Author: Chris Sanchez

Ben’s Grade 3 Brain Cancer (Oligodendroglioma)

Post author By Chris Sanchez
Post date April 17, 2025
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Ben Finds Strength and Self-Advocacy Amidst Grade 3 Brain Cancer (Oligodendroglioma)

When Ben moved to Manchester, he carried with him more than just his belongings — he brought a grade 3 brain cancer story of resilience, self-discovery, and unwavering advocacy, too. Diagnosed at just 24 with brain cancer (oligodendroglioma), Ben’s journey through unexpected seizures, misdiagnoses, and transformative treatments reshaped his identity and view on life.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Ben’s first seizure happened on his 18th birthday. The seizure was initially dismissed as an isolated incident linked to low phosphate levels. It wasn’t until more distressing episodes years later, during some of which he lost the ability to speak, and frustrating misdiagnoses of anxiety, that he discovered the real cause: a brain tumor, specifically an oligodendroglioma. This revelation came after persistent advocacy for his health, driven by his gut feeling that something was seriously wrong.

Ben’s grade 3 brain cancer experience highlights the importance of listening to your body and pushing for answers. He faced medical professionals who brushed off his symptoms, only to later uncover the truth through sheer determination. His diagnosis led to a whirlwind of treatments: brain surgery, radiotherapy, and chemotherapy. The physical challenges were immense, but Ben’s mental health battles were equally profound. He grappled with identity shifts, social anxiety, and the overwhelming task of finding a “new normal.”

What’s remarkable about Ben isn’t just his grade 3 brain cancer experience but also how he’s leveraging what he went through to advocate for others in the cancer community. He emphasizes the value of a strong support system — friends, family, therapists — and the need for mental health care alongside physical treatment. Ben’s candid reflections on his fears, frustrations, and triumphs offer a raw, authentic look at life with a brain tumor.

Now, Ben’s focused on self-acceptance and living authentically. His scar, once hidden under a cap, has become a symbol of his story, resilience, and growth. He’s learning to embrace life beyond grade 3 brain cancer, advocating for mental health awareness, and encouraging others to be their own strongest advocates.

Watch the video and learn more from Ben about:

What he wishes every young person knew about mental health and advocating for their health.
How his story progressed from misdiagnosed anxiety to a life-changing brain tumor diagnosis.
How he turned fear into strength and became his own biggest supporter after all his treatments.
The story of resilience and hope the scar he once hid now proudly tells.

Name:
- Ben M.
Age at Diagnosis:
- 24
Diagnosis:
- Brain Cancer (Oligodendroglioma)
Grade:
- Grade 3
Symptoms:
- Seizures
- Intermittent loss of ability to speak
Treatments:
- Surgery: awake craniotomy
- Radiotherapy
- Chemotherapy

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

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

Thank you for sharing your story, Ben!

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Kathleen’s Lobular Breast Cancer & Flat Closure Story

Post author By Chris Sanchez
Post date April 17, 2025
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Kathleen Reclaims Body Confidence After Lobular Breast Cancer

Kathleen opens up about her unexpected encounter with lobular breast cancer (invasive lobular carcinoma or ILC). Her story isn’t just about diagnoses and surgeries — it’s about resilience, body acceptance, and community.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Kathleen’s breast cancer story began subtly over a decade ago with a benign cyst in her right breast, which led doctors to monitor a faint shadow in her left breast. Despite regular check-ups, it wasn’t until she noticed bloody nipple discharge, a symptom she now knows can indicate breast cancer, that things escalated. Even with MRIs — one of which helped reveal that she had calcifications, a result of ductal carcinoma in situ (DCIS) — ultrasounds, and biopsies, her cancer remained elusive until a mastectomy finally revealed the presence of lobular breast cancer or ILC, a sneaky type of cancer that spreads like a spider web, making it notoriously hard to detect in imaging.

Kathleen reacted swiftly and decisively to her diagnosis. Discovering invasive cancer in one breast prompted her to opt for a second mastectomy for peace of mind. Interestingly, she discovered that ILC accounts for about 15% of breast cancers, yet it flies under the radar compared to its more common counterpart, invasive ductal carcinoma (IDC ).

Choosing not to undergo reconstruction, Kathleen faced challenges advocating for her preference to remain flat. Unfortunately, her first plastic surgeon didn’t fully respect her wishes, leaving her with excess skin after surgery. This experience, known as “flat denial,” is common among women seeking a flat closure after mastectomy. However, Kathleen found her voice, connected with supportive online communities, and eventually met a surgeon who honored her decision.

Body-image recovery was transformative. Rather than dwelling on loss, Kathleen embraced her new body, drawing parallels to her carefree childhood self. She even had a beautiful wild rose tattoo done to celebrate her scars and overall experience. Her advocacy work with groups like the Lobular Breast Cancer Alliance and Stand Tall AFC has helped empower countless women to embrace their post-mastectomy bodies confidently, just as she has.

Kathleen’s health journey didn’t stop with surgery. As a nutritionist, she initially believed diet was the key to cancer prevention but later shifted her focus to exercise oncology. She now leads Walk Away From Breast Cancer, a community initiative that promotes physical activity among survivors.

Kathleen’s story is a beacon of hope, illustrating that life after cancer isn’t just about survival — it’s about thriving, self-acceptance, and finding strength in community. Watch her video to learn more from her about:

Why she chose to go flat — and how this pivotal decision reshaped her life.
How she found freedom and confidence after her double mastectomy.
The invisible side of breast cancer: her journey with hard-to-detect ILC.
How she turned body-image struggles into empowerment and advocacy.

Name:
- Kathleen M.
Age at Diagnosis:
- 49
Diagnosis:
- Lobular Breast Cancer (Invasive Lobular Carcinoma (ILC))
Symptoms:
- Bloody nipple discharge
- Appearance of “shadow” during breast ultrasound
Treatments:
- Surgery: mastectomy
- Hormone therapy

Kathleen M. lobular breast cancer invasive lobular carcinoma ILC

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

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

Thank you for sharing your story, Kathleen!

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Camilla’s Stage 4 Stomach Cancer: Choosing Her Own Path

Post author By Chris Sanchez
Post date April 17, 2025
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Camilla’s Story of Hope Beyond Terminal Stage 4 Stomach Cancer

Camilla, a 40-year-old mother of four, was diagnosed with terminal stage 4 stomach cancer in February 2025. While the diagnosis was shocking, to say the least, she discovered an unexpected clarity and appreciation for life. She admits it sounds odd, but her diagnosis flipped her perspective entirely — refocusing on her health, family, and self-love.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Before her diagnosis, Camilla sometimes had trouble swallowing and also discovered that a gland in her neck was swollen, something she initially dismissed as minor. It wasn’t until her symptoms worsened that she sought medical help, leading to an endoscopy that revealed a cancerous lesion. The CT scan results brought more devastating news: the stomach cancer had spread to her liver and lymph nodes. Despite being told that surgery wasn’t an option and only palliative chemotherapy was available, she chose a different path.

Camilla refused chemotherapy for her stage 4 stomach cancer and leaned into integrative health practices. She transformed her diet — cutting out sugar, dairy, and processed foods, and focusing instead on organic vegetables, fruits, wild fish, and whole grains. She incorporated fasting, yoga, meditation, and self-healing activities to support her mental and physical well-being.

Camila’s mental health has been a powerful part of her experience. She acknowledges that her emotional state directly affects her physical health. On down days, she feels the presence of her cancer more intensely, reinforcing the importance of maintaining a positive mindset. She embraces her feelings, allowing herself to cry, rest, and seek help without shame.

Planning her wedding for 2028, Camila embodies hope and determination. She refuses to accept her terminal stage 4 stomach cancer prognosis as her fate, believing that hope is vital for life. She is emphatic that one must never give up. Even when leaving the hospital with a terminal diagnosis, finding hope can transform despair into empowerment.

Watch Camilla’s video and learn from her about:

Finding hope after a terminal cancer diagnosis.
Why she refused chemotherapy and what she decided to do instead.
How mental health can impact physical well-being during illness.
The surprising ways her cancer diagnosis changed her life for the better.
Her secret to living with a purpose beyond a terminal prognosis.

Note for Readers: Every person’s experience with cancer is unique. Camilla’s treatment decisions are deeply personal and based on her values and circumstances after having been told that surgery is not an option and being offered palliative chemotherapy. The Patient Story encourages anyone facing a diagnosis to explore all available options and consult with their healthcare team to determine what’s best for them.

Name:
- Camilla C.
Age at Diagnosis:
- 40
Diagnosis:
- Stomach Cancer
Staging:
- Stage 4
Symptoms:
- Issues swallowing
- Swollen gland in the neck
Treatments:
- Palliative chemotherapy was offered but declined
- Nutritional changes to support her comfort and energy
- Meditation and mindfulness practices
- Self-directed healing methods

What is palliative care? Palliative care focuses on helping people feel as well as possible when living with serious illness. Treatment is not about curing the disease but focuses on easing pain, managing symptoms, and supporting emotional and spiritual well-being. People can receive palliative care at any stage of illness, alongside other treatments, or on its own.

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

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

Thank you for sharing your story, Camilla!

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Stage 3 Kidney Cancer (ccRCC): Jeff’s Diagnosis & Recovery

Post author By Chris Sanchez
Post date April 14, 2025
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May 5, 2025

Jeff is Thriving After Stage 3, Kidney Cancer

From Pain to Purpose with Clear Cell Renal Cell Carcinoma (ccRCC)

Jeff faced stage 3, grade 3 kidney cancer head-on. His experience began in late 2022 when he experienced a nagging pain in his left flank. Initially dismissing it as a common ailment like diverticulitis or a urinary tract infection, Jeff didn’t voice his discomfort until the pain returned—this time, accompanied by blood in his urine. A routine CT scan to investigate a suspected kidney stone revealed not just the stone but also a five-centimeter mass on his right kidney.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Jeff took this harrowing news surprisingly well. Perhaps it was his background in the medical field or maybe sheer resilience. Either way, he approached the situation methodically. After consultations, tests, and a biopsy, and despite hopes for a less severe staging, post-surgery pathology reports revealed stage 3, grade 3 kidney cancer (clear cell renal cell carcinoma or ccRCC) with renal vein involvement.

In response, Jeff leaned into his support systems—his family, his faith, and online communities. Instead of succumbing to fear, he chose empowerment: learning, sharing, and advocating.

Following a radical nephrectomy to remove his affected kidney, Jeff embraced a proactive approach to his health. Surveillance scans, daily exercise, active participation in support groups, and integrative therapies like dietary changes became his new norm. His Mediterranean-inspired diet, tailored to manage chronic kidney disease and prevent kidney stones, helps him feel his best.

Through it all, Jeff never lost sight of hope. He channeled his experiences into writing a book, One Kidney: Dealing with Kidney Cancer, and even founded a support site, The Kidney Couch. His candid reflections resonate with many survivors, offering both practical insights and emotional solidarity.

Jeff’s story isn’t about being “cured” of stage 3, grade 3 kidney cancer—it’s about thriving, adapting, and living life fully, despite the shadows that cancer can cast. Watch Jeff’s video to delve into:

How a routine kidney stone check revealed something far more serious.
The way that he turned a cancer diagnosis into an empowering experience.
The surprising moment he realized the full impact of his diagnosis.
How he created a support network for others facing similar challenges.
What helped him cope? Hint: It’s more than just medical treatments.

Name:
- Jeff K.
Diagnosis:
- Kidney Cancer: Clear Cell Renal Cell Carcinoma (ccRCC)
Staging:
- Stage 3
Grade:
- Grade 3
Age at Diagnosis:
- 63
Symptoms:
- Fatigue
- Left flank pain
- Blood in urine
Treatments:
- Surgery: radical nephrectomy

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

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

Thank you for sharing your story, Jeff!

Inspired by Jeff's story?

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Jackie’s Relapsed Ovarian Cancer (Dysgerminoma) Story

Post author By Chris Sanchez
Post date April 14, 2025
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April 14, 2025

Strength and Positivity: Jackie’s Relapsed Ovarian Cancer (Dysgerminoma) Story

Jackie shares her experience with relapsed dysgerminoma ovarian cancer, a rare ovarian tumor that typically affects women in their 20s or 30s. Diagnosed in 2021 at age 27, her encounter with this rare cancer was both a challenging and an enlightening experience. Reflecting on her journey, Jackie opens up about the initial symptoms, which included intense abdominal pain that she mistook for period cramps. However, when the pain escalated and she began vomiting, she realized it was something far more serious.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Jackie went to the emergency room, where the medical team initially suspected appendicitis, but a CT scan revealed something unusual around her ovary. Surgery confirmed the presence of a large tumor on her right side and a smaller one on her left. These are known as ovarian germ cell tumors. Most ovarian germ cell tumors are benign, or noncancerous. The medical team removed the right ovary, leaving the left one in, as Jackie and her husband hoped for more children.

When pathology results confirmed stage 1A ovarian cancer known as a dysgerminoma, Jackie was devastated. The cancer diagnosis was a harsh blow, especially knowing she had to remove her left ovary, affecting her dream of having more children. Her family’s history of cancer included her infant son’s diagnosis of neuroblastoma, a cancer that forms in immature nerve cells. Despite her own struggles, Jackie found solace in knowing it was her and not her son again, having seen how hard it was for him to go through treatment.

After her initial surgery, Jackie faced a relapse. Routine CT scans indicated enlarged lymph nodes, leading to a biopsy that confirmed relapsed ovarian cancer. This time, her cancer was stage 2 and chemotherapy was necessary. Jackie embarked on a grueling regimen, though she was grateful for minimal nausea and supportive family by her side. Hair loss was another hurdle, but she embraced the change, even finding comfort in shaving her head.

To further complicate her health, she was dealing with a herniated disc, relying on a cane to get around. Therapy, particularly dialectical behavioral therapy (DBT), became a lifeline for her, helping her navigate the psychological aspects of her cancer experience. Techniques like meditation and perspective-shifting were instrumental in maintaining her mental health.

Jackie’s resilience shines through her relapsed ovarian cancer story. She completed chemotherapy and celebrated ringing the “no more chemo” bell on September 6, 2021. Regular scans now form part of her life. She emphasizes the invaluable support of loved ones and the strength found in staying positive.

Watch Jackie’s story to learn from her about:

The strength of a mother’s love.
The importance of seeking therapy as needed.
Positivity as a lifeline during challenging periods.
How light, love, and generosity can help overcome even the darkest times.

Name:
- Jackie A.
Age at Diagnosis:
- 27
Diagnosis:
- Ovarian Cancer (Dysgerminoma)
Staging:
- Stage 1B; relapsed as Stage 2
Symptoms:
- Extreme pain in right side
- Vomiting
Treatments:
- Surgery: Oophorectomy, lymphadenectomy
- Chemotherapy

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

Thank you for sharing your story, Jackie!

Inspired by Jackie's story?

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How Tod Thrives with Stage 3 High-Risk Multiple Myeloma

Post author By Chris Sanchez
Post date April 10, 2025
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Thriving with Stage 3 High-Risk Multiple Myeloma: Tod’s Experience

Tod never imagined that a routine physical would uncover stage 3 high-risk multiple myeloma and upend his life. A self-proclaimed Type-A personality, Tod was used to burning the candle at both ends — wake surfing, tackling DIY projects, and reveling in a fast-paced career. But in 2023, everything changed. He started feeling persistently fatigued and getting sick more often but dismissed it as just part of aging. His long-time doctor insisted on a blood test, which revealed an alarming spike in protein levels, hinting at something far more serious.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Receiving a call from his doctor while driving, Tod heard words that no one ever expects: “It could be cancer.” Shocked and in disbelief, especially considering he’d always been one of his doctor’s healthiest patients, he was quickly referred to an oncologist. Multiple tests and a bone marrow biopsy later, the diagnosis was clear: stage 3 high-risk multiple myeloma.

The initial shock was overwhelming, but Tod’s resilience kicked in. With his doctor at the UCSF Helen Diller Family Comprehensive Cancer Center guiding his treatment, Tod faced his biggest fear — needles — head-on, undergoing frequent blood tests, biopsies, and infusions. Yet, amidst these challenges, an unexpected discovery surfaced: an aneurysm that could have been fatal if left untreated. Thankfully, this was addressed promptly.

Fast forward through grueling stage 3 high-risk multiple myeloma treatments, including stem cell harvesting and a transplant, Tod’s health saw significant improvements. From having 60-80% cancer cells in his bone marrow, the numbers plummeted to just 0.12%. His energy levels soared, his appetite returned, and remarkably, he dodged many common side effects of cancer treatment — he never even lost his hair.

Today, Tod’s back to doing what he loves, namely wake surfing, building projects, and living life with an invigorated spirit. His gratitude is palpable, not just for his medical team but for life itself. Reflecting on his stage 3 high-risk multiple myeloma experience, he emphasizes the power of staying positive, being proactive in one’s healthcare, and the importance of support systems. His passion for helping others shines through on his YouTube channel, where he shares his story to inspire and inform.

Tod’s journey is a testament to resilience, gratitude, and the belief that even in the face of adversity, hope thrives. Watch the video to learn from him about:

The phone call that changed everything — and how he fought back.
Beating the odds: How his health improved beyond expectations.
Life after his diagnosis: his empowering story.
The surprising discovery that saved his life outside of cancer.

Name:
- Tod H.
Age at Diagnosis:
- 62
Diagnosis:
- Multiple Myeloma (High-Risk)
Staging:
- Stage 3
Symptoms:
- Extreme fatigue
- High blood protein levels
Treatments:
- Chemotherapy: induction therapy
- Stem cell transplant

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

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

Thank you for sharing your story, Tod!

Inspired by Tod's story?

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Alli’s Experience with Ulcerative Colitis (IBD)

Post author By Chris Sanchez
Post date April 10, 2025
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April 10, 2025

From Isolation to Empowerment: Alli’s Experience with Ulcerative Colitis (IBD)

Alli was diagnosed with ulcerative colitis in 2019, but her experience started many years before that. Growing up, she was often the kid with a tummy ache, and by the age of three, she’d already had her gallbladder removed due to gallstones, something only adults usually go through. In college, her situation took a turn for the worse: she started experiencing constant stomach pain, extreme weight loss, and, eventually, blood in her stool. Despite years of being dismissed with diagnoses like irritable bowel syndrome and anxiety, Alli knew something deeper was wrong. It wasn’t until the visible symptoms escalated that doctors finally took her seriously and diagnosed her condition.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Living with ulcerative colitis, a kind of inflammatory bowel disease (IBD), meant dealing with overwhelming fatigue, feelings of isolation, and the anxiety of an unpredictable future. Alli describes how hard it was to be gaslit regarding her condition and to try to explain her condition to friends and family who couldn’t fully grasp what she was going through. She regrets not joining support groups earlier, realizing how valuable it is to connect with others who truly understand.

For years, Alli tried different medications, but nothing offered lasting relief. Her health declined rapidly, with her weight dropping to 100 pounds due partly to a loss of appetite and her spending a lot of time in the bathroom. As a stay-at-home mom with two kids, it was heartbreaking not being able to care for her family the way she wanted to. Eventually, faced with limited medication options and a desire for a better quality of life, she chose to have an ileostomy.

Waking up post-surgery, despite the pain from the procedure itself, Alli felt incredibly relieved. Adjusting to life with an ostomy bag wasn’t easy, but she quickly embraced it, realizing that it gave her freedom she hadn’t felt in years. She could eat again, more than she ever could before surgery, and she was no longer bound by the fear of sudden symptoms. The emotional toll of ulcerative colitis had been heavier than the physical symptoms, leading to deep depression and anxiety. With her health stabilized, she found her mental well-being improving, too.

Alli now advocates for ulcerative colitis awareness, ostomy acceptance, and mental health support within the IBD community. She openly shares her story to help others feel less alone, hoping to normalize conversations about living with an ostomy. Her messages? An ostomy doesn’t define you, you are more than that bag — and yes, life gets better.

Watch the video to hear from Alli about:

The emotional side of ulcerative colitis that no one talks about and how she faced it head-on.
What it’s like living with an ostomy — Alli gets real.
The turning point: Why she chose surgery and never looked back.
From college struggles and missing out to newfound freedom and making memories — Alli’s life after her ileostomy.

Name:
- Alli R.
Age at Diagnosis:
- 24
Diagnosis:
- Ulcerative Colitis
Symptoms:
- Blood in stool
- Unexplained weight loss
- Stomach pain
- Constant defecation
Treatment:
- Surgery: ileostomy

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

Thank you for sharing your story, Alli!

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Understanding IBS, IBD, and Colorectal Cancer Symptoms

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Redefining Life After Stage 4B Hodgkin Lymphoma: Dilan’s Story

Post author By Chris Sanchez
Post date April 7, 2025
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April 7, 2025

How Stage 4B Hodgkin Lymphoma has Helped Redefine Dilan’s Life

Dilan was living a happy life with his wife and young daughter when he received news that turned his world upside down. In March 2015 — ironically, on his 25th birthday — he was diagnosed with stage 4B Hodgkin lymphoma. What started as night sweats, intense fatigue, itchy skin, and lumps on his neck and in his armpit soon led to a life-altering visit to the doctor. That’s when he first saw the words “cancer referral form” linked to his name.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Dilan’s diagnosis touched off a whirlwind of tests — blood work, biopsies, and scans — leading to the confirmation of stage 4B Hodgkin lymphoma, the cancer having already spread to his lungs. But the physical symptoms weren’t the hardest part. The psychological weight of it all was what overwhelmed him. Dilan recalls the deafening silence after hearing the word “cancer,” a moment filled with blank thoughts and creeping fears about mortality, identity, and purpose.

Chemotherapy became Dilan’s primary treatment, stretched over six grueling months. The side effects were brutal. Hair loss hit the hardest — he lost everything from his head hair to his eyelashes, eyebrows, and body hair, too. It wasn’t just about appearance; it felt like losing a part of who he was. His confidence plummeted, and it took a toll on his mental health. Once outgoing, he began hiding behind hats and sunglasses, avoiding social interactions. It wasn’t vanity; it was grappling with an identity that felt stripped bare.

Yet amidst his stage 4B Hodgkin lymphoma experience, Dilan discovered resilience. He turned inward, embracing meditation, breathwork, and journaling, practices that he continues today. He rekindled his old love for sketching and found solace in simple creative acts. These mental health tools anchored him during moments of anxiety, especially when he faced fears of recurrence.

Dilan’s treatment was successful; his stage 4B Hodgkin lymphoma is now in remission. But his story isn’t just about surviving cancer — it’s about redefining life beyond diagnosis. He candidly admits that cancer, paradoxically, became a catalyst for transformation. It taught him to value life, cherish small moments, and live authentically. His message is clear: cancer doesn’t have to overshadow your existence. It can be a reminder of life’s fragility and the strength within us all.

Watch the video to learn from Dilan about:

How he found strength in unexpected places after his cancer diagnosis.
What to do when hair loss feels like losing a piece of yourself.
His powerful reflections on going from diagnosis on his birthday to redefining life.
How cancer, strangely enough, changed his life for the better.

Name:
- Dilan P.
Age at Diagnosis:
- 25
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4B
Symptoms:
- Night sweats
- Appearance of lumps on the neck and in the armpit
- Severe itching
- Fatigue
Treatment:
- Chemotherapy

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

Thank you for sharing your story, Dilan!

Inspired by Dilan's story?

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Stage 4 Mediastinal Paraganglioma Can’t Stop Jonathan

Post author By Chris Sanchez
Post date April 7, 2025
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April 7, 2025

Stage 4 Mediastinal Paraganglioma Can’t Stop Jonathan from Living His Life

Jonathan has stage 4 mediastinal paraganglioma, a rare neuroendocrine cancer. His experience is a testament to resilience, purpose, and the power of living fully, even with metastatic cancer. A dedicated lung transplant nurse practitioner, devoted husband, and proud father, he never let his diagnosis define him. Instead, he’s turned it into a mission to inspire, educate, and give back.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

In 2021, while training for the Ironman World Championships, Jonathan started experiencing troubling symptoms — shortness of breath, facial swelling, and dizzy spells. As an experienced healthcare professional, he suspected something serious. A trip to the emergency room confirmed his fears: stage 4 mediastinal paraganglioma, a rare cancer that had already spread throughout his body.

But Jonathan didn’t crumble under the weight of his diagnosis. Instead, he approached it with the mindset of a clinician and an athlete — problem-solving, strategizing, and pushing forward. His stage 4 mediastinal paraganglioma treatment plan included radiation to shrink the primary tumor near his heart, targeted therapy to slow the cancer’s spread, and surgeries to stabilize his spine after painful fractures. Despite the challenges, he remained active, racing in marathons and triathlons and even completing the Ironman World Championship in 2023, an achievement that proved that stage 4 cancer is not a death sentence.

Jonathan refuses to let stage 4 mediastinal paraganglioma dictate his life. He returned to his work in lung transplantation, finding deeper connections with his patients who also face mortality. His focus on sports helps him stay mentally strong in the face of his challenges. He also started giving back by fundraising for cancer patients and their families, hosting JP’s Backyard Ultra, an annual ultra-marathon that has raised thousands for those in need.

Through it all, Jonathan has embraced gratitude, acceptance, and purpose. His message is clear: cancer is not the end — it’s a call to live with intention, advocate for oneself, and find ways to give back. For him, being a “force for good” starts with kindness to oneself and extends to uplifting others. His story is not just about surviving but about thriving, making an impact, and redefining what it means to live with cancer.

Watch the video to learn from Jonathan about:

How he crossed the Ironman finish line after his stage 4 diagnosis.
Why he says stage 4 cancer is not a death sentence.
How he turned a rare cancer diagnosis into a mission to help others.
From marathons to fundraising, how he’s proving life doesn’t stop at stage 4.

Name:
- Jonathan P.
Age at Diagnosis:
- 47
Diagnosis:
- Mediastinal Paraganglioma
Staging:
- Stage 4
Symptoms:
- Shortness of breath
- Facial and neck swelling
- Vein distension
- Dizziness and fainting
- Blacking out after standing up
Treatments:
- Radiation: external beam radiation therapy
- Targeted therapy
- Surgery: cement injection for spinal stabilization

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

Thank you for sharing your story, Jonathan!

Inspired by Jonathan's story?

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Support & Advocacy in Michaela’s Stage 4B Ovarian Cancer

Post author By Chris Sanchez
Post date April 7, 2025
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April 7, 2025

Michaela’s High-Grade Stage 4B Ovarian Cancer Highlights the Power of Advocacy and Support

Michaela was diagnosed with high-grade stage 4B ovarian cancer in March 2024 after experiencing a range of symptoms including persistent side and abdominal pain that were initially overlooked by multiple doctors. She leaned on her daughter, Sonia, during this difficult time. Michaela and Sonia sought medical attention after Michaela’s pain intensified, which pushed them to consult a gynecologist and a gastroenterologist. These efforts led to the discovery of Michaela’s cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Sonia, having dealt with cancer herself, was deeply involved in advocating for her mother’s needs. She drew from her own experience and the advocacy skills she learned while caring for her grandmother who had dementia. Michaela and Sonia decided to go to MD Anderson in Houston. They quickly moved forward with a treatment plan that included chemotherapy and surgery. Although the biopsy results were inconclusive, Michaela was treated with neoadjuvant therapy, involving rounds of chemotherapy before and after surgery.

Despite facing an aggressive cancer stage, Michaela’s surgery was successful, removing all visible tumors. However, Michaela then had to deal with the anxiety and panic attacks that emerged post-treatment and with the fear of recurrence, too.

Michaela and Sonia emphasize the importance of self-advocacy in healthcare, stressing the need for women to insist on thorough examinations and tests when they feel something is wrong. They also highlight the limitations of standard procedures, like Pap smears, in diagnosing ovarian cancer. They urge a more comprehensive approach that includes CT scans and CA125 blood tests.

Throughout Michaela’s story, Sonia’s unwavering support and Michaela’s determination shine through. They advocate awareness and proactive health checks for early detection, emphasizing the strength found in family and medical teams. Their experience underscores the silent threat cancer poses and the need for vigilance and resilience in facing it.

Watch the video to learn about:

How Michaela’s courage helped her face an overlooked “silent killer” and its emotional toll.
How advocacy skills proved crucial in seeking treatment.
The importance of thorough medical checks.
Michaela’s and Sonia’s takeaways from this experience.

Name:
- Michaela E.
Age at Diagnosis:
- 67
Diagnosis:
- Ovarian Cancer (High-Grade)
Staging:
- Stage 4B
Symptoms:
- Bloating and mild swelling
- Occasional discomfort and pain in abdominal/pelvic region
- Noisier digestion than usual
- Fatigue
- Pressure/pain after emptying bladder
Treatments:
- Surgery
- Chemotherapy: neoadjuvant and post-surgery

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

Thank you for sharing your story, Michaela!

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