In particularly stressful times during a new cancer diagnosis and patient journey, there is often the proclivity—of the patient and/or their loved ones—to immediately align with, and pledge loyalty to, a specific medical mindset.
Unfortunately, acute situations, seemingly requiring speedy decision-making from those not fully knowledgeable on complex issues, cause many only to ‘skim’ through the mountains of information at hand.
In the race for accurate information to inform expeditious decision-making, it is truly challenging to sort fact from fiction, or helpful versus unhelpful voices, and stay open-minded, all the while not getting sucked into misinformation or worse, such as conspiracy stories.
No truer is this ‘vital skill of sorting’ required than in the field of cancer. Post diagnosis truly becomes a place where fear overwhelms faculty, and panic undermines clarity of mind. This is when and why confusion is generated and there seems to be a compulsion to draw lines in the sand.
The thing is, in addition to gaining essential insight and clear recommendations from their oncologist and additional medical team members, patients (and caregivers) must take the time to do their own review.
A Single Allegiance Not Required
The art and science of reconciliation involves connecting lines of thought or systems in order to be compatible with each other.
I don’t fit neatly into a one-size-fits-all medical dogma camp. This means that folks who only sample what I share are left wondering where I pitch my tent.
My unique personal experience, and purview of cancer, places me in an odd spot of exclusively advocating neither alternative, nor integrative, nor conventional medicine.
Proactivity and empowerment begins with getting to know who may be worth following, reading, and reaching out to.
When prompted for an elevator-pitch-length ideology:
- I do not get caught up in any one, exclusive cancer ideology or dogma.
- I am a fierce advocate of using personalized, evidence-based treatment for the tumor and host.
- I advocate for sensible practices, often in combination, be they conventional therapies, integrative modalities focused on lifestyle change, experimental drugs, or smart palliative approaches that focus on high-quality of life over aggressive treatment.
- I am most helpful to those who have some notion of ‘where I’ve been’ and ‘where I am’; otherwise I remain misunderstood. Some have shared that I can be a beacon of light for those folks who invest the time to ‘get me’.
(Okay, it was a long elevator ride—a Manhattan skyscraper—lobby to penthouse.)
A World of Instant Gratification
People are busy. I get that. But, the fact is, people today are ‘snacking’ their content—critics included. Folks move between devices, skim an article here, a podcast there, a short video on Facebook, while simultaneous clicking unrelated content.
The challenge I face in putting myself out there, via posts, talks, and my book n of 1, is that my viewpoints require a deeper commitment from each reader—consumer of my content—than is usual for the average person (this includes cancer patients and physicians).
For me, this is where the art of the science of reconciliation of a system of care, versus a standard of treatment, comes into play. And how that can serve you.
Where I Come From
Neither an oncology conventionalist, in my thinking, nor a proponent of alternative cancer care, I find the worst of both approaches, in their respective silos, quite unsettling.
I have complied and continue to create a body of work that very personally espouses my thoughts on when alternative cancer kills, why I refused chemotherapy, and how lifestyle is no guarantee against cancer.
In describing the anatomy of my book n of 1, I proffer what went into getting my story out to the public, and why it took five painstaking years to be birthed. My book had to be scientifically accurate, and descriptive, not prescriptive. It needed to be conjecture-free; it simply had to tell the story accurately.
Quick Critics and Other Evaluators
Many people believe the so-called gospel of non-cancer-experts when it comes to all things alternative cancer care. Others have a hard time reconciling the words of those claiming to know the truth about cancer with the real and complex facts that are best accessed from the highest quality medical sources.
Though I have never shared this before, I am putting it out here and now:
Some time ago I set into motion a post, Behind the Decisions: The Anatomy of n of 1, after reading a particularly negative review of my book. The critic was a leading opponent of integrative medicine and integrative oncology—a surgical oncologist at a mid-level academic institution. He went to great lengths to tear my story apart—and admitted to having not even read the book. Reading only the published case report, he decided he had enough information.
We are all subject to critique. Ideally, all critics are well-versed on the whole position of those whom they are critiquing. Alas, this is often not the case. Sometimes ulterior motives and deep-rooted dogma are simply irreversible, even with hard facts in-hand. This holds true to some professional medical researchers.
Open Minds Produce Courageous Investigators
Top scientists, the leading lights of cancer research, became courageous investigators and achieved their rise driven by their insatiable curiosity.
In this camp sits my personal oncologist, Lee M. Nadler, MD. Nadler runs a top research lab, one if not the highest funded by the National Cancer Institute. He is also dean of clinical and translational research at Harvard Medical School.
Nadler is curious. So much so that when I achieved two remarkable clinical outcomes, without conventional therapy, for an incurable disease (a disease to which he had dedicated his professional life for decades), he paid full attention to all that I did to support my health. I was not summarily excused as an ‘outlier’, or as being ‘very lucky’. He knew there was something very real at hand.
Most cancer patients and survivors are not in the medical field. Therefore they lack the experience to properly navigate PubMed to read the science that supports their oncologist’s treatment recommendations. (Note: Most treatment plans are based on NCCN clinical guidelines; ask your physician to print these out, and the supporting studies that back their recommendations.)
Help Me To Help You
Every day, people from around the world who have read n of 1 or my blog contact me. Many express how my story affected their lives, how they have become empowered, and how they are actively implementing important lifestyle changes.
Most are pursuing an integrative approach to the management of their cancer. They may be in treatment, have stable disease, or be in remission; all are looking to ensure long-term survival and to become their healthiest selves.
Some share deep details of their cancer journeys, and how they are approaching their care. Others have questions about private coaching.
I also consistently hear from folks who recently learned about my story. They have not yet read the book, or are just digging in. They have read the short narrative on my site, or have come across an interview; or a book where my story is included; maybe a friend or colleague pointed them in my direction. Some have not read any of my blog posts.
I spend a great deal of time explaining—at times even defending—my unique perspective to those who have only taken a cursory review of my story.
At the top of my wish list sits the desire for others to invest and meaningfully engage in understanding my perspective so that I can ultimately explain less about what I believe and share more about opportunities, survivorship, and a healthier quality of life that are well within the reach of many.
My stance, in short:
- I do not advocate a sole alternative cancer treatment approach in lieu of the best of modern cancer diagnostics, prognostics and, as necessary, treatment under the most pragmatic process. (Yes, there are a few exceptions to this rule, which I will discuss in future posts.)
- I do not believe in cancer industrial complex conspiracies.
- I am not anti-chemo, anti-drug, or categorically anti-pharma.
Heartbreaking Instead Of Healing
I regularly hear devastating stories directly from individuals who chose juicing or dietary supplements (alternative cancer care) in lieu of standard cancer care, only to have their highly ‘curable’ stage I or II disease progress to stage IV—metastatic disease that is most challenging and most often incurable.
They tell me about their spouses and young families that they fear they will leave behind prematurely. They realize they have made a grave mistake. It is gut-wrenching to hear.
Thorough investigation and proactive research could have prevented such an erroneous, catastrophic diversion.
Survivors and caretakers regularly share their traumatic stories of misdiagnosis, poor pain management, reactions to agents that result in prematurely stopping treatment, sometimes without solid alternatives and solutions.
I also hear about over-treatment, including aggressive treatment in older, frailer individuals who should only be receiving the most targeted conventional treatment with proven benefit: those with the least potential side effects to allow focused attention on quality of life.
Success Through Knowledge
My relationships with the conventional oncology community are just as important as those within the field of integrative oncology.
I firmly believe that the best cancer care approaches to come—so-called ‘individualized’ precision medicine—and the most powerful advances toward comprehensive cancer prevention, will only be realized with true inter-disciplinarian respect, communication and collaboration.
Thank you for being with me on this important journey of discovery, proactivity, and empowerment. My mind remains open and ever-curious. Like you, each day I learn more. Ultimately I embrace and incorporate, rather than resist and separate, the so-called dichotomy of choosing one rigid path over the other.
Image credit: mkabakov/bigstockphoto.com