By michelle l. brandt
Photography by TrujilloPaumier
It’s a spring day in 2006, and Shariann Tom is walking gingerly through the sun-drenched atrium of the Stanford Cancer Institute, away from the last round of her cancer-fighting regimen. She has successfully completed not one, but four separate fights with Hodgkin’s lymphoma and her oncologist has just given her a tentative clean bill of health. This pretty, petite woman in her mid-40s is, for the moment at least, cancer-free.
But the Pacifica, Calif., wife and mother of two hardly looks or feels like a victor. Her chest is pounding, her eyes brim with tears, and her normally warm smile is absent. With trepidation, she approaches the sliding doors that separate this therapeutic womb from the uncertain, and much less welcoming, outside.
“Inside the building, everyone is cheering for me, congratulating me, telling me to go live my life,” Tom says much later. “But as soon as I’m on the other side of those doors, I feel fired, dropped, alone. Other than knowing I have to go home, I don’t know what I’m supposed to do.”
Tom walks to her car and wets the steering wheel with her tears as she drives away.
More people today are surviving cancer than ever before, thanks to improvements in detection, diagnosis, treatment and follow-up care. One in 20 adults in the United States is a cancer survivor, and the number of survivors has quadrupled since 1971. Patients like Tom are also increasingly surviving multiple cancer experiences.
The disease may be gone for Tom and her 12 million cancer-survivor counterparts, but the consequences of the disease and treatment remain: Physical problems, depression, financial woes and future cancer diagnoses are a few of the challenges they face. There’s a need for our health-care system to get better at helping these warriors stay healthy in body and mind, and this need will only grow as more people slay the cancer beast. A recent report estimates that by 2020 the number of survivors will reach 18 million.
A health-care system that provides adequate support and resources to survivors would represent a shift. As Julia Rowland, PhD, director of the National Cancer Institute’s Office of Cancer Survivorship, puts it, those in the cancer field were “just grateful that people made it through therapy. We were focused on keeping people alive, not on other possible consequences of diagnosis and treatment.”
Those who work closely with patients know now there’s more to it. “It’s not like you have active cancer, but you have active consequences,” says survivorship expert Patricia Ganz, MD, a professor of health services and medicine at UCLA. “It doesn’t go out of your life — it’s not like getting your appendix removed.”
Eight years before facing those sliding doors, Tom ran her fingers over the smooth skin of her neck one day and felt a bump at the precise spot where the handsome, shirtless hero on the cover of a romance novel typically kisses the object of his affection. Tom wasn’t worried: “I come from a bumpy family.”
But this particular bump didn’t go away — it grew and changed shape until “one day it felt like it had legs” — and her primary care physician ordered a biopsy. Tom’s cell phone rang on a September evening when she was visiting her parents in San Francisco; she took the doctor’s call in the dark dining room, away from the clatter of dishes and pans and the laughter of her small children in the kitchen.
The ominous report sprang from her phone: “You have lymphoma.”
“What’s lymphoma?” Tom asked, swallowing hard as a lesson in medical terminology was delivered. She heard cancer, lymphatic cells, lymph nodes. “What are lymph nodes?” she whispered violently. “Can we just cut it out?”
After she hung up, Tom approached the kitchen doorway and stared at her mom before breaking down. “This wasn’t my life, this wasn’t me,” she recalls thinking. And: “Oh, God, I’m going to die.” She was 37 years old.
Cancer is considered a disease of older people: According to NCI data, the median age for cancer diagnosis is 66. Yet more than 40 percent of cancers occur in adults under the age of 65 — which means that many people, like Tom, could have decades of post-cancer living. And post-cancer coping.
Cancer survivors face a plethora of health consequences: Cancer and the various treatments often leave in their wake pain, fatigue, organ damage, sleep disruption, sexual dysfunction, fertility issues, limited mobility and cognitive disarray, such as memory difficulties. Some survivors experience difficulty completing everyday tasks (treatment-related neuropathy in her hands, Tom says, causes her to “write like an old lady”); some, like Tom, who left a position at computer services company Netscape shortly after her first cancer experience, find themselves unable to resume work. (A recent study in the Journal of Health Economics showed that two to six years after diagnosis, survivors are less likely to be employed than their healthy adult counterparts.)
The problems can linger. According to a Northwestern University survivor study presented at the American Society of Clinical Oncology annual meeting in June, many survivors experience symptoms three to five years after treatment ends. The most common health issues reported were fatigue (16 percent), disturbed sleep (15 percent), cognitive difficulties (13 percent) and pain (13 percent). “We were surprised to see how prevalent these symptoms still are,” study co-investigator Lynne Wagner, PhD, commented at the time.
“You’re done and you feel you should be happy but in reality ... you feel like you’re on your own.”
Survivors also face an increased risk of getting other cancers: Roughly 16 percent of new incidences each year are in people who have had a previous cancer. And radiation and chemotherapy are known to increase a patient’s risk of heart problems. Indeed, as Kevin Oeffinger, MD, director of the Adult Long-Term Follow-Up Program at Memorial Sloan-Kettering, points out, “Most women who have breast cancer will be more likely to die of cardiac disease than their cancer.”
The disease plays such a large role in a patient’s physical well-being that Oeffinger, who has done extensive work on survivorship, refers to the cancer experience as “a looking glass through which all future health and illness behaviors of the survivor must be interpreted.”
The treatment the first time around, Tom reminisces, wasn’t terribly taxing. “I didn’t have too many symptoms; I was tired, but I wasn’t doing badly,” she tells me in a cozy coffee shop on a cool, wet spring afternoon. “I glided right through it. I like to say I had ‘cancer lite.’”
Tom leans forward, pauses, blinks. “If I’m being totally honest, I don’t think I did it right.”
It wasn’t that she didn’t follow her doctor’s advice or show up for her appointments, but she felt, in a way, that she hadn’t suffered enough. “Cancer is supposed to be horrible, and the first time was not that,” she says. She thinks that’s why she wasn’t very surprised when her remission came to a halt after 13 months. Her doctor discovered another lump, and sent her to Stanford for care.
“I came here and they wanted me to have a bone marrow transplant, chemotherapy and radiation,” she recalls. “I wanted it out of my body completely — I would have given it the kitchen sink if I could. But it was the hardest thing I’ve ever done. The treatment took me down to zero.”
The experience also affected her family life — her husband, Gerry, became the primary caregiver for their children, then “still in the single-digit ages” — and her family’s finances. She had been the breadwinner of her household but knew she couldn’t return to a demanding corporate job after this experience. “Cancer treatment turns your whole life upside down,” says Gerry Tom.
Shariann experienced emotional turbulence, as well. She couldn’t help but question herself and her strength both during and after her cancer’s repeat performance. “I asked, ‘Am I less of a person because of this? What did I do wrong?’”
She had a lot of doubt, she says, about her strength and ability to move on.
It’s counterintuitive that someone who just overcame the most grueling experience of his or her life should be in such a dark place: One would think a former patient would feel like Superman or Wonder Woman. (“I got through cancer. I can get through anything!”)
But those who work closely with survivors call the end of the treatment the second-worst time in a patient’s experience — the worst being the diagnosis. Studies have shown that depression affects 25 percent of cancer survivors. “You’re done and you should feel happy but in reality … you feel like you’re on your own,” says Oxana Palesh, PhD, director of survivorship research at the Stanford Cancer Institute.
A big reason for this is that once they reach survivor status, patients often lose their contacts and their routine. Most cancer patients have a built-in support network — the doctors and nurses who coordinate and carry out their care and cheer with them when the tests come back, and the relatives and friends who keep them company during the IV drip of chemotherapy and fold their laundry when their arms are too weak. This network can vanish literally overnight.
And former patients often find themselves anxious and fearful about their future and uncertain over what to do with post-cancer life. “My sole job was to take care of myself, to get myself through treatment, to stay alive,” explains Tom. After treatment, she thought, “‘Now what do I do?’ That’s the hardest part of the cancer journey.”
Over the past two decades, nurse practitioner Kelly Bugos, manager of the Stanford Cancer Survivorship Program, has seen people struggle with resuming their familial and societal roles when their intensive therapy ends. Often, she says, they grieve for the loss they’ve experienced — loss of energy, innate health, time and finances.
Sleep was Tom’s closest friend during her second cancer treatment: While undergoing the bone marrow transplant and chemotherapy, she would spend up to 20 hours a day in bed. She describes the fatigue as bone-wrenching.
Her husband, wanting to help and wanting her to rest, kept their two active children out of the house as much as possible — taking them to their grandparents’, the zoo, the mall. But the quiet house made Tom feel isolated and, in retrospect, she says it wasn’t a good idea for her or the kids. “I missed them, and it made it scarier for them because they didn’t get to see me,” she says.
Despite the fatigue and loneliness, Tom did her best to keep her eye on the prize, thinking constantly of getting the cancer out of her body. “We both felt that we were going to beat this and we were going to move on,” Gerry Tom says. But his wife couldn’t muster the emotional energy to think much about what “moving on” would look like.
When the treatment was over, it took a year before she stopped taking daily naps, before she felt physically ready to re-enter the world. “It’s not like the treatment ends and the pain stops — it doesn’t happen like that,” she sighs.
Instead, she inched her way back to her life.
In its 2005 report, From Cancer Patient to Cancer Survivor: Lost in Translation, the Institute of Medicine called the transition from active treatment to post-treatment care “critical to long-term health” of cancer survivors. Yet, the transition is not a smooth one for many — some would argue most — cancer patients.
The majority of survivors return to their place of treatment for routine check-ups; according to Oeffinger, it’s common for patients to have fairly close follow-up in the first few years before gradually slipping away and disappearing into their new, post-cancer reality.
And even the initial follow-up might not be as complete as necessary. Cancer patients are often treated by a team of clinicians (oncologist, surgeon, radiologist and other medical professionals) but then monitored in the post-cancer era by just one person — who may not have all the details of that patient’s experience.
The IOM report identified this fragmented and poorly coordinated cancer care system as a major barrier to good survivorship care, along with a lack of guidance on the necessary tests and services that should be made available to patients. How often should a colon cancer patient be screened for recurrence? At what point is it safe for a patient with advanced breast cancer to transition fully to the care of her primary care physician? What therapies should be made available to those patients suffering from persistent insomnia? And who in the health-care system should be responsible for coordinating survivorship care? No clear answers exist for these types of questions. The IOM calls for research to answer them.
The National Cancer Institute agrees; in an effort to promote the science of cancer survivorship, it created in 1996 the office that Rowland heads. Rowland reports that between 1998 to 2007, the number of survivorship grants overseen by her office rose from 9 to 127 — a 14-fold increase — and continues to climb today, albeit more slowly. And at Stanford, Palesh was brought in last year specifically to study issues facing some survivors, such as fatigue, cognitive dysfunction and sleep disruption.
Still, it can be a challenge to get researchers to focus on this less-than-sexy line, points out Sarah Donaldson, MD, a Stanford oncologist and co-author of the IOM report. “You’re not going to be awarded the Nobel Prize for studying late effects,” she says.
Tom thought she had this thing beat after the first recurrence. But her cancer had other plans: A spot was discovered in her pelvic region in 2003 and, during a routine follow-up two years later, she was told there was a spot on her chest.
“How many times can I go through this?” she remembers asking her Stanford oncologist shortly after her fourth diagnosis. “As many as you do,” came the answer.
And so, she stayed positive — believing, her husband says, that “if your perspective is that there’s a chance for survival, the chance will be there.” And her chances wound up being good.
Tom knows she’s one of the lucky ones: She received good care, got through each recurrence and continues to be monitored closely by her oncologist. But she still feels that some sort of bridge — perhaps in the form of a written plan — should have been provided to help her navigate life post-treatment.
As it was, she was sent off with nothing but an appointment card. She experienced firsthand the fact, as Gerry Tom put it, that “there’s no real exit strategy for patients.”
As director of the Stanford Cancer Institute and a practicing oncologist, Beverly Mitchell, MD, has heard from many patients about the difficulty of entering into the post-treatment world. “They’re in remission and they feel like they’ve been let loose without plan or goal; it’s a difficult time,” she says. “We need the transition to be made with the patient feeling empowered and in control.”
One of the best ways to empower patients and help their future clinicians is to arm patients with a “survivorship care” plan. That’s the view of the IOM panel, which outlined what such a plan would include: detailed information on the patient’s disease, treatment and possible consequences; timing of recommended follow-up visits; tips on maintaining a healthy lifestyle; and resources on psychological and support services. Such a plan, ideally, would go to the patient and his or her primary care physician and would help guide clinical care for the rest of the survivor’s life.
In an ideal world, Rowland says, a physician or other health-care professional would sit down with the outgoing patient and recap what he’s been through, assess lingering problems and talk about the future. “This is what we call a teachable moment — a time when people are willing to make changes in their life,” she says.
Many organizations are already doing this in various ways. UCLA’s Ganz describes some models that work: At a large academic medical institution, a nurse practitioner in a dedicated survivor clinic could meet with the patient at the end of treatment and then manage follow-up care. At a community clinic, a nurse navigator could help patients with post-treatment issues; in a managed-care medical group, the primary care physician could get the survivorship plan from the oncologist and oversee post-cancer monitoring.
At Stanford, a planning committee — of which several survivor advocates are a part — recently developed a program to promote physical, psychological and social well-being among cancer survivors. It includes a research component headed by Palesh and Stanford psychiatrist David Spiegel, MD, who has spent much of his career studying the psychosocial effects of cancer and how to treat them; a survivorship care clinic; and a wellness piece that builds on services that have long been offered through the Stanford Cancer Supportive Care Program, led by nurse Holly Gautier and the Stanford Center for Integrative Medicine. Those services include such things as psychotherapy, hypnosis, mindfulness training, acupuncture and therapeutic massage.
“As an institution, we plan to provide the resources to help patients transition from cancer therapy to wellness,” explains Bugos, who leads the clinical program development along with Douglas Blayney, MD, the Ann & John Doerr Medical Director of the Stanford Clinical Cancer Center.
Among the committee’s other work: investigating ways to provide a survivorship plan and to partner with other members of a survivor’s health-care team, and planning a June 2012 community conference on survivorship issues — a collaboration with the Cancer Prevention Institute of California and the Stanford Health Library.
A remission isn’t like a graduation, in which a life phase officially, and permanently, closes. Which is probably why Tom didn’t initially celebrate the end of her last treatment.
But the days on the calendar slipped by, her children became taller and her new business — she became a life coach specializing in work with cancer patients — steadily grew. And with each follow-up doctor’s visit, she found herself in new territory: She had never before been able to say it had been three, or four or five years since her last treatment. “I wondered, then, if I should celebrate,” she says. “Or is it too late now?”
It wasn’t: One week after we met, Tom and her family, including her two children — now 20 and 17 — took a seven-day cruise to the western Caribbean. The getaway was in honor of her 50th birthday and the fact that she was five years cancer-free.
But five years hardly means her cancer experience is long gone, or long forgotten. Tom has lingering side effects from the treatment, she’s at an increased risk of heart disease and she’s under strict orders to exercise regularly and cut out red meat. Plus, she worries.
Tom had a dream right before we met. “It was one of those dreams where you’re sobbing in your sleep because it feels so real,” she tells me quietly. “They were taking my blood to see if the cancer was back.”
She pauses. “So, do I still get scared about the cancer coming back?
No one disagrees that survivorship can be extremely difficult. But not all the consequences of a cancer diagnosis are negative.
Sloan-Kettering’s Oeffinger tells his patients that a post-cancer life can be a very healthful one. “If I influence lifestyle behaviors — making sure they don’t smoke and get on a low-fat diet — and do some sort of surveillance plan, my patients have the chance of living healthier, longer lives than their peers,” he explains. “It’s not all grim.”
And surviving cancer can drive patients to live more meaningful lives. Many of Spiegel’s patients tell him that in many ways life is better. “They trivialize the trivial,” he says. “Cancer teaches about what matters in life.”
As for Tom, she looks healthy and happy — no one who spotted us in the coffee shop that day could have detected any signs of past sickness or struggle. If given the choice, Tom wouldn’t have asked to battle cancer four times, but she acknowledges that her experience has helped shape her. “It’s given me my life’s work,” she explains.
And, through life-coaching of people with cancer and volunteer work with patient groups, she is determined to make survivorship easier, to help patients emerge from the “shadow of cancer.” She wants to ensure that those who pass through their own sliding doors aren’t lost on the other side.