Tag: Self-advocacy

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

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

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.

Thank you for sharing your story, Erin!

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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
Initial Symptoms:
- Frequent sinus infections
- Dry right eye
- Fatigue
- Lump in abdomen
Treatment:
- 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.

Thank you for sharing your story, Laurie!

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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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Financial struggles and logistical hurdles with insurance and medication access compounded the difficulties of her chronic lymphocytic leukemia diagnosis. However, Nicole relied on support from family, friends, and her children, alongside advocacy and connection with others facing similar challenges, to maintain her resolve.

Throughout her experience, Nicole emphasized the importance of self-advocacy, understanding her diagnosis, and not comparing her circumstances to others. Her coping mechanisms included leveraging social media to share her experiences, seeking guidance from a CLL specialist, and shifting her perspective on life to prioritize meaningful moments with her children. Nicole’s ultimate hope is for greater awareness and resources for CLL and blood cancers, and encourages others facing similar situations to advocate for themselves, seek help, and live in the moment.

Name: Nicole B.
Age at Diagnosis:
- 38
Diagnosis:
- Chronic Lymphocytic Leukemia
Symptoms:
- Extreme fatigue
- Night sweats
- Lumps on neck
- Rash
- Shortness of breath
Treatments:
- BCL-2 inhibitor
- Monoclonal antibody

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, Nicole!

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More Chronic Lymphocytic Leukemia (CLL) Stories

Margie H., Chronic Lymphocytic Leukemia

Symptoms: Large lymph node in her neck, fatigue as the disease progressed

Treatment: Targeted therapy

Nicole B., Chronic Lymphocytic Leukemia

Symptoms: Extreme fatigue, night sweats, lumps on neck, rash, shortness of breath

Treatments: BCL-2 inhibitor, monoclonal antibody

Exhausted woman experiencing CLL symptoms.

Symptoms of CLL

Learn about how some of the common CLL symptoms first present themselves from patients who have been diagnosed with CLL.

Susan K., Chronic Lymphocytic Leukemia

Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatments: Venetoclax & obinutuzumab

Tags medical access, neck lump, Self-advocacy

Immunotherapy Interferon Melanoma Patient Stories Skin Cancer Surgery Treatments

Kristin’s Stage 3A Melanoma Story

Post author By Katrina Villareal
Post date January 4, 2025
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January 13, 2025

Kristin’s Stage 3A Melanoma Story

Kristin was diagnosed with stage 3A melanoma in April 2008 at the age of 38. Her diagnosis came unexpectedly during her attempts to conceive. While recovering from a fertility procedure, she noticed a change in a lifelong mole on her leg. Prompted by her family history of basal cell carcinoma and her dermatologist’s biopsy, she was diagnosed within days.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Kristin underwent extensive treatments, including two surgeries to remove the melanoma and affected lymph nodes, followed by a challenging year of interferon therapy, which left her with flu-like symptoms and required regular interruptions due to blood count drops. Despite the physical and emotional toll, she worked throughout her treatment and planned a celebratory trip to Alaska once her therapy concluded.

The stage 3A melanoma diagnosis had profound effects on Kristin’s personal life. Her inability to continue trying for children led to a period of depression, but she eventually found emotional resilience through activities like skydiving and advocacy. She began raising awareness about melanoma prevention and promoting the importance of early detection.

Kristin also navigated the complexities of being a caregiver when her mother battled cancer. This experience deepened her understanding of the patient-caregiver dynamic and strengthened her resolve to advocate for improved support and research in oncology.

Sixteen years after her stage 3A melanoma diagnosis, Kristin continues to educate and inspire others, emphasizing melanoma’s preventability and the importance of self-advocacy in healthcare. Her story underscores the critical role of research, the availability of modern treatments, and the emotional challenges survivors face while redefining their purpose.

Name: Kristin M.
Age at Diagnosis:
- 38
Diagnosis:
- Melanoma
Staging:
- Stage 3A
Symptom:
- Change in color and border of a mole on her leg
Treatments:
- Surgeries: melanoma and lymph node removal
- Immunomodulator: interferon

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, Kristin!

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Alexa’s Stage 1B Kidney Cancer Story

Post author By Chris Sanchez
Post date December 18, 2024
No Comments on Alexa’s Stage 1B Kidney Cancer Story

December 18, 2024

Alexa’s Stage 1B Kidney Cancer Surgery Story

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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!

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Lizzie’s Thyroid Cancer Story

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Lizzie, a 27-year-old living in New York City, shares her journey with thyroid cancer. A former collegiate diver at Duke University, she transitioned to running marathons post-COVID. Her health challenges began in her teens when she discovered thyroid antibodies. Despite years of monitoring and medication for thyroid dysfunction, Lizzie was able to stop her medication in 2023, as her thyroid normalized.

In the summer of 2024, Lizzie began experiencing fatigue, which she initially attributed to marathon training and work stress. After an unsatisfactory doctor’s visit, she sought a second opinion. This new doctor conducted a thorough examination, discovered a thyroid nodule, and promptly ordered a biopsy. The results confirmed thyroid carcinoma. Lizzie quickly mobilized, consulting multiple specialists in New York City and ultimately opting for surgery at MD Anderson in Houston. Her procedure, which involved removing part of her thyroid and some lymph nodes, took place less than a month after her diagnosis. Post-surgery, she was declared NED.

Recovery was challenging but brief. Despite being advised to rest, Lizzie remained motivated by her goal to run the Chicago Marathon just 6 weeks after surgery. Supported by her family and friends, she maintained light training and successfully completed the marathon, achieving a personal record. This accomplishment highlights her resilience and determination and underscores her belief in overcoming obstacles.

Lizzie reflects on the importance of self-advocacy and early discovery and surrounding herself with a strong support system. She credits her friends, family, and medical team for helping her navigate the physical and emotional challenges of her diagnosis and recovery. Sharing her journey publicly, including on her Instagram account, also brought unexpected encouragement from her social circle and strangers alike.

Lizzie plans to continue running and aims to complete all six World Marathon Majors. She acknowledges the need to let her body heal while balancing her passion for running with self-care. Lizzie’s story highlights the power of persistence, self-awareness, and leaning on others during difficult times.

Name:
- Lizzie F.
Age at Diagnosis:
- 27
Diagnosis:
- Thyroid cancer (papillary thyroid carcinoma)
Initial Symptoms:
- No outright signs or symptoms; evaluation by new doctor found a nodule
Treatment:
- Surgery (right thyroid lobectomy)

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, Lizzie!

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Samantha’s story started in 2016 when she first experienced symptoms like irregular bleeding and pain, which led her to visit her OBGYN. After a Pap smear revealed abnormal cells, she underwent a LEEP procedure. However, she delayed follow-up appointments, which allowed her condition to worsen. Eventually, her doctors diagnosed her with cervical cancer at the age of 27, shortly after her wedding.

Samantha and her husband were devastated by her diagnosis, especially since they were eager to start a family. Her treatment involved a radical hysterectomy, which was physically and mentally challenging. The surgery altered her life significantly, affecting her identity as a woman and her future family plans.

Samantha’s cancer’s recurrence, in 2018, was marked by severe symptoms that her doctors initially dismissed as stress or a UTI. After months of her pushing for answers, they finally diagnosed her with a large tumor in her cervix and intestines. This led her to find a new medical team who took her concerns seriously. She underwent surgery to remove the tumor, followed by chemotherapy, immunotherapy, and radiation throughout 2019. By the end of the year, her medical team declared her cancer-free, but her journey wasn’t over.

In March 2020, Samantha faced another recurrence. This time, the cancer had significantly affected her intestines and surrounding organs. Despite being told by one oncologist that nothing more could be done, she sought treatment in Los Angeles. There, she underwent a pelvic exenteration, extensive surgery that removed all organs in the pelvis. The procedure gave her a 50/50 chance of survival, and after two and a half months in LA, she finally entered remission.

Samantha emphasizes that the mental health impact of cancer is often overlooked. The trauma of her experiences left her with PTSD, anxiety, and a constant fear of recurrence. She credits her mental health recovery to therapy and self-compassion, acknowledging that healing from the emotional scars of cancer is a long and ongoing process.

Samantha advises those facing similar challenges to advocate for themselves, seek second opinions, and connect with support communities. She highlights the importance of accessing social workers and other resources available through healthcare facilities. For those without insurance, she recommends seeking help from nonprofits that offer mental health support and community-building opportunities. Above all, she encourages people to offer themselves grace and compassion, recognizing that they are doing the best they can in difficult circumstances.

Samantha’s story is one of resilience, self-advocacy, and the power of community. She has learned to navigate the complex and often frustrating healthcare system and now dedicates herself to helping others do the same.

Name:
- Samantha R.
Diagnosis:
- Early stage cervical cancer, adenocarcinoma
Initial Symptoms:
- Irregular bleeding
- Pain
Treatment:
- Surgery: radical hysterectomy, pelvic exenteration surgery
- Chemotherapy
- Immunotherapy
- Radiation therapy
- Hormone replacement therapy
- Hyperbaric oxygen therapy