Trust Challenges in the NET Patient/Doctor Relationship

Maybe you’ve been told you had food poisoning, menopause, or colitis—when you really had cancer? Maybe your treatment in an emergency room caused a carcinoid crisis? Maybe you saw eight doctors over a period of six years before you were diagnosed with a NET? None of these is uncommon if you are a neuroendocrine cancer patient.

And now you don’t trust the health care system so much…

Well, you may not be alone. A new article published in JAMA Oncology explores the topic of trust among NET patients.

“Many patients with NETs sought…basic assistance from their physicians, only to be left to fend for themselves,” wrote author Eric Mou, MD, Stanford Health Care.

NET Cancer: A Poorly Understood Disease

Mou quotes a patient he met at a NorCal CarciNET Community meeting who said, “When you have to educate every physician that you meet, and you realize that you know more about your disease than they do, it makes it so difficult to build trust and confidence in the medical community.”

NorCal CarciNET Community President and NETRF Board Member Josh Mailman assists and advocates for NET patients around the world. “When you are facing a cancer diagnosis it is essential that you be able to put your trust in your doctor and the health system behind them, as you are trusting them with your life.”

Increasing Provider Awareness of NET Cancer

Mailman was part of the group that welcomed Stanford researchers to their community meeting to increase awareness among physicians about NET cancer and the NET patient experience.

Mou and co-authors Lidia Schapira, MD, and Pamela Kunz, MD, send the oncology community a message: “It is imperative that we understand that the inherent differences across the spectrum of malignant neoplasms we encounter should prompt us to tailor our care to each patient’s distinctive experience of their disease.”

Mailman sat down with co-author Pamela Kunz, MD, at NETRF’s Annual Research Symposium to discuss the impact of the article.

Offering NET Cancer Patient Education

“Commonly patients face an uphill battle before getting an accurate diagnosis. If patients are misdiagnosed and misdirected, mistrust may take root and more importantly treatment is delayed,” said NETRF Chief Executive Officer Elyse Gellerman. “We work hard to educate and empower patients in their journey to help them find answers.”

The NET Research Foundation hosts patient and family events across the country during which NET specialists discuss treatment options. The events help to bring patients and specialists together in the same room to narrow the communication gap between patient and provider.“With education, a patient is best equipped to ask the right questions of their care team and to make sure they have the right care team,” said Gellerman.

Hear more about trust in the NET patient/provider relationship in this talk by Theresa Wittenberg, PA, Stanford Health Care, presented at a NETRF patient and family conference. Wittenberg is credited with bringing this issue to the attention of the JAMA Oncology article authors.

Source: Mou E, Schapira L, Kunz P. The Power of Trust. JAMA Oncol. Published online April 26, 2018. doi:10.1001/jamaoncol.2018.0495

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