Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Nicole, 42, from the Tampa Bay area in Florida, shares her experience battling ovarian cancer in 2022, 15 years after a battle with breast cancer.
Initially, Nicole experienced unexplained symptoms, including extreme abdominal pain, nausea, frequent urges to urinate without success, and chest pain. Despite undergoing multiple tests and consulting specialists, she was told by various doctors that nothing was wrong. Her symptoms worsened, leading her to experience pain while eating and feeling constantly full. After visiting the ER, she was dismissed with advice to take a stool softener, leaving her frustrated and in worsening pain.
It wasn’t until a routine visit to her ob-gyn that Nicole received a proper diagnosis. Her doctor recommended an ultrasound, which revealed a large mass on her omentum. Further tests led her to Moffitt Cancer Center, where it was discovered that the cancer had spread to areas near her clavicles and heart, explaining her chest pain.
Nicole began chemotherapy, undergoing 7 treatments every 3 weeks. Having experienced chemotherapy for breast cancer in 2009, she noted advancements in treatment, such as the cold cap, which helped her keep her hair—a small but meaningful comfort during her second cancer battle.
Nicole’s chemotherapy sessions were successful in reducing her CA125 levels from an alarming 3,300 to much lower numbers after each treatment. After 4 sessions, scans showed that the cancer near her clavicles had disappeared, clearing her for surgery. In April 2023, she prepared to undergo a total hysterectomy. During the operation, her oncologist found that her cancer had spread to multiple organs, including her liver, diaphragm, and intestines, requiring a much more extensive surgery than anticipated. Despite the grueling recovery, including severe pain and breathing difficulties, Nicole pushed through.
Following surgery, Nicole completed her remaining chemotherapy sessions and began treatment to prevent cancer recurrence. Despite a brief hospitalization due to low platelet levels, she has been cancer-free since July 2023.
Throughout her journey, Nicole reflects on the emotional toll the diagnosis took on her, recalling how she leaned on her husband for support but often found herself crying in private. She acknowledges the strength she found in herself and her gratitude for being able to be there for her family. In July, she and her husband finally shared her cancer journey with their children. Now, they actively participate in awareness activities, supporting both breast and ovarian cancer causes.
Nicole advises others to trust their instincts and not let doctors dismiss their concerns, emphasizing the importance of self-advocacy in her survival.
Name:
Nicole L.
Age at Diagnosis:
40
Diagnosis:
Ovarian cancer
Staging:
Stage 4
Initial Symptoms:
Extreme abdominal pain
Nausea when in a moving vehicle
Frequent urge to urinate (often unsuccessful)
Chest pain
Treatment:
Chemotherapy
Surgery (removal of cancer from liver, diaphragm, bladder, small intestine; total hysterectomy)
Cold cap
PARP inhibitor
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Audrey’s cancer journey began after a series of health complications in late 2022. Initially, she suffered from respiratory issues and pneumonia, followed by persistent symptoms such as night sweats, fatigue, and severe chest pain, which led to multiple visits to the ER and various specialists.
Despite early dismissals by some doctors, Audrey’s persistence paid off when a CT scan revealed a pulmonary embolism. This marked the start of a challenging summer, during which she was diagnosed with a blood clot, pericarditis, and tricuspid valve insufficiency or tricuspid valve regurgitation. However, Audrey felt there was more going on and sought further testing. In August, swollen lymph nodes in her neck prompted her to request a full-body PET scan, which revealed a tumor on her thyroid.
With a family history of thyroid cancer, including her mother, Audrey underwent a biopsy in October 2023, confirming her cancer diagnosis. She sought treatment at the Mayo Clinic, where further tests revealed lymph node involvement but no vascular invasion. Audrey underwent surgery in November 2023, which included a right central neck dissection to remove the tumor and affected lymph nodes. Post-surgery, she faced complications with calcium regulation, leading to ongoing supplementation.
Despite these challenges, Audrey’s tumor markers have decreased, and she was told she was in remission in February 2024. Throughout her journey, Audrey credits her faith, family, and supportive friends for helping her navigate the uncertainty. She emphasizes the importance of advocating for oneself in healthcare and maintaining hope, even in difficult times.
Name:
Audrey B.
Age at Diagnosis:
25
Diagnosis:
Thyroid cancer (papillary thyroid carcinoma with tall cell variant features)
Staging:
Stage 2
Initial Symptoms:
Respiratory issues
Pneumonia
Night sweats
Severe fatigue
Sharp pain in lower left lung area
Shortness of breath
Treatment:
Surgery (total thyroidectomy, parathyroid transplant, central neck dissection)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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 and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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
Symptoms:
Choking suddenly while eating and attempting to speak
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Francina is a breast cancer survivor, a mother of 2, and a grandmother of 4. She enjoys traveling, going on cruises, and spending time with family and friends. Francina is an advocate for cancer awareness, working with the American Cancer Society Cancer Action Network and the Sister to Sister Alliance to educate communities on cancer prevention and the importance of early detection.
Francina discovered her breast cancer during a routine mammogram. After further tests, she was informed that the mass was cancerous. Despite the shock, she remained calm and turned to her faith, vowing to use her journey to bring glory to God. Her treatment journey included two surgeries, chemotherapy, and radiation, and thanks to biomarker testing, she received a treatment tailored to her specific cancer type. After going through these challenges, she is now cancer-free, and has been so for 6 and a half years.
Throughout her journey, Francina relied on her faith, support from family, and her church community. She credits her strength and positive mindset for helping her fight cancer, as well as the help of a close friend who accompanied her through treatment and recovery. She emphasizes the importance of self-breast exams, early detection, and knowing one’s family medical history.
Name: Francina B.
Diagnosis:
Breast Cancer
Staging:
Stage 2B
Symptom:
None
Treatments:
Surgery: lumpectomy; removal of cancerous sentinel nodes
Chemotherapy
Radiation
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.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, 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 and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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
Symptoms:
Trouble swallowing
Shortness of breath
Fatigue
Loss of appetite
Chest pain
Swelling in her body
Treatments:
Surgery (removal of lung)
Chemotherapy
Immunotherapy
Radiation
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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 and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
