Illustration by Kimberly Carney / Fred Hutch News Service
Hard truths or happy answers live at the fingertips of most cancer patients and survivors – typical treatment miseries, prognosis odds, recurrence risks.
Life or death, by the numbers.
For people with common cancers, such stats almost beckon from the Internet. Medical websites, posted journals, blogs and forums offer a tantalizing (maybe terrifying) treasure map of sorts – virtual pathways to help unearth possible outcomes for your specific disease.
To dig or not to dig: that is the question. And if you opt to shovel online, where do you hunt? How deep do you go?
“For some people, an excess of information may be counter-productive and may add to their anxiety,” said Dr. Jesse Fann, director of psychiatry and psychology services at Seattle Cancer Care Alliance, the treatment arm of Fred Hutchinson Cancer Research Center.
“For others, a wealth of information is reassuring and provides a sense of control over their situation. The important thing is that the person has enough accurate information to fully participate in treatment decisions and their overall medical care,” Fann said. “Each patient must find the right balance.”
‘I didn’t want to know’
To better grasp both ends of the spectrum, consider the opposing philosophies of Dr. Steve Pergam, a 10-year survivor of non-Hodgkin lymphoma, and Janet Freeman-Daily, a lung cancer patient and trained aerospace engineer.
Pergam, a physician who has diagnosed others with cancer, purposely veered away from Internet investigations of lymphoma as well as patient message boards, he said.
“I really tried not to look because I didn’t want to know. I figured it was not going to change the course of my therapy if I knew what the statistics were,” said Pergam, an assistant member of Fred Hutch’s Vaccine and Infectious Disease Division and director of infection control at Seattle Cancer Care Alliance. He has no evidence of the disease today.
“I think statistics at the individual patient level are not that valuable because you are who you are and you’re either going to survive your cancer or not,” Pergam said. “I sort of came to this at peace.”
‘Research was my way of regaining control’
Freeman-Daily, a science writer, launched herself into Web research. More than four and a half years after her diagnosis, she’s now highly versed on the genomics of her lung cancer, her primary treatment drug and her specific prognosis. She’s also connected with other patients via virtual health communities like Inspire.com and Smartpatients.com.
“My way of coping with cancer was to find out everything I could about my disease. That was my way of regaining some control when cancer very clearly indicated I had no control over my life,” said Freeman-Daily, who lives in the Seattle area and blogs about her experience, often using social media in her writing and research. In October 2011, her cancer became metastatic. Today, she has no evidence of disease – a status she said she gained through precision medicine, clinical trials and advice from other patients.
Research, for her, has been a lifeline, though a sobering one at times.
“On the one hand, you very clearly see the statistics, which are somewhat disheartening – lung cancer has a 16 percent five-year survival rate; for metastatic lung cancer, it’s less than 4 percent,” she said.
“On the other hand, online patient communities are the one place where you can find people who have your disease, experiencing exactly the same side effects and symptoms, taking the same treatments,” said Freeman-Daily, now a patient advocate and part of a National Cancer Institute working group on small cell lung cancer. She also participates with the Hutchinson Institute for Cancer Outcomes Research, or HICOR.
“Online, you can learn how others are dealing with it, any tips and tricks they have, doctors they felt were particularly effective, things that didn’t work – the patient’s perspective that you don’t get from a doctor. Online, I’m part of a tremendously supportive network of fellow patients and their caregivers I otherwise wouldn’t meet.”
Conversely, Pergam, the doctor once treated for lymphoma, only wanted to hear two things from his own oncologist: “What do you think is the best treatment, and when can we get started?”
He also was equipped, he said, with the most essential facts about his disease, enough to help him tackle the mental ebbs of treatment: one, lymphoma is hard but, two, he had a chance to be cured. Both turned out to be true.
“I don’t like being my own physician,” Pergam said. “I don’t want to put myself in that situation. I said to myself: ‘I’m not the expert, and I need to give the control of my care to someone else.’”
For patients with chronic conditions, having Internet access makes them more likely than other online adults to read posted reviews about various treatments and drugs, and to gather information about their medical problems, according to a 2013 Pew Research study of 3,014 U.S. adults.
A separate 2013 study, led by researchers at the University of Oregon, reported that “people actively involved in their health and health care tend to have better outcomes – and, some evidence suggests lower costs.” Those improved outcomes included 12.5 percent fewer hospital admissions.
As with all consumers, there are caveats to online research. “Buyer beware,” in this case, becomes “patients be careful.”
For some, the disquiet already felt from a fresh cancer diagnosis only surged when they looked online to gauge their survival odds.
“Unnerved” is how Rachel Webb, a St. Louis-based journalist, described her state of mind immediately after she scanned the Internet to learn about her form of breast cancer.
“I used to write about health care (as a reporter). That was my beat for a long time,” said Webb, diagnosed last August. “When I started looking at those numbers from the perspective of my own health, I became very stressed and fearful and anxious. My husband told me, ‘You need to stop doing that because it’s going to make you frightened.’”
Webb agreed with that advice. These days, her online research consists only of reading about what may have caused her cancer and how her treatment drugs may interact.
Separating the wheat from the chaff
The level of detail many cancer patients typically want and the sources of information they tend to prefer – doctors and nurses, websites, blogs, online and in-person support groups, books and brochures – can vary greatly, said Dr. Ted Gansler, editor of the American Cancer Society’s “CA: A Cancer Journal for Clinicians.”
“Regardless of their information-seeking and decision-making style (active vs. passive), their education level and their computer skills, and their form of cancer, all people diagnosed with cancer should have opportunities to learn as much (or as little) as they want to about their disease and about the benefits and side effects of their treatment options,” Gansler said by email.
His advice for patients is to focus on information that’s accurate, unbiased and personally relevant. That means, he added, facts gleaned from cancer websites and forums should be reviewed by experts, not written with the intent of selling a service or product, and they should be applicable to the individual patient’s type and stage of cancer.
To help personalize their online research, the American Cancer Society provides a list of questions that patients can ask their doctors. The answers to those questions can guide patients on how to apply the organization’s online information to their own medical situations.
Both SCCA and Fred Hutch offer web-based resources on treatments, studies and clinical trials for patients and families facing an array of diseases. Within cancer subtypes, numerous nonprofits maintain fact-loaded sites, including the Leukemia & Lymphoma Society and Breastcancer.org.
Patients should ask their doctors for recommendations on where to find the most accurate, online information about their specific cancers, said SCCA psychiatrist Fann.
He called several general-info websites “helpful.” In addition the American Cancer Society, he listed:
“It’s important for patients to have accurate information about their medical situation in order to make informed decisions about their care,” Fann said.
“But it is also possible to become overloaded with information, some of which may be confusing or not entirely accurate,” he added. “I tailor my advice depending on the particular person.”
How much research did you do as a patient – or family member? Did it help? Tell us about it on the Fred Hutch Facebook page.
Bill Briggs is a Fred Hutch News Service staff writer. Follow him @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, responsible for covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post and part of the newspaper's team that earned the 2000 Pulitzer Prize for breaking news coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: An Ordinary Man, a Medical Mystery, and a Trial of Faith." Email: firstname.lastname@example.org.
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