Great Expectations: The Relationship Between You And Your Oncologist

I’m frequently asked—especially by those who have read my book, n of 1—how I was able to maintain an excellent rapport with my oncologists. After all, I took the road less traveled, pursuing health creation and healing options that were largely not covered in medical school.

I’ve had the same two oncologists (hematologists) for the entire 26 years since my diagnosis of ‘incurable’ leukemia. Those who know me well would tell you that, if I was not completely happy with these vital ties to those professionals, I would have long moved on; the DC metro area has plenty of oncologists.

Though these esteemed experts did not fully understand my interest in integrative oncology—focusing on the ‘host’ (AKA patient) AND the ‘tumors’—they were respectful and curious. Each was aware that my core focus was to become the healthiest cancer patient I could be.

They never discouraged my sensible self-care efforts. They just didn’t think that those things would impact my leukemia at the time of diagnosis. Fair enough.

Yes, they understood the value of healthy diet and regular physical exercise; they, themselves, participated in such a lifestyle. But the core tenets of lifestyle medicine, such as a plant-based ‘unprocessed’ diet, daily exercise, stress reduction techniques, and healthy sleep habits, were not part of my physicians’ cancer patient management toolkit.

Although it would have been more ideal to have the oncologists in my life completely aligned with my belief in the importance of lifestyle changes, I didn’t necessarily need them to be skilled and experienced in these areas. These were top academic oncologists with deep expertise in my particular disease—chronic lymphocytic leukemia (CLL). They were at the top of their game when it came to the biology of CLL.

Put simply, I needed my oncologists to be rock stars of their domain. It would have been wonderful if they had known more about the direct impact of lifestyle on cancer prevention, cancer progression, or cancer remission—lifestyle approaches to managing cancer should be a core part of medical school curriculum, including oncology fellowships—but this is the way it was.

Communication is a Two Way Street

Of course, my conventional oncology team needed to be informed about my dietary supplementation protocol, but mostly in the context of potential contraindications—it was simply a given to inform them about what I was taking in case it interfered with any medications they might prescribe.

Though I routinely provided a long laundry list of the supplements I was on, the bulk of the formulas—those consisting of more than one single agent—were foreign to them. And they were not about to invest the time and energy to do a deep-dive exploration.

I am regularly told that I’m the exception, not the rule, when working with oncologists. My experience had been one of mutual respect and openness.

Even when I refused chemotherapy in 2003, we talked through it and agreed to continue working together. Actually, our relationship grew during this period as I increased the monitoring of my disease, going into the clinic for labs twice per week for a stretch of time.

Times Change

It would be 17 years after the onset of disease before I started working with my first integrative oncology physician. Prior to that I learned all I could by constantly reading, and through working with a pair of nutritional pharmacologists (trained pharmacists who are also clinical nutritionists), who also mentored me early on around lifestyle choices.

Having access to today’s internet, back in 1991, and knowing how to differentiate between reputable sources of information and all the quackery, would have been hugely helpful.

Twenty-six years later my two original oncologists remain active and healthy through their knowledge of overall wellness. Both work within an NCI-designated comprehensive cancer center.

My Harvard oncologist remains one of the nation’s largest NCI-funded cancer researchers. The latest trials and published literature, the drug pipeline, evolving frontline treatment therapies, comprise a staggering amount for physicians to keep up with. But this is what leading academic oncologists do. And all oncologists have access to clinical guidelines to inform their decision-making process.

Quality testing—labs, prognostication assays, imaging, pathology. Check, check and check. A top cancer center has the tools, processes, and expertise to properly diagnose, stage, and monitor the course of your disease.

Your Proactive Role: Due Diligence and Collaboration

Find the most skilled, compassionate, and open-minded oncologist you can. If this person is not an integrative oncologist don’t sweat it —there are still too few, but the field is growing quickly. Locate other experts to round out your integrative medical team: a health creation cooperative.

Project manage your journey. Let your oncologist know what you are doing. Include an information pipeline so that your entire team is kept aware of your status.

Be open and respectful, and your doc should reciprocate. If she is supportive of the healthy behavior I’ve mentioned above—which is supported by NCI and American Cancer Society as intelligent ways to prevent cancer—she will definitely ‘get it’.

Bottom line: share, express yourself through thorough and succinct communication, and be courteous. Expect the same from your doctor. If your oncologist doesn’t fully support your goal to be at the center of your own cancer journey, or you feel your oncologist is not respectful of your role as ‘health creation’ lead, then find another as soon as possible.

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