A Journey of Transformation With Neuroendocrine Cancer

What once seemed impossible became a powerful symbol of hope and resilience. Every mile would represent the struggles and triumphs of NEC patients everywhere.

In 2018, I was diagnosed with neuroendocrine carcinoma (NEC) in my rectum, a rare and aggressive cancer. As I researched, I found limited information that mentioned poor survival rates and few treatment options. Little did I know this diagnosis would lead to a pivotal moment reshaping my entire perspective on life.

My NEC journey began with standard treatments mirroring those for small cell lung cancer. I endured rounds of chemotherapy, radiation and relentless side effects. Each scan brought a mix of hope and dread as the cancer progressed despite our best efforts.

The turning point came on Jan. 20, 2021. After multiple postponements, I was finally stable enough for extensive surgery. The 18-hour procedure was radical — removing my rectum, prostate, bladder, seminal vesicles, parts of my liver and abdominal tissue — essentially resetting my body's battleground against cancer.

Waking up from this marathon surgery was excruciating, far beyond imagination. Yet, amidst this intense physical suffering, I had an epiphany that would forever change my outlook on life.

As I lay there, connected to various tubes and monitors, I realized I had been given a second chance at life. Despite the 100% chance of recurrence my surgeon had warned me about, I was still here, still fighting. This moment of clarity became the cornerstone of my new perspective.

I decided then that every day forward would be a triumph over this disease. The challenges I faced were not just obstacles but opportunities to demonstrate resilience. I vowed to make the most of whatever time I had left, whether months, years or decades.

This shift manifested in my approach to recovery. Once discharged, I pushed myself to walk two miles with a walker, gradually progressing to walking independently and even returning to cycling. Each step was a victory — a testament to my determination to live fully despite the odds.

My newfound outlook extended beyond physical recovery. I began to see my cancer journey not just as a personal battle, but as an opportunity to make a difference for others facing this "forgotten cancer." The lack of information and support I had encountered became a call to action.

This realization culminated in my decision to run a self-supported ultramarathon on World NET Cancer Day. What once seemed impossible became a powerful symbol of hope and resilience. Every mile would represent the struggles and triumphs of NEC patients everywhere.

The surgery and its aftermath taught me that life is precious and unpredictable. It showed me that even in our darkest moments, we have the power to choose how we respond to our circumstances. I chose to transform my pain into purpose, my struggle into strength.

This pivotal moment also reshaped my relationships. I began to cherish every interaction with loved ones, recognizing each moment as a gift. The support of my family, friends and medical team took on new meaning. I saw clearly how interconnected we all are and how much impact our actions can have on others.

As I continued through further treatments, including clinical trials and experimental therapies, I carried this new perspective with me. The side effects, while challenging, became more manageable when viewed through the lens of gratitude for each day I was alive to experience them.

My journey with NEC has been far from easy. There have been countless setbacks, moments of despair and physical hardships. Yet, that pivotal moment after surgery continues to guide me. It reminds me that every day is an opportunity to love, to make a difference, to raise awareness and to push for better treatments for future NEC patients.

This experience has taught me that life isn't about waiting for the storm to pass, but about learning to dance in the rain. It's about finding joy in small moments, strength in vulnerability and purpose in adversity. It's about using our struggles to fuel positive change, not just for ourselves but for others facing similar battles.

As I prepare for my ultramarathon, I carry with me not just physical training, but the emotional and spiritual strength forged through this journey. Each step will be a testament to resilience and a call to action for increased awareness and research for NEC.

To my fellow cancer warriors, caregivers and supporters, let us remember that even in our darkest moments, we have the power to reshape our perspective and find meaning in our struggles. Together, we can turn our individual battles into a collective force for change, ensuring that no cancer, no matter how rare, is forgotten.

In the end, this pivotal moment taught me that life's value isn't measured in the number of days we have, but in how we choose to live each day we are given. And I choose to live with purpose, gratitude, and an unwavering commitment to making a difference in the fight against neuroendocrine carcinoma.

This post was written and submitted by “NEC Bill.” The article reflects the views of Bill and not of CURE®. This is also not supposed to be intended as medical advice.

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