Tag: misdiagnosis

Emily’s Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date January 23, 2025
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January 23, 2025

Emily’s Stage 4 Colon Cancer Story

Emily, a 32-year-old from Alabama, was diagnosed with stage 4 colon cancer at age 27, despite having led an active and healthy lifestyle since her youth. Initially, she experienced abdominal pain and blood in her stool, which led to a life-changing ER visit. Doctors found a tumor in her colon, determined that it was cancerous, and also found that it had already spread to her lymph nodes. This discovery began a grueling series of surgeries, chemotherapy, and setbacks, including bowel obstructions and pancreatitis.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Emily endured multiple chemotherapy regimens with debilitating side effects like neuropathy, nausea, fatigue, and early menopause. Despite these challenges, her faith and determination kept her strong. When standard treatments failed, she turned to immunotherapy and clinical trials at Dana-Farber Cancer Institute. Although some therapies stopped working, she found hope in a clinical trial medicine that reduced her lung tumors by 20%. Despite the trial’s discontinuation, the treatment remains available to her, for which she feels immense gratitude.

Throughout her stage 4 colon cancer journey, Emily and her husband have relied on their faith, community, and a desire to help others. Recognizing the emotional and physical toll of cancer, they founded Fighting with Hope, a nonprofit that sends free chemo care boxes to patients worldwide. These boxes contain over 20 thoughtfully chosen items, such as blankets, ginger candies, and other sweets to help with port flushes, alongside handwritten notes of encouragement. With support from volunteers and media coverage, the organization has delivered just over 1,000 boxes to date.

Emily’s advocacy also emphasizes the importance of early detection. Reflecting on her missed diagnosis due to her young age, she urges healthcare professionals and patients alike to remain vigilant.

Despite ongoing treatments and the unpredictable nature of cancer, Emily remains a beacon of hope. Her faith provides her with peace and strength, enabling her to inspire others through her story and nonprofit work. She advises fellow patients to fight relentlessly, embrace their support systems, and accept help when needed.

Emily’s mission goes beyond her personal battle. She hopes her journey demonstrates the power of resilience, community, and faith in facing life’s greatest challenges. Through her advocacy, she continues to bring light and support to countless individuals navigating the trials of cancer.

Name:
- Emily K.
Diagnosis:
- Colon cancer
Staging:
- Stage 4
Age at Diagnosis:
- 27
Initial Symptoms:
- Abdominal pain
- Blood in stool
Treatment:
- Surgery
- Immunotherapy
- Targeted therapy
- Clinical trials

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, Emily!

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In May 2023, Emily underwent an autologous stem cell transplant. Afterwards, she endured an intense isolation period, followed by extensive physical therapy to regain strength and mobility. By August, scans confirmed remission, yet Emily found survivorship mentally and emotionally taxing. Returning to her job in special education only 4-5 months post-transplant proved difficult, as her immune system remained compromised. She continues to manage her health with frequent medical appointments, immunotherapy, and physical recovery.

Emily’s journey was not without complications. For instance, she suffered a small stroke during treatment, caused by an oversight in managing her blood thinners. Despite the challenges she faced, she emphasizes the crucial role of self-advocacy, community support, and compassionate medical professionals, particularly her nurses, who provided emotional and practical support during her hospitalization.

Emily actively raises awareness about young adults facing late or misdiagnoses, stressing the need for better medical attention for this demographic. She also highlights the impact of genetic factors and Epstein-Barr virus on her cancer, urging the importance of thorough family history and testing.

Now, Emily finds healing through therapy, volunteering at an animal shelter, and reintroducing physical activity. She plans to explore trauma-focused therapies like eye movement desensitization and reprocessing (EMDR) therapy and continues to engage with online communities for support, including on Instagram. While the fear of relapse lingers, Emily focuses on building a new normal and empowering others to advocate for their health and seek community connections during and after treatment.

Name:
- Emily S.
Age at Diagnosis:
- 28
Diagnosis:
- Burkitt non-Hodgkin lymphoma
Staging:
- Stage 4
Initial Symptoms:
- Constant fatigue
- Tongue deviated to the left
- Abscess in right breast
- Petechiae on legs
- Night sweats
- Nausea and vomiting
- Persistent cough
Treatment:
- Chemotherapy
- Stem cell transplant
- Immunotherapy

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, Emily!

Inspired by Emily's story?

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Alexa, a young woman in her second year of marriage and surrounded by a supportive family and a close-knit circle of friends, was diagnosed with stage 1B chromophobe renal cell carcinoma (kidney cancer) in August 2024.

Alexa’s story began in March 2024, when she noticed blood in her urine, as well as lower back pain and abdominal cramping. Initial clinic visits misdiagnosed her condition as kidney stones. Despite multiple rounds of antibiotics and ongoing symptoms, Alexa persisted in seeking answers until one provider referred her to a urologist.

The urologist confirmed Alexa’s instincts; a 3.5-cm mass was discovered on her right kidney through ultrasound, leading to a CT scan and biopsy. The diagnostic process took months, during which she grappled with uncertainty and advocated tirelessly for her health. Her biopsy confirmed that the tumor was malignant, prompting discussions about treatment options.

Kidney Cancer Surgery Options

Alexa’s surgeon presented her with 3 treatment choices: partial nephrectomy, radical nephrectomy, or cryoablation. After careful deliberation with her family, she opted for a laparoscopic radical nephrectomy to remove her entire right kidney. The surgery succeeded, with no cancer found to have spread beyond the afflicted kidney. Recovery was challenging but marked by steady progress over 6–8 weeks. Alexa regained her strength and reflected on the resilience she built during this period.

The mental toll of her diagnosis and kidney cancer surgery deeply affected Alexa. Waiting for pathology results tested her patience and emotional endurance. However, support from her husband, friends, and even distant acquaintances helped her navigate survivorship. She highlighted the importance of self-advocacy, medical transparency, and connections with others facing similar battles.

Alexa has become a passionate advocate for kidney cancer awareness, especially among younger women and men, as her diagnosis is uncommon in her age group. She emphasizes that every cancer journey deserves recognition, regardless of its severity or rarity. The experience has reshaped her perspective on life, teaching her to focus on gratitude, resilience, and cherishing the present.

Now in survivorship, Alexa shares her story, including on TikTok, to inspire others to prioritize health, advocate for themselves, and find strength in community support. She urges those in similar situations to remain hopeful, lean on loved ones, and focus on making the most of every day, no matter the challenges.

Name:
- Alexa D.
Diagnosis:
- Chromophobe renal cell carcinoma (kidney cancer)
Staging:
- Stage 1B
Age at Diagnosis:
- 30
Initial Symptoms:
- Blood in the urine
- Lower abdominal pain
- Cramping
- Back pain on the right side
Treatment:
- Surgery (radical right nephrectomy)

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, Alexa!

Inspired by Alexa's story?

Share your story, too!

Nicole’s Stage 4 Ovarian Cancer Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Nicole, 42, from the Tampa Bay area in Florida, shares her experience battling ovarian cancer in 2022, 15 years after a battle with breast cancer.

Initially, Nicole experienced unexplained symptoms, including extreme abdominal pain, nausea, frequent urges to urinate without success, and chest pain. Despite undergoing multiple tests and consulting specialists, she was told by various doctors that nothing was wrong. Her symptoms worsened, leading her to experience pain while eating and feeling constantly full. After visiting the ER, she was dismissed with advice to take a stool softener, leaving her frustrated and in worsening pain.

It wasn’t until a routine visit to her ob-gyn that Nicole received a proper diagnosis. Her doctor recommended an ultrasound, which revealed a large mass on her omentum. Further tests led her to Moffitt Cancer Center, where it was discovered that the cancer had spread to areas near her clavicles and heart, explaining her chest pain.

Nicole began chemotherapy, undergoing 7 treatments every 3 weeks. Having experienced chemotherapy for breast cancer in 2009, she noted advancements in treatment, such as the cold cap, which helped her keep her hair—a small but meaningful comfort during her second cancer battle.

Nicole’s chemotherapy sessions were successful in reducing her CA125 levels from an alarming 3,300 to much lower numbers after each treatment. After 4 sessions, scans showed that the cancer near her clavicles had disappeared, clearing her for surgery. In April 2023, she prepared to undergo a total hysterectomy. During the operation, her oncologist found that her cancer had spread to multiple organs, including her liver, diaphragm, and intestines, requiring a much more extensive surgery than anticipated. Despite the grueling recovery, including severe pain and breathing difficulties, Nicole pushed through.

Following surgery, Nicole completed her remaining chemotherapy sessions and began treatment to prevent cancer recurrence. Despite a brief hospitalization due to low platelet levels, she has been cancer-free since July 2023.

Throughout her journey, Nicole reflects on the emotional toll the diagnosis took on her, recalling how she leaned on her husband for support but often found herself crying in private. She acknowledges the strength she found in herself and her gratitude for being able to be there for her family. In July, she and her husband finally shared her cancer journey with their children. Now, they actively participate in awareness activities, supporting both breast and ovarian cancer causes.

Nicole advises others to trust their instincts and not let doctors dismiss their concerns, emphasizing the importance of self-advocacy in her survival.

Name:
- Nicole L.
Age at Diagnosis:
- 40
Diagnosis:
- Ovarian cancer
Staging:
- Stage 4
Initial Symptoms:
- Extreme abdominal pain
- Nausea when in a moving vehicle
- Frequent urge to urinate (often unsuccessful)
- Chest pain
Treatment:
- Chemotherapy
- Surgery (removal of cancer from liver, diaphragm, bladder, small intestine; total hysterectomy)
- Cold cap
- PARP inhibitor