Judy, 71, a long-time nurse, never felt sick in the weeks and months leading up to her lung cancer diagnosis. It was only persistent shortness of breath—and the urging of her husband—that convinced her to schedule an appointment with her doctor.

When the non-smoker found out she had both a pulmonary embolism and a mass on her chest, she couldn’t believe the news. Stage III cancer would require radiation and chemotherapy, a combination that, having worked in health care for many years, she knew could ravage patients’ lives before saving them. Three weeks later, Judy went into denial when doctors also found cancerous cells in fluid accumulating around her heart. The new information led Shanthi Sivendran, MD, an oncologist at Lancaster General Health, to escalate Judy’s diagnosis to Stage IV.

“That was extremely traumatic for me,” Judy remembers, four years later. “I had the knowledge of what it was and what it meant, but to comprehend it and make it be my diagnosis, I couldn’t adjust to it emotionally. I think your brain sometimes shuts down a bit because of everything.”

Judy’s experience is sadly not unique.  In a recent study of 208 patients at the Ann B. Barshinger Cancer Institute at LG Health, nearly half did not know their stage of cancer. One in four patients were unsure whether they were free of cancer or in remission.

The study’s results were published in July in the American Society of Clinical Oncology’s Journal of Oncology Practice. The review established a baseline of patient comprehension and identifies several groups more likely to need extra conversation or support at initial diagnosis, throughout survivorship, and in incurable disease.

Patients who incorrectly identified their stage were more likely to be male, over age 65, and diagnosed with Stage I-III cancers (potentially curable). They were also more likely to earn less than $60,000 annually and have less education, said Sivendran, who was the lead author on the study.

“It’s said that when patients get a cancer diagnosis, they remember 10 percent of what we tell them on the initial day,” Sivendran said. “You drop the word ‘Cancer,’ and the brain is fixated on that word. It doesn’t matter, all the other things you’re saying around it, oftentimes patients describe it as being stuck at ‘You just told me I have cancer.’”

Sivendran and other members of the Lancaster General Health Palliative Oncology Team are working to improve how cancer patients understand their diagnoses in the hopes that a better understanding will lead to better outcomes.

Understanding those variables—and the fact that even well-educated health professionals like Judy can experience a kind of shock—underscores the need to have ongoing conversations around stage and status of the cancer, potential treatments and treatment goals, Sivendran said.

“Stage, for many cancers, is a reflection of curability of the disease,” Sivendran said, noting the added importance of a live physician’s advice with the advent of “Dr. Google.” “We want to give patients the best illness understanding that they can have. Then, you can still do your own research, but you’re less likely to misconstrue what you’re reading.  If you have better illness understanding, you are also less likely to choose things that are not appropriate therapies.”

Previous studies have found that patients with advanced cancers who didn’t understand their stage were more likely to choose overly aggressive treatments or ones not in lines with their personal values, Sivendran said.

“You may have hopes that the medical technology or the medications we have will be able to do something they’re not able to do,” Sivendran explained.

The study also found that patients with potentially curable illness (Stage I-III) were less likely to understand their illness. Sivendran said that additional research is needed here, as poor understanding among these patient groups has been linked to treatment choices that are not evidence-based, as well as heightened fear, anxiety, and uncertainty in survivorship. 

Strengthening the provider’s role in enhancing understanding

Following the LG Health study, completed in conjunction with the Mayo Clinic and American Institutes for Research, Sivendran and her colleagues have started several programs to make doctors more aware of the role they can play.

As part of a patient’s comprehensive treatment plan, physicians now note the type and stage of cancer in a patient’s chart—accessible to them and other caregivers through electronic medical records.

The patient sees that notation each time they receive chemotherapy or another treatment, with an explanation of their prognosis with or without the treatment and whether the goal is for a cure, additional time, or improved quality of life.

Physicians are also routinely prompted to offer referrals to palliative, nutritional and chaplaincy care that can help them determine goals and navigate their cancer journey. Such services are available through Palliative Medicine Consultants, a program of Hospice & Community Care in Lancaster, regardless of stage or initial prognosis. The service is available in the outpatient setting at the Ann B Barshinger Cancer Institute.

A new interdisciplinary Oncology Supportive Care Clinic, supported in part by a grant from Lancaster philanthropist Carrie Steinman Hill and launched last fall, also provides extra support to all patients with advanced cancers. The idea, Sivendran said, is to make palliative care a standard of care, rather than something reserved for those actively dying.

Judy didn’t opt for palliative care, but she said conversations with the interdisciplinary team including a chaplain and a psychiatrist helped her come to terms with her life-altering diagnosis. She receives a maintenance dose of chemotherapy once a month.

She continues to be guided by conversations with her doctor about medications and other resources that could improve her quality of life.

“I tell people now: ‘Ask your doctor questions. You’re unique, and your case is unique.’ ”