Multidisciplinary Approach, Second Opinions Improve Treatment, Lives
In her 2006 memoir, “Back Into the Sunlight,” Karen Rosen wrote: “It’s been two years since I was diagnosed with [glioblastoma multiforme], a very nasty brain cancer. But despite the odds that I had only a 50-50 chance of being among the living even one year later, I’m still here after two years. That calls for a celebration.
“I also celebrate that I’ve stepped back into the sunlight after months of being in a dark, cloudy, foggy, scary place. During the worst of times, I couldn’t tie my own shoes, type a message, read. I was exhausted, afraid and anxious much of the time. I felt disconnected from myself and wasn’t sure if I’d ever come back. But little by little, molecule by molecule, I feel like I’ve come back into the sunlight over the last year; I’ve come home to myself.”
And at the start of 2007, Karen was still persevering. “I am still here because of good medical teams and all the love and support I have. Together it all has a force, and I have come to terms with death and the cycle of life,” she told The Washington Diplomat in a January interview.
The cancer diagnosis was a bolt out of the blue for the previously healthy 60-year-old, a professor at Virginia Tech University, as well as her husband Cecil, 61, a retired NASA executive and aerospace engineer with his own firm. While on vacation, she was diagnosed with an aggressive brain tumor by a single doctor at a local hospital and was scheduled for surgery “right away,” Cecil said. But when the couple asked for a second opinion, Karen was “moved out of intensive care into a hallway,” and the scheduled services disappeared. That’s when the Rosens’ journey into medical collaboration and multidisciplinary diagnoses started.
Without any appointment or contacts, “we got into the car and drove to Johns Hopkins Hospital in Baltimore, [Md.], arriving at 10 at night” and checked into a hotel, Cecil recalled. The head of neurosurgery at Johns Hopkins Brain Tumor Center, Dr. Henry Brem, returned Cecil’s Saturday call, as did another doctor there, and a multidisciplinary tumor board team evaluated Karen’s case on Monday. The first of four eventual surgeries came two days later—and her Hopkins team has been involved in her radiation and chemotherapy treatments ever since.
The tumor board “has met on Karen’s case many times,” Cecil said. Tumor boards typically include a surgeon and pathologist, nurse, radiation oncologist, medical oncologist and other specialists.
What Recent Research Recommends The Rosens fortunately found their way into a multidisciplinary treatment path, and recent research highlights its importance for cancer patients.
Dr. Michael Sabel at the University of Michigan conducted a study of 149 breast cancer patients who came to Michigan’s Comprehensive Cancer Center for a second opinion from the facility’s multidisciplinary tumor board. The researchers found that more than half of these patients saw a change in their diagnoses or treatment plans—or both. Newer treatments and tests were proposed, tumor assessments changed, surgery types were altered, and follow-up plans changed. The study, which was published in the journal Cancer last November, created a stir about second opinions.
The focus on second opinions can be misleading, according to Sabel. “There are two take homes from this study,” he explained. “It suggests, first, that we may be moving toward a multidisciplinary ‘tumor board’ approach to cancer in general.” The second message is that breast cancer patients who are diagnosed by a single doctor in a community setting may want a second opinion. With many cancers, including breast cancer, “surgery used to be the only choice, but it’s no longer surgery first,” Sabel said. “Every patient doesn’t need a second opinion,” he added. “If they’re diagnosed at a multidisciplinary medical center, they’re probably fine.”
In addition to considering the team approach, Sabel also recommended that cancer patients always ask how much experience a doctor has in treating their type of cancer.
The Johns Hopkins tumor board advised the Rosens regularly as Karen went through five cycles of chemotherapy and periodic brain scans. The Rosens do a great deal of “what-if” planning. With Cecil having become a full-time patient advocate for his wife, the couple also sought treatment, information and advice at the National Cancer Institute in Maryland and at Duke University’s Preston Robert Tisch Brain Tumor Center in Durham, N.C., dealing with tumor boards at both places. “We wanted to know what the options were,” Karen said.
By March 2005, there was no sign of tumor activity in Karen, but with glioblastoma multiforme (GBM), which diffuses through brain tissue, some cancer cells almost always remain. And last October, a reoccurrence was found. Karen had her third surgery and was able to make it to her oldest son’s wedding eight days later, before heading into surgery number four to treat a brain infection last November.
She’s far from giving up: “Cecil and I raise money for brain cancer research, and we’re forming a team for the Brain Tumor Society’s Race for Hope [on] May 7 in Washington, D.C.,” she said, adding, “It’s exhilarating.”
Steps for the Newly Diagnosed For newly diagnosed cancer patients, the Sabel study and the Rosens’ focus on support groups and medical teams can offer good guidance. To help with the overwhelming welter of information and many questions patients are bound to have with a new diagnosis, the National Coalition for Cancer Survivorship (NCCS) recommends an orderly series of steps to take before your first (or next) meeting with a cancer specialist, as well as during your treatment time.
First, do basic research. “We’ve done a lot of research,” Cecil noted. Aim for the latest and best information. Begin with the National Cancer Institute at the National Institutes of Health at www.cancer.gov or call (800) 4-CANCER. Once at the Web site, click on “Cancer Topics” and find the “PDQ” link, which will give you recent information from top experts on treatments for your type of cancer. Another highly recommended site is OncoLink (www.oncolink.upenn.edu), which, according to NCCS, is “one of the best sources of [cancer] information found on the Internet.”
In addition to standard medical treatments, Karen uses alternative therapies, including a diet created by a nutritionist, as well as yoga, meditation, Reiki and acupuncture. “There are a lot of quacks out there” and alternative therapies need to be evaluated critically, Cecil warned, recommending the Web site www.quackwatch.org. The American Cancer Society has a guide to alternative medicine on its site at www.cancer.org.
NCCS suggests that you round off your initial research by looking at the practical and personal sides. For instance, the “People Living With Cancer” site (www.plwc.org) focuses on the patient experience and tells you what treatments are like and how to cope with cancer. And you can visit NCCS’s own site, www.canceradvocacy.org, which has both medical information and practical coping tips.
Second, prepare a list of written questions to take to your doctor. You can download a free guide prepared by NCCS called “Teamwork: The Cancer Patient’s Guide to Talking With Your Doctor” at www.canceradvocacy.org/resources/pubs/. “Take a proactive approach,” Cecil said. “One of the most important things is to develop a personal relationship with your key providers.”
Third, expand your practical patient knowledge. “You need to take active responsibility for your treatment,” Karen advised. NCCS has developed a “Cancer Survival Toolbox” of practical advice for people with cancer and their families that’s available in English, Spanish and Chinese, which can be found at www.cancersurvivaltoolbox.org.
Fourth, get support. “There’s emotional trauma associated with almost any cancer. My husband and two sons make a big difference. And I have support systems everywhere,” Karen said. There are two types of support groups, Cecil explained, some focused on medical issues and some on the personal side. “Both are helpful,” he said.
NCCS advises looking for a support group at your hospital. You can find more assistance, including online patient groups, through the Association of Cancer Online Resources (www.acor.org), as well as through CancerCare (www.cancercare.org), a nonprofit that offers free, professional services to anyone affected by cancer, including counseling and financial assistance.
Another good resource for cancer patients—one with international outreach—is the Wellness Community, which offers free online groups as well as local support, networking groups, lectures, workshops and social events “in a home-like setting” (www.thewellnesscommunity.org).
According to Michelle Pollak, the Wellness Community’s director of marketing and development, “We help people online in 12 countries as well as the United States: Canada, China, India, Israel, Japan, Malaysia, Peru, the Philippines, Portugal, Tanzania, Trinidad and Tobago, and the U.K.” There are also local Wellness groups in Tokyo and Tel Aviv, with one scheduled to open in Bethesda, Md., this spring. Pollack is particularly proud of “Group Loop,” their online support for teens with cancer. “Young people in it realize they’re not alone,” she said.
Fifth, “dig deeper” on cancer research if you wish, but use reliable resources. For detailed professional medical information and guidance on original research, NCCS recommends OncoLink, described above, as well as the U.S. National Library of Medicine (www.pubmed.gov). Professional medical societies are also good sources. These include the American Association for Cancer Research (www.aacr.org) and the American Society of Clinical Oncology (www.asco.org).
Sixth, if possible, have a patient advocate by your side. Cecil has made advocacy for his wife a full-time job. He conducts research, works through medical options with her, deals with doctors and nurses, checks medications and treatments, and participates in support groups. It’s very important for cancer patients, who may be very ill or disabled at times, to have such assistance, the Rosens said.
“I don’t know how long I’ll be in the sunlight, but for now I just know that it feels really good to be here and I hope it’s a nice long visit. Today, my life span remains uncertain (as is true for all of us),” Karen wrote in her memoir, “[but] I know Cecil and I have some trips to take; some new beaches to explore, sunrises and sunsets to enjoy; lots more laughing to do, and hopefully grandchildren to play with someday.”
*Some features of the Rosens’ story have been altered slightly at their request to preserve privacy.
Multidisciplinary Options in D.C. Area
Georgetown University Medical Center http://lombardi.georgetown.edu The Lombardi Comprehensive Cancer Center at Georgetown University Medical Center uses a multidisciplinary approach in many cases and also relies on tumor boards. For example, Lombardi’s Breast Cancer Consultation Group offers women with newly diagnosed breast cancer a simultaneous consultation with a surgeon, radiation oncologist, medical oncologist and nurse case manager, while also offering possible meetings with a physical therapist, plastic surgeon, nutritionist or psychologist. A similar team approach is applied to the management of head and neck tumors, where patients receive an initial evaluation by a weekly tumor board.
Taking this approach one step further, in 2005 the Lombardi Center opened a multidisciplinary neuro-oncology clinic to treat cancers of the spine, brain and nervous system in a team setting.
George Washington University Medical Center www.gwumc.edu/gwci The George Washington University Medical Center’s Cancer Institute takes an interdisciplinary approach to cancer care and every new patient’s case is presented at a weekly tumor board meeting. At these meetings, teams include oncologists, hematologists, radiation oncologists, surgeons, pathologists, radiation therapists, registered nurses and support professionals. There are also specialized boards for head and neck tumors, breast cancer and lung cancer, with plans to extend the approach to urologic, gastrointestinal and brain cancers.
Howard University Cancer Center www.med.howard.edu/hucc/ The Howard University Cancer Center holds a weekly tumor board meeting for a multidisciplinary discussion of cancer cases, with representatives from a number of oncology specialties, including gynecology, radiology and pathology, as well as social services, nursing care and a tumor registry.
The Howard Cancer Center also partners with the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in a long-term collaborative relationship.
Children’s National Medical Center (Children’s Hospital) www.dcchildrens.com Every other week, Children’s Hospital conducts a tumor board where all patients with newly diagnosed malignancies are reviewed. Presenting signs and symptoms, radiological findings, surgical approaches, pathologic findings and plans of treatment, including radiation oncology, are addressed at the conference.
Additionally, Children’s Hospital uses a “telemedicine-electronic-videoconferencing communications system” for regular tumor board meetings to discuss patient cases with radiation oncology researchers at the National Institutes of Health, whose National Cancer Institute many Children’s patients visit to receive their radiation treatments.
Johns Hopkins Medical Institutions www.hopkinsmedicine.org “Johns Hopkins” is the umbrella term for the Baltimore, Md.-based organization’s hospital, medical school and health systems. It includes the Sidney Kimmel Comprehensive Cancer Center as well as a number of specialized cancer centers such as the Avon Foundation Breast Cancer Center, the Ovarian Cancer Center and the Brain Tumor Center.
Throughout Hopkins’s cancer care, there is a consistent use of tumor boards and multidisciplinary approaches. It assigns a team to work with young cancer patients, for instance, and each patient has a primary pediatric oncology physician, nurse, social worker and physician’s assistant who work with the child and the wide range of specialists who may be involved in the child’s care.
About the Author
Carolyn Cosmos is a contributing writer for The Washington Diplomat.