The Age of the Empowered Cancer Patient

Perhaps you noticed a shift in cancer care when you saw a poster advertising an ‘anticancer’ cooking demo, or a yoga or meditation class at your local hospital or cancer clinic. Maybe you’ll attend then recreate the recipe, or employ a mind-body practice as an active participant in your healing—or to help avoid disease altogether.

Welcome to the age of the empowered cancer patient. Many tools, as well as access to high quality information and top physician scientists, are available for cancer patients willing and able to invest themselves in their own health journey.

The invitation to actively participate in one’s cancer treatment plan can be as local as one’s doctor and as close as a WiFi connection.

Regarding the diagnosis of my ‘incurable’ leukemia: when offered a choice between a potentially curative but experimental bone marrow transplant, versus a new approach called watchful waiting—essentially sitting at the proverbial chess board with an unknown master and waiting for the first move—I had no idea which option to choose.

On the one hand, an aggressive bone marrow transplant option looked promising: the opportunity to potentially beat my cancer into submission with a full-on onslaught.  But the (then) 20% mortality rate accompanying the transplant itself stopped me cold in my tracks.

On the other hand, I felt powerless with the strategy of watching and waiting for the typically slow-growing disease to make its first move. Back in 1991 there were no cytogenetic and other prognostic assays to determine the likely course of chronic lymphocytic leukemia (CLL); no one knew how quickly the disease would progress.

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It was extremely difficult for me, a forward-leaning type A, to watch and wait—and I was determined not to ‘watch and worry’.

I was just 28-years-old and newly married to my childhood sweetheart, Linda.  We had an entire future in front of us.  And there were no curative options as an established standard of care for CLL.

I walked away from the chess master—refused to wait for that first move—and distanced myself from the surgical gowns, then took the path less traveled, though I had to use a machete to find it.

I became my own advocate and incorporated a strategy I later coined as ‘proactive observation’.  When my esteemed oncologists reminded me there was nothing I could do to effectively manage or control my ‘terminal’ cancer—that I should focus on living fully and enjoy time with my new bride—I respected their well-intentioned input, then went to work clearing the path to find pioneers involved in a new branch of complementary therapeutic approaches.

There was no way I was going to discontinue my investigation of what could be possible through the evolving science of modern medicine. I would also pursue other potential healing options unique to my personal course with disease.  So I would become an n of 1.

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Top Cancer Education Resources

Patients today have access to the latest research on their diseases through top online sources like PubMed, American Cancer Society, National Cancer Institute, and American Institute for Cancer Research. There are also a growing number of apps specific to cancer types.

Research and Expanding Roles for Proactive Patients

Margaret Anderson runs the think tank Faster Cures.  In a recent article titled From Passengers to Co-pilots: Patient Roles Expand, which appeared in the journal Science Translational Medicine, Anderson, and co-author K. Kimberly McCleary, said:

“For most of history, patients have been the passive recipients of medical care with little or no role in research. Even as research subjects, patients were not required to give informed consent prior to adoption of the Nuremburg Code in 1947. Since then, patient participation has expanded dramatically, and today, opportunities abound to serve as active partners in defining and prioritizing research questions and solutions. As digital strategist Leonard Kish declared in 2012, ‘If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it’”.

Access to NCI Designated Comprehensive Cancer Centers

Patients who are physically strong enough and have the wherewithal to travel to an NCI Designated Comprehensive Cancer Center (NCICCC) can be examined, diagnosed, and staged by a top clinician scientist for their unique disease. They can then, if appropriate, be treated in their community with a tailored regimen, often informed by the molecular profile of their tumor DNA. Today there are 47 NCICCC locations across the U.S., making it feasible for more patients than ever to access, arguably, some of the brightest clinician scientists for their specific disease types.

Become Knowledgeable About Conventional Care Costs

Patients and caregivers concerned with medical costs can insist on receiving transparent pricing from their insurance provider or Medicare.   An empowered cancer patient will learn that hospital-based care will typically cost more out-of-pocket than being treated by community oncology clinics. Cost comparisons of treatment choices are an absolute, albeit time consuming and hard to navigate reality of the patient’s journey, the medically and financially informed patient having the advantage.

Learn About Integrative Oncology and Lifestyle Medicine

Patients wanting to improve their overall health, immune function, and quality of life can seek out holistic, integrative approaches to complement their conventional oncology management and care. Today, virtually every major academic cancer center and hundreds of private practitioners across medical disciplines offer integrative oncology education and/or clinical services.

Many of these patient-centered services can help reduce or eliminate the uncertain, if not harmful, long-term effects often associated with cancer therapies such as surgery, chemotherapy, and radiation therapy.  Importantly, counseling that addresses the psychological, emotional, and psychosocial needs of patients can also be found, and is often covered by insurance and Medicare.

Integrative Oncology Services Can Often Be Paid Through Insurance

Formerly cash-only (sometimes sparsely supplemented by insurance coverage) cancer support services such as acupuncture, massage therapy, and nutritional consults are now mandated as essential health benefits through state health insurance exchanges.

Section 2706 of the Accountable Care Act states that licensed providers of these services, operating within their scope of practice, when clinically indicated, are to be reimbursed through commercial insurance plans.

(Sadly, as of this writing, Medicare does not cover acupuncture services, even though acupuncture has proven clinically effective and cost-effective for cancer-related fatigue, nausea, and neuropathy pain.)

Free Community Resources and Services

Depending upon where you live, the Cancer Support Community and other standout organizations such as the Wellness House in Hinsdale, Illinois provide an incredible amount of educational and supportive clinical services at no cost to patients.  Invested patients and their caregivers will want to research any and all community-based services specific to cancer survival.

Conclusion

Today, more bona fide resources than ever before are available to empower patients and their families to take a more engaged approach in the management and decision-making affecting their treatment and long-term survivorship.

From the option of getting multiple opinions at major cancer centers to learning about cutting edge therapies, appropriate clinical trials, and smart lifestyle changes, the era of the empowered cancer patient is here, and features YOU.  (tweet this)

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