Exploring the possibilities beyond a cholangiocarcinoma diagnosis, embracing critical thinking, collaboration, increasing patient empowerment

Pictorial Patient Pathway - Healthy to Terminal to Healthy

Steve Holmes
“Improving cancer survival through simplified genetics and patient empowerment

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The Empowered Patient

See Beyond the Diagnosis: See all the possibilities to beat Cholangiocarcinoma


Critical Thinking Patient-Centered Collaboration Genetic Metabloic

August 10, 2023
By Steve Holmes
Stage 4 Cholangiocarcinoma Survivor
CCF Australia

Empowering Patients and Healthcare Providers to Explore Beyond Conventional Wisdom

The patient is the center of this exploration. In a world where the crowded center of accepted opinion often shapes our understanding, the patient’s unique perspective can shine a light on possibilities within and beyond the diagnosis. Patients must have the full, unobstructed right to question their truths and the truths of those accepted opinions that may stand in the way of their survival. They must be empowered to seek answers, challenge conventions, and explore pathways that may diverge from the well-trodden path.

It would be an incredibly arrogant assumption that patients are not qualified to engage in this exploration. They have the most to gain and lose; they are the ones walking on that thin edge between life and death. Patients are walking the talk, and if successful, they will be the ones to expand the horizons of what is possible. Their insights, courage, and determination are invaluable.

From the microscopic cities within our cells to the nuances of cholangiocarcinoma, from the debated origins of cancer to the empowering patient-centered approach, we will traverse a path that calls for reflection, exploration, and innovation. Our goal is not merely to provoke thoughtful inquiries and inspire new perspectives but to empower the patient in a relentless pursuit of understanding, even in the face of uncertainty and limitations.

We recognize that the very medical system that seeks to support should not also be the very system that seeks to constrict or limit a patient’s critical thinking, especially if the patient outcome is grim and answers are elusive. Every individual deserves the right to fight, question, and seek hope until the last breath.

Join us on this intellectual adventure as we unravel the mysteries of cancer, not through a linear roadmap but through a winding pathway of critical thinking. Let’s embrace the complexity and seek understanding beyond the ordinary, always with the patient’s voice, courage, and determination leading the way.

Fighting Beyond: Empowering Patients and Healthcare Providers in the Battle Against Cholangiocarcinoma

Cholangiocarcinoma, a rare and often fatal cancer of the bile ducts, presents a grim prognosis for many. The journey from diagnosis to treatment is fraught with uncertainty, fear, and desperation. For inoperable cases, especially those with specific mutations like IDH1, the medical community’s ability to offer hope can be severely limited.

But does it have to be this way? Can we forge a new path that goes beyond conventional medical wisdom, one that empowers patients to take control of their destiny and encourages healthcare providers to support them, even when faced with the seemingly insurmountable?

A Patient’s Right to Fight

Every patient diagnosed with cancer has a unique story, a unique body, and unique needs. They also have something universal: the right to fight for their life on their terms. For some, this may mean exploring alternative therapies, unconventional diets, or experimental treatments.

This is not a rejection of conventional medicine but rather an expansion of possibilities. It’s a call to recognize that no one size fits all, and that patient autonomy must be respected and supported, even when it challenges conventional wisdom.

Bridging the Gap with Healthcare Providers

Healthcare providers face a complex and delicate balance. They are bound by ethical guidelines, scientific evidence, and legal responsibilities. However, they are also human beings, empathizing with their patients’ fears and hopes.

The current paradigm often places healthcare providers in the unenviable position of having to manage a patient’s decline toward death within the confines of established medical practices. But what if they could be part of a more dynamic solution?

Oncologists, faced with the limits of conventional medicine, must recognize the profound distinction between their role as medical professionals and the deeply personal, existential journey of a patient facing death. The end of medical options should not mark the end of hope, exploration, or dignity for the patient. Standing aside without disparagement, supporting the patient’s right to fight, question, and seek hope until the last breath, is not a failure of duty but a profound act of compassion and respect.

Critical Thinking and Collaboration

The answer lies in fostering critical thinking and collaboration between patients, healthcare providers, and specialists across various disciplines. This includes being open to discussing alternative therapies, understanding the intricacies of metabolic and genetic interplay in cancer, and respecting a patient’s right to explore avenues beyond the convention.

For example, exploring the connections between metabolic failure and genetic mutations in cholangiocarcinoma could open up new therapeutic possibilities. A patient’s interest in something like a ketogenic diet should not be dismissed outright but rather evaluated with an open mind.

A New Path Forward

The battle against cholangiocarcinoma is a complex and deeply personal one. It requires a shift in thinking from both patients and healthcare providers. Patients must be empowered to take control of their journey, to explore, question, and fight beyond the limitations of their diagnosis.

Healthcare providers must be willing to engage in open dialogue, to listen, and to support their patients’ autonomy, even when it leads them into uncharted territory.

The right to fight beyond should not be a privilege but a fundamental aspect of cancer care. By embracing critical thinking, collaboration, and empowerment, we can forge a new path in the battle against cholangiocarcinoma, one that honors the complexity of the human spirit and the unyielding desire to live.

Invisible Cities Within: Understanding the Cellular Metropolis

Our bodies are intricate landscapes, composed of over 30 trillion cells, each functioning like a miniature city within a vast country. These cities follow a master blueprint consisting of 20,000 genes that guide their growth, function, and interactions. But what happens when the rules change? When mutations, both inherited (germline) and acquired (somatic), disrupt the harmony of our cellular metropolis?

About 80% of cancers arise from somatic mutations, making them the usual suspects in the detective story of cancer. Yet, the debate continues: Is it the gene mutations causing metabolic changes leading to cancer, or do metabolic changes cause the gene mutations that result in cancer? The relationship between genetic and metabolic failures is a complex dance, and both may play a leading role.

Understanding this intricate relationship may open new avenues for cancer therapies. It may also lead us to reconsider the conventional wisdom that cancer is solely a genetic disease and explore the metabolic aspects.

Beyond Convention: The Patient’s Journey

For an inoperable CCA patient with an IDH1 mutation and metastases, the conventional medical pathway may seem like a terminal route. Yet, the right to fight beyond convention, to question, explore, and seek alternative paths, must always remain unobstructed.

Patients must be empowered to look beyond evidence-based medical interventions, especially when faced with limitations. The medical profession’s paternalistic approach, which may inadvertently constrict or limit a patient’s critical thinking, must be replaced with support, encouragement, and collaboration.

Nutritional Pathways: Keto Diet and Inflammation

The exploration of alternative approaches like a ketogenic diet, inspired by Otto Warburg’s metabolic theories, presents another layer of complexity. While not a one-size-fits-all solution, the ketogenic diet may offer a low-inflammation approach, potentially impacting cancer’s metabolic landscape.

The critical consideration here is personalized guidance, recognizing that healthcare providers may have varying perspectives on nutrition. Yet, the patient’s voice must not be silenced by dogmas and preconceived attitudes.

A Tapestry of Perspectives

Cancer is not a monolithic entity; it’s a tapestry woven from genetic, metabolic, immunological, and personal threads. The right to question, to explore beyond the conventional, to challenge accepted opinions, and to seek empowerment must be safeguarded.

Patients are not merely recipients of care; they are active participants, courageous explorers, and invaluable contributors to the unfolding story of cancer. Their journey, their voice, and their relentless pursuit of understanding and hope are the guiding lights in this complex landscape.

To Conclude:

This article is a journey of acquired knowledge, experience, and wisdom—a pathway of thoughts to move forward with. Life’s opportunity is about being open, willing, and realizing your potentials. There is nothing in life, science, or medicine that is not vulnerable to being Knocked off its pedestal of certainty; the only certainty is that there are no certainties, only possibilities. As patients, we must look through the impossible to where can be possible. We must utilize the potential within these possibilities and make them possible. As oncologists, we must support and foster our patient warriors, we must be part of their success as they strive for survival.

Question your truths – Question their truths – Question the truths of obstacles that limit your progress, this will open up a whole new world of possibilities

Until next time think healthy:
Eat light, Move light, Ride within, Ride With Rhythm, Ride for Tomorrow.
Ps Previous IDH1 article that may be of interest to those with this mutational driver.