It's seemingly impossible to conceive of most individuals reacting to a diagnosis of a brain tumor-or any other form of cancer-with anything but shock.
During this period, treatment options spelled out by a physician almost inevitably fall on deaf ears as a patient's mind races with a jumble of discombobulated, mostly ominous thoughts. Rationale decision-making just about goes out the window.
"The incredible shock and emotion that comes with hearing the word 'cancer' interferes with information processing among those diagnosed with [the condition]," said Kathryn Pollak, PhD, Professor in Population Health Sciences at the Duke Cancer Institute, Duke School of Medicine, Durham, N.C. "Patients' minds go blank."
According to Marta Penas-Prado, MD, Neuro-Oncologist at MD Anderson Cancer Center in Houston, "The impact of a brain tumor on patients and their loved ones is massive."
And Amanda Bates, Research Programs Manager at the National Brain Tumor Society (NBTS), said brain tumor patients and their families face uncertainty, a sense of feeling alone, and helplessness.
The Brain Tumor Experience
To help improve matters for patients and their caregivers, the NBTS recently announced a new patient and care partner education and preparedness effort aimed at providing those going through the brain tumor medical experience with the information, tools, and guidance needed to play a more active role in their treatment planning and decisions.
The Brain Tumor Experience seeks to address gaps in how brain tumor patients and their care partners obtain and consume information that is vital to receiving personalized care for their diagnosis and at every stage of the brain tumor medical experience.
The initiative was sparked by a survey of more than 1,400 brain tumor patients and caregivers by the NBTS. Among other things, it found that only 7 percent of patients and caregivers indicated they actively participated in their treatment planning (providing input and influence over their treatment decisions), even after undertaking research on their treatment options.
Expanding Patient Knowledge
The topic hits home for physician Tony Blau, MD, Professor of Medicine, Hematology, University of Washington School of Medicine, Seattle. About 3 years ago, he was diagnosed with a form of blood cancer. As someone who's been in the field for 30 years and conducted extensive related research, he finds it nearly inconceivable for those outside medicine diagnosed with any form of cancer to even begin to effectively negotiate the process, especially early on.
"The initial moves you make as a cancer patient can have important consequences on your condition later. You're faced with drinking from a fire hydrant to try to catch up on issues [regarding your condition]. If you have no medical or scientific background, that's daunting." However, it's vital to get up to speed to become "an active partner in your own care."
That's where, as both a hematologist and science researcher, as well as a cancer patient, Blau thinks the NBTS's initiative can provide a huge boost. He also founded All4Cure to help cancer patients share knowledge (https://www.all4cure.com).
Penas-Prado said that "as physicians and other health care providers, we welcome any initiative that helps us partner with our patients to achieve the best possible outcome and balance between quantity and quality of life."
Yet, through no fault of their own, noted Pollak, oncologists generally aren't taught to pause and say to patients: "I imagine that was scary." Instead, they jump right into a treatment plan, which patients aren't in a space to process. Consequently, while physicians effectively explain a plan, "patients just say to them, "I don't know. What do you think?"
That's one reason Pollak understands why patients would rather rely on a web site than in-person meetings or telephone hotlines when ranking their preferred methods of receiving information about the brain tumor treatment experience, as the survey showed.
"Patients can look at a web site, take a break, and go back to it and fully process (information)," she noted. "Doctors have so much information to convey and sometimes do it in large chunks. After awhile, even the smartest person says 'I can't keep absorbing this.' But doctors must convey and do a good job of conveying information so patients can make informed decisions."
If patients and their loved ones don't understand what a doctor tells them about their disease or treatment path, they can't hope to know the right questions to ask, or if there's information they don't have, Bates explained.
Promoting Clinical Trials
On another front, though a strong majority of respondents impacted by the most common malignant brain tumors (glioblastoma) reported they had sought information on clinical trials, these patients and caregivers indicated that the top challenge encountered when searching was uncertainty of where to find information. Further, "not knowing where to find clinical trials" was one of the top three reasons for the decision not to participate in clinical research.
Navigating the information on available clinical trials for patients with brain tumors is challenging-sometimes even for health care professionals not directly involved in the field of neuro-oncology, Penas-Prado said. "Qualifying for a trial doesn't imply it's the best possible option for a given patient. There are other more difficult-to-define criteria." Guidance from a patient's physician and health care team is critical.
Blau bluntly noted that "our clinical trial system's broken." He and his team often conduct trials, which can be difficult to do without uprooting the lives of patients and their families.
"It's extremely unattractive. Clinical trials aren't designed in a way that makes it easy for patients to participate," he noted. "(The system) isn't designed with them in mind. And that's the fault of the clinical research industry generally."
Chuck Green is a contributing writer.
You can find more information on The Brain Tumor Experience online here: http://braintumor.org/brain-tumor-information/theexperience/. This program helps guide patients and clinicians through a diagnosis of brain cancer.