For many, a life-threatening diagnosis means it’s time to log on, join forces, and get creative.
When she was diagnosed in 2002 with leiomyosarcoma (LMS), Sharon Anderson had already watched a friend die of the rare but aggressive cancer. “I knew it was doom and gloom,” says Anderson, who retired from her job as a social worker after the disease—which affects just four in a million people annually—was discovered. “No treatments worked; I was just giving away my possessions and telling people this was the beginning of the end.”
Anderson—a 52-year-old San Francisco resident with wavy dark blond hair and a no-nonsense demeanor—had cause for pessimism. She’d been diagnosed at Stage IV on the classic cancer assessment scale that ranges from I to IV (there is no Stage V), meaning that cancer had spread beyond the initial site along the muscle wall of her uterus. In LMS, malignant tumors develop from the body’s smooth muscle tissue, so they can appear in many locations.
But Anderson’s fears never came true. When she posted information about herself on an online LMS support group, 20 people from the online list immediately wrote back and told Anderson that, in their opinion, her doctor was using incorrect surveillance to track the growing tumor in her lung. Through daily reading of postings to the list (a forum hosted by the Association of Cancer Online Resources, acor.org), Anderson learned what was working for other patients and what the latest research showed. “People on the list start from zero,” she says. “It’s like learning a foreign language. But people will hold your hand, and little by little it all starts to sink in.”
Ultimately, Anderson found a new doctor—one whose techniques were in line with the recommendations of her electronic peers. Following the suggestion of another LMS patient, a doctor who belonged to the online group, Anderson tried a drug typically used to treat breast cancer. Today, she has been disease-free for six years—thanks, she says, to online networking and self-advocacy.
Facing cancer or any serious diagnosis, people are taking far more active roles than was common even a decade ago. Much as Gutenberg’s printing press brought reading, and with it, empowerment, to the masses in the 15th century, the Internet has revolutionized access to medical data. Online groups for conditions from back pain to Parkinson’s disease are readily available, and the cancer resources website that Anderson used offers about 150 online communities for people with different types and subtypes of cancer.
The Pew Internet and American Life Project has found that about 20 percent of e-patients (those who seek medical information online) choose sites where they can talk to medical experts and other patients. “People are accessing a much deeper level of information than they were five years ago,” says Susannah Fox of the Pew Project. And according to Manhattan Research’s 2009 Cybercitizen Health study, more than 60 percent of cancer patients report going online for health information.
“Cancer patients’ willingness to share treatment experiences and advice is helping the online community to flourish,” says Monique Levy, Pew’s senior director of research. Online discussions about issues related to cancer, such as sexuality or parenting in the midst of treatment, are also part of the mix.
The availability of disease-specific information and advice is changing attitudes about the role of the patient. Consulting just one doctor and simply following his or her recommendation may sound appealing, but it’s often no longer enough. Anderson’s approach would have been considered radical a generation ago: “You have to seek out many resources and then make your own decisions,” she says.
Today, Anderson spends four to eight hours daily as a volunteer LMS advocate, consulting with newly diagnosed patients, coordinating several online support and information groups, and serving as a link between LMS patients and researchers. When she’s not working, Anderson devotes herself to taiko drumming, performing with the San Francisco–based ensemble Maikaze Daiko. “Drumming is my escape and my therapy for depression and anxiety,” she says.
Rebecca Cohen is another cancer survivor who credits her online community with steering her to better treatment. “We’re fellow warriors in the world of LMS,” says Cohen, with a rueful glance toward Anderson, her friend and ally for the past three years. Both women are eager to share their stories at Cohen’s Elmwood home on a foggy summer morning. Chemotherapy has robbed Cohen, a 52-year-old Berkeley mother and former adaptive physical education specialist, of both hair and appetite, and she is strikingly thin and frail.
Unlike Anderson, Cohen is still searching for the treatment that will put her LMS into remission. Because she has a somewhat different form of the disease, Cohen won’t benefit from the same drug that worked for her friend.
Cohen’s saga began in 2007, when she was incorrectly diagnosed with endometrial stromal sarcoma, which, like LMS, is a rare uterine sarcoma. The drugs used to treat the diseases are different, though, and if Cohen hadn’t found Anderson through a peer support program at the University of California, San Francisco Medical Center (UCSF), she says, she would have accepted the initial diagnosis and received the wrong treatment.
“If you have a rare diagnosis, I always tell people to get their pathology double- and triple-checked,” says Anderson. “Don’t mess around with a small hospital; go to the research centers that have seen the most cases.”
For Cohen, the quest for an accurate diagnosis began at Berkeley’s Alta Bates Summit Medical Center, after which she had samples of her cancerous tissue sent to the Stanford Cancer Center, the Emory University School of Medicine, and the Yale School of Medicine before finally getting an LMS diagnosis from pathologists at Memorial Sloan-Kettering Cancer Center in New York.
People like Cohen are redefining the doctor-patient relationship. Once a well-understood hierarchy with the doctor as benevolent dictator, this dynamic has been forced to adapt as patients—now immensely better-informed than in the pre-Internet era, not to mention decades ago when some cancer patients weren’t even told their own diagnoses—insist on having their say. At first, Cohen followed the standard chemotherapy regimen accepted as the first-line defense against LMS. But after a welcome eight-month remission, the drugs stopped working, as often occurs for people with an aggressive cancer. “After the initial treatment,” Cohen says, “there’s no straight course. The path gets fuzzier.”
Since that time, her relationships with doctors have been a series of ongoing conversations and negotiations. Specialists don’t tell her what to do, but instead present options for her to consider. “As I talked to more people, I realized that the doctors just don’t know and you have to come equipped,” Cohen says, leaning back in her chair and closing her eyes. She tries to stay a step ahead, bringing ideas to doctors and always having a “plan A and plan B” in mind before getting test results.
Laura Ellingson is a former cancer patient who teaches health communication at Santa Clara University and conducts research in patient-physician communication. Her choice of career, she says, was determined by her experience with cancer as a young adult. Diagnosed with osteogenic sarcoma (bone cancer) at age 20, Ellingson went through chemotherapy, the removal of the part of her femur above the knee, and its replacement with a donor bone. Years of complications from staph infections ensued, and, in 2008, her leg was amputated several inches above the knee. Ellingson recalls with regret that early on in her treatment she needed someone to blame, and frequently lashed out at her oncologist. “I was so angry,” she says. “Here I was a sophomore in college and I was going to be bald!”
Twenty-one years later, Ellingson brings a wealth of personal and professional expertise to the subject of the doctor-patient relationship, viewing it as an evolving model, in which younger patients are typically more comfortable stating their needs and preferences than older ones. People of higher socioeconomic status, she says, are also more assertive because they’ve had the privilege of developing a trusting relationship with one physician, unlike poorer patients who more likely rely on whichever doctor is available at a free clinic or emergency room. Cultural norms can inhibit dialogue, too, as many cultures have a tradition of respectful acceptance of a doctor’s advice.
Ellingson describes an old-school model with the doctor as the ultimate authority versus a new model where doctor and patient share information. Although there are exceptions, physicians in fields like primary care and family practice, she says, are more likely than specialists to be comfortable with a collaborative style relationship. Primary care doctors have chosen a field with lower pay than most specialties, but one that offers the chance to build ties with patients over many years. The goal, in Ellingson’s view, is a partnership. “I want patients to be as empowered as possible,” she says, “[but] the physician has wisdom about some topics and the patient has wisdom about some topics, and these need to be linked together.”
Although many patients actively manage their own health, the role is not without its burdens. “It’s hard enough being the patient, but now I have to be the doctor, too,” says Anderson. Like millions of people diagnosed with cancer, Anderson had to grapple with a slew of new information and terminology without the benefit of any prior medical training.
Even for those who succeed in wading through the lingo, the emotional and financial costs may be perilous. Through her own research, Cohen learned in 2009 about an experimental immunotherapy being given in Tel Aviv. She opted to try the treatment, in which white blood cells from her husband and brother were “supercharged” in a lab to increase their potency and then transfused into her body. The hope was that this one-time procedure would enable Cohen to benefit from the immunity in these powerful cells. Signing on for an experimental treatment after a drug, or multiple drugs, become ineffective is not uncommon. But after doing the legwork, getting herself halfway across the world, paying for travel expenses, and undergoing the transfusion, Cohen faced the devastating news that the treatment hadn’t helped.
Ellingson can also cite instances where patient empowerment doesn’t pay off. For example, she says, the current consumer mindset often leads to ill-advised requests (or even demands) for a drug advertised on TV. In addition, she notes that research shows people are reluctant to confide in their doctors about using vitamin and herbal supplements, which can cause dangerous interactions with prescription medicines.
The Internet, too, is fraught with unexpected dangers. “My students get depressed about the scary things they read,” says Ellingson. “People can end up very frightened.” She recalls one young woman who feared kidney failure after self-diagnosing online (she actually had a urinary tract infection), and another who worried that she had leukemia when she was just sleep-deprived. Learning to decipher online information and to determine what is pertinent and credible isn’t obvious, Ellingson says—it’s a skill that must be learned over time. And because fear makes it hard to think clearly, people who have recently been handed a diagnosis may find it difficult to take in complex information and make rational decisions.
Michael Cassidy, oncologist and medical director at the Alta Bates Summit Comprehensive Cancer Center, appreciates the value of the Internet for patients, but also urges caution. “Online research can be very helpful,” says Cassidy, “adding to a patient’s understanding of their disease and treatment options.” He adds, however, that because issues are so often complex and technical, it’s best to share information with your physician, who can put it all into perspective. Patients frequently come to Cassidy armed with online research, and he helps sort out what is valid and helpful from what is not.
For many, the online connection is not just about facts, but also a source of hope and affirmation. Childhood cancer survivor Fran Culp lives in San Francisco with her husband and their spaniel, Patsy Cline. Now 40, Culp was diagnosed with Wilms’ tumor, a rare kidney cancer, at age 2. She has spent much of her life coping with the wake of the high-dose radiation and chemotherapy that eventually cured her tumor, but severely damaged both her spine and digestive system.
“Growing up,” says Culp, “when my friends were healthy and immortal, I was in and out of the hospital.” Her adolescence featured several major surgeries in an attempt to straighten her spine, and many hospital stays to treat severe gastrointestinal problems. She has struggled to eat without pain, can only ingest tiny portions of food, and for the past five years has been receiving most of her nutrition and calories intravenously.
Like Ellingson, Culp would find that her early experience with cancer set the stage for much of her future. In college, she developed a major that she called “wellness,” and she now works in policy and planning for the San Francisco Department of Public Health.
As she entered adulthood, Culp felt increasingly alone. “In day-to-day life,” she says, “I found it hard to explain to others that I no longer had cancer, but was sick all the time.”
With the rise of the Internet about 10 years ago, Culp had an “aha” moment. “The milestone,” she says, “was realizing, there’s a thread here; I can’t be the only one.” A Google search eventually turned up a long-term survivors list, a discussion group for people dealing with “late effects” (the long-term impact of cancer treatment). Like the online group that Sharon Anderson discovered, the list falls under the umbrella of the Association of Cancer Online Resources. Culp’s life, like Anderson’s, was forever changed by her online discovery.
“I felt like an alien who had found her planet and her people,” says Culp. “I posted immediately; I needed to interact and engage with people who would understand.” Soon after joining the list, Culp found herself privy to a new set of guidelines for survivors put out by the Children’s Oncology Group. This information about post-treatment care and follow-up was a priceless resource that she would never have seen if not for the list.
Ellingson emphasizes the importance of social networking for people like Culp as a means of garnering both support and information. “This is invaluable,” she says, “particularly for people with rare diseases who may not be able to find anyone locally who shares their experience. Also, some people find computer-mediated communication to be more comfortable because it is less intense and less intimidating.”
Online networking also helps with the mundane nuts and bolts of dealing with illness. Medical updates can be posted on blogs or services like CaringBridge, which offers free websites in about 225 countries for connecting with friends and family. For coordinating help with meals, driving, or other tasks, internationally available sites like Lotsa Helping Hands allow friends to pitch in while freeing the person or family dealing with illness from the burden of asking for help. Using this site, Cohen’s friends and neighbors sign up to bring dinner for her family twice each week.
Cohen provides health updates on her own blog, and Culp has used CaringBridge for the same purpose. This approach not only avoids the need to retell the same story, but also assures that information is passed on accurately. Another benefit, according to Culp, is that the process offers “a way to document the experience and to remember the details down the line, both for myself, and for others who are walking the same road.”
Culp has been actively involved with the long-term survivors list for nearly a decade, and helped to create a website as a supplement to the discussion group. In 2008, the founder and moderator of the list, Linda Zame, died of colon cancer, and Culp stepped into a larger role. With two co-moderators, she responds to questions and guides online discussions about medical concerns, fears, and frustrations. Especially for people whose doctors aren’t familiar with the late effects of cancer treatment, as many still aren’t, the website and support group provide a lifeline.
Last year, when Culp was diagnosed with breast cancer (a known late effect of high-dose radiation), her online role reminded her to practice what she’d told so many others to do. “I’ve learned a lot about personal advocacy through the list,” she says. “I’ve never been a shrinking violet, but being able to hear from people on the list about different avenues for dealing with breast cancer and reconstruction made me realize I needed to talk to more doctors.” She opted for an additional consultation, necessitating yet one more telling of her long, complex medical history. In the end, though, seeking this opinion led Culp to a surgeon and treatment plan that felt far more comfortable than her original choice. “It was like night and day between the two reconstructive surgeons,” she says. “It’s all about the individual doctor and what they’re trained in and comfortable with.”
Even as she dealt with surgery, Culp stayed active as co-moderator of the long-term survivors list. And during the past year, she also worked with other volunteers to update the group’s website directory of specialized clinics nationwide for people who have undergone cancer treatment.
For survivors like Culp, the desire to give back is paramount. And some are also reaching out in another direction—to those who hold out the possibility of a cure. Toward that end, both Anderson and Cohen have become fierce supporters of LMS research.
In 2004, LMS patient and Woodside resident Iqbal Ahmed read an article by Stanford pathologist Matt van de Rijn about determining the unique characteristics of cancer cells to understand and treat sarcomas. Ahmed contacted van de Rijn to pique his interest in doing a genetic profiling of people with LMS. Van de Rijn was interested, but needed hundreds of tissue samples to do this work. Together, Ahmed and van de Rijn designed a drive for collecting the samples. Hospitals typically keep 10 to 20 samples from each tumor that is biopsied or surgically removed, preserving them in small paraffin blocks.
When Anderson joined the project in 2004, she took on the logistical nightmare of gathering the samples. The painstaking process started with convincing LMS patients (many of whom were quite ill) to fill out forms authorizing hospitals to send tumor samples to van de Rijn’s research project. The biggest headache, says Anderson, was negotiating with hospital bureaucracies, where employees were often reluctant to comply with her unusual request. She eventually got about 300 samples, enough for van de Rijn to begin his study.
Two years later, in 2006, Anderson spent her summer recontacting everyone who had sent a sample to learn how each person’s illness had progressed. “People talked to me because they trusted me,” she says. “I could tease out information that wouldn’t have shown up on a form.” Anderson also garnered data from obituaries and from the spouses of people who had died.
Using the information and samples that Anderson collected, van de Rijn was able to correlate certain characteristics of cells, known as markers, with patient outcome. Specifically, he discovered that in LMS, the presence of a large number of inflammatory cells called macrophages means a more aggressive, harder-to-treat tumor. Identifying these markers helps with both diagnosis and predicting how likely the patient is to survive.
Of greatest importance to people like Cohen, the details gleaned about particular cells can also be used to develop more effective drugs. The hope is that by understanding the genetics of certain cancer cells, researchers will be able to target the right drug to those exact cells. And because targeted drugs only affect cancer cells, they hold the promise of milder side effects than chemotherapy, which kills all fast-growing cells.
Ahmed died of LMS in 2009, but the research on subtypes of LMS conducted at van de Rijn’s lab won two awards that year from the U.S. and Canadian Academy of Pathology. Today, van de Rijn continues his research with financial support from the National Institutes of Health as well as from several patient groups. Cohen, meanwhile, continues her search for the right drug. Over the past two-plus years, she has undergone surgeries to remove tumors from her hip and lungs and also tried a second type of chemotherapy when the initial drugs stopped working. When these approaches didn’t help, she battled with her insurance company for coverage of Votrient, a new, targeted drug that the FDA has approved for renal cancer, but not yet for sarcoma. The Votrient has also disappointed, though, and Cohen will soon begin a clinical drug trial in Santa Monica.
Remarkably, in spite of her illness, Cohen has managed to organize several fundraising events to support van de Rijn’s research. Unlike much of the high-tech organizing that has brought patients together, these events sprang from do-it-yourself spirit and the old-fashioned power of friendship and community. Two years ago, when a friend suggested that she raise money for LMS, Cohen didn’t know where to begin. “I was a teacher,” she says. “I didn’t know anything about fundraising.” But with the help of a friend who works at The Marsh, a Berkeley theater, the graphic design talents of another friend, and generous restaurant owners brought in by Cohen’s mother, Cohen pulled together a memorable event. Brian Copeland, star of Not a Genuine Black Man, performed his poignant, funny, one-man show at Berkeley’s Julia Morgan Theater and raised $16,000. Cohen’s daughter Abby, then age 10, also got into the act, performing a song from Rent. Cohen followed this event with a second annual fundraiser last month, featuring a new solo show performed by East 14th star Don Reed that netted approximately $8,000.
Cohen’s friends and neighbors have also stepped up. The community at Berkwood Hedge, the Berkeley elementary school that Abby attended and where Cohen taught P.E., raised $6,000 through a walkathon. A running buddy raised another $6,000 through a marathon. Neighbors held garage sales. And donations of works by local artists were featured at a silent auction for LMS research held at the Elmwood wine store, Vintage Berkeley.
Van de Rijn is immensely grateful for the fundraising, and also acutely aware of the emotional and practical benefits that ensue when patients unite and organize. “Having any cancer is very difficult,” he says, “but having one that your friends and sometimes even your doctor has never heard of also leads to terrible loneliness. What’s new in the last 10 to 15 years is that people who suffer from a rare disease can meet and get organized through the Web.”
Once a novice in the online world of LMS, Anderson is now one of its leaders, wearing many LMS-related hats. She is founder and moderator of a Yahoo group for people with LMS who live in the Bay Area and another for those with uterine LMS who are investigating hormone treatments. She writes LMS eAlerts, an online news service for patients and professionals that features new research, survivors’ stories, and fundraisers. For those whose illness is stable or in remission, the online conversation can feel overwhelming or depressing, and the news service provides information without the painful stories. Anderson also serves as executive director of the LMSarcoma Direct Research Foundation and continues her work as a peer counselor at UCSF, helping to explain the diagnosis and treatment options to new patients. In her role as a counselor, she also takes the time to help patients carefully organize their medical records according to the type of report and date as well as to mark essential information with a highlighter.
Perhaps most importantly, Anderson serves as a liaison between patients and researchers. She reads medical articles, attends conferences and meetings about sarcoma, and gets to know the researchers. She pushes for the inclusion of LMS survivors in clinical trials by letting scientists know that the LMS community is raising research dollars and that she can connect them to patients. For example, after learning from a pharmaceutical rep that the new drug Ridaforolimus was showing promise for LMS patients, Anderson shared this information with the online community, which helped to recruit people for the trials currently underway.
Anderson doesn’t question whether she should devote her time to helping others with LMS. “Because of the online support group,” she says, “I didn’t die. I feel obligated to keep my eyes open for other people. I’m answering emails nonstop. What else would I do? Turn my back on these people? Who else would give them all this information if I don’t?”
Rachel Trachten is a childhood cancer survivor and a regular contributor to The Monthly. She lives in Berkeley.