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Decision-Making After a Cancer Diagnosis

Empowered cancer patients make their own decisions after diagnosis, including treatment, support and lifestyle changes.
BY GLENDA FAUNTLEROY
PUBLISHED MONDAY, DECEMBER 17, 2012
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
When the doctor delivered the news of her cancer diagnosis last fall, Gwendolyn Otey was in absolute denial.

“When I heard the words ‘lung cancer,’ they just didn’t make sense to me,” Otey says.

Otey, 58, of Richmond, Va., recalls being shocked during the first visit with her oncologist and admits that when doctors said she needed to have a third of her right lung removed, the news was overwhelming.

“Hearing them say what they wanted to do to me, I felt like I was in another world,” she says.

As patients like Otey come to terms with their cancer diagnosis, many want to be in charge of their own decision-making but are often too emotionally weighed down to take the reins. Experts say the first step for patients who want to take charge is to learn about their cancer type.

“As scary as cancer is, [most patients] have time to get the right information in order to make the best decision,” says Mary Helen Hackney, MD, a medical oncologist at Virginia Commonwealth University Massey Cancer Center in Richmond.

In fact, a 2009 review of more than 50 research studies showed that when patients use what are known as “decision aids” to get health options about their conditions, they have an easier time making decisions. Decision aids—pamphlets, videos or websites—that include treatment options with the possible benefits and harms can help patients become more knowledgeable and better prepared to participate with their healthcare providers in the decision-making process.

Hackney recommends three websites she says are patient-friendly and offer evidence-based information that reflect the national standards of treatment: The American Society of Clinical Oncology’s patient site (cancer.net), the National Comprehensive Cancer Network (nccn.com) and the National Cancer Institute (cancer.gov).

“Be wary of where you get health information,” Hackney says. “I tell my patients never to Google their cancer because random searches can pull up websites that may give more alternative and holistic advice that’s not backed by science.”

Hackney’s recommended sites also offer patients “questions to ask your doctor,” which she says are a good starting point for learning more about a diagnosis during the first visits with an oncologist. Hackney suggests asking specific questions, including about the cancer type, stage and characteristics, as well as how it is treated and the side effects of the treatment options.

But even when they are prepared with a list of questions, patients often are too overwhelmed or anxious to comprehend the doctor’s answers or ask for clarifications, experts agree.

“In the best setting, patients remember half of what I tell them,” Hackney says. “I suggest the patient bring along a second person, so the patient can focus on the discussion with the doctor and the second person can be the note-taker.”

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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