NEW YORK—“Cancer is out of the closet,” said Jimmie Holland, MD, the Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering Cancer Center, speaking here at the Chemotherapy Foundation Symposium, during which she reflected on changes in the field of cancer care in the last half century.
Now that there are more survivors—because of new drugs and improved treatments, she said: “Now we can really talk about it.”
“Remember the day when we didn't tell people what their diagnosis was once it was found?” she said, adding that today withholding such information would probably be illegal. There was a stigma attached to cancer, she explained. “You wouldn't tell anyone. The family wouldn't tell anyone. They didn't put it in obituaries.”
There was fear of contagion, she said. “I remember a patient with leukemia at a party who was given a plastic glass, when everyone else got a cocktail glass. There was fear in the workplace and social life as well.”
Newspapers would not publish the word “cancer,” she continued. Remember the word “victim”? “We don't talk about that much anymore. The term survivor has taken over now—from day one.”
Holland recounted a patient telling her that he had told his doctor that his sex life “is not much good anymore”—and the doctor telling the patient, “that's your life.” “You couldn't do a lot about side effects [then], and now we can.”
Now, though, we have treatment plans for patients' survivorship, Holland said. We have a whole multidisciplinary cancer care team. Today, the term patient-reported-outcomes, PROs—“that's jargon that's accepted in our world.”
In the 1970s patient-reported symptoms were not considered valid, Holland said. Only observations from clinicians got recorded. But now we've created scales to quantify those subjective symptoms—pain, anxiety, depression—to validate it.
“In the past all those things were considered not measurable. But today, we measure them. And because we can measure them, we can do our interventions.”
What Stays the Same
Another “breakthrough,” she said, was landing on the term “distress.”
“No one wanted to use the word ‘psychological’ or ‘psychiatric’—those were stigmatized. So we came up with the word ‘distress.’”
Anybody can be distressed, Holland noted. “It's normal to be distressed.”
And distress now gets measured on a scale—like pain. “It puts the foot in the door and makes it ok to talk about it.”
How Change Happens
What has changed, she said, is that there is now an evidence base to show that psychosocial interventions work.
“The social climate has changed. We have millions of survivors and we're paying more attention to that.”
In 1950, the new era of cancer care was chemotherapy—and there was a lot of public enthusiasm, Holland said.
And now, this new era of precision, genetic-based medicine has caught that same public enthusiasm. “All of these genetic and genomic approaches are exciting and they give us hope.”
But, she noted, some aspects of cancer care have not changed. Still paramount for quality cancer care is patients' trust in their doctors. “If you go back to faith and hope and trust—those words haven't changed over the past 60 years.
“The personal side, the patient-centered side of care is just as important as these trials that are coming out on new drugs.”