Tag: Self-advocacy

Nicole’s Chronic Lymphocytic Leukemia (CLL) Story

Post author By Katrina Villareal
Post date January 8, 2025
No Comments on Nicole’s Chronic Lymphocytic Leukemia (CLL) Story

January 13, 2025

Nicole’s Chronic Lymphocytic Leukemia (CLL) Story

Nicole, a nurse and single mother of three from Florida, was diagnosed with chronic lymphocytic leukemia (CLL) a week before her 39th birthday. She initially attributed her symptoms—extreme fatigue, night sweats, and persistent lumps on her neck—to the demands of her job during the pandemic or possibly pre-menopause. After a series of misdiagnoses, including post-COVID fatigue and infections, Nicole’s OB/GYN referred her to an ENT, triggering a series of tests that led to her leukemia diagnosis.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

Despite the emotional and logistical challenges, Nicole adopted a pragmatic approach, focusing on understanding her disease and navigating her treatment plan. Nicole underwent an initial six-month treatment with a BCL-2 inhibitor and monoclonal antibody. While the therapy brought her into remission temporarily, symptoms such as night sweats and fatigue resurfaced, prompting renewed treatment of the BCL-2 inhibitor.

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!

Inspired by Nicole's story?

Share your story, too!

More Chronic Lymphocytic Leukemia (CLL) Stories

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.

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

Hannah D.

Symptoms: Fatigue, high WBC

Treatment: Imbruvica, venetoclax

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
No Comments on Kristin’s Stage 3A Melanoma Story

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!

Inspired by Kristin's story?

Share your story, too!

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!

Inspired by Alexa's story?

Share your story, too!

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!

Inspired by Lizzie's story?

Share your story, too!

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