I have been living with stage IV lung cancer for three years, not because I have the disease, but because my husband does.
I have been living with stage IV lung cancer for three years, not because I have the disease, but because my husband does. As with many things in life, I wish I knew then what I know now, but life doesn’t work that way.
What I do know now is that we live in a zip code that is the equivalent of a winning lottery ticket. Most people are not so fortunate. My husband’s survival and excellent care are linked to our proximity to a premier medical hub with outstanding teaching institutions and specialists in the diagnosis and treatment of NSCLC. Because of our oncologist’s knowledge and expertise, my husband has received molecular testing, participated in a clinical trial, undergone cyberknife surgery for brain mets, etc.
I now also know that we live in an area with nonprofit organizations that provide critical support in a nonmedical setting to the patient—caregiver dyad. However, without an internet search, I would not know this.
To what extent should medical professionals know about nonprofit resources? Is it the “job” of the oncology team to inform patients about “nonmedical” aspects of their disease? I think it is. Sure, the internet has erased time and distance giving 24/7 access to resources that can be life-saving, educational and empowering (but can also be overwhelming, hard to understand and not based on scientific fact).
When you initially hear the words, “You have cancer,” the world is not wide; rather, your world shrinks to one small room. At that moment, the oncology professionals in the room have a captive audience looking to them not only for important medical info, but info about how to cope with the day-to-day reality of living with a critical disease and the chaos this diagnosis can visit on both patient and caregiver.
The patient and caregiver also need hope, which cannot be outsourced to an internet search on the information highway. Hope needs to start on day one of the diagnosis with knowledge—both medical and nonmedical. In my experience, nonprofit organizations are some of the best practitioners of hope.
What would doctors and nurses discover if they went to an AAA office and got a map of their local area? If they drew a circle on a map encompassing 25 miles from where they stood, they would see what, if any, nonprofit resources exist in their own neighborhood that might help patients with the challenges of living with a fatal disease.
In our case, the Bonnie J. Addario Lung Cancer Foundation (ALCF), a well-established and nationally respected organization committed to patient education, advocacy, and research initiatives, was a 10-minute drive from our home, the hospital, and our doctor, but I only discovered this on my own and not because any person on our medical team told us about its existence in our own backyard.
Evy and Neil Schiffman
Should someone (physician? nurse? social worker?) have told us about this organization that provides free patient programs, a patient education handbook (aptly called “Navigating Lung Cancer, 3600 of Hope”), a monthly support group/speaker series (also aptly named as the “Bringing Hope Home” Living Room), and many other services to help families navigate the labyrinthine world of cancer? Yes.
I realize that many people receive treatment in areas where there are no resources in their own backyard and where their doctor is not a specialist in any one cancer type—lung, breast, prostate, colon, whatever.
If this is the case, it is even more critical and incumbent on medical professionals to educate themselves about high-quality, professional nonprofit resources that exist throughout the United States (even if it is in a zip code a thousand miles away) and to share this information with families.
Doctors every day and everywhere sit with patients and caregivers in a small room and deliver the news, “You have cancer.” I advocate that doctors and nurses also offer hope by delivering the news that there are nonprofit resources that today—because of technology—can indeed be in every patient’s backyard.
Yes, I know that a doctor’s visit is a limited encounter, and physicians can’t be expected to do everything. However, medical professionals know in advance if they are going to be saying the words, “You have cancer.” The appointment at which a doctor delivers this news cannot be a limited, clock-driven encounter, because what is said after these three words will profoundly affect how the patient and caregiver live with the diagnosis, the quality of their daily life, and ultimately, patient survival.
Since my husband’s diagnosis I have learned that cancer is not one disease. I have also learned that lung cancer kills more people around the world every year than the other top cancer killers combined. For this reason I wish that every doctor who delivers a diagnosis of lung cancer to a patient would also hand that patient an ALCF lung cancer handbook or tell them how to download it for free electronically (www.lungcancerfoundation.org) or as a mobile APP. I also wish that oncologists nationally and internationally would tell their patients and caregivers how to participate remotely in ALCF’s “Bringing Hope Home” Living Room.
When the oncologist delivers the cancer diagnosis to the patient—caregiver “dyad,” the physician and/or his nurse needs to equip them with a “triad” of knowledge: (1) all pertinent medical information and treatment options (i.e. molecular testing, clinical trial info, tumor board review, etc) explained in a way that is understandable, compassionate, personalized and appropriate to the patient’s specific cancer diagnosis; (2) information about specific nonprofit organizations (both in the patient’s “hood” and beyond) offering critical resources (i.e. support groups, patient education handbook, complementary alternative treatment options, insurance navigation, etc.); AND (3) hope.
HOPE—combined with the expertise of medical professionals and the resources of nonprofit organizations—is the new four-letter word, one that can and must be used all of the time, especially in the doctor’s office. It is powerful medicine that must be included in every patient’s treatment plan.
Evy Schiffman is a retired high school English teacher and the former director of marketing and communications at an arts education nonprofit organization in Mountain View, California. She and her husband Neil (diagnosed with stage IV lung cancer in 2011) currently devote much of their time to actively supporting advocacy, education, and fundraising/marketing initiatives of the Bonnie J. Addario Lung Cancer Foundation (ALCF).