said because you’re still trying to figure out them 3 words: I have cancer.
Treatment
Options
So my surgeon was very compassionate. He explained everything to me until I understood. He gave me options.
Then he said, you go home and you pray about it, and you come back and let me know what your decision is.
And in the process of having the lumpectomy done they found in my sentinel nodes that I had 3 cancerous cells. That means it was outside of the mass.
And so 2 weeks later, I had to have another surgery where they had to go into my armpit. And you have 3 tiers where they took out 2 tiers of cancers.
And it was clear. Clear margin. So the cancer had not spread. So that was a blessing.
So then I had to have a biopsy done so they would know what type of cancer I had.
Chemotherapy and radiation
So in the process of finding out what type of cancer I had, I was able to get a treatment that was tailor-made for my specific cancer. So I had the first round.
I had 4 rounds of chemo every 2 weeks, and then I had to have 12 rounds of another chemo.
The first chemo was doxorubicin, what we call Red Devil. That’s really a powerful, potent treatment.
And then I had paclitaxel, which was for 3 months.
After that, I had either 32 or 33 rounds of radiation.
And from there I was cancer-free. That was 6 and a half years ago.
Being Cancer-Free
And it was due to biomarker testing that at the time I did not know I had it done. I just found out the early part of this year. And it was that that contributed to the type of treatment that I needed for my specific cancer, which worked.
And like I said, to God be all the glory because I am cancer-free. I am healed.
And the moment when the doctor pulled me in and said, hey, your scans are clear. Oh, I mean, I was ecstatic, but I already knew because I had a conversation with God, you know, and he gave me 3 words as well. And his 3 words was: I got you. And when God said he got you, he got you.
So I never was stressed or worried about my cancer journey at all.
“I had people”
You know, everybody says something different, but it was just the stress mentally, you know, physically and emotionally of going through and the challenges that I had because of it.
I had to stop working, I was no longer able to work. And so in the process, I exhausted my savings. And so I had no health, no health care.
And so I applied for assistance, but I didn’t qualify, and I had no income.
But I had people.
My social worker was awesome. And she connected me to organizations as well as my niece, because I had a sister that passed away from breast cancer in 2015. So she wasn’t as fortunate.
So I used my voice on behalf of her as well as those that are next to me, but also coming behind me.
Advice Francina Wants to Share
Get tested
So based on my experience, I now advocate testing.
You know, we have to advocate. We have to stop being silent, being quiet, and to let people know cancer does not have to be a death sentence.
Early detection is key. And so, you know, you want to make a point of people to go ahead and get their screenings done. And those that are not old enough to have mammograms to do self-breast exams monthly.
So I’m about educating and giving information, you know, sharing my story, my journey so that I can help others along the way.
And my advocacy has also extended to me urging my daughter to get tested too. And she does get tested, every 6 months. And I also have a sister on my father’s side who also gets tested.
My niece also gets tested because it was her mother that passed away, and I’m her aunt. So, you know, you got to look at that connection. So they all are proactive in getting their screenings. They get MRIs and do self-breast exams as well. I have 2 granddaughters I’m trying to teach about doing self-breast checks.
When we go to health fairs, there are a lot of young adults that are not old enough to get mammograms, don’t know how to do self-breast exams, don’t even know about it. So I’ve asked them, you know, when you go get your physicals, do you talk to your physician? They say, no.
I said, when you go, you ask them to not only perform it, but to show you how to do it yourself, because a lot of times people find those lumps themselves. Also, they’ll be the first to see a change in their body.
So they need to know what to look for. So we like to educate and give information so they are aware.
Link with support groups
Connecting with support groups helped, surrounding myself with positive people. And also learning from them about people who beat cancer. Not just seeing the success, but gathering information from them.
But it was also inspiring to see patients who are now 5 years, 10 years, 20 years cancer free. You know, that was the stuff that gave me something to push forward to.
That can help you through your journey, because there are a lot of people that have already been through what we’re going through so they can help us.
You know, they can be an encouragement and inspiration to us and also be there to support us.
Cancer doesn’t have me.
I’m going to be in control.
It’s not going to take me.
Develop a positive mindset
And also having a positive mindset was so important.
Cancer doesn’t have me. I’m going to be in control. It’s not going to take me.
I’m going to enjoy my life, you know, and do some of the things that maybe I wouldn’t have normally do.
But, you know, just to be an inspiration and encouragement to other people that listen, you can fight this, you can beat this, you can overcome this. You can still have quality of life.
Put your mind to do the things that you want to do, and surround yourself with positive people. Get connected to support groups.
Lean on family and friends
It was so amazing to be supported by my church family, their prayers, having them rally around you and cheer you on.
Plus the support from my family was so heartening. Because when I did finally tell my children, my daughter looked at me. Mom, she said, you know, you’re a strong woman, you’re going to beat this.
My son wanted to run and come to his mama. You know, but they all know that their mama is a fighter.
I’m not one to give up. I’m not one to quit. So I’m going to push. I’m going to press.
But my daughter, every time I look around, she was leaving Maryland, coming to see about her mama. If I didn’t sound right on the phone, she was there.
So, like I said, my family means a lot, because they see me doing my journey. But it also helps them too, as we’re creating memories and also leaving legacies that they can follow and continue with.
Be aware of any family history
Another key thing that I tell people is, know your family history.
See, when I was growing up you didn’t ask questions as a child. So now all your matriarchs and the patriarchs are no longer here.
You know, you don’t have the information. So it has to start from me with educating my children and my grandkids.
And I’m seeing me when I’m going through and understanding what I do and why I do it.
So with their support and the support of my friends, you know, I’m I believe I’m making a difference.
Learn about biomarkers and why they matter
I also wanted to talk a little bit about biomarkers and their importance. Basically, they get a sample from your tumor and they test it, you know, and then and it determines the type of cancer that you have.
Well, I’m still learning about biomarker testing, but what it did for me was it was able to target the type of cancer that I had. So a lot of people are not aware that they’ve had it done because, you know, you didn’t hear of it. Even my doctors, they didn’t tell me anything about biomarker testing.
It was my advocacy group that was discussing it because it’s something that we’re trying to get out there trying to talk with our lawmakers. Making that a policy. We’re not there yet. So we’re trying to get petitions and we’re educating, you know, our lawmakers. With personal stories.
That’s something that we could bring to the table when it comes to insurance companies, because right now, a lot of insurance companies will not pay for it because they feel that it’s experimental. But when you got these positive outcomes from people who have had it done to me, you know that makes it makes a difference.
So now they can go back and see, okay, what treatment would be best to combat this type of cancer. And so for me, that’s what they did.
So the regimen that I was on, even though it was hard, it was something that did what it needed to do. And that’s why I am cancer-free because it was targeted for my specific cancer.
It’s cost effective because, if you really don’t know what you what you’re dealing with, you don’t really know what type of treatment is best for that. You’re trying different regimens and it puts a lot of stress and strain on the patient.
But if you’re a doctor and you know something is targeted that this is going to work for this type of cancer, if you use this type of treatment, this medication, then, okay, you’re saving your patient, but you’re also giving that that person quality of life and also extending their life.
I want everybody to be advocates for themselves.
Because who knows your body better than you do?
Advocate for others—and yourself
Let me finish by sharing the most important efforts in the work I’m doing with the American Cancer Society when it comes to the black and African American community.
Bringing about awareness, equipping them, empowering them to get out there and to do what they need to do for themselves. Leading by example. Sharing my story with them and letting them know.
Again, cancer is not a death sentence. Early detection is key. We must get out there and do our screenings, and also do our monthly breast exams, and not allow fear to keep you from getting the care.
Because everybody deserves to have some type of quality care.
I want everybody to be advocates for themselves. Because who knows your body better than you do?
And sometimes you go to doctors and you tell them things are going on and they push you off. And my thing is, if you go to a doctor and they cannot do what you’re asking or requiring them to do, go somewhere else where somebody will.
Because there are people that have been diagnosed and they’re already stage 3. Stage 4. Whereas if they would have had it done initially, they may have caught it earlier.
So we have to also be advocates for ourselves. We deserve to have care. We deserve to be listened to and to be understood.
Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Ashley, a 35-year-old ICU nurse from Michigan, shares her intense journey with adrenocortical carcinoma (ACC), a rare and aggressive cancer.
In February 2023, she discovered she was pregnant with her third child. Although her pregnancy initially seemed normal, at 9 weeks she began experiencing concerning symptoms, including swollen ankles. Subsequent medical testing revealed a copy number variation, a rare condition linked to the possibility of blood cancer or tumors. An MRI later uncovered a football-sized tumor on her adrenal gland.
Ashley underwent surgery on May 31, 2023, to remove the tumor. The procedure was complicated, and she lost a significant amount of blood. Tragically, the day after surgery, her unborn son, Noah, passed away. Ashley was devastated but remains very grateful for Noah’s role in prompting the medical procedures that revealed her cancer.
Ashley had to undergo more surgeries, including open-heart surgery, after part of the tumor blocked her pulmonary artery. A few days after these surgeries, her doctors diagnosed her with stage 3 adrenocortical carcinoma. Though they initially declared her cancer-free after surgery, a follow-up scan in July 2023 showed that the cancer had spread to her liver, advancing to stage 4. Determined to seek the best care, Ashley connected with a specialist, Dr. Gary Hammer, at the University of Michigan Hospital.
Ashley’s treatment journey involved multiple rounds of chemotherapy and a switch to immunotherapy when her tumors showed minimal response to initial chemotherapy. She also underwent liver surgery and radiation, but in July 2024, scans showed that the cancer had spread to her lungs. Ashley’s doctors proposed a new chemotherapy regimen, but insurance challenges prevented her from accessing it. After unsuccessful multiple appeals, she had to return to her original chemotherapy plan with modifications.
Despite the physical and emotional toll, Ashley maintains a positive outlook, staying active with her family and involving herself in holistic treatments to complement her cancer care. She has also become an advocate, raising awareness of ACC and the difficulties of dealing with insurance companies. Through it all, Ashley remains determined to fight her cancer, focusing on her family as her primary motivation. She emphasizes the importance of self-advocacy, never giving up, and continuing to pursue every possible treatment.
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods
Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib) ...
Kelsey, from Wisconsin, is a young mother and wife, a former dancer and an art and communications major from Coe College in Iowa. She experienced a life-changing brain cancer diagnosis at the age of 30.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Before her diagnosis, Kelsey was active and passionate about weightlifting. Life took an unexpected turn in May 2023 when Kelsey began experiencing numbness in her left arm. It was initially dismissed as anxiety or a potassium deficiency. After several episodes, Kelsey suffered a seizure, prompting an emergency CT scan. This revealed a 4-centimeter brain tumor in her parietal lobe.
The news was shocking, particularly as Kelsey’s grandfather had died from glioblastoma, a type of brain cancer. She was admitted to the hospital immediately and underwent successful brain surgery, with 98% of the tumor removed. However, the emotional toll during her recovery was immense. Kelsey felt numb and disconnected as she awaited pathology results. They confirmed she had a grade 3 astrocytoma with an IDH1 mutation—a type of brain cancer with a 5-year survival expectancy.
Kelsey’s treatment plan began with 33 rounds of radiation, followed by chemotherapy with the drug Temodar (temozolomide). She described handling side effects like nausea and fatigue well, though she dealt with extreme tiredness and brain fog. Throughout her journey, Kelsey has had an immense support system, including her family, husband, and in-laws. Her positive mental attitude has also been a crucial part of her coping mechanism, reinforced by her optimistic upbringing.
A major turning point came when molecular testing revealed that Kelsey’s cancer had a specific mutation that slowed its growth. This extended her life expectancy from five years to potentially 12–15 years. Additionally, a new FDA-approved drug, targeted to her specific mutation, offered hope of turning her cancer into a manageable chronic illness rather than a terminal one.
Kelsey has been documenting her cancer journey on TikTok, which has been both a form of video journaling and a way to connect with others in similar situations. She credits her transparency and openness with helping her process emotions and maintain a strong connection with her husband. Kelsey also advises others on the importance of mindset, advocating for maintaining hope and a positive outlook, even amidst the challenges of cancer.
In closing, Kelsey shares an impactful story from a woman who told her there was “magic in cancer,” referring to the perspective shift it brings. Despite its difficulties, Kelsey now values the profound sense of living in the present, which she considers to be one of cancer’s unintended gifts.
Name:
Kelsey S.
Age at Diagnosis:
30
Diagnosis:
Brain cancer (astrocytoma with an IDH1 mutation)
Grade:
Grade 3
Initial Symptoms:
Tingling and numbness in left arm and hand
Sensation progressed to her leg
Seizures
Treatment:
Surgery (craniotomy)
Radiation
Chemotherapy (Temodar [temozolomide])
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Ashley, a 36-year-old mother of two, living in Northern California, shares her experience of being diagnosed with stage 4 non-small celllung cancer.
Ashley had initially experienced trouble swallowing, chest pain, shortness of breath, fatigue, and swelling in her body. Prior to her diagnosis, she dealt with repeated misdiagnoses and medical gaslighting. Specialists brushed off her symptoms as due to work stress or anxiety, or misdiagnosed her with conditions like asthma, pneumonia, and long COVID. It wasn’t until a trip to the emergency room, where doctors discovered blood clots and conducted a CT scan, that her lung cancer was revealed. It took Ashley by surprise; she had no history of smoking and was otherwise healthy and very active and athletic.
Ashley reflects on the biases in healthcare, particularly against people who don’t fit traditional risk profiles for lung cancer. She explains how her healthy appearance and lack of smoking history contributed to doctors dismissing her symptoms for over a year. She believes that this is a systemic issue in healthcare, not just individual doctors’ fault. This is why she advocates for the importance of self-advocacy and trusting one’s body.
After her diagnosis, Ashley underwent chemotherapy, radiation, surgery to remove one lung, and immunotherapy treatments. She notes the importance of biomarkers in determining treatment for lung cancer. She does not have any biomarkers, which limited her options to immunotherapy, radiation, and chemotherapy. Her experience included serious side effects, including liver failure from immunotherapy. She had to stop immunotherapy and explored other treatment options, including clinical trials and further radiation therapy.
Ashley emphasizes the need for patients to advocate for themselves and seek second opinions. She shares her experience with various doctors, particularly the importance of one doctor making eye contact and truly listening to her concerns, which helped her feel validated.
Ashley’s journey has taught her the value of mental health support, palliative care, and integrative services, such as physical therapy and nutrition. She highlights the importance of having a support system, both in terms of healthcare providers and loved ones, to navigate the complexities of cancer treatment. Despite the challenges, Ashley remains proactive in managing her care and encourages others to stay informed and engaged in their treatment.
Name:
Ashley V.
Diagnosis:
Non-small cell lung cancer
Staging:
Stage 4
Initial Symptoms:
Trouble swallowing
Shortness of breath
Fatigue
Loss of appetite
Chest pain
Swelling in her body
Treatment:
Surgery (removal of lung)
Chemotherapy
Immunotherapy
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Hannah’s story begins in 2014 or 2015, when she first experienced symptoms such as pelvic cramping and bloating. Over time, her symptoms worsened, leading to more frequent UTIs and alarming signs like blood in her urine by 2022. Despite these symptoms, doctors initially dismissed her concerns, attributing her issues to common health problems or “white coat syndrome.” It wasn’t until December 2022, when her blood pressure spiked significantly, that a trip to urgent care led to a CT scan. It revealed a mass on her appendix, which doctors suspected was cancer.
Hannah describes the emotional toll of waiting for a diagnosis, especially the fear and uncertainty that followed the news that her cancer had likely spread. In late December, she received the devastating diagnosis of stage 4 appendix cancer with signet cell ring features, a rare and aggressive form. After an underwhelming and confusing initial consultation with her doctors, she and her husband sought a second opinion at Mayo Clinic, where a specialist provided a clearer plan of action and more promising news. Although her cancer was high grade, only 50% of it showed the signet cell features, which gave her hope.
Hannah’s treatment plan included 5 rounds of chemotherapy before undergoing a complex 12-hour surgery in April 2023. The surgery involved removing several organs, including her ovaries and uterus, as well as parts of her colon and ureter. This news was particularly hard to process, as it meant the end of her hopes for having biological children. She also had to deal with various physical challenges during recovery, such as learning to digest food again, managing pain, and dealing with temporary tubes and a catheter.
Despite the overwhelming circumstances, Hannah continued to push herself, slowly regaining strength with the support of her husband and sister. She also found solace in connecting with others through appendix cancer support groups, which helped her cope with the isolating nature of her rare diagnosis. Genetic testing confirmed that her cancer wasn’t hereditary, and a follow-up test after surgery indicated she was cancer-free at that time.
However, in early 2024, doctors detected a small spot on her lung, which they suspected was a recurrence of the cancer. She underwent 5 rounds of radiation, which she described as the easiest part of her treatment. Though her recent scans suggest another recurrence, Hannah remains focused on living fully, cherishing her relationships, and advocating for herself in the medical system.
Hannah’s key message to others facing similar health challenges is the importance of self-advocacy, seeking second opinions, and doing thorough research.
Name:
Hannah R.
Age at Diagnosis:
30
Diagnosis:
Appendix cancer (mucinous adenocarcinoma of the appendix; appendix cancer with signet cell ring features)
Staging:
Stage 4
Initial Symptoms:
Bloating
Fullness
UTIs
Blood in urine
Pain during intercourse
High blood pressure
Spotting
Treatment:
Surgery (appendectomy, cytoreductive surgery)
Chemotherapy
Radiation to treat recurrence
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
John, a 63-year-old diagnosed nearly a decade ago with follicular lymphoma, shares his journey. Initially, he did not follow a typical diagnostic path. His wife and others noticed swollen lymph nodes in old photos, helping lead to the realization that the cancer had been present since 2001. Due to the nodes’ waxing and waning nature, John spent 14 years unaware that he had cancer.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Upon diagnosis, John’s primary care physician, also a long-time friend, could not meet John’s eyes, sparking John’s suspicion. The confirmation came from a third doctor, who explained follicular lymphoma‘s indolent or slow-growing nature and presented various treatment options. John’s diagnosis prompted him to reevaluate his life, focusing on living rather than fearing death.
John consulted lymphoma specialists from prestigious institutions in Chicago. He learned more about his condition, discovering that the average lifespan post-diagnosis was 18 years, which has since improved due to advances in medicine and technology.
Eventually, after evaluating his options, John elected to participate in a clinical trial involving an exploratory drug. The trial was risky, and the documents openly stated potential fatal outcomes. His brother, with a background in microbiology, offered some support. John learned to navigate medical literature and ask critical questions, becoming actively involved in his health decisions.
Living in Chicago facilitated John’s participation in the trial, though the impact on his business was significant. He went from working extensively to being incapacitated, sleeping up to 19 hours daily. Fortunately, he had saved money, preventing financial hardship.
The trial initially yielded positive results, eradicating most of the cancer, but the effects were short-lived. After failing 6 different treatments, John and his doctors creatively combined 2 drugs, despite insurance challenges. Drug manufacturers supported the cost of the second drug, leading to a successful treatment. In July 2022, John achieved his first complete remission, and by May 2023, he ceased oncology treatment, awaiting further clinical evaluations.
John’s journey taught him to understand and empathize with those who choose to quit fighting cancer. He emphasizes the importance of self-advocacy and the importance of overcoming one’s fears. John underscores the necessity of trust in clinical trials, stating that he aims to help others through his experiences and involvement in his own clinical trial.
Name:
John S.
Diagnosis:
Follicular lymphoma (non-Hodgkin lymphoma)
Staging:
Stage 4
Initial Symptoms:
Swollen lymph nodes
Treatments:
Clinical trial
Chemotherapy
Thank you to Genmab for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I decided to give something back and help others through joining [a] clinical trial.
One of the things I think all of us want to do is to matter in some way and shape, whether it’s small or large or however it winds up being.
Introduction
My name is John.
I was diagnosed almost 10 years ago now, and at the age of 53, with follicular lymphoma.
Pre-Diagnosis
I wound up not having a typical pathway.
Some years ago, my wife at the time had pulled out a picture of us with our daughter at Disney World.
My wife goes, oh, look at your neck. You know, you could see that I had swollen lymph nodes.
And through checking through other old photos, where my lymph nodes were waxing and waning and so on, we were able to infer that I’d actually had cancer since 2001.
Not that any of the doctors I was seeing then ever did anything wrong, because that’s pretty normal when you get sick. Your lymph nodes grow and then they shrink. So if they do grow and then normalize after 2 or 3 weeks, we just shrug them off.
So I had at least 14 years of not knowing I had cancer.
Diagnosis
My cancer was diagnosed almost 10 years ago now.
I went through the process, talked to my primary care physician, who had been my friend for 10 or 15 years at the time as well as being my doctor.
Some of my background is reading body language, and I kind of figured something was not quite right. He couldn’t look me in the eye.
So I started suspecting that something was going on. It wasn’t until I got to speak to a third doctor that I knew for sure that something was up.
I was active as a youngster, you know, broken bones, surgeries, all that kind of good stuff. So I’m used to walking into a doctor’s and being told that, say, my arm is broken and we’re going to put it in a cast.
So I walked in there and received my diagnosis of follicular lymphoma. Some cancer diagnoses are pretty well defined, but follicular lymphoma at the time wasn’t.
So I had a conversation with him, and that’s when I came to understand that it is incurable, but is also an indolent form of cancer, one that’s slow-growing. That it wasn’t something I needed to get out of my body immediately.
The third doctor I saw, who had diagnosed my cancer, pulled out the NCCN guidelines, what I call the “oncologist encyclopedia”, and he had photocopied some pages for me, to help me learn more about follicular lymphoma.
He also explained the different treatment options available to me. He basically said, there are 4 options available to you, whenever you want to start. In my mind, I was like, wait a minute, you’re the doctor. Why are you giving me options? This was yet another of the lessons I needed to learn about follicular lymphoma and cancer in general.
I had a lot to learn about follicular lymphoma.
I decided to start living life versus fearing death.
Reaction to the diagnosis
So when you’re hit with this diagnosis, you all of a sudden start to examine your life. You start looking at things and evaluating them differently.
I started to understand that there’s a finish line here on Earth and it applies to all of us. And whether you have faith or not, it becomes irrelevant.
Once you hit that finish line, there’s no coming back, no redoing anything.
So for me, I decided to start living life versus fearing death. Or trying to avoid death versus moving forward.
For me, it was a blessing because it helped me look at things differently.
Treatment options and plan
The third doctor also told me that I should consult some experts in lymphoma.
At the time, I lived in Chicago, and some pretty reputable doctors and facilities were available to me, like Northwestern, the University of Chicago, and Loyola. And he also gave me some of the names of the top lymphoma specialists — one of whom, it turns out, is actually one of the top experts in the world in this sphere. And so I started to reach out to them.
I had no idea what to ask these experts, but ask them I did, and by the time I had gotten to the third doctor, I had a better idea of what questions to ask them.
I had also learned that the average lifespan of a follicular lymphoma patient at that point in time was 18 years after diagnosis — although this has now changed given the advances in technology since then and is closer to the lifespan of a healthy person.
I literally lit up like a Christmas tree at my Pet scan. That was enough to unsettle me a bit. But the doctors all were of a mindset that this is borderline watch and wait, because of the indolent nature of my cancer. They said, you don’t really need to do anything.
Though when I talked to my third doctor and asked her what the prognosis was, she said to me matter-of-factly, we’re going to beat it down.
It’s going to come back, and when it does, we’ll beat it down again, and we’re going to continue this until we can’t beat it down any longer.
And as we continue down the pathway, they’re generally going to be shorter and shorter remissions, and it’s going to come back more aggressively each time.
So when you’re hit with this diagnosis, you all of a sudden start to examine your life.
You start looking at things and evaluating them differently.
Clinical trial
One of the options for me was to undergo a clinical trial, and this is what I ended up doing. It involved a pretty benign exploratory drug, and I was the 8th or 9th person to join the trial, which put me in the 3rd cohort.
That being said, though, the trial is serious stuff. The documents and literature they provide are open about the possibility that people who join the trial could die from its effects.
It’s also about making decisions about things that you don’t know about, and which your doctors don’t know about either. And they’re upfront about it — look, we don’t know if this will or won’t work or if it will or won’t help you. That’s why the drug is in a clinical trial.
It helped a little bit that my brother has a background in microbiology and has been in the field for about 40 years — not as a researcher, but in the business side of things — and also has a lot of contacts.
But I also started to delve into reading medical papers, not that I understood them all. I had to use Google quite a bit to define some terms, but I did start to get a better understanding of things and what possibilities there were for me.
The clincher for me was that I decided to give something back and help others through joining the trial. One of the things I think all of us want to do is to matter in some way and shape, whether it’s small or large or however it winds up being. And in my particular case, one of my bucket list items was to help other people learn, and to use the time I had left wisely.
So that’s why I decided to go down the clinical trial path.
Making informed decisions and becoming the CEO of his own health
Since I was going to have to make an informed decision regarding the follicular lymphoma clinical trial and of course moving forward, I was going to basically become the CEO of my own body. That’s the way I would like to describe it.
You’ll get competing points of view from different doctors and experts. It’s not that they’re in disagreement with each other. It’s that they have different patient experiences.
You have to get comfortable dealing with uncertainty, with the unknown and your fear of it. And understand that since you’re going to have to make an informed decision, you’ll need to properly educate yourself. And, of course, learn to ask questions.
One of the questions I’d ask every single one of my doctors, whenever they’d put a possible option forward, is: why do you think that’s the best option?
And in addition: what are the other options that are out there, whether or not you have access to them?
Since I was going to have to make an informed decision regarding the clinical trial and of course moving forward, I was going to basically become the CEO of my own body.
The logistics of joining the clinical trial
It really helped that I was in Chicago at the time. Had I not been there, having to relocate to join the trial would have been quite challenging and time-consuming.
It’s good, though, that there is help available for those who need to travel to get treatment.
Some of the hospitals and cancer centers can help with ambulances, including flight ambulances, and there are a slew of charitable organizations that can also help make a pathway for you.
This sort of help could do nothing to offset the impact on my business. I was doing quite well before I got sick, and I basically went from making what I was making to zero. I basically went from working 70 hours a week to having to sleep about the same length of time because of my treatment. There was a point in time that I was sleeping 18 or 19 hours a day.
I was very fortunate that I had put away some money. A lot of people run into financial hardships because of these kinds of things.
Treatment progression
So under the trial, I had 4 little shots of the drug.
I experienced some CRS and had to go to the emergency room for a little bit, my temperature kept going up, and my heart rate kept going down too. And other things happened, like my neck got swollen, though that subsided.
But the results were pretty good. It wiped out nearly all the cancer.
Sadly, the good effects only lasted a month or a month and a half. The cancer came back.
So we ended up switching treatments and trying different lines of treatment. Some ended up working for a little while and others just didn’t work at all.
You have to try to overcome your fears.
That’s a big thing when it comes to cancer and cancer treatments.
Trying other options — and success
All told, I ended up failing no less than 6 lines of treatment in less than 4 years, and chemotherapy hadn’t worked.
Based on my doctors’ experiences, they judged that it would be better to start trying different things. And of course this was no less than a life-threatening situation.
So we decided to get creative and put two drugs together.
I’m thankful for the support we had for this. My insurance said they could pay for one drug but not the other. And that’s where the drug manufacturers stepped in and supported the second drug. They provided the medicines free of charge for the next 3 and a half years. They were just looking to help out.
The idea to do this was based off my situation, which was unique. And it finally worked.
After about 3 and a half years on the protocol, I achieved my first true complete response. A clean scan in July 2022.
May 31, 2023 is when we stopped all oncology treatment. And we did one more scan and we haven’t done one since. We’re going to kind of go clinically to see where this goes. They’ve told me that if I want to have a scan, we can do one.
Words of advice
You’ll find that when it comes to cancer, there are people who want to fight and there are also those who want to quit.
I never used to understand those who want to quit, but I’ve learned to do so. It’s important to try and not be judgmental about it.
Clinical trials aren’t for everybody. That’s for sure. If you’re going to do them, you need to be comfortable with the unknown, as I mentioned.
If you decide to join a clinical trial, you should feel comfortable with your doctors and trust them with your life, even though they’re pretty open that they don’t know how things will go with your trial. And you need to find a team you’re comfortable with.
You have to try to overcome your fears. That’s a big thing when it comes to cancer and cancer treatments.
For me, as I mentioned, joining a clinical trial had a great deal to do with wanting to give back, with helping others learn.
Special thanks again to Genmab for their support of our patient education program! The Patient Story retains full editorial control over all content.
Amanda, who hails from north of Baltimore, MD, shares her experience being told she had brain cancer, specifically astrocytoma grade 4. She was initially diagnosed with glioblastoma in January 2024. She describes the peculiar symptoms that led to her diagnosis, including sensations in her mouth and throat that felt like eating “pop rocks”; numbness in her face and hand; and multiple focal seizures. These eventually prompted her to seek medical care.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
After Amanda underwent various tests, she also took a CT scan, which revealed a grape-sized mass deep in the left side of her brain. She transferred to the University of Maryland for treatment, where doctors recommended surgery to remove the tumor. She also participated in a clinical trial involving Laser Interstitial Thermal Therapy (LITT) to burn away the tumor. An intense five-day proton radiation therapy session, a more concentrated treatment than the typical six weeks of radiation, followed.
Amanda’s brain cancer treatment has been extensive, including chemotherapy which she takes at home. She has completed 5 rounds of chemotherapy and is preparing for her 6th, with a plan to take a total of 12 rounds. Despite her challenging diagnosis, Amanda considers herself fortunate to have access to treatments and fertility support, having undergone egg freezing before starting chemotherapy.
Amanda reflects on the mental and emotional toll her brain cancer diagnosis has taken. Initially, feelings of anger and grief consumed her, and she felt that cancer was taking her life and plans away from her, particularly with her new marriage. However, she has found peace through her faith and therapy, working through unresolved fears and guilt from her past. Amanda also emphasizes the importance of maintaining a sense of normalcy and continuing to engage in activities that bring her joy, such as working out and spending time with her family.
As she navigates the uncertain future, Amanda shares that her brain cancer is incurable, but her hope is to maintain stability through ongoing treatment. She encourages others facing similar diagnoses to view their experience as an opportunity to rebuild themselves and reflect on what truly matters. Her message is one of resilience and embracing life, even when faced with daunting challenges.
Name:
Amanda P.
Age at Diagnosis:
27
Diagnosis:
Brain cancer (astrocytoma)
Staging:
Grade 4
Initial Symptoms:
Strange sensations in mouth and throat
Focal seizures
Treatment:
Chemotherapy (temozolomide)
Laser Interstitial Thermal Therapy (LITT)
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
