Our Family’s Cancer Story

We were sitting in a therapist’s office with our four-year-old son. Something was up with Raffi, and we needed to get a handle on it. Over the previous few months, he’d become increasingly withdrawn and unable to focus. He could no longer tolerate even a few minutes away from my side. To us and to the professionals who evaluated him, it looked like a classic case of attachment disorder. We’d adopted Raffi as a toddler, and the diagnosis seemed to fit. We were hopeful that with the therapist’s help we’d get through this latest wrinkle.

Then I got the call. I’d forgotten to turn off my cell phone when our therapy session began. I glanced at the caller ID and saw that it was Raffi’s pediatrician. Raffi’s recent eye exam had uncovered a condition known as optic nerve pallor. The most likely cause was poor nutrition; this made sense given that Raffi was malnourished and suffering from rickets when we adopted him. But quick on the heels of this discovery, Raffi had experienced a trio of brief but disabling headaches. Erring on the side of caution, the pediatrician had ordered an MRI to rule out any brain abnormalities. The plan: If there was a problem, the radiologist would alert the pediatrician right away, but if the scan was normal, we’d get the report the following day. It had now been more than 24 hours since Raffi’s scan, so of course I expected to hear “all clear.” Instead, our world was hit with an atomic blast as we listened to the news: “I’m so sorry to tell you this. Raffi has a brain tumor. I can’t believe the radiologist didn’t call me right away. But listen carefully: This tumor is very large, and you need to get him to the children’s hospital—right now. I called ahead. They’re waiting for you.” That ended our therapy session and the world as we knew it. Before we even had time to process what we’d heard, we were on the road, driving 16 hours through a blizzard. By the next afternoon our son was in the hospital undergoing a biopsy. We were handed the pathology report on Christmas Eve and sent home for the holiday.

Of course we asked: Why Raffi? Why our child?

Sometimes there’s an obvious answer to this agonizing question. Did you work with asbestos? Then mesothelioma should come as no surprise. Lifelong smoker? Of course that raises the risk of respiratory disease, including cancer. But what if you’ve never smoked a cigarette in your life and you learn you have stage IV lung cancer? Whatever brought you to this point, your life now depends on how you move forward.

In truth, your current situation is most likely linked to the convergence of many events: a perfect storm that reflects a life spent in a complex and challenging environment. Your past exposure to toxins and your choice of nutrients have initiated changes in your body as well as changes in downstream cellular activities (such as signaling pathways) that impact your overall health. Yet there is a huge and as-yet-unpredictable variation in any individual’s response to the sum total of their experience. Yes, genetic risk factors can be passed down from parent to child, but savvy researchers are just beginning to wake up to what integrative health care practitioners already know: Your health is inextricably tied to whether the interaction of genes with the environment helps maintain balance or, instead, tips the scale toward disease. Integrative practitioners also believe that you can commit to meaningful changes in diet and lifestyle well beyond the mainstream mantras “eat a balanced diet” and “move more.”

Epigenetics

Epigenetics, a subspecialty within the field of genetics, is the study of how our environment, including the foods that we choose to take into our bodies, can change the expression of our genes. Cancer researchers have discovered a myriad of cellular proteins that behave badly when stressors, such as reactive oxygen species (called ROS), are produced in amounts that damage cellular signaling, either by increasing activity in pathways associated with cancer progression or by inhibiting pathways associated with gene repair and cellular health. Pharmaceutical companies and the institutions they support are focused on developing profitable new drugs that inhibit discrete cancer progression pathways. The drawback: Altering signals in one pathway at a time without addressing the underlying problem is akin to trying to fix a wobbly table by sawing away at the legs instead of recognizing that the floor is uneven.

It’s increasingly clear that diet plays a huge role in certain cancers. Researchers have known for years that excess weight raises the risk of certain cancers (including colon, breast, and prostate) and that the incidence of these cancers increases as we age. Why do these diseases pick up speed as we grow older? Most theories assume that the failure to clear or repair pre-cancerous cells is just another downstream effect of aging. But there’s another theory—the metabolic theory of disease. Metabolic theory, the focus of this book, shines a light on the growing body of evidence pointing to the three “I’s” (inflammation, insulin resistance, and immune system failure) as the underlying causes of the downward spiral that leads to what we generally accept as diseases of aging—cancer included.

Team Work - Get In The Game

Cancer treatment needs a team. But what if you find that you’re not even offered a spot on the bench? Instead, you, the patient, are expected to be a spectator: Sit in the bleachers and root for your team, but don’t you dare step onto the field! Even the language used in conventional medicine reinforces the expectation that you’ll receive treatment as a passive bystander. By all means, if you’ve broken a bone, stand back and let the pros do their work. But if you’ve been handed a cancer diagnosis, you have the right to be on that field.

Make no mistake. You’re about to jump into a rough game without a referee to ensure that everyone plays by the rules. In fact, there are no rules. If you’ve spent any time researching your cancer on the internet (and I’ll bet you have), then you already know how quickly that playing field turns into a minefield of conflicting ideas, misguided advice, and outright quackery.

But you now hold in your hands a playbook that lays out the moves and strategies that will help you through the challenges ahead. As you’ll soon see, ketogenic metabolic therapy is one of the most powerful strategies you can launch in your quest to manage your cancer. (Note that I say “manage,” not “cure”: Most cancers—even those with decent survival rates—reemerge at some point in the future driven by a small population of cells that evade treatment and capitalize on mutations that allow them to survive, thrive, and spread. Or you may find yourself with an entirely new but closely related cancer, often a side effect of treatments such as chemo and radiation that damage normal cells along with diseased ones. That’s why you need a game plan that works for a lifetime!) Finding the ketogenic diet is the easy part. Acquiring the tools and knowledge to implement these changes, and others, requires commitment and effort. This book is a good first step.

The Importance of Language

Language is powerful. In medicine, it shapes thoughts and actions. If you use the language of war for your illness, as in “fighting” cancer, then expect significant casualties, with both sides contained in a single body—your body. Focus instead on “winning” the game. In doing so, you are more likely to choose actions that protect you, the most valuable player. That said, if it suits you to use the language of war, think in terms of developing the most effective maneuvers and strategies, those that protect your most valuable assets over a lifetime. In other words, focus your attention on bringing your body back into the best balance possible given the strengths and limitations of your current life situation.

Language also reflects beliefs: Patients (or should I say “patience”?) are expected to receive treatment passively: “Doctor knows best.” You are seldom encouraged to ask questions or share what you’re learning. Meditation guru and writer Jon Kabat-Zinn illustrates a perfect example of the wall that exists between doctors and patients in describing a program he developed to encourage medical students to deepen communication with the people they treat. He instructed the students to close their sessions with patients by asking, “Is there anything else you would like to tell me?” When he reviewed the videotapes of these sessions, Kabat-Zinn noted with amusement that the students said the words as they were told, but were visibly shaking their heads “no” at the same time. Nothing subtle there about their body language!1

The language of medicine also places the utmost importance on doctors’ training, not their education. Physicians hold fast to the tenets of this training even when the prognosis is poor or it’s clear that the patient is not getting better. For a doctor’s view of training versus education, read Honest Medicine by Julia Schopick (www.honestmedicine.com). In her book, Julia includes a chapter written by Burt Berkson, MD, MS, PhD, who reveals the striking differences between his graduate school education, which encouraged critical thinking and participation in learning, and his medical school training, which enforced lockstep compliance with prevailing practice guidelines.2 What will it take to remodel medicine’s current disease management mindset, which relies almost entirely on drugs or procedures to treat each discrete symptom?

The Current Standard of Care

There is no question that the current standard of care in cancer treatment falls far short of the goal of a cure and that many of the most commonly accepted treatment protocols seriously erode quality of life. So how can we improve this picture?

The pharmaceutical companies’ approach is to spend billions of dollars in bringing new and very profitable drugs to market, often with the bar for success set very low. For example, in the treatment of extremely aggressive cancers, such as pancreatic or brain cancer, a new drug needs to improve overall survival by only a few months in order to be heralded (and marketed) as a “significant advance” over prior therapies, with little attention given to the huge sacrifices to quality of life that are often a part of this hellish bargain. You’ve seen those flashy ads—slick direct-to-consumer appeals that lead with an upbeat 10-second pitch for you to “talk to your doctor” about a new drug that offers the hope of living longer, while the remaining 20 seconds are devoted to a breathless reading of potential side effects, including death.

At the institutional level (i.e., cancer centers and university hospitals), oncology teams made up of surgeons and radiation and medical oncologists may use data from genetic testing of the tumor tissue combined with such diagnostics as pathology reports and circulating cancer biomarker levels, to decide on a protocol that they feel is most likely to achieve a response. That sounds great on the surface, but let’s look at what it really means to you personally. In a common scenario, the statistics may suggest that 30 percent of people with characteristics similar to yours will have a clinically significant response to a treatment. Of course, this is better than outright trial and error, but if you are among the 70 percent of people who are not “responders,” you’ve just endured a treatment that weakened your system while leaving the stronger and more aggressive cancer cells free to grow and proliferate.

For a person with cancer, this shotgun approach may be dressed up as personalized medicine or a targeted therapy. In fact, these protocols are often simply your oncologist’s educated guess as to what therapy will best address your disease and are based on medical algorithms that are still years away from accounting for the vast array of variations between one person and the next. Understand, too, that personal bias is also likely to influence your team’s recommendations. For example, if the medical oncologist has a strong institutional presence and an established reputation, then his or her treatment recommendations may take precedence over those of less influential but equally knowledgeable members of the team.

The current Western medical paradigm pays lip service to the importance of shared decision-making, but many practitioners in mainstream medicine have yet to make significant headway toward providing truly patient-centered care. In fact, the chasm between doctors and patients threatens to grow even wider.

Although some of this distancing is due to time and financial limitations beyond the providers’ control, much of it can be attributed to increasing specialization and the challenges inherent in communicating ever more complex information.

Yes, it’s great to be under the care of the highest rated doctors at the highest rated centers specializing in your particular disease, but this may come at a high price if it squelches meaningful communication with the people who hold your life in their hands. Specialists lose, too, if they dismiss the notion that there is anything to learn from the people they serve.

Let me be clear: It is not my intent to disparage or denigrate the dedicated practitioners you will find in most conventional care settings. They most certainly want to provide you with the best care possible. The issue at hand is the lack of funding for research, including clinical trials, that will ultimately prove what effect the ketogenic diet and other metabolic therapies have on a disease that is unfortunately viewed by many as simply “bad luck.”

Alternative and Adjuvant Therapies

Given the failures and limitations in the standard of care, especially in late-stage or aggressive cancers, why don’t low- or no-cost alternative and adjuvant (add-on) therapies come up in the conversations you have with your oncologist? And if you do bring them up, why are they so often dismissed out of hand as having “no evidence,” despite what you might have read? You may believe that this is a conspiracy; that your oncologist is recommending a particular treatment due to personal gain, such as a kickback from a drug company. Unfortunately, while there may be those in the profession who are guilty of this, the vast majority of oncologists really are offering you what they believe to be the best care. The problem is that on Day One of their medical school training, they were handed a set of glasses with a filter that allows them to see only the particular style of “evidence-based medicine” approved by the people in charge of their studies. When these doctors then move into clinical practice, they are bound by convention to stick to these evidence-based guidelines in the treatment of cancer, almost as if one hand was tied behind their backs. Addressing the underlying issues that may heal their primary goal.

Given this scenario “First, do no harm” may seem contradictory considering the collateral damage inflicted by most of the current conventional therapies. There would be so much value if the best of both worlds could be combined: your oncologist’s expertise and institutional knowledge along with adjunctive and alternative therapies that offer immediate benefits, such as a healthier immune system and improved quality of life. Simply put, however, adjunct therapies don’t yet have a cheerleading section in conventional care, even if they do show some grounding in science.

Consider the ketogenic diet. Despite the best efforts of its detractors, diet proponents (myself included) have been able to connect the dots between patient-based evidence, usually gathered from anecdotal information, and “preclinical data,” the results of studies using animal models of disease. (In the development of pharmaceuticals, promising preclinical data is used to support moving to clinical trials with humans.) Fortunately, the ketogenic diet is available to all because, unlike conventional care, access isn’t dependent on health insurance reimbursement or one’s ability to shoulder huge out-of-pocket costs. We eat to live. The choice is in what we decide to eat.

The medical community doesn’t see it this way. They want indisputable evidence from human clinical trials, choosing to ignore even the huge body of data supporting the ketogenic diet gleaned from the decades-long history of implementation in people with epilepsy. In fact, there is scientific evidence that, as used in epilepsy therapy, the diet is safe, feasible, and efficacious.3,4,5 Can’t we therefore speculate that the same safety and feasibility profile may also apply to other uses of this diet? There is already sound evidence that it does apply in cancer.6,7 Nevertheless, you must first determine whether the diet is appropriate for your situation. Contact me and I’ll send you my list of exclusions.

Impassioned researchers and clinicians have begun the process of running the ketogenic diet through the gauntlet of clinical trials that are needed to eventually move this therapy into evidence-based practice in cancer. Why, then, am I not content with waiting patiently for this to unfold?

People with cancer don’t have the luxury of time!

Resources

  1. Kabat-Zinn J. Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life. 10th ed. New York, NY: Hyperion; 1994:189–190.

  2. Schopick J. Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases, Including Multiple Sclerosis, Epilepsy, Liver Disease, Lupus, Rheumatoid Arthritis, and Other Diseases. Oak Park, IL: Innovative Health Pub; 2011.

  3. Freeman JM, Vining EP, Kossoff EH, et al. A blinded, crossover study of the efficacy of the ketogenic diet. Epilepsia. 50(2), 322–325. doi:10.1111/j.1528-1167.2008.01740.x.

  4. Cervenka MC, Henry BJ, Felton EA, et al. Establishing an adult epilepsy diet center: experience, efficacy and challenges. Epilepsy Behav. 2016;58:61–68. doi:10.1016/j.yebeh.2016.02.038.

  5. Lambrechts DAJE, de Kinderen RJA, Vles JSH, et al. A randomized controlled trial of the ketogenic diet in refractory childhood epilepsy. Acta Neurologica Scandinavica. 2016;135(2):231–239. doi:10.1111/ane.12592.

  6. Fine EJ, Segal-Isaacson CJ, Feinman RD, et al. Targeting insulin inhibition as a metabolic therapy in advanced cancer: a pilot safety and feasibility dietary trial in 10 patients. Nutrition. 2012;28(10):1028–1035. doi:10.1016/j.nut.2012.05.001.

  7. Klement RJ, Kämmerer U. Is there a role for carbohydrate restriction in the treatment and prevention of cancer? Nutr Metab (Lond). 2011;8:75. doi:10.1201/b16308-18.