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Adrenal Cancer Adrenalectomy Chemotherapy Nephrectomy Patient Stories Surgery Treatments

Janelle’s Stage 4 Adrenal Cancer Story of Connection

Janelle’s Stage 4 Adrenal Cancer Story: The Power of Persistence and Connection

Janelle is a spirited 42-year-old whose resilience shines through despite her rare diagnosis of stage 4 adrenal cancer. Her experience underscores the importance of self-advocacy, mental health, and the power of community support.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Janelle’s health concerns began in 2013 with an unusual thirst — she was drinking as much as 300 oz of water daily. Despite numerous doctor visits, misdiagnoses, being gaslit, and even being dismissed as “attention-seeking,” her persistence never wavered. She navigated through multiple endocrinologists until her trusted primary care physician took her symptoms seriously. In 2021, a sudden sharp pain from a kidney stone led to a CT scan, revealing a four-centimeter mass on her adrenal gland — a life-saving discovery hidden behind unexpected agony.

Janelle C. stage 3 adrenal cancer

The diagnosis? Stage 3 adrenal cancer (adrenocortical carcinoma), which later advanced to stage 4 adrenal cancer after it was found to have spread to Janelle’s lungs. The emotional weight of the news, compounded by family health crises and feelings of isolation, was overwhelming. But she found solace in connecting with others across the globe facing the same rare cancer. These connections became her anchor, offering an invaluable sense of belonging in a sea of uncertainty.

With a treatment plan involving an oral chemotherapy medicine derived from a compound as controversial as its history (it’s related to the banned pesticide DDT), Janelle faces harsh side effects: relentless fatigue, nausea, and more. Despite these challenges, her mental fortitude remains strong. She copes with the invisible nature of her illness, combating not just stage 4 adrenal cancer but also the misconceptions of those around her. Her husband’s unwavering support and the thought of her beloved niece fuel her determination.

Janelle’s message is clear: self-advocacy is non-negotiable. Her story is a testament to the importance of trusting your instincts, pushing for answers, and never settling when it comes to your health.

Watch Janelle’s video and find out more about:

  • How a kidney stone turned out to be the unexpected hero of her life.
  • The rare cancer community that spans continents and hearts.
  • How Janelle’s persistence saw her through, even though she kept getting dismissed by doctors.
  • The unseen battles and silent strength that are part and parcel of living with stage 4 adrenal cancer.
  • The everyday heroes behind Janelle’s fight — family, friends, and fierce self-advocacy.

  • Name:
    • Janelle C.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Adrenal Cancer (Adrenocortical Carcinoma)
  • Staging:
    • Stage 4
  • Symptoms:
    • Excessive thirst and water intake
    • Interrupted sleep due to waking to drink and urinate
    • Suspicious weight gain despite working out
  • Treatments:
    • Surgeries: adrenalectomy, nephrectomy
    • Oral chemotherapy
    • Steroids
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer
Janelle C. stage 3 adrenal cancer

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


Janelle C. stage 3 adrenal cancer
Thank you for sharing your story, Janelle!

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More Adrenal Cancer Stories


Ashley S., Adrenal Cancer, Stage 4



Symptoms: Swollen ankles, very low potassium levels

Treatments: Surgery (removal of tumor, open-heart surgery), chemotherapy, immunotherapy, radiation
...
Ashley P. feature profile

Ashley P., Adrenal Cancer, Stage 4



Symptom: Mild back pain on her left side that escalated in severity
Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib
...

Hope L., Adrenal Cancer, Stage 2



Symptoms: High blood pressure, butterfly rash, joint pain and swelling, rapid heart rate

Treatments: Surgery (adrenalectomy), chemotherapy
...
Janelle C. stage 4 adrenal cancer

Janelle C., Adrenal Cancer (Adrenocortical Carcinoma), Stage 4



Symptoms: Excessive thirst and water intake, interrupted sleep due to waking to drink and urinate, suspicious weight gain despite working out

Treatments: Surgeries (adrenalectomy, nephrectomy), chemotherapy

...
Melinda N. feature profile

Melinda N., Adrenal Cancer, Stage 4



Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods

Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib)
...

Categories
Chemotherapy Head and Neck Cancer Immunotherapy Neck dissection Partial glossectomy Patient Stories Radiation Therapy Squamous Cell Carcinoma Surgery Tongue Cancer Treatments

Ryan’s Clinical Trial Experience Facing Stage 4 Tongue Cancer

Stage 4 Tongue Cancer and the Power of Speaking Up: Ryan’s Clinical Trial Journey

Ryan’s story is a powerful testament to resilience, support, and the complexities of living with stage 4 tongue cancer. He’s a husband and father to two boys, and balances family life with the demanding realities of his diagnosis, treatments, and emotional shifts.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Ryan’s cancer story began subtly, with a deceptively small white spot on his tongue, which was shrugged off during numerous dental visits. Life was busy, and it wasn’t until the spot wouldn’t heal that he sought an oral surgeon’s opinion. A biopsy confirmed his fears: stage 4 tongue cancer (squamous cell carcinoma of the head and neck). From there, his life transformed rapidly with surgeries, including a partial glossectomy (the removal of part of his tongue), neck dissection (the removal of cancerous lymph nodes in his neck), and reconstruction of his tongue. These procedures were followed by extensive rounds of radiation, chemotherapy, immunotherapy, and participation in clinical trials.

stage 4 head and neck cancer

Ryan’s clinical trial experience at MD Anderson has been both hopeful and challenging. He debunks the myth about placebos in cancer trials, emphasizing that all participants receive the standard of care, with trials testing potentially more effective therapies. His trial opened new avenues in his treatment plan. This part of his experience highlights the critical role of clinical trials in advancing cancer treatment, offering patients like Ryan additional options beyond conventional methods.

Day-to-day life with stage 4 tongue cancer is layered with physical and emotional hurdles. Ryan travels weekly for his treatments, navigating the logistical and financial strains with the support of his family. The emotional weight is substantial — not just for him, but also for his wife and kids. He describes the emotional aftermath akin to grief, with friends and family often reacting as if he’s already gone, which adds to the complexity of living with an ongoing illness.

Ryan’s narrative sheds light on the unseen burdens carried by family and friends. His wife bears the brunt of emotional stress, managing her fears and the daily realities of their children’s lives. Ryan’s determination to stay engaged in his children’s lives drives him, even as he tackles the harsh side effects of treatment.

Ryan’s advice to others facing similar battles? Own your treatment. Speak up, advocate for yourself, and ensure your voice is heard in your care decisions. This proactive approach has been crucial in Ryan’s experience, helping ensure that he receives attentive and appropriate care.

Watch Ryan’s video to find out about:

  • How a small white spot led to his stage 4 tongue cancer diagnosis.
  • The emotional toll of cancer — not only on patients but also on their families.
  • Ryan’s firsthand experience debunking myths about clinical trials.
  • Weekly flights, family strains, and fighting for normalcy with cancer.
  • Why Ryan believes hope isn’t enough — and about what really matters.

  • Name:
    • Ryan A.
  • Age at Diagnosis:
    • 39
  • Diagnosis:
    • Tongue Cancer (Squamous Cell Carcinoma of the Head and Neck)
  • Staging:
    • Stage 4
  • Symptom:
    • Lesion on the side of the tongue
  • Treatments:
    • Surgeries: partial glossectomy, neck dissection, tongue reconstruction
    • Chemotherapy
    • Immunotherapy
    • Radiation
stage 4 head and neck cancer
stage 4 head and neck cancer
stage 4 head and neck cancer
stage 4 head and neck cancer
stage 4 head and neck cancer

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


stage 4 head and neck cancer
Thank you for sharing your story, Ryan!

Inspired by Ryan's story?

Share your story, too!


More Head and Neck Cancer Stories

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
...
Ryan A. stage 4 tongue cancer

Ryan A., Tongue Cancer (Squamous Cell Carcinoma of the Head and Neck), Stage 4



Symptom: Lesion on the side of the tongue

Treatment: Surgeries (partial glossectomy, neck dissection, tongue reconstruction), chemotherapy, immunotherapy, radiation

...

Categories
Chemotherapy Gastric Adenocarcinoma Immunotherapy Patient Stories Stomach Cancer Treatments

Emily’s Incurable Stage 4 Stomach Cancer

Controlling What She Can: Emily Navigates Incurable Stage 4 Stomach Cancer

Emily, a former Olympic athlete, was diagnosed with stage 4 stomach cancer (gastric adenocarcinoma) in July 2024. Her health concerns began shortly after giving birth to her son in November 2023. Initially, she experienced what seemed like postpartum-related stomach aches, which progressed to early fullness, unexplained weight loss, and vomiting without nausea. Despite several medical consultations and tests — including endoscopies and biopsies that initially came back negative — Emily trusted her instincts when something didn’t sit right.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Determined to find answers, Emily sought a second opinion that finally led to the correct diagnosis of stage 4 stomach cancer. While the news was devastating, her response was both inspiring and empowering. She shifted her focus to what she could control — her mindset, her health, and the time she spends with her family. Despite being told her cancer was incurable, Emily holds onto hope, continually reinforcing positivity through daily affirmations and self-belief.

Emily D. stage 4 stomach cancer

Exercise remains Emily’s anchor. Drawing from her athletic background, she incorporates physical activity into her routine — not to train for competitions, but to maintain her strength during treatments. Running, skiing, lifting weights, and even simple walks help her feel like herself. This connection to her physical well-being supports her mental health, creating a cycle of resilience and positivity.

Emily also channels her energy into meaningful projects for her family. She writes heartfelt letters for her son and compiles a cookbook for her husband, ensuring her presence remains strong in their lives. She embraces integrative approaches to health, combining traditional treatments like chemotherapy and immunotherapy with lifestyle habits that nurture her body and spirit.

While navigating the emotional weight of her stage 4 stomach cancer diagnosis, Emily’s perspective is profoundly moving. She acknowledges the fear but refuses to let it define her. She often reminds herself, “I’m a sample of one,” choosing to see statistics as impersonal numbers that don’t capture individual possibilities. Emily’s story isn’t just about living with stage 4 stomach cancer — it’s about living fully, with intention and love.

Watch Emily’s video and find out about:

  • How her competitive mindset fuels her life with stage 4 stomach cancer.
  • The symptom Emily thought was postpartum-related, but ended up changing her life.
  • How her intuition led to a diagnosis that doctors initially missed.
  • From chemotherapy to cookbooks: Emily’s heartfelt way of leaving a legacy.
  • Why Emily believes statistics don’t define her story and how that belief empowers her.

  • Name:
    • Emily D.
  • Age at Diagnosis:
    • 35
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Staging:
    • Stage 4
  • Symptoms:
    • Persistent postpartum stomachache
    • Early satiety
    • Difficulty swallowing
    • Vomiting
  • Treatments:
    • Chemotherapy
    • Immunotherapy
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer
Emily D. stage 4 stomach cancer

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


Emily D. stage 4 stomach cancer
Thank you for sharing your story, Emily!

Inspired by Emily's story?

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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
Breast Cancer Hormone Therapies Invasive Lobular Carcinoma Mastectomy Patient Stories Surgery Treatments

Kathleen’s Lobular Breast Cancer & Flat Closure Story

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 M. lobular breast cancer invasive lobular carcinoma ILC

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
Kathleen M. lobular breast cancer
Kathleen M. lobular breast cancer
Kathleen M. lobular breast cancer
Kathleen M. lobular breast cancer invasive lobular carcinoma ILC

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


Kathleen M. lobular breast cancer invasive lobular carcinoma ILC
Thank you for sharing your story, Kathleen!

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More Breast Cancer Stories


Erica C., DCIS, Stage 0



Symptoms: Indeterminate calcifications found on a routine mammogram
Treatment: Double mastectomy
Margaret A. feature

Margaret A., IDC & DCIS, Stage 2B



Symptoms: Pain in left breast, left nipple inverting

Treatments: Double mastectomy, chemotherapy (AC-T), radiation

Alison R., Partially Differentiated DCIS, Stage 4 Metastatic



Symptom: Lump in underarm/breast

Treatments: Chemotherapy, surgery, radiation, targeted therapy
Maggie C. feature profile

Maggie C., Triple-Negative Breast Cancer, Stage 4 (Metastatic), PD-L1+



Symptoms: Bruising sensation in the breast, soft lump

Treatments: Chemotherapy, clinical trial (antibody-drug conjugate and immunotherapy)
Nina M. feature profile

Nina M., Metastatic Breast Cancer



Symptoms: Hardening under the armpit, lump & dimpling in the left breast

Treatments: Chemotherapy, surgery (lumpectomy), radiotherapy, hormone-blocking medication, targeted therapy
Sherrie shares her stage 4 metastatic breast cancer story
Sherri O., Metastatic Breast Cancer, HER2+ & Colon Cancer, Stage 3
Symptoms: Shortness of breath, lump under armpit, not feeling herself
Treatments: Chemotherapy, Transfusions
April D.

April D., Triple-Negative Breast Cancer, Stage 4 (Metastatic), BRCA1+



Symptom: Four lumps on the side of the left breast

Treatments: Chemotherapy (carboplatin, paclitaxel doxorubicin, surgery (double mastectomy), radiation (proton therapy), PARP inhibitors
Brittney shares her stage 4 breast cancer story
Brittney B., Metastatic Breast Cancer
Symptoms: Lump in the right breast, inverted nipple

Treatments: Surgery, chemotherapy, immunotherapy, radiation

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 Colon Colorectal Patient Stories Surgery Treatments

Chloe’s Stage 3 Colon Cancer Story: It Started with Bloating

Living Boldly After Stage 3 Colon Cancer: Chloe’s Empowering Message

In early 2024, Chloe was unexpectedly diagnosed with stage 3 colon cancer (adenocarcinoma of the colon) after suffering from symptoms of bloating and other stomach issues. Later on she began to experience weight loss, fatigue, lack of appetite, and abdominal swelling. However, these symptoms were dismissed as effects of her pre-existing anemia. She regularly consulted her general practitioner throughout December to have tests conducted. They only revealed minor infections but didn’t uncover the underlying issue. Moreover, her health continued to worsen.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Chloe paid a visit to the local infirmary, where doctors subsequently discovered and were concerned about high ketone levels in her urine. However, she was still treated for gastroenteritis. Her symptoms persisted, leading her mother to realize that her condition was far more severe than everyone thought and insist on a hospital visit. Significantly, a CT scan revealed a mass in her large bowel and multiple perforations. Doctors accordingly performed emergency surgery, and Chloe woke up afterward with a stoma bag, an unexpected and significant adjustment for her.

The diagnosis was shocking: Chloe’s condition was stage 3 colon cancer. Furthermore, these findings were exacerbated by a rare genetic disorder, familial adenomatous polyposis (FAP), which had gone undetected until that point. This gene caused polyps to clump together and form a large tumor. Following her surgery, Chloe subsequently underwent four rounds of chemotherapy over three months, with sessions involving both IV and oral forms of treatment. Thankfully, post-treatment scans showed no remaining cancer cells. By June 2024, Chloe was finally declared in remission.

Emotionally, Chloe found the process challenging. She consequently had to grapple with the stigma of having cancer as a young individual and adjust to life with a stoma. She concurrently navigated the mental health impacts of her stage 3 colon cancer and bloating, including PTSD and anxiety, around hospitals through counseling and support from loved ones.

Watch Chloe’s video to learn more about:

  • How to embrace a bolder outlook on life and seize opportunities that you may once have feared.
  • The importance of listening to your body.
  • Why it’s crucial for you to persist with medical inquiries if you suspect stage 3 colon cancer and bloating.
  • How to avoid letting feelings of embarrassment stop you from seeking help.

  • Name: 
    • Chloe W.
  • Age at Diagnosis:
    • 25
  • Diagnosis:
    • Colon Cancer (Adenocarcinoma of the Colon)
  • Staging:
    • Stage 3
  • Symptoms:
    • Severe abdominal bloating due to stage 3 colon cancer
    • Weight loss
    • Lack of appetite
    • Fatigue
    • Vomiting
    • High ketone levels in urine
  • Treatments:
    • Surgery
    • Chemotherapy

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


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More Colon Cancer Stories

 
Crystal W. colon cancer

Crystal W., Colon Cancer



Symptoms: Blood in stool, intermittent severe lower abdominal pain, urinary tract infection (UTI) with strong odor, fistula

Treatments: Surgeries (cystectomy, oophorectomy, and hysterectomy), chemotherapy

Albita G. stage 4 colon cancer

Albita G., Colon Cancer, Stage 4



Symptoms: Blood in stool, pain during defecation, constant constipation, steady weight gain in the midsection despite exercising

Treatments: Surgery (colectomy, hepatectomy, hysterectomy), chemotherapy, radiation

Kasey S. feature profile

Kasey S., Colon Cancer, Stage 4



Symptoms: Extreme abdominal cramping, mucus in stool, rectal bleeding, black stool, fatigue, weight fluctuations, skin issues (guttate psoriasis)
Treatments: Surgeries (colectomy & salpingectomy), chemotherapy


Chloe W., Colon Cancer, Stage 3



Symptoms: Severe abdominal bloating, weight loss, lack of appetite, fatigue, vomiting, high ketone levels in urine
Treatments: Surgery, chemotherapy
Kristin T. feature profile

Kristin T., Colon Cancer, Stage 2



Symptoms: Chronic digestive issues, bloating, abdominal pain, unpredictable bowel habits, unexplained weight gain, nausea, fever
Treatments: Surgery (removal of the tumor, right ovary, right fallopian tube, and part of the small intestine), chemotherapy

Mark S. feature profile

Mark S., Colon Cancer, Stage 3B



Symptom: Intermittent cramping of varying intensity, localized on the right side

Treatments: Surgery (colon resection), chemotherapy

Categories
Chemotherapy Hysterectomy Ovarian Patient Stories Surgery Treatments

Erin’s Stage 3C High Grade Serous Ovarian Cancer Story

Erin’s Stage 3C High Grade Serous Ovarian Cancer Story

Erin shares her personal battle with high grade serous ovarian cancer. Living with her husband and two adult children in New York, she enjoys biking and creating miniatures. Her health journey began with irregular periods and persistent cramping, which she initially attributed to perimenopause. Despite experiencing chronic fatigue and gastrointestinal issues, she did not suspect anything serious until she began bleeding continuously in November 2020.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After consulting various doctors and undergoing numerous tests, Erin opted for a hysterectomy in August 2021. About a week after the procedure, she began experiencing serious symptoms including constipation and severe pain on the lower sides of her back, and had to go to the hospital. She was struggling with these complications when it was revealed that she had extensive stage 3C high grade serous ovarian cancer. Following the diagnosis, Erin advocated for surgery before chemotherapy to assess the cancer stage. She underwent debulking surgery later in November to reduce the size of the tumor when it couldn’t be fully removed, which confirmed the widespread nature of her cancer.

Despite facing severe physical challenges, including a fistula and subsequent hospitalization, Erin remained proactive about her treatment. She researched extensively, consulting peer-reviewed journals and medical experts to make informed decisions. Her insistence on surgery first played a crucial role in her treatment plan.

Erin endured 6 rounds of chemotherapy, facing only one significant adverse reaction. The treatment exacerbated menopausal symptoms, such as hot flashes, but she persevered. By March 2022, Erin completed her chemotherapy, marking her remission with a triumphant bell ring.

Reflecting on her journey, Erin acknowledges areas where she could have improved her health management, such as quitting smoking and maintaining better hydration and exercise routines. She aims to share her story to help others avoid similar mistakes, encouraging them to quit harmful habits for better health outcomes.

Erin’s narrative emphasizes the importance of self-advocacy, thorough research, and persistence in seeking accurate diagnoses and effective treatments. She concludes with an inspiring message: never give up and continue fighting for one’s health, as life holds immeasurable value despite the challenges faced.


  • Name: 
    • Erin R.
  • Diagnosis:
    • High Grade Serous Ovarian Cancer
  • Staging:
    • Stage IIIc
  • Initial Symptoms:
    • Vaginal bleeding
    • Multiple gastrointestinal symptoms
  • Treatments:
    • Surgery
    • Chemotherapy

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


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Related Cancer Stories

More Ovarian Cancer Stories


Randalynn V., High-Grade Serous Carcinoma, Stage 1C



Symptoms: Pulling sensation when emptying bladder; abdominal pain

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

Shirley P., High-Grade Serous Carcinoma, Stage 3C, BRCA1+



Symptoms: Pulling sensation when emptying bladder; abdominal pain
Treatments: Chemotherapy (carboplatin & paclitaxel), de-bulking surgery, PARP inhibitors
...

Suzann B., High-Grade Serous Carcinoma, Stage 3C, BRCA1+



Symptoms: Inability to urinate
Treatments: Chemotherapy, de-bulking surgery, total hysterectomy
...

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



Symptoms: Pulling sensation when emptying bladder, abdominal pain

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

Sara I., High-Grade Serous & Clear Cell Carcinoma, Stage 3A



Symptoms: Random sharp pains, unrelated scan showed ovarian cyst
Treatments: Debulking surgery, chemotherapy (carboplatin & paclitaxel), PARP inhibitors (clinical trial)
...

Categories
bendamustine (Bendeka) Bexxar CAR T-Cell Therapy Chemotherapy Follicular Lymphoma Gazyva Immunotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories R-CHOP Treatments Vorinostat Zydelig (idelalisib)

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

Laurie, a Los Angeles resident, was diagnosed with stage 4 follicular non-Hodgkin lymphoma in 2006, when she was 46. Her journey to diagnosis began years earlier with vague symptoms—frequent sinus infections, a tendency for her right eye to dry out, fatigue, and a lump in her abdomen. Multiple doctors dismissed her concerns, with one attributing the lump to a hernia. But a diagnostician ordered a CT scan, and it revealed a grapefruit-sized tumor and spots on her lungs.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After undergoing a series of tests, including biopsies, Laurie learned she had follicular non-Hodgkin lymphoma, a type of cancer affecting the lymphatic system. Her initial response to the cancer diagnosis was shock, followed by depression and uncertainty about how to explain the situation to her young son and husband.

Laurie’s treatment regimen started with chemotherapy and a monoclonal antibody, which successfully reduced the tumors after 6 rounds. However, her cancer relapsed, and she explored additional treatment options, including a clinical trial using an HDAC inhibitor (therapy that helps control how cancer cells grow and divide by affecting the cancer cell DNA). It initially stabilized the cancer but ultimately failed after 11 months. Consequently, Laurie turned to alternative therapies, including radioimmunotherapy (delivering high dose radiation directly to the tumor cells) and a more aggressive chemotherapy regimen, but these also proved unsuccessful.

In 2011, Laurie enrolled in a clinical trial for a Pi3 kinase inhibitor (a treatment that works to block a pathway cancer cells use to grow and survive that can slow a cancer’s growth and help keep it under control), which kept her cancer stable for over 5 years, albeit not fully eliminating it. During this time, she learned about CAR T-cell therapy, a cutting-edge treatment using a patient’s own T cells to target cancer cells. While initially not available for follicular lymphoma, CAR T-cell therapy became an option for Laurie in 2018. She consequently underwent the procedure — a remarkable 7th line of cancer treatment. As a result, she achieved remission for the first time in 12 years. As of 2024, Laurie has remained cancer-free. Her oncologist considers her cured, as her CAR T-cells continue to be detectable in her system.

Throughout her treatment journey, Laurie faced numerous challenges, including the side effects of chemotherapy, radiation, and steroids. She developed avascular necrosis, which required hip surgery, a consequence of long-term steroid use. However, despite these struggles, Laurie’s battle with cancer transformed her into a passionate patient advocate. She now works with 3 nonprofits, helping others navigate cancer treatment and advocating for more accessible and less potentially toxic therapies like CAR T-cell therapy. Laurie emphasizes the importance of finding a specialized oncologist, self-advocacy, and the value of second opinions and clinical trials in managing cancer.

Laurie’s story underscores the evolving landscape of cancer treatment, particularly in the context of immunotherapy. She highlights the importance of staying informed and advocating for oneself or having someone advocate on their behalf, especially as new therapies emerge. Through persistence, resilience, and research, Laurie continues to support others facing similar battles. She shares her journey to inspire hope and grow awareness.


  • Name:
    • Laurie A.
  • Age at Diagnosis:
    • 46
  • Diagnosis:
    • Follicular lymphoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Frequent sinus infections
    • Dry right eye
    • Fatigue
    • Lump in abdomen
  • Treatments:
    • Chemotherapy
    • Targeted therapy
    • Radioimmunotherapy

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


Recent Programs Covering Follicular Lymphoma


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Related Cancer Stories

More Follicular Lymphoma Stories

Hayley H., Follicular Lymphoma, Stage 3B



Symptoms: Intermittent feeling of pressure above clavicle, appearance of lumps on the neck, mild wheeze when breathing and seated in a certain position
Treatments: Surgery, chemotherapy

Courtney L., Follicular Lymphoma, Stage 3B



Symptoms: Intermittent back pain, sinus issues, hearing loss, swollen lymph node in neck, difficulty breathing
Treatment: Chemotherapy

John S., Follicular Lymphoma, Stage 4



Symptom: Swollen lymph nodes

Treatments: Clinical trial, chemotherapy

Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4



Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

Treatments: Chemotherapy, targeted therapy, radioimmunotherapy
David shares his stage 4 follicular lymphoma diagnosis
David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy, immunotherapy, radiation, clinical trial, autologous stem cell transplant

Categories
Colorectal Patient Stories Surgery Treatments

Rashawn’s Stage 1 Colorectal Cancer Story

Rashawn’s Stage 1 Colorectal Cancer Story

Rashawn, a mother of 4 from Augusta, GA, is a 10-year stage 1 colorectal cancer survivor who celebrates her journey to health each year on April 28. Despite initial struggles, she maintains a 4.0 GPA while pursuing middle grade education after years away from school.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Rashawn’s cancer story began in 2014, when persistent fatigue and blood in her stool led her to seek medical attention. A colonoscopy revealed a golf-ball-sized mass in her colon, which was later confirmed as cancer. Determined to attend her son’s graduation, Rashawn underwent surgery within weeks, during which doctors removed a significant portion of her colon as well as a large number of lymph nodes. Recovery was challenging but marked by resilience, with support from her family.

Rashawn faced emotional and mental challenges post-diagnosis of stage 1 colorectal cancer, including confusion, fear, anger, being diagnosed with a different kind of cancer, and a lack of readily available resources for colon cancer patients. The absence of support groups and tailored education at the time left her feeling isolated. Over time, she developed strength through self-advocacy, faith, and a desire to help others. Rashawn emphasizes the importance of knowing one’s body and seeking prompt medical attention when something feels off, as delayed action can have severe consequences.

Today, Rashawn continues to manage her health vigilantly, undergoing regular screenings and addressing any concerns immediately. She attributes her survival to her proactive approach and strong support system, which included her mother, a breast cancer survivor, and her extended family. Despite lingering anxiety about recurrence, Rashawn finds purpose in sharing her story to raise awareness about colon cancer and empower others to prioritize their health.

Rashawn’s recovery journey also involved adapting to physical changes, such as altered taste buds and dietary habits. While challenges linger, she finds joy in helping others and living a life of gratitude. Rashawn practices her faith daily, expressing thanks and paying her blessings forward by assisting others. Her transformation into her best self over the last decade exemplifies resilience, faith, and purpose.

Rashawn advises others to trust their instincts, know their bodies, and seek timely medical care. By doing so, she believes more lives can be saved, and individuals can live fuller lives despite adversity.


  • Name:
    • Rashawn M.
  • Diagnosis:
    • Colorectal cancer
  • Staging:
    • Stage 1
  • Age at Diagnosis:
    • 37
  • Initial Symptoms:
    • Extreme fatigue
    • Blood in stool
  • Treatment:
    • Surgery

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


Thank you for sharing your story, Rashawn!

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Related Cancer Stories

More Colorectal Cancer Stories
Monica D. feature profile

Monica D., Colorectal Cancer, Stage 1



Symptoms: None; caught at a routine colonoscopy
Treatment: Surgery (low anterior resection with temporary diverting ileostomy)

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)