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.
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 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
Jessenia, a 35-year-old mother from New Jersey, shares her emotional journey of being diagnosed with and treated for stage 3 rectal cancer, a type of colorectal cancer.
Jessenia’s story begins when she was pregnant with her son. One day, after noticing blood after using the toilet, she went for a checkup and the doctor initially diagnosed her with hemorrhoids. However, persistent pain and symptoms led her to seek further medical help, culminating in a visit to the ER. Although an unempathetic doctor brushed her off, she was eventually diagnosed with rectal cancer.
Jessenia describes her shock at the diagnosis and the fear that followed, especially as she had recently lost a loved one to cancer. Despite these fears, she leaned on the support of her husband, who never left her side through the grueling treatment process, which included 6 weeks of radiation and oral chemotherapy. The treatment left her physically weakened, causing her to drop a considerable amount of weight and experience severe side effects like nausea.
Faced with the possibility of living with a colostomy bag for life, Jessenia initially resisted surgery, opting instead for aggressive chemotherapy and radiation. Unfortunately, the tumor only shrank slightly, and surgery became necessary. She ultimately had a temporary colostomy bag and struggled emotionally with this new reality. Despite her discomfort and initial reluctance to manage the bag, her husband stepped up, learning how to care for it and providing her with unwavering support.
Throughout her journey, Jessenia dealt with physical and emotional pain, from dealing with the side effects of her treatments to undergoing a full hysterectomy to reduce the risk of the cancer spreading. The loss of her reproductive organs was difficult to accept, especially as she only had one child. However, she and her husband made peace with the situation, focusing on their love for their son.
Jessenia learned to adapt, even eventually embrace life with her temporary colostomy bag, and resumed her daily activities. She reflects on her experience, offering advice to others facing health challenges: accept your situation, stay positive, and avoid stress. Her strength and determination helped her through the darkest times, and she emphasizes the importance of advocating for oneself in the healthcare system.
In the end, Jessenia shares her realization that one should live one’s life fully, regardless of one’s circumstances. She traveled and made memories throughout her cancer journey, determined to spread awareness and inspire others to get checked for symptoms. Her message is clear: don’t let fear stop you from living, and always seek help when something feels wrong.
Name:
Jessenia L.
Age at Diagnosis:
35
Diagnosis:
Rectal cancer
Staging:
Stage 3
Initial Symptoms:
Constipation
Bloatedness
Bleeding after using the toilet
Treatment:
Chemotherapy (including oral chemotherapy)
Surgery (full hysterectomy)
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
Sara, a 29-year-old content creator, model, and marketer from Montreal, Canada, shares her journey with Crohn’s disease. Diagnosed with ulcerative colitis at the age of 3, Sara’s early symptoms included blood in her stool, frequent bowel movements, and pain. Her condition was managed with medication throughout her childhood, but in 2006, her condition worsened, resulting in a diagnosis of Crohn’s disease, which affected her entire digestive system.
Sara’s treatment involved numerous medications, which led to long-term complications like compression fractures in her spine. Despite this, her condition worsened to the point where, in 2008, she underwent emergency surgery and woke up with a colostomy bag, marking a major shift in her life. The surgery was life-saving, as her intestines were severely inflamed and she was malnourished. The adjustment to ostomy life was challenging, especially due to societal stigma. Sara hid her ostomy for 15 years, struggling with her self-image and the fear of judgment.
Over time, Sara underwent 4 more surgeries, resulting in a permanent ileostomy. In her late teens and early 20s, she struggled with accepting her condition. She refrained from wearing bikinis or discussing her ostomy openly, and she often Photoshopped her images to hide the bag. Her turning point came when she began opening up to close friends and received their acceptance and support, which motivated her to slowly embrace her new reality.
In 2019, Sara took a bold step by wearing only bikinis during a family vacation to Cuba, challenging herself to overcome her insecurities. This experience marked a milestone in her acceptance of her body and her ostomy. Through time and self-growth, Sara became more comfortable with her condition, even sharing it with her community on social media to raise awareness and encourage others.
Sara highlights the importance of building a supportive community for those with IBD or ostomies. She stresses that exposure and setting small challenges can help overcome fears and stigma. Connecting with others who share similar experiences, she believes, can offer comfort and help in adjusting to life with an ostomy. Sara’s journey also emphasizes self-acceptance, growth, and the importance of not comparing oneself to others but instead focusing on personal progress. After years of struggle, she now lives openly with her ostomy and works to inspire others with her story.
Name:
Sara L.
Age at Diagnosis:
3
Diagnosis:
Crohn’s disease (IBD)
Initial Symptoms:
Bloody stool
Loss of appetite
Frequent bowel movements
Severe pain
Treatment:
Corticosteroid therapy (Prednisone)
Tumor necrosis factor-alfa inhibitors
Chemotherapy
Immunosuppressive
Anti-inflammatory agent
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
Madison, a 28-year-old physician assistant from Kalamazoo, MI, was diagnosed with stage 4 metastatic melanoma, a kind of skin cancer. She discovered a lump on her left upper arm in the spring of 2023, but didn’t have it examined until a dermatology appointment later that summer. Because she and her doctor initially believed it to be a benign tumor, she agreed to wait until after her wedding and honeymoon for an excision. However, in October 2023, her doctors diagnosed metastatic melanoma.
When she was 18, doctors had previously biopsied a suspicious mole on Madison’s left forearm, and incorrectly diagnosed it as non-cancerous. Her modern-day medical team reviewed her past medical records, and discovered that the mole was actually cancerous and should have been fully excised. This delayed diagnosis allowed the melanoma to potentially metastasize, a known risk of melanoma reoccurring years after the initial diagnosis.
Following her melanoma diagnosis, Madison underwent a PET scan that showed no signs of disease elsewhere, which was reassuring. She opted for surgery at the primary and metastatic site and continued with regular scans. In March 2024, however, Madison found another lump on her right back. Subsequent scans revealed a brain tumor in the right temporal lobe and additional subcutaneous tumors in her back and hip, leading to her stage 4 diagnosis.
Madison began immunotherapy in April 2024. She tolerated her first session well, but after the second, she experienced severe side effects, including high fevers and a rapid heart rate. She went to the hospital, where she was diagnosed with autoimmune hepatitis, a potential side effect of immunotherapy. While hospitalized, her liver enzymes spiked, leading to suspicion of cytokine release syndrome—a rare but serious complication. Eventually, after an infusion, her liver enzymes stabilized, and she continued to taper off steroids.
Despite the challenges, Madison’s latest scans in July showed no evidence of disease in her body. Her brain tumor had shrunk by half, though she still faces the decision to proceed with radiation therapy. She remains realistic but hopeful, acknowledging the slim chances of further shrinkage without radiation. Madison’s outlook has been positive, driven by her innate optimism and belief in holistic approaches to health, though she recognizes the importance of conventional treatments when necessary.
Throughout her journey, Madison emphasizes the importance of second opinions in cancer treatment, as they can provide different perspectives on treatment options. She encourages others to trust their instincts, be advocates for their health, and take care of their bodies. Her message is clear: listen to your body, seek multiple opinions, and prioritize your well-being above all else.
Name:
Madison C.
Age at Diagnosis:
27
Diagnosis:
Melanoma
Staging:
Stage 4
Initial Symptoms:
Abnormal mole on arm when she was 18 (misdiagnosed)
Hard lump on upper left arm
Treatment:
Surgery (excision at primary and metastatic site)
Dual-agent immunotherapy
Radiation (pending)
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.
Symptoms: Severe pain on the side pain that worsened over time, pelvic pain and a feeling of pressure resembling labor, swollen lymph node on the cheek Treatments: Multiple surgeries to remove tumors, targeted therapy (Opdualag/nivolumab and relatlimab-rmbw) ...
Lauren’s Stage 4 Breast and Stage 4 Colon Cancer Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Lauren, from Houston, Texas, is living with stage 4 breast cancer and stage 4 colon cancer. Her journey began in 2014 when, after breastfeeding her second child, she discovered a lump in her breast. As her doctor initially dismissed it as fibroadenoma, Lauren did not undergo further testing. 2 years later, she developed pains in her breast and noticed that her left nipple looked strange, and upon further examination, doctors diagnosed her with stage 3 breast cancer. She underwent chemotherapy, a mastectomy, and radiation, followed by hormone therapy for several years.
In 2021, Lauren began experiencing stomach pains and noticed blood in her stool. Following a colonoscopy, she was diagnosed with stage 3 colon cancer after doctors discovered a cancerous lymph node. She underwent surgery and chemotherapy but struggled with side effects. Lauren also began to explore alternative treatments like high-dose intravenous vitamin C and fasting, inspired by research on treating KRAS mutation cancers, which are known to be particularly aggressive and difficult to treat.
In 2022, after experiencing further stomach pain, a PET scan revealed that the cancer had spread to Lauren’s abdominal lining and spine. Her oncologist gave her a terminal prognosis, estimating that she had around 10 months left to live. Desperate, Lauren intensified her vitamin C treatments, fasting, and other therapies. Remarkably, by December of that year, her PET scan showed no evidence of disease, although her doctor cautioned her to remain vigilant.
Lauren’s journey took another turn when a biopsy revealed that her spinal cancer was not colon cancer but a recurrence of her breast cancer, which had resurfaced and spread while her immune system was weakened. Although she has had to deal with recurring spots of cancer in her spine, Lauren has successfully managed her colon cancer, with her tumor markers remaining low. She credits her alternative treatments, alongside traditional therapies, for keeping her cancer at bay.
Now, Lauren undergoes PET scans every 3 months to monitor her condition. While managing cancer has become part of her daily life, especially with gastrointestinal side effects from her colon surgery, she remains proactive in her treatment and hopeful for the future. Despite the challenges, Lauren emphasizes the importance of staying informed, advocating for oneself, and maintaining hope, especially for those dealing with KRAS mutation cancers.
Name:
Lauren B.
Age at Diagnosis:
31
Diagnosis:
Breast cancer
Colon cancer
Staging:
Stage 4 for both
Initial Symptoms:
Lump in left breast that grew
Strange appearance of nipple
Treatment:
Surgery (radical left mastectomy, lymph node removal; removal of part of colon and appendix)
Chemotherapy (Doxorubicin and Taxol; Oxaliplatin and Xeloda)
Radiation therapy
Hormone therapy
Complementary treatments (fasting, high-dose intravenous Vitamin C)
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.
Lindsay’s Stage 4 Non-Small Cell Lung Cancer (ALK+) Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Lindsay W., a 42-year-old mother of two, shares her harrowing and inspirational journey with metastatic or stage 4 lung cancer. In March 2022, she began experiencing severe pain in her side. Initially, she thought it was a muscle strain, but after 3 agonizing days with constant pain, she decided to visit the emergency room, suspecting gallbladder issues. Although her blood work and initial tests seemed normal, further scans revealed fluid in her lungs and potential pneumonia.
However, Lindsay’s doctors made a more alarming discovery. They conducted a CT scan which led to a shocking diagnosis: cancer. Initially, the doctors suspected ovarian cancer due to an elevated CA125 marker, but further investigation revealed that Lindsay had non-small cell lung cancer with an ALK-positive mutation. The cancer had metastasized to her liver, bones, kidneys, brain, and lungs. Her stage 4 diagnosis was unexpected, particularly because Lindsay had led a healthy, active lifestyle and had never smoked, challenging her perception and the stigma around lung cancer.
Doctors initially gave Lindsay only a few weeks to live. At that point, she was frail, weighing just 112 pounds and struggling with extreme fatigue and inability to eat or sleep. But amidst the bleak prognosis, she started to undergo targeted therapy treatments, which provided a glimmer of hope. The prescribed targeted therapy drug showed remarkable results within just 2 weeks, reducing or stabilizing much of the cancer. Her doctors also set her up to receive different types of radiation treatments.
However, by September 2022, the drug had stopped working, and Lindsay’s condition worsened dramatically, leading to a 10-day stay in the ICU where it was found that her cancer had spread even further. The spread included hundreds of tiny lesions in her brain, known as leptomeningeal disease, a particularly challenging condition to treat.
At this critical juncture, Lindsay transferred to Emory University Hospital, thanks to the intervention of her boss. There, her life was saved through intensive care and treatment, including the introduction of a second targeted therapy. This treatment, too, worked swiftly, nearly eradicating the cancer within 2 weeks.
Despite the life-saving benefits of this new drug, Lindsay faced severe side effects, including extreme fatigue, edema, vision issues, and significant cholesterol increases. These side effects required her to take additional medications, including stimulants and statins. Yet, Lindsay remains grateful for the treatment, as it allowed her to continue living, albeit with ongoing challenges.
Lindsay’s journey is marked by her resilience and determination to live for her children, fiancé, and stepchildren. She emphasizes the importance of maintaining a positive outlook and manifesting health, crediting journaling and daily affirmations for helping her through the darkest times. Her story has inspired others, leading her to share her experiences on social media platforms like TikTok and Instagram, where she provides support and encouragement to others facing similar battles.
A key message Lindsay shares is the importance of advocating for oneself in the healthcare system. She stresses the need for patients to be proactive, informed, and unafraid to seek second opinions or change doctors if necessary. Her persistence in finding the right oncologist and treatment has been crucial to her survival.
Lindsay’s story is a powerful testament to the strength of the human spirit in the face of life-threatening illness. Her advocacy and outreach continue to offer hope to others battling cancer, showing that there is always a reason to fight and hope for a better tomorrow.
Name:
Lindsay W.
Age at Diagnosis:
41
Diagnosis:
Stage 4B Lung Cancer Adenocarcinoma, ALK+
Symptom:
Severe pain in her side
Treatments:
Chemotherapy (targeted therapy)
Radiation: SBRT cervical and thoracic spine and hip SRS radiation to brain tumor
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
Lonnie V., 54, from Indianapolis, IN, was diagnosed with stage 4 prostate cancer in September 2017. Initially, he experienced symptoms like urination issues and general body pain, which were first attributed to a urinary tract infection, then prostatitis. Despite antibiotics, the symptoms persisted. In a critical moment of severe lower body pain, Lonnie visited his doctor, who discovered an irregular prostate during a physical exam and recommended a biopsy. The results, with a PSA level of 685 (normal is below 4), confirmed stage 4 prostate cancer.
The diagnosis brought overwhelming sadness and fear. Lonnie described the period following the diagnosis as disorienting, with a mental state fluctuating between despair and an urgent need to plan for end-of-life arrangements. His oncologist proposed immediate chemotherapy, but Lonnie opted to delay and explore other options. Instead, he began treatment with a testosterone blocker, and made significant lifestyle changes, including altering his diet and abstaining from alcohol, to support his treatment.
Initially, the testosterone blocker effectively lowered Lonnie’s PSA levels, but after 8 months, the cancer became castrate-resistant, meaning the medication was no longer effective. Faced with new treatment options, including clinical trials, Lonnie chose to participate in a clinical trial while continuing his testosterone blocker. Although the trial’s side effects were challenging, the treatment proved successful for almost 3 and a half years, stabilizing his cancer and PSA levels.
As the clinical trial’s effectiveness waned, Lonnie faced rising anxiety. He sought therapy to manage the psychological toll, which helped him cope with the constant fear of the cancer progressing. In January 2023, Lonnie was removed from the trial due to declining efficacy. He then discussed alternative treatments with his oncologist, including chemotherapy, and eventually continued the trial medications outside the trial after they were FDA approved. Despite small increments in PSA levels, the treatment was somewhat effective until October 2023.
Lonnie then decided to take a treatment break in October 2023 after 6 years of continuous treatment, as he felt mentally and physically exhausted. Surprisingly, his PSA levels continued to drop during this break, but a recent PET scan revealed significant new cancer activity, prompting a return to the trial medications.
Throughout his journey, Lonnie has remained motivated by a love for life and a drive to advocate for cancer awareness. He uses his experience and social media presence to support and educate others, particularly on proactive cancer screening and patient advocacy. Despite the hardships, his focus remains on helping others through their own battles with cancer.
In closing, Lonnie advises newly diagnosed cancer patients to take their time and not rush into decisions. His experience highlights the importance of patient education, mental health support, and the resilience required to navigate the complexities of a cancer diagnosis and treatment.
Name:
Lonnie V.
Age at Diagnosis:
47
Diagnosis:
Prostate cancer
Staging:
Stage 4
Symptoms:
Urination issues
General body pain
Severe lower body pain
Treatments:
Hormone therapy
Targeted therapy (through clinical trial)
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.
