Beyond Multidisciplinary—Getting the Patients’ Perspectives

From the National Comprehensive Cancer Network annual meeting, Hollywood, Fla.

Most continuing medical education meetings feature a doctor presenting his or her expertise to a room of other doctors. And sometimes it get multidisciplinary with a panel of physicians each contributing their unique perspectives on a given clinical topic.

But perhaps physicians will learn even more if patients are invited to share their views as well at these meetings. That happened here. A cancer survivorship panel included Sam Donaldson, who announced his retirement from ABC News last month and Elizabeth Edwards, an attorney and wife of former Sen. John Edwards.

photo by Damian McNamara

photo by Damian McNamara

Both Mr. Donaldson, who was diagnosed with a melanoma in 1995, and Mrs. Edwards, who was diagnosed with breast cancer in 2004 and had a recurrence in 2007, gave their unique take on the challenges of survival.

“So those of us in ‘the club’ know the problems continue” after acute cancer treatment ends, Mr. Donaldson said. It is not easy to detach from a primary oncologist after treatment, for example, and there is always the fear of recurrence. He explained more impacts on his personal life in an interview shortly after his diagnosis.

“I am worried about everything,” Ms. Edwards said. For example, she felt a rough spot on the back of her neck and searched Google for skin cancer images. As nonchalantly as possible, she also asked her daughter to take a look. “I am not a health professional and neither is my daughter. She said, ‘I don’t know what skin cancer looks like, but I do, however, know what a curling iron burn looks like.’ ” Ms. Edwards said. “Even the most benign thing will scare you to death if you don’t know what it is.”

Doctors treating cancer patients should provide as much information as possible when talking to patients like herself, she said. “It makes my life more complicated because I have no roadmap. My tumor markers are down now that I am on a new medicine. But I don’t know what my prognoisis is. I have no idea whether we are talking about 2 months, 2 years, or 12 years.”

—Damian McNamara

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Filed under Dermatology, Oncology

2 responses to “Beyond Multidisciplinary—Getting the Patients’ Perspectives

  1. Denise Callarman

    I am very interested in creating a place where we can collect the most important information and opinions at patient perspectives, inc. working on website and other tools to help health professionals learn more about patients and their viewpoint – making health care more patient and family centered. Would like to keep your information on file.

  2. meddyblogger

    Thank you for your comment. Feel free to keep in touch.

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