Susan Leigh was a seasoned U.S. Army nurse when she returned home from the Vietnam War in 1972, not yet knowing that she was about to embark on an even more challenging tour of duty.
Soon after her arrival, she was diagnosed with Hodgkin's disease cancer of the lymphatic system. She was only 24. And although cancer cure rates were dismal in the early 1970s, Leigh lived, and her experiences took her on a journey from patient to survivor, and finally to advocate for other cancer survivors, a role that continues to motivate and shape her today.
In 1960, only 25 percent of patients survived five years or more. As recently as the 1970s, the term "cancer survivor" was used by the insurance industry to describe the loved ones left behind after a patient died.
Today, about 65 percent of adults diagnosed with cancer will be alive in five years. Almost 80 percent of childhood cancer survivors will be alive after 10 years. By 2020, there will be 2 million new cancer survivors each year.
But as the ranks of cancer survivors grow, the medical and research communities have not kept the same pace with the needs of its surviving patients. Success on the treatment front has far outpaced survivorship research. While research investigating the problems of survivors has increased in the past five years, most survivors are often left alone without expert medical guidance to face the physical and psychological effects of cancer and its treatment.
Increasingly, many more patients no longer have to face their journey of survival alone. Major cancer centers best known for treating patients are now also focusing on survivors. Drawing from long-term care models in pediatric oncology and bone-marrow transplantation, physicians and researchers are targeting the lifelong needs of their patients. And celebrity survivors such as Lance Armstrong have focused attention on life after cancer and raised millions of dollars for research.
But we got here because patients didn't want to face the long journey alone. With their families, survivors remain at the forefront of addressing long-term care issues.
In the desert of New Mexico, a small group of cancer survivors gathered to share their common experiences with cancer and its aftermath. The year was 1986. With Leigh and Mullan leading the effort, the gathering led to the creation of the National Coalition for Cancer Survivorship, the first alumni association of sorts for cancer survivors and their loved ones. The group defined the continuum of survival not simply as being cured, but as living with, through and beyond cancer.
"There was a support network to help one survive treatment, but there were no guidelines on how to survive survival," Leigh said. Creation of the coalition was one of the first prominent steps in a new era of solutions driven by cancer survivors themselves.
Then, in 1996, the National Cancer Institute created the Office of Cancer Survivorship, as it became more evident that there was a paucity of education and clinical care for cancer survivors and a lack of dedicated research.
"It was clear by the early '90s that unless there was dedicated research money for survivors, this group of patients would continue to be at the bottom of the pecking order for dollars," said Dr. Debra Friedman, director of the Fred Hutchinson Cancer Research Center Survivorship Program. Since the opening of the Office of Cancer Survivorship, the amount of cancer-survivorship research has increased exponentially.
The field of survivorship has been consumer-driven, Friedman said, with former patients speaking up about their issues to force changes.
"As more and more patients survived cancer, there was this growing group of people who said, 'Wait. A cure is not enough. We're cured, but we have all of these issues related to the cancer and its treatment. Who's going to look at this, and what can we do about it?'" Friedman said. "They started asking very important questions. 'What kind of care do I need to move forward? What can I do about some of the symptoms I have after my cancer treatment? Who do I go to with these questions? Very importantly is there anything that could be done to either ameliorate the symptoms now, could we have done something else during treatment so I'm not left with these long-term effects now?' Survivors brought these questions to us."
One of these survivors is Lance Armstrong, the seven-time Tour de France cycling champion, who pushed survivorship issues to the forefront with the same determination he exhibited in his career. Armstrong, who gained worldwide admiration for his own fight against testicular cancer, has refocused that attention on cancer survivors.
Before he even knew if he would overcome the disease, he founded his namesake foundation to inspire and empower people affected by cancer, helping them live on their own terms.
In a 2007 speech before Congress advocating for increased funding for survivorship care and research, Armstrong said, "We refuse to accept that the most vulnerable Americans often suffer the greatest cancer burden. We have a moral obligation to ensure that all Americans benefit from what we already know about preventing and surviving cancer."
As Armstrong's foundation sought partners to help accelerate progress in the field of cancer survivorship, it chose the Hutchinson Center because of its strong history of cancer research and its specialized oncology programs, and long-term care of bone-marrow transplant patients.
The Lance Armstrong Foundation gave the Hutchinson Center $1.7 million in 2006 to launch its comprehensive cancer-survivorship program, one of eight in the United States. As a member of the LIVESTRONG Survivorship Center of Excellence Network, the Hutchinson Center Survivorship Program provides clinical care, patient education and access to research for pediatric and adult survivors of all types of cancer. The effort integrated the Center's existing cancer-survivor programs and expanded the scope of services and research.
Armstrong's group has also funded smaller community-based programs in many other U.S. cities. "The Lance Armstrong Foundation is really at the forefront of creating models for delivering care in all different types of communities, since many people can't get to the comprehensive cancer centers like Fred Hutchinson," said Leigh, who serves on the foundation's steering committee.
These public and private groups, along with others like the Centers for Disease Control and Prevention and the Institute of Medicine, have collaborated to create several major studies and reports in the last decade outlining cancer survivors' needs.
How children with cancer are monitored after treatment has become a benchmark for good practices, and many adult survivors have wondered when oncologists would adapt models of follow-up and surveillance used in pediatric oncology.
By the late 1970s, pediatric oncologists recognized that with growing cure rates came many other medical and psychosocial issues in some cases, almost as bad as the cancer itself.
Programs were developed in the early 1980s to respond to this spectrum of needs in young survivors. After their cancer is in remission, pediatric patients meet with cancer specialists for regular exams, tests, a review of previous therapies and potential long-term effects, guidance for concerns, ways to improve quality of life and future health, and referrals to specialists for help with emotional issues. All childhood cancer centers have some type of pediatric survivorship program.
Cancer survivor Melissa Van Loo enjoys the Skagit Valley tulip fields with her husband, Jarren, and daughter Ellie.
After treatment, Van Loo was enrolled in the hospital's ACCESS (After Cancer Care Ends Survivorship Starts) program, where her medical and cancer history was reviewed, her physical and psychosocial needs assessed, and follow-up care was recommended. When she grew out of the pediatric program, she switched to the same follow-up care through the Hutchinson Center's Survivorship Program.
"I had a little bit of heart damage from the chemo and my body aches a bit, but I've been very fortunate not to have any super huge concerns," said Van Loo, who has been cancer-free for nine years. "I've always had these connections in the medical community and have known where to turn. But this level of support seems different than what other cancer survivors describe."
In the world of bone-marrow transplantation, the same evolution of cure to lifelong care happened for adults and children. Initially, very few patients survived their transplants, but as survival improved, leaders like the Hutchinson Center created programs to meet the needs of transplant survivors. The Center's Long-Term Follow-Up Program has been in place for more than 30 years, longer than any other in the world.
But the largest area of oncology is not transplantation or pediatric oncology. It's people treated by medical oncologists with conventional chemotherapy and radiation therapy at community hospitals and clinics. That accounts for 90 percent of adults worldwide in treatment for cancer, making it much harder to organize, follow and treat patients long term.
Though most community-based oncologists intend to follow their patients for life, that precept is more theoretical than practical. The number of oncologists is declining, even as the number of survivors continues to grow.
"So most people treated by community providers have limited access to dedicated survivorship care," Friedman said. "Oncologists and primary care providers are over-burdened and survivors are lost somewhere in the middle. If they're lucky enough to be someplace where there's a cancer survivorship program like ours, they're going to get state-of-the-art care, but the majority of patients in this country don't even know that such a thing exists or what they should be asking."
There is no cookie-cutter method for following all cancer survivors. In any group of survivors, there's a range of needs depending on the type of cancer, the treatment and response, age at diagnosis, and any complications experienced. Primary care physicians often don't have cancer expertise. That's why specialized programs are needed to deal with these patients.
Leigh said many survivors are generally aware of potential risks down the road, but the end of treatment is celebrated and they're sent on their way.
"After therapy, we don't need a pat on the back; we need a conversation, a written plan," she said. "We don't want to wait and just see if the disease comes back. We want to know how to reduce our risks and be well. People need help to get well and stay well after cancer."
"You walk out the oncologist's door and think, 'Oh my gosh, how am I going to know if it's coming back? What symptoms am I supposed to look for? What does this headache or bruising mean, what does this cough signal?' It's a huge challenge to trust your body again and to know whether such symptoms are serious or ordinary. Even though people may not want to know, not knowing can be very dangerous."
For Leigh, many of her fears became reality. In her 37 years as a survivor, she's had treatment-related breast cancer, bladder cancer and a host of other side effects including premature menopause, early osteoporosis, pulmonary fibrosis and atrophy of her neck and upper chest muscles. Still, she considers herself lucky. "All of my non-cancerous conditions are essentially manageable and a fair trade-off for my extra years of life," she said.
Caring for the body is only one aspect of survivorship care. Many survivors are burdened by psychological and social issues long after they're physically healed. A holistic approach involves both medical care and attention to psychosocial and behavioral issues like health care practices, lifestyle issues such as nutrition and exercise, fatigue, depression, anxiety and sexuality.
Syrjala said worry is the most common long-term effect, regardless of diagnosis or treatment. Unfortunately, there have been inadequate dollars to study psychological survivorship issues. "It's much easier to say you've got a 10 percent risk of cardiac problems than to say you have a 60 percent risk of elevated worry and preoccupation," she said. "These are far more prevalent issues for which we have good treatments, but we haven't made the same level of progress in funding."
Many cancer physicians focus only on the disease. "I guarantee you on a follow-up visit, most oncologists do not ask, 'So tell me, is your sex life OK?' They just don't have the time and expertise to deal with this in a routine follow-up visit," Friedman said. "So we ask about a full spectrum of possible issues and sometimes our survivors say, 'No one's ever asked me that before, but yeah, there is a problem.' We don't have magic bullets, but we can try to help and offer some strategies and referrals to help them troubleshoot their biggest issues."
That approach changed Dick Van Hollebeke's life for the better. When he experienced rectal bleeding 14 years ago, he assumed it was from spending too much time on his bicycle. The then 55-year-old had just pedaled 200 miles and had never felt healthier.
So the Edmonds, Wash., father of six was shocked when his doctor told him he had colorectal cancer. "It almost seemed like a joke," he said. "I was in peak condition and then they tell me I have cancer. I took it seriously, of course, and maybe I was naοve, but there was never any doubt in my mind that I was going to survive this and go on."
Van Hollebeke was cured in about a year's time, but moving on wasn't so easy. Effects from his treatment severely altered his life. Self-employed, he couldn't work for a year and a half.
"Anytime I went anywhere, I had to know where the bathrooms were and had to be prepared to take care of potentially embarrassing problems. Of course I felt appreciative that I was still alive, but my life was not all I hoped it would be."
Van Hollebeke felt dismissed and unsure where to bring his concerns. "It was like the regular medical system said, 'We cured you. You don't have cancer anymore, so goodbye.' I was depressed, and I just thought it was what I had to deal with. I didn't know there was anyone out there who could help me with these issues."
Van Hollebeke saw an ad in 2006 for the Hutchinson Center's Survivorship Program.
"It was the first time I heard someone say that they didn't just want me to be a survivor they wanted me to have a good quality of life."
The specialized program helped Van Hollebeke with dietary changes to lessen his symptoms and, he said, taught him the importance of self-advocacy and the need to direct his own recovery.
Experts agree that designated survivorship programs need to be expanded to better define problems and solutions for both science and clinical care. At the same time, there are components of survivorship care that will and should diffuse into standard oncology care and hopefully, standard primary care. All survivors need a follow-up care plan from their oncologists.
After all, survivorship is not just about if or how long patients live, but also about how well they survive and, hopefully, thrive.
Referring to what she calls the "Lance Armstrong effect," Friedman said, "Everyone doesn't need to beat cancer and go on to win the Tour de France, but people should be able to do what they want to do, whether the goal is raising a family or taking hikes."
Just as important, the experiences of cancer survivors shape oncology's future. "Initially in oncology, the need for a cure led to many treatments that were like big mallets," Friedman said. "But survivors have taught us the importance of balancing efficacy with toxicity. We learn from what we see in long-term survivors and translate that back to the bedside for future therapies. We need regimens that cure as many of our patients as humanly possible, and at the same time, cause the least amount of adverse short-term and long-term effects that's the balance we continually seek as we move forward."