Over the years I’ve coached many people who were determined to forego conventional cancer care—going against their oncologists’ recommendations, and often countering their partners’ and families’ opinions, too.
In addition to declining the NCCN Guidelines for standard cancer care, some of these clients showed an interest in ‘other options’—those opinions and processes outside standard of care to help inform more personalized anticancer therapeutic approaches. Others simply wished to live out their best lives without intervention.
There are a multitude of motivations for people to refuse the recommendations of their oncologists. Many of these reasons are quite sensible, while other reasons make little practical sense, at least to those looking in from the outside, myself included.
(Note: While I refused standard of care treatment when faced with a debilitating period of leukemia in 2003, today’s pharmaceutical landscape would likely steer me down a different path.)
At the end of the day, we each have the absolute right to accept or refuse any offered and accessible medical therapy . We have one body—and one life. Each mentally competent adult owns their right to their decision.
Discerning The Wise and Why
Choosing to refuse standard cancer care is often based on critical issues such as:
- quality of life concerns related to treatment toxicity and side effects, including those relating to age;
- overall physical, emotional, and/or psychological condition;
- published statistics showing low likelihood for good durable outcomes;
- fear-based: concern over the treatment itself, including the often deleterious treatment side effects, and worries and anxiety related to long-term outcomes;
- end-stage disease progression after multiple lines of therapy have been close to exhausted.
Note: standard of care protocols can be quite effective for early-stage, non-complex diagnoses. It’s typically latter-stage disease that follows one or more recurrences—and specifically metastatic disease—when standard guideline-driven treatment can fall short for certain cancer types.
Misinformation = Delay and Worse Outcomes
From my experience, the single most problematic cause of standard of care refusal is widely available misinformation: the driving drumbeat of ‘summits’ and conspiracy theorists delivering the so-called truth about cancer.
I’ve seen too many clients who, before finding me, have invested their time, energy—and in many cases limited resources—in various areas and with a plethora of activities that do not positively impact their situation.
Worse, I’ve seen too many folks waste valuable time in futile ‘treatment’ attempts while their original malignant challenge morphs from highly treatable, or in some cases truly ‘curable’—and I don’t use this word lightly—to latter stage and metastatic disease that is, sadly, all too often incurable.
Though it is also important to note that, with few exceptions, a mad dash rush toward treatment is not necessary, it’s more critical to find the most appropriate treatment for your particular set of circumstances.
Do Not Ignore Quality Of Life
Misinformation can have a negative impact on quality of life. Standard of care recommendations absolutely need to be examined for each ‘unique’ case. Sure, for specific malignancies and situations, standard treatment—based on the statistics—does not appreciably add to overall survival. Or there is a small advantage, measured in weeks or a couple months, but with diminished quality of life and/or a higher financial toll. For many, ‘less (treatment) is more’, and quality of life always trumps treatment or over-treatment.
Educated Patients = Smarter Decisions
Clinical Studies and Endpoints:
Anticancer drugs are studied using endpoints. There are surrogate endpoints and a primary endpoint.
Surrogate endpoints include:
- Objective response rate: subjective measurement of impact of treatment on tumor size
- Progression-free survival: period of time between treatment that disease is stable
- Disease-free survival: period of time between treatment that disease is undetectable (NED: no evidence of disease) or in complete remission
- Overall survival: period of time a person lives from the start of a clinical trial to death from any cause
Clinical endpoints are critical to understand because, while surrogate endpoints are used for initial FDA drug approvals, it is the primary endpoint of overall survival that matters most over the course of investigating the efficacy of a drug.
Informed Decisions = Increased Positive Outcomes
When faced with challenging prognoses, relapses (refractory), and latter-stage disease, there is the opportunity to intelligently seek an advantage—gain an edge—by considering one or more options within the provided framework of care.
It is imperative to set realistic goals that fit one’s unique priorities and situation because we are each an N-of-1—a study of one. Each person hosting a malignant disease is as unique as each unique disease a person is hosting.
A proactive, thorough assessment and treatment decision-making process should consider a combination of the following:
- In addition to working with a community oncologist—and especially if you are hosting an advanced stage disease—seek out multiple opinions from leading academic clinician-investigators with specific expertise for your diagnosis.
- Gain a thorough understanding of standard care options, via the NCCN Guidelines. (The same resource your oncologist refers to.)
- Access the medical literature using PubMed to identify most current, published studies specific to the cancer type (including all known key genetics/drivers/characteristics) you are researching.
- Explore additional paths, or combinations of paths, which may be viable for your particular circumstance, including:
- Clinical trials
- (Massive Bio matches patients with trials)
- Experimental cancer therapy
- Off-label/repurposed anticancer pharmaceutical agents
- Off-label/repurposed pharmaceuticals (typically low-cost generic drugs shown to have anticancer effects)
- Compassionate Use
- AI-driven second opinions
- Drug (and natural agents, as applicable) sensitivity testing
- Integrative oncology modalities, natural products—oral and infused—and sensible lifestyle approaches in addition to standard care to reduce deleterious side effects, increase quality of life, and potentially positively impact cancer burden and survival
- Clinical trials
(Note: The various above-listed companies and links are for informational purposes only, and do not constitute recommendations or endorsement by Glenn Sabin.)
Getting Support from Your Oncologist
If you are leaning away from NCCN guidelines, it is critical to get some level of buy-in from your oncology team. You may have chosen a different course than was recommended at the community oncology care level but if you do a good job explaining your decision-making process, including the science and all that has informed this process, then your oncologist, ideally, will be open-minded to support your desired treatment protocol and the necessary testing to see if it’s working.
If mutual understanding and respect can be established, your oncologist should be amenable to advocating for you to secure coverage for various therapeutics and diagnostic testing prior to, during, and after treatment. This support should extend to your interest in exploring second or third academic opinions and clinical trials.
Monitor, Test, Measure, Adjust… Repeat.
Regardless of the path you take—standard cancer care, standard care combined with ‘other’ treatment options outside the published guidelines, solely alternative options, or refusal of all treatment—it is crucial to get relevant testing done on a schedule. This may include blood draws, imaging, bone marrow biopsies, and physical exams.
If you are charting a different course than what is deemed standard, you must consider asking your medical team to test more aggressively and frequently than what is typically clinically indicated. This way, you can better monitor and measure the impact of your chosen treatment approach using the same aforementioned surrogate endpoints: objective response rate and progression-free survival.
If you have chosen a different approach to treatment decision-making, what could be smarter than testing, measuring, and quickly adjusting to these findings? That was a rhetorical question.
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