Tag: stage 4

Emily’s Stage 4 Burkitt Non-Hodgkin Lymphoma Story

Post author By Chris Sanchez
Post date January 19, 2025
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January 19, 2025

Emily’s Stage 4 Burkitt Non-Hodgkin Lymphoma Story

Emily, from Richmond, VA, was diagnosed with stage 4 Burkitt non-Hodgkin lymphoma in November 2022.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Emily’s journey began with unexplained symptoms, including prolonged sickness, speech changes, and an inability to stick her tongue out straight. Initially, doctors misdiagnosed her with Eagle syndrome and anxiety. She also experienced night sweats, petechiae, and severe weakness, but struggled to find a diagnosis until an ENT referred her to palliative care, urging immediate action.

Emily visited the ER, where specialists quickly recognized the severity of her condition. A lymph node biopsy confirmed stage 4 Burkitt lymphoma, affecting her bone marrow, spleen, and central nervous system. She was also found to have hemophagocytic lymphohistiocytosis (HLH).

Emily began aggressive treatment involving 6 rounds of chemotherapy. Chemotherapy caused severe side effects, including mucositis, rapid weight loss, and extreme fatigue. Despite the challenges, Emily remained determined, knowing the transplant could cure both her cancer and HLH.

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
Symptoms:
- Constant fatigue
- Tongue deviated to the left
- Abscess in right breast
- Petechiae on legs
- Night sweats
- Nausea and vomiting
- Persistent cough
Treatments:
- Chemotherapy
- Stem cell transplant
- Immunotherapy

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

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

Thank you for sharing your story, Emily!

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Tiffany, a 38-year-old mother of 4, has stage 4 bile duct cancer or cholangiocarcinoma, also known as liver cancer. In April 2024, she experienced severe left flank pain, which led her to seek medical attention. A CT scan at the hospital revealed a mass on her liver, initially suspected to be colon cancer. Further tests, including an MRI, PET scan, and liver biopsy, confirmed the diagnosis of cholangiocarcinoma that had spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Following the diagnosis, Tiffany began receiving treatment. Her oncologist initiated a combination of chemotherapy and immunotherapy, alternating between therapies weekly, with a rest period every 3 weeks. Despite initial radiation treatments failing to shrink the tumor on her spine, targeted radiation was applied to her liver, followed by spine surgery to remove most of the tumor. Recovery was challenging, requiring a week-long hospital stay, physical therapy, and the use of a walker and cane at home.

Subsequent treatment involved ablation surgery to address new lesions on her liver. Tiffany resumed chemotherapy and immunotherapy, experiencing side effects such as back pain, headaches, and nausea. As her treatment continued, she received support from her medical team, including a liver specialist in Baltimore.

Mentally, Tiffany struggles with anxiety and the fear of leaving her family. She takes anxiety medication to help cope, though the emotional toll remains significant. She stresses the importance of self-advocacy, sharing her story to raise awareness about cholangiocarcinoma and stressing the importance of regular medical check-ups.

The ongoing battle with cancer challenges Tiffany physically and emotionally, but she remains determined to see her children grow up. Her story serves as a reminder to pay attention to one’s health and advocate strongly for oneself in the face of medical challenges.

Name:
- Tiffany J.
Age at Diagnosis:
- 38
Diagnosis:
- Liver cancer (cholangiocarcinoma)
Staging:
- Stage 4
Initial Symptoms:
- Left flank pain
Treatment:
- Radiation
- Chemotherapy
- Surgery

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

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

Thank you for sharing your story, Tiffany!

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Rachael describes the difficult emotional decision to undergo a hysterectomy, knowing it meant she would no longer be able to have more children. However, she prioritized her health and the need to be there for her 3 children. She talks about her intense chemotherapy regimen, which was both physically and mentally challenging. One of her greatest fears was not being able to be the same mother to her children during this time, but with the support of family and friends, she was able to manage her treatments and maintain a sense of normalcy for her kids.

Rachael reflects on the strange and sudden symptoms she experienced before her diagnosis of sigmoid colon cancer, including the loss of taste, appetite, and intense stomach pain. She also recalls how her dog seemed to sense something was wrong, constantly staying close to her in the months leading up to her diagnosis.

Rachael expresses a determination to keep moving forward despite the numbness and emotional difficulty of the situation. After completing her chemotherapy, she now faces the uncertainty of whether her tumors will grow again. She is awaiting further scans and potential liver surgery as well as HIPEC treatments. While she feels anxious about the future, she remains resilient and has accepted that she cannot control everything. She now possesses a sense of peace and a more positive outlook on life.

Despite moments of frustration and asking, “Why me?”, Rachael has found strength in her acceptance of her condition. She is grateful for her family, friends, and support system, and continues to focus on spending quality time with her children, making the most of the present while preparing for any challenges that may lie ahead.

Name:
- Rachael M.
Age at Diagnosis:
- 33
Diagnosis:
- Colorectal cancer
Staging:
- Stage 4
Initial Symptoms:
- Loss of sense of taste and smell
- Loss of appetite and vomiting
- Stomach pain
- Bloating
- Headaches
- Fatigue
Treatment:
- Surgery (total hysterectomy, sigmoid colon removed, tumor removed in colon, stoma configuration, port placement)
- Chemotherapy

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

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

Thank you for sharing your story, Rachael!

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Marisa shares her experience living with stage 4 synovial sarcoma. Diagnosed initially with stage 3 in 2017, Marisa’s symptoms began in high school when she noticed a small bump on her foot. Despite consultations with podiatrists over the years, the bump was misdiagnosed as a benign cyst until after its removal in 2017. By that time, the lump had grown significantly during her pregnancy. The devastating cancer diagnosis came when her daughter was six weeks old, marking a life-changing moment.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Marisa’s treatment included chemotherapy, a below-knee amputation in 2017, and multiple surgeries for lung metastases, starting in 2020. She underwent four pulmonary wedge resections, a segmentectomy, and later, radiation therapy to target residual cancer. Unfortunately, the cancer became more aggressive, spreading to her bones and lungs by early 2023. Despite numerous treatments, including 27 lung radiation sessions and systemic chemotherapy, Marisa remains optimistic and continues to monitor her health closely.

Mentally and emotionally, the impact of cancer has been profound. Marisa finds it challenging to balance parenting, work, and being a stage 4 cancer patient. She’s candid about the toll it takes on her and her family, especially explaining her illness to her young daughter. However, Marisa has chosen to focus on small joys—mundane daily tasks and moments with loved ones that now hold deeper meaning.

Marisa emphasizes the importance of self-advocacy in health care, urging others to trust their instincts and pursue answers when something feels wrong. She shares her story to provide hope to others battling sarcoma or cancer. She aims to raise awareness about the disease and inspire others with her determination to live fully, even while managing ongoing health challenges. Her message is clear: life with stage 4 cancer is not the end—it’s an opportunity to cherish each moment and look forward to advancements in medical science.

Name: Marisa C.
Age at Diagnosis:
- 24
Diagnosis:
- Synovial Sarcoma
Staging:
- stage 3 (2017)
- Stage 4 (2021)
Symptom:
- A small bump on the foot (stable for years, then grew during pregnancy), pain when pressed, difficulty wearing closed shoes
Treatments:
- Surgeries: below-knee amputation, pulmonary wedge resections, and segmentectomy
- Chemotherapy
- Radiation: lungs and hip

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

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

Thank you for sharing your story, Marisa!

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Ken’s Stage 4 Colon Cancer Story

Post author By Chris Sanchez
Post date January 6, 2025
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January 6, 2025

Ken’s Stage 4 Colon Cancer Story

Ken, 59, from Minnesota, shares his journey battling stage 4 colon cancer, which he was diagnosed with in October 2022. His life prior to diagnosis included an adventurous career as a meteorologist and storm chaser, followed by a long stint as a volunteer English teacher in the Himalayas. However, in 2020, the COVID-19 pandemic forced a change of plans, and he settled back in the U.S. with his family.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Initially, Ken ignored concerning symptoms like intermittent bowel changes and blood traces, attributing them to minor issues. His symptoms diversified and intensified in late 2022, with frequent fevers, weight loss, and fatigue. After visiting urgent care, he received a CT scan revealing thickening of the sigmoid colon and metastasis to his liver [making it a stage 4 colon cancer diagnosis]. His oncologist warned him that without treatment, his life expectancy was limited to under a year. Though chemotherapy was initiated promptly, Ken faced immediate complications, including endocarditis, which halted his treatment temporarily and required a PICC line and weeks of antibiotics. The chemotherapy’s side effects left him drained and underweight, sinking to his lowest point emotionally and physically by early 2023.

A critical moment came when Ken experienced an intestinal blockage. Doctors recommended palliative care and hospice, as his heart was too weak for surgery. However, Ken’s cousin, a liver specialist at MD Anderson, connected him to the Mayo Clinic, where surgeons conducted a life-saving colectomy and liver resection, removing 68% of his liver. This marked a turning point in his recovery, as he began to regain weight and strength.

In 2024, after successfully undergoing a heart valve replacement and prostate procedure, Ken faced new challenges as scans revealed minor cancer regrowth. His oncology team pursued aggressive treatments, including ablations for liver and lung spots, as well as new medications, all of which proved highly effective. Despite persistent health challenges and skin reactions, Ken’s latest scan in mid-July 2024 showed that his treatment was working remarkably well.

Throughout this ordeal, Ken’s faith and positive outlook and his strong support network of family and medical teams helped him navigate his complex diagnosis and treatment, underscoring his resilience and determination to overcome each new hurdle.

Name:
- Ken S.
Age at Diagnosis:
- 59
Diagnosis:
- Colon cancer
Staging:
- Stage 4
Symptoms:
- Intermittent appearance of blood in stool
- Occasional diarrhea
- Increase in bowel movement frequency
- Fevers and chills
- Fatigue
- Weight loss
Treatments:
- Chemotherapy
- Surgery

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

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

Thank you for sharing your story, Ken!

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Adjusting to life with a colostomy bag, Roshonda emphasizes listening to her body and finding what works best for her. Though the journey has been painful and challenging, she remains grateful for her support network, faith, and the resilience she’s developed throughout her battle.

Name:
- Roshonda C.
Age at Diagnosis:
- 37
Diagnosis:
- Rectal cancer
Staging:
- Stage 4
Initial Symptoms:
- Blood in stool
- Blood from rectum after intercourse
- Sensation of incomplete bowel movements
Treatment:
- Chemotherapy
- Surgery
- Radiation

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

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

Thank you for sharing your story, Roshonda!

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Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

At age 34, Shirley, a translator from Southern California, faced the unexpected news that she had stage 4 lung cancer with an ALK mutation.

Shirley’s journey began in 2021, during the height of the COVID-19 pandemic, with a persistent cough that refused to go away despite multiple rounds of antibiotics and testing. Her doctors reassured her it was likely a minor infection, even though her symptoms grew to include severe back pain. Finally, a CT scan revealed a mass, but doctors still downplayed the likelihood of cancer due to her young age and history. Initially undiagnosed, she faced months of additional procedures, including 2 bronchoscopies and a wedge resection surgery. Only after extensive testing did she receive the staggering news: she had adenocarcinoma, initially suspected to have originated elsewhere in her body. Despite various scans showing otherwise, she spent weeks fearing widespread cancer.

Determined to take control, Shirley switched hospitals, explored different insurance options when she got married to her longtime boyfriend, and underwent chemotherapy. The side effects were brutal, including severe hair loss, swallowing difficulties, and infections that required hospitalization. Finally, genetic testing revealed she had an ALK mutation, allowing her to switch to a targeted therapy in pill form, providing 2 years of relative stability and an improved quality of life. Then, in 2023, the cancer began progressing again, necessitating further procedures and consultations. When her initial targeted therapy became ineffective, Shirley bravely enrolled in a clinical trial for a 4th-generation ALK inhibitor in July 2024. This new medication has had minimal side effects, with her tumor currently stable. Although she initially hesitated to join a clinical trial, Shirley realized its promise and now appreciates the thorough monitoring and regular scans.

Living with an incurable cancer has profoundly affected Shirley’s outlook on life. “It feels like I have a bomb inside of me,” she says, expressing the constant awareness of her tumor’s presence. With humor as her coping mechanism, Shirley shares darkly comedic memes and gives villain names to her tumor. Her husband and fellow cancer patients have become her pillars of support, as she finds comfort and laughter within her community of ALK patients, appreciating the unique understanding they bring.

Despite the trials of cancer, Shirley finds solace in sharing her experience, including on her Instagram, to help others. Her advice to newly diagnosed patients is heartfelt: avoid over-Googling statistics and connect with others who understand the cancer journey. “You’re not a statistic,” she insists. “See yourself as an individual.”

Shirley’s journey is one of resilience and transformation, where she now cherishes connections and purpose. By sharing her story, she aims to support others, proving that even amid uncertainty, there is value in embracing life with hope and humor.

Name:
- Shirley M.
Diagnosis:
- Lung cancer
Staging:
- Stage 4
Initial Symptoms:
- Persistent cough
- Wheezing
- Back pain
- Shortness of breath
Treatment:
- Chemotherapy
- Targeted therapy
- Radiation

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

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

Thank you for sharing your story, Shirley!

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Shayla’s Metastatic Colorectal Cancer Story

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Shayla was diagnosed with metastatic colorectal cancer at 33 years old after years of experiencing unexplained digestive issues. Initially, symptoms like stomach sensitivity, exhaustion, and food intolerances were attributed to a sensitive stomach. Over time, she sought medical attention, including multiple gastroenterologist consultations but received inconclusive diagnoses. She was diagnosed with celiac disease, but despite cutting out gluten, she continued to feel unwell.

After more months of fatigue, Shayla noticed blood in her stool, which persisted for several weeks. When her husband insisted she seek medical help, a colonoscopy revealed polyps. While initially told that they weren’t cancerous, a biopsy later confirmed that one was malignant. Further tests revealed lesions in her liver and lungs, prompting additional biopsies. The lesions in her lungs were clear, but the cancer had metastasized to her liver, resulting in a stage 4 colorectal cancer diagnosis.

Her treatment plan included four rounds of chemotherapy, followed by a hepatectomy or liver resection to remove 25% of her liver. After the surgery, Shayla began her chemotherapy again, with plans for more rounds to finish her treatment. Although she initially struggled with side effects, such as hot flashes, nausea, and fatigue, her doctors adjusted her treatment plan to help her manage better. However, cold sensitivity, neuropathy, and physical weakness persisted.

Despite these challenges, Shayla remained focused on her healing and recovery, even as the emotional toll of her diagnosis began to weigh on her mental health. She shared that the isolation during recovery and the struggle with seeing her children react to her illness was particularly difficult.

Shayla advocates for others to take their symptoms seriously, stressing the rising rates of colorectal cancer in younger adults. She encourages others to seek second opinions and advocate for themselves if they’re not satisfied with their medical care. Through her experience, she has seen the importance of a strong support network and the need for proactive health care, urging others to catch cancer early to increase treatment success.

Name: Shayla L.
Age at Diagnosis:
- 33
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 4
Symptoms:
- Stomach sensitivity
- Food intolerances
- Exhaustion
- Blood in stool
Treatments:
- Chemotherapy
- Surgery: hepatectomy (liver resection)

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

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

Thank you for sharing your story, Shayla!

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Lindy’s Stage 4 Colon Cancer Story

Post author By Katrina Villareal
Post date December 17, 2024
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February 4, 2025

Lindy’s Stage 4 Colon Cancer Story

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Lindy was diagnosed with stage 4 colon cancer when she was two months postpartum at age 34. During her pregnancy, Lindy experienced severe abdominal pain, changes in bowel movements, blood in her stool, and significant discomfort, all of which she initially attributed to pregnancy. Unbeknownst to her, these symptoms were indicative of colon cancer, which was eventually discovered during a routine full-body MRI for a previous benign brain tumor and spinal tumor.

Doctors identified malignant cancer had spread to her colon, lymph nodes, liver, and lungs. The shock of her diagnosis came at a time when Lindy was navigating the challenges of new motherhood. She took an active role in researching her diagnosis, and while the news was overwhelming, it helped her process the information before meeting with her oncologist.

Lindy’s treatment began swiftly with chemotherapy in January following her December diagnosis. Although surgery was not considered an immediate option due to the cancer’s spread, chemotherapy has been her primary treatment. She transitioned to maintenance chemotherapy, as her body responded well to the treatment with minimal side effects. While she still experiences some numbness from neuropathy, she considers herself fortunate for not facing more severe symptoms.

Throughout her experience, Lindy has been grateful for her medical team, who never dismissed her concerns despite her young age. While colon cancer is typically seen in older individuals, Lindy’s case is part of a growing trend of younger people being diagnosed with the disease. This has prompted her to encourage friends and family to undergo early screening.

Lindy is realistic about her prognosis, understanding that while her cancer is not curable, it is treatable, and she remains hopeful for potential advancements in treatment. She has made practical preparations for the future while focusing on enjoying life with her son and husband. Lindy’s strong support system has helped her navigate both motherhood and cancer.

Lindy emphasizes not spiraling into despair. Instead, she encourages others to seek out a supportive care team, possibly including palliative care to manage pain symptoms, and to focus on living in the moment. Lindy’s outlook remains positive, bolstered by the progress she’s made and the hope for future treatment developments. Despite the challenges, she is determined to live as fully as possible, enjoying time with her loved ones.

Name: Lindy A.
Age at Diagnosis:
- 34
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptoms:
- Blood in stool
- Changes in bowel movements
- Pencil-thin stool
- Severe abdominal pain
- Loss of appetite
- Rapid weight loss
- Anemia
- Fatigue
Treatments:
- Chemotherapy

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

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

Thank you for sharing your story, Lindy!

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Angela’s Stage 4 Leiomyosarcoma Story

Post author By Chris Sanchez
Post date December 13, 2024
No Comments on Angela’s Stage 4 Leiomyosarcoma Story

December 13, 2024

Angela’s Stage 4 Leiomyosarcoma Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Angela J., who has been diagnosed with uterine leiomyosarcoma, shares her experiences and challenges related to her illness. She provides a detailed account of her journey from the onset of symptoms to the current state of her health.

Angela describes how she first started experiencing irregular menstrual cycles in 2017. Over time, these cycles became progressively worse, accompanied by increased pain, heavier bleeding, and other symptoms. She sought medical help and was put on hormone treatments to manage the symptoms. Additionally, she underwent a uterine ablation in hopes of reducing the bleeding and controlling her condition. However, despite these efforts, the symptoms persisted and worsened over time.

In 2023, Angela’s condition deteriorated, leading to severe pain and significant weight gain. An emergency situation ensued, which required her to undergo surgery. It was only then that the doctors discovered that she had uterine leiomyosarcoma, a rare and aggressive form of cancer. This diagnosis marked a turning point in Angela’s journey, leading to a shift in treatment and care.

Following the diagnosis, Angela underwent chemotherapy. The chemotherapy regimen brought its own set of challenges, including difficult side effects. Despite these hardships, she received the positive news that her cancer had stabilized and is not currently progressing.

Angela shares her experience with the ongoing adjustments to her life post-diagnosis. She is currently on disability retirement, which has allowed her to focus more on personal interests and passions, such as painting, arts and crafts, and spending time with her grandchildren. She finds solace and joy in these creative activities, as well as in writing a book, which has become another outlet for her emotions and reflections during this period.

Angela expresses a sense of resilience and hope as she navigates her new reality. She expresses gratitude for her current stable condition, acknowledging the difficulties she has faced but also the strength she has found in creativity and family support.

Name:
- Angela J.
Diagnosis:
- Uterine leiomyosarcoma
Age at Diagnosis:
- 46
Staging:
- Stage 4
Initial Symptoms:
- Pain in the left hip, thigh, back, and abdominal area
- Difficulty passing stools, alternating with diarrhea
- Nausea
- Swollen abdomen and stomach
- Feeling full quickly
- Rapid weight gain
Treatment:
- Surgery (hysterectomy, partial salpingectomy)
- Chemotherapy

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

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

Thank you for sharing your story, Angela!

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Emily’s Stage 4 Burkitt Non-Hodgkin Lymphoma Story

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Tiffany’s Stage 4 Liver Cancer Story

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Rachael’s Stage 4 Sigmoid Colon Cancer Story

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Marisa’s Stage 4 Synovial Sarcoma Story

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Ken’s Stage 4 Colon Cancer Story

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Roshonda’s Stage 4 Rectal Cancer Story

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Shirley’s Metastatic Lung Cancer Story

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Shayla’s Metastatic Colorectal Cancer Story

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Lindy’s Stage 4 Colon Cancer Story

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Angela’s Stage 4 Leiomyosarcoma Story

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