Categories
Clear Cell Renal Cell Carcinoma Kidney Nephrectomy Patient Stories Renal Cell Carcinoma Surgery Treatments

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

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. 

Jeff K.

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 Coach. 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
Jeff K.
Jeff K.
Jeff K.
Jeff K.
Jeff K.

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


Jeff K.
Thank you for sharing your story, Jeff!

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More Kidney Cancer Stories

Nina

Nina N., Chromophome Renal Cell Carcinoma, Stage 2



Symptoms: Blood in urine, blood clots, intense abdominal pain

Treatment: Partial nephrectomy (surgical removal of right kidney)

...
Bill P

Bill P., Papillary Renal Cell Carcinoma, Stage 3, Type 1



Symptoms: Kidney stone, lower back pain, sore/stiff leg, deep vein thrombosis (DVT) blood clot

Treatment: Nephrectomy (surgical removal of kidney and ureter)

...
Laura's kidney cancer story

Laura E., Type 2 Kidney Cancer (Papillary Renal Cell Carcinoma), Stage 4



Symptoms: Profound fatigue, hypertension, high red blood cell count, severe back pain, badly swollen legs

Treatment: Chemotherapy (Cabometyx (cabozantinib) assigned under S1500 PAPMET clinical trial)
...

Alexa D., Kidney Cancer, Stage 1B



Symptoms: Blood in the urine; lower abdominal pain, cramping, back pain on the right side

Treatment: Surgery (radical right nephrectomy)
...
Bill P

Bill P., Papillary Renal Cell Carcinoma, Stage 3, Type 1



Symptoms: Kidney stone, lower back pain, sore/stiff leg, deep vein thrombosis (DVT) blood clot

Treatment: Nephrectomy (surgical removal of kidney and ureter)

...
Burt R. feature photo

Burt R., Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer



Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
...

Sonia B., Kidney Cancer, Stage 1



Symptoms: Fatigue, abdominal discomfort, flank pain, constantly abnormal bloodwork

Treatment: Surgery (partial nephrectomy, ileostomy)
...
Kevin R

Kevin R., Transitional Cell Carcinoma



Symptom: Blood in urine

Treatment: Nephrectomy (surgical removal of kidney and ureter)

...

Categories
Chemotherapy Lymphadenectomy oophorectomy Ovarian Patient Stories Surgery Treatments

Jackie’s Relapsed Ovarian Cancer (Dysgerminoma) Story

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.

Jackie A.

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
Jackie A.
Jackie A.
Jackie A.
Jackie A.
Jackie A.
Jackie A.

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


Jackie A.
Thank you for sharing your story, Jackie!

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More Ovarian Cancer Stories


Cheyann S., Low-Grade Serous Ovarian Cancer, Stage 4B



Symptoms: Stomach pain, constipation, lump on the right side above pubic area

Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
...

Susan R., High-Grade Serous Ovarian Cancer, Stage 4



Symptoms: Pulling sensation when emptying bladder, abdominal pain

Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...

Jodi S., Epithelial Ovarian Cancer, Stage 4



Symptoms: Extreme bloating, extremely tight skin, changes in digestive tract, significant pelvic pain, sharp-shooting pains down inner thighs, extreme fatigue

Treatments: Chemotherapy (pre- & post-surgery), surgery (hysterectomy)
...

Categories
Chemotherapy D-RVD (Daratumumab, lenalidomide, bortezomib, and dexamethasone) Multiple Myeloma Patient Stories Stem cell transplant Treatments

How Tod Thrives with Stage 3 High-Risk Multiple Myeloma

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.

Tod H.

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
Tod H.
Tod H.
Tod H.
Tod H.
Tod H.

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


Tod H. stage 3 high-risk multiple myeloma
Thank you for sharing your story, Tod!

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More Multiple Myeloma Stories

Clay

Clay D., Relapsed/Refractory Multiple Myeloma



Symptoms: Persistent kidney issues, nausea

Treatments: Chemotherapy (CyBorD, KRd, VDPace), radiation, stem cell transplant (autologous & allogeneic), targeted therapy (daratumumab), immunotherapy (elotuzumab)
...
Melissa

Melissa V., Multiple Myeloma, Stage 3



Symptoms: Frequent infections

Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
...

Elise D., Refractory Multiple Myeloma



Symptoms: Lower back pain, fractured sacrum

Treatments: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P multiple myeloma

Marti P., Multiple Myeloma, Stage 3



Symptoms: Dizziness, confusion, fatigue, vomiting, hives



Treatments: Chemotherapy (bortezomib & velcade), daratumumab/Darzalex, lenalidomide, revlimid, & stem cell transplant
...
Ray H. feature

Ray H., Multiple Myeloma, Stage 3



Symptoms: Hemorrhoids, low red blood cell count

Treatments: Immunotherapy, chemotherapy, stem cell transplant
...

Categories
Chronic Diseases ileostomy Inflammatory Bowel Disease Patient Stories Surgery Treatments Ulcerative Colitis

Alli’s Experience with Ulcerative Colitis (IBD)

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.

Alli R.

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
Alli R.
Alli R.
Alli R.
Alli R.
Alli R.
Alli R.

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


Alli R.
Thank you for sharing your story, Alli!

Inspired by Alli's story?

Share your story, too!



Conditions with Similar Symptoms to Ulcerative Colitis

Edie H. feature profile

Edie H., Colorectal Cancer, Stage 3B



Symptom: Chronic constipation

Treatments: Chemotherapy, radiation, surgeries (lower anterior resection & temporary ileostomy)
Shayla L. feature profile

Shayla L., Colorectal Cancer, Stage 4



Symptoms: Stomach sensitivity, food intolerances, exhaustion, blood in stool
Treatments: Chemotherapy, surgery (hepatectomy)
Tracy R. feature profile

Tracy R., Colorectal Cancer, Stage 2B



Symptoms: Bloating and inflammation, heaviness in the rectum, intermittent rectal bleeding, fatigue
Treatments: Chemotherapy, radiation, surgery
Paula C. feature profile

Paula C., Colorectal Cancer, Stage 3



Symptoms: Painful gas, irregular bowel movements, blood in stool, anemia, severe pain, weight loss, fainting spells
Treatment: Surgery (tumor resection)
Nick S. feature profile

Nick S., Colorectal Cancer, Stage 4A



Symptoms: Change in bowel habits, size & consistency, blood in stool, abdominal pain, fatigue
Treatment: Surgery (sigmoid colectomy), chemotherapy (capecitabine, oxaliplatin), immunotherapy (bevacizumab, pembrolizumab)

Steve S., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, changes in bowel habits, feeling gassy and bloated

Treatments: Surgery, chemotherapy, monoclonal antibody, liver transplant

Categories
Chemotherapy Hodgkin Lymphoma Metastatic Patient Stories Treatments

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

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.

Dilan P.

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
Dilan P.
Dilan P.
Dilan P.
Dilan P.

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


Dilan P.
Thank you for sharing your story, Dilan!

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More Metastatic Hodgkin Lymphoma Stories

Amanda P. feature profile

Amanda P., Hodgkin’s, Stage 4



Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor
Treatments: Chemotherapy (A+AVD), Neulasta

...

CC W., Hodgkin’s, Stage 4



Symptoms: Achiness, extreme fatigue, reactive rash on chest & neck, chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
...

Lia S., Nodular Sclerosis, Stage 4A



Symptom: Extreme lower back pain

Treatment: ABVD chemotherapy
...
Dilan P. stage 4B hodgkin lymphoma

Dilan P., Hodgkin’s, Stage 4B



Symptoms: Night sweats, appearance of lumps on the neck and in the armpit, severe itching, fatigue

Treatment: Chemotherapy

...
Rylie G. feature profile

Riley G., Hodgkin’s, Stage 4



Symptoms: • Severe back pain, night sweats, difficulty breathing after alcohol consumption, low energy, intense itching

Treatment: Chemotherapy (ABVD)

...

Categories
Neuroendocrine Tumors Paraganglioma Patient Stories Radiation Therapy Rare Targeted Therapies Treatments

Stage 4 Mediastinal Paraganglioma Can’t Stop Jonathan

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.

Jonathan P.

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
Jonathan P.
Jonathan P.
Jonathan P.
Jonathan P.
Jonathan P.
Jonathan P.

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


Jonathan P.
Thank you for sharing your story, Jonathan!

Inspired by Jonathan's story?

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More Rare Neuroendocrine Cancer Stories

Amanda S. square headshot

Amanda S., High-Grade Neuroendocrine Carcinoma, Stage 4



Symptoms: Breathing problems (especially during activities like walking), persistent cough, coughing up blood, urinary tract infections, pain in belly

Treatments: Chemotherapy, surgery
...
Bella J. feature profile

Bella J., Malignant Paraganglioma



Symptoms: Severe vomiting, chronic cough, dizziness, swelling in the neck, low heart rate, extreme weight loss, hair loss, dental issues, vocal strain, persistent pain and exhaustion

Treatments: Surgeries, radiotherapy, physical therapy
...
Burt R. feature photo

Burt R., Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer



Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
...
Jennifer P. feature

Jennifer P., Neuroendocrine Tumor, Stage 4, High-Grade



Symptom: Pain in upper back
Treatments: Chemotherapy, immunotherapy
...
Jonathan P.

Jonathan P., Mediastinal Paraganglioma, 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)

...

Categories
Abraxane (paclitaxel) Carboplatin Chemotherapy Ovarian Patient Stories Surgery Taxol (paclitaxel) Treatments

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

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.

Michaela E.

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
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.
Michaela E.

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


Michaela E.
Thank you for sharing your story, Michaela!

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More Ovarian Cancer Stories


Cheyann S., Low-Grade Serous Ovarian Cancer, Stage 4B



Symptoms: Stomach pain, constipation, lump on the right side above pubic area

Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
...

Susan R., High-Grade Serous Ovarian Cancer, Stage 4



Symptoms: Pulling sensation when emptying bladder, abdominal pain

Treatments: Chemotherapy (carboplatin & paclitaxel), surgery
...

Jodi S., Epithelial Ovarian Cancer, Stage 4



Symptoms: Extreme bloating, extremely tight skin, changes in digestive tract, significant pelvic pain, sharp-shooting pains down inner thighs, extreme fatigue

Treatments: Chemotherapy (pre- & post-surgery), surgery (hysterectomy)
...

Categories
Chemotherapy FOLFOX (folinic acid, fluorouracil, oxaliplatin) Immunotherapy Keytruda (pembrolizumab) Pancreaticoduodenectomy (Whipple procedure) Patient Stories Stomach Cancer Surgery Treatments

Uroosa Overcomes Stage 4 Stomach Cancer

The Power of Positivity: Uroosa’s Stage 4 Stomach Cancer Story

Uroosa was diagnosed with stage 4 stomach cancer in September 2020. Her story started with persistent stomach issues, nausea, unexplained weight loss, and intense fatigue. She saw several healthcare providers but they dismissed her symptoms as being due to stress. Her symptoms escalated and she experienced severe internal bleeding due to an untreated stomach ulcer. She also started to suffer nausea, heartburn, and persistent abdominal pain. 

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Uroosa underwent multiple endoscopies, colonoscopies, and other tests, but doctors continued to tell her that her condition was stress-related. It wasn’t until her third endoscopy in 2020 that cancer signs emerged and her stage 4 stomach cancer was correctly diagnosed.

Uroosa K.

Uroosa was initially overwhelmed by her diagnosis but quickly focused on the next steps. She sought opinions from various oncologists, finally deciding on the Whipple procedure with a doctor who made her feel secure. The surgery revealed a more extensive tumor than initially thought. Doctors had to remove significant portions of her stomach, pancreas, duodenum, gallbladder, and bile duct.

Next, Uroosa underwent chemotherapy. This experience was harrowing, as, after each session, she had side effects severe enough to require hospitalization. A pivotal moment came at MD Anderson where genetic testing revealed biomarkers, making her a prime candidate for immunotherapy instead of chemotherapy.

The shift to immunotherapy was life-changing. Uroosa responded well to the immunotherapy medicines and had minimal side effects. Within months, her scans showed no evidence of disease. However, she continued treatment to prevent recurrence, aware of the aggressive nature of her stage 4 stomach cancer.

Throughout her treatment, Uroosa grappled with survivor’s guilt, especially as friends she met through her cancer community faced different outcomes. Her story highlights her resilience and underscores the medical community’s complexities.

Now cancer-free, Uroosa navigates survivorship. Although she doesn’t have cancer anymore, her experience has changed her life forever. Her story showcases the power of hope and self-belief.

Watch Uroosa’s story and learn from her about:

  • How she faced her daunting diagnosis and her courageous path forward.
  • Maintaining her spirit and resilience through her treatments.
  • Coping with the anxiety of recurrence and survivor’s guilt.
  • Her takeaways for those facing overwhelming challenges.

  • Name: 
    • Uroosa K.
  • Age at Diagnosis:
    • 27
  • Diagnosis:
    • Stomach Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Extreme fatigue
    • Sharp and persistent abdominal pains
    • Nausea
    • Weight loss
    • Ulcer-like symptoms
  • Treatments:
    • Surgery: Whipple procedure
    • Chemotherapy
    • Immunotherapy
Uroosa K.
Uroosa K.
Uroosa K.
Uroosa K.
Uroosa K.

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


Uroosa K.
Thank you for sharing your story, Uroosa!

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More Stomach Cancer Stories

Lauren C. feature profile

Lauren C., Stomach Cancer, Stage 1, CDH1+



Symptoms: Irregular bowel movement (stomach bile), extreme pain eating certain foods or drinking alcohol

Treatment: Total gastrectomy (surgery to remove whole stomach)
...

Viola K., Stomach Cancer, Stage 4



Symptoms: Persistent fatigue, weight loss, occasional pain, persistent weakness

Treatments: Chemotherapy (FLOT), HIPEC (Surgery + Hot Chemotherapy), 2nd intestinal surgery
...
Alyssa B. feature profile

Alyssa B., Stomach Cancer, Stage 4



Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatments: Chemotherapy, surgery (gastrectomy & oophorectomy)
...
Jeff S. feature profile

Jeff S., Stomach Cancer, Stage 4



Symptoms: None; found during the evaluation process for kidney donation
Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation
...

Brittany D., Stomach Cancer, Stage T1b



Symptoms: Choking suddenly while eating and attempting to speak; neck and right shoulder pain; neck tightness; trouble swallowing certain food items

Treatments: Surgery (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)
...

Categories
Chronic Diseases Inflammatory Bowel Disease Patient Stories Ulcerative Colitis

Sarah’s Experience with Ulcerative Colitis (IBD)

Embracing Life and Breaking Stigma: Sarah’s Experience with Ulcerative Colitis (IBD)

Sarah was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), in 2018. She started experiencing persistent stomach aches, bloating, and severe constipation in her youth, which escalated to blood in her stool during her college years, indicating that there was something seriously wrong. She saw a gastroenterologist who diagnosed her with ulcerative proctitis, which later progressed to ulcerative colitis.

Sarah experienced profound pain associated with pelvic floor dysfunction, which significantly impacted her daily life, affecting everything from exercise to intimate relationships.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Despite trying numerous treatments, including medications and working with a functional medicine doctor, Sarah just got sicker. She started experiencing chronic pain, fatigue, joint pain, and skin rashes. Her pelvic floor issues worsened her constipation, creating a cycle of discomfort and frustration. Doctors recommended surgery, but she initially resisted. The turning point came in 2022 when a colonoscopy revealed a non-functioning colon. Realizing there was no alternative, Sarah agreed to ostomy surgery, spurred by her husband’s assurance that things couldn’t get worse.

Understanding IBS, IBD, and Colorectal Cancer Symptoms

Many symptoms of IBD—such as abdominal pain, cramping, and changes in bowel habits—can overlap with those of colorectal cancer, which can make it difficult to tell the conditions apart. While IBD is a chronic condition, it’s important to pay attention to any new, worsening, or unusual symptoms.

Sarah A.

The surgery was daunting, but it brought hope and a new perspective. Afterward, Sarah quickly noticed improvements in her quality of life. She could enjoy simple pleasures, like drinking coffee in the morning without discomfort, and was moved to tears by moments like watching a sunrise, which she thought she’d never enjoy again.

Sarah learned to navigate her new normal, seeking advice from an ostomy nurse and connecting with others in similar situations. Her ostomy, which she affectionately refers to as her “badge of courage,” has given her back her life, enabling her to travel, work out, and live without the constant shadow of pain.

Sarah has embraced her ostomy not as a limitation but as a source of strength. She now advocates for others facing similar challenges, promoting a message that life with an ostomy can be fulfilling and normal. Sarah’s journey is a testament to the capacity for adaptation and triumph.

Watch Sarah’s story and learn more about:

  • Embracing a positive outlook in the face of an overwhelming situation.
  • The power of support and her husband’s crucial role.
  • Finding new strength and vitality post-surgery.
  • Overcoming the stigma associated with an ostomy and how to live fully with one.

  • Name: 
    • Sarah A.
  • Age at Diagnosis:
    • 26
  • Diagnosis:
    • Ulcerative Colitis (a type of Inflammatory Bowel Disease or IBD)
  • Symptoms:
    • Bowel irregularity
    • Severe stomach aches
    • Blood in stool
  • Treatments:
    • Surgery: ostomy surgery
    • Steroids
    • Anti-inflammatory medication: mesalamine
    • Biologic therapy
Sarah A.
Sarah A.
Sarah A.
Sarah A.
Sarah A.
Sarah A.

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


Sarah A.
Thank you for sharing your story, Sarah!

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Conditions with Similar Symptoms to Ulcerative Colitis

Edie H. feature profile

Edie H., Colorectal Cancer, Stage 3B



Symptom: Chronic constipation

Treatments: Chemotherapy, radiation, surgeries (lower anterior resection & temporary ileostomy)
Shayla L. feature profile

Shayla L., Colorectal Cancer, Stage 4



Symptoms: Stomach sensitivity, food intolerances, exhaustion, blood in stool
Treatments: Chemotherapy, surgery (hepatectomy)
Tracy R. feature profile

Tracy R., Colorectal Cancer, Stage 2B



Symptoms: Bloating and inflammation, heaviness in the rectum, intermittent rectal bleeding, fatigue
Treatments: Chemotherapy, radiation, surgery
Paula C. feature profile

Paula C., Colorectal Cancer, Stage 3



Symptoms: Painful gas, irregular bowel movements, blood in stool, anemia, severe pain, weight loss, fainting spells
Treatment: Surgery (tumor resection)
Nick S. feature profile

Nick S., Colorectal Cancer, Stage 4A



Symptoms: Change in bowel habits, size & consistency, blood in stool, abdominal pain, fatigue
Treatment: Surgery (sigmoid colectomy), chemotherapy (capecitabine, oxaliplatin), immunotherapy (bevacizumab, pembrolizumab)

Steve S., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, changes in bowel habits, feeling gassy and bloated

Treatments: Surgery, chemotherapy, monoclonal antibody, liver transplant

Categories
Adenoid Cystic Carcinoma Head and Neck Cancer Patient Stories Surgery Treatments

Kandi’s Recovery From Stage 3 Adenoid Cystic Carcinoma

Unwavering Resilience: Kandi’s Stage 3 Adenoid Cystic Carcinoma Story

Kandi is an Alabama native and a vibrant, loving mother and wife who enjoys making people smile. Her world was turned upside-down when she was diagnosed with a rare cancer, stage 3 adenoid cystic carcinoma, in April 2024. Though her family has a history of cancer, Kandi initially shrugged off symptoms like severe fatigue, persistent daily headaches, her tongue sometimes feeling like it was on fire, and anxiety, thinking that they were due to postpartum changes after she gave birth to her third child.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

One day, Kandi found herself struggling to swallow and discovered a large blockage in her mouth. This prompted her to visit an ear, nose, and throat (ENT) specialist (otolaryngologist), which led to her jarring diagnosis of stage 3 adenoid cystic carcinoma. Without hesitation, she underwent surgery on April 22nd, where doctors removed 30 lymph nodes, thankfully finding no cancer in them. Her second surgery took place a few days later, during which doctors removed the tumor itself.

Kandi B.

Kandi’s road to recovery wasn’t smooth. She faced the fear of not being able to talk and the adjustments to life with feeding tubes. Yet, her determination to recover quickly saw her taking oral medications by the time she left the hospital. Through it all, Kandi leaned on her faith, attributing her strength to God’s work in her life and the incredible support from friends and family.

Post-surgery, some of Kandi’s doctors considered radiation. However, her radiologist advised against it due to her young age and recovery, sparing her from radiation’s potential side effects. This aligned with Kandi’s desire to pursue a more natural path, involving a clean diet and natural supplements. She also realized the critical role of nutrition and stress management in her recovery journey.

Despite her fears and the psychological effects of her rare cancer diagnosis of stage 3 adenoid cystic carcinoma, Kandi emerged stronger, driven by a newfound appreciation for life. Her ordeal has shifted her perspective, helping her cherish family time and the simple pleasures of life. She acknowledges the “scanxiety” that cancer survivors face but chooses to focus on the positives.

Kandi encourages others facing similar experiences to keep their faith, stay positive, and lean on their support systems. Her story is one of resilience, emphasizing the importance of mental strength and a healthy lifestyle in overcoming challenges.

Watch Kandi’s story to learn more about:

  • Unwavering positivity amidst chaos and uncertainty.
  • Family and faith as pillars of strength.
  • Fostering a new outlook on life post-diagnosis.
  • How community support fuels and supports recovery.

  • Name:
    • Kandi B.
  • Age at Diagnosis:
    • 32
  • Diagnosis:
    • Adenoid Cystic Carcinoma
  • Staging:
    • Stage 3
  • Symptoms:
    • Fatigue
    • Headaches
    • Depression
    • Occasional feeling of tongue being on fire/inflamed
    • Appearance of tumor on salivary gland on tongue
  • Treatment:
    • Surgery
Kandi B.
Kandi B.
Kandi B.
Kandi B.
Kandi B.
Kandi B.
Kandi B.

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


Kandi B.
Thank you for sharing your story, Kandi!

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Alyssa N. feature profile

Alyssa N., Adenoid Cystic Carcinoma



Symptoms: Persistent jaw pain, lightning-like facial pain during the first bite of meals

Treatments: Surgery (tumor removal), radiation
...
Eva G. feature profile

Eva G., Oral Cancer, Stage 4



Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located
Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation
...
Kandi B.

Kandi B., Adenoid Cystic Carcinoma, Stage 3



Symptoms: Fatigue, headaches, depression, occasional feeling of tongue being on fire or inflamed, appearance of tumor on salivary gland on tongue

Treatment: Surgery
...
Michael W. feature profile

Michael W., Squamous Cell Head and Neck Cancer, Stage 4



Symptom: None; caught at routine neck CT scan

Treatments: Surgery, chemotherapy (cisplatin), radiation
...

Spenser S., Oral Cancer (Squamous Cell Carcinoma of the Tongue), Stage 4



Symptoms: Severe toothache, excessive fatigue, persistent canker sores, appearance of a large cyst in the mouth

Treatments: Surgery (partial removal of tongue, neck dissection with flap), chemotherapy, radiation
...