“Some patients have a simple diagnosis, sail through treatment and return to their everyday lives. But for most of us, cancer is a game changer that impacts every aspect of who we are and who we’ll become during and after our cancer journey.”
When Bill Baun finished the 15 rounds of radiation needed to treat his prostate cancer this summer, the mood was celebratory. Onlookers applauded and cheered as he rang the brass bell in MD Anderson’s Radiation Oncology Department — a longstanding tradition that signals the end of treatment.
But in some ways, the most challenging part of the cancer experience begins when treatment is done.
“Cancer changes everything in your life,” says Baun, who’s not only a patient but also a wellness consultant at MD Anderson. His role is to help patients cope with their diagnoses and live life as fully as possible.
During treatment, patients are surrounded by the world’s best army of cancer fighters. Brilliant medical professionals and supportive family and friends work tirelessly to help them heal.
“But when treatment ends, the constant flood of doctors’ appointments, medical tests and phone calls from concerned family and friends dwindles to a slow trickle,” Baun says. “Patients who are done with cancer care sometimes feel a void and struggle to figure out who they are.”
A growing body of evidence suggests that cancer patients continue to wrestle with medical, financial and psychological issues long after treatment ends. For some, the experience is transformative and provides a renewed sense of purpose and appreciation for life. But many who try to rebuild their lives after something as devastating as cancer find the experience to be deeply disorienting and destabilizing, says Baun, who likens the experience to post-traumatic shock.
“You may no longer be sick, but you’re not well,” he says. “You need help navigating the road back.”
The survivorship movement
One of the first medical professionals to recognize this unmet need was Fitzhugh Mullan, M.D., a pediatrician who helped form the National Coalition for Cancer Survivorship advocacy group in the 1980s. Having survived cancer himself, Mullan recognized that the unmet physical, emotional and psychosocial needs of survivors needed to be addressed by the cancer community.
In an essay in the New England Journal of Medicine, he shared his own cancer experience and wrote “survivorship begins from the moment of diagnosis — because that is when cancer patients must first confront their mortality — and lasts for the rest of a patient’s life.”
Mullan described what it’s like for patients to pass through “the three seasons of survival”: diagnosis and treatment, watchful waiting after treatment ends while hoping cancer doesn’t return, and permanent survival. The latter being a nebulous term that generally describes those who are cancer-free five years after diagnosis.
Since then, the definition of survivorship has expanded to include those living long-term with cancer with the help of new treatments that keep tumors at bay, and those who have cancer that goes away and comes back, sometimes more than once.
“A number of patients at MD Anderson fall into those categories,” says Paula Lewis-Patterson, D.N.P., executive director of Cancer Survivorship at MD Anderson.
Like many new concepts in medicine, Mullan’s survivorship movement was slow to gain acceptance. Numerous studies were published over the years to prove its worth, and finally in 2006 the Institute of Medicine issued a report recommending that every cancer patient receive a plan that is individualized to his or her care at the end of treatment.
To promote survivorship, MD Anderson regularly offers conferences for health care professionals, funding for survivorship studies, and educational and recreational activities for patients and caregivers.
“An increasing number of cancer treatment centers have now begun offering post-treatment care and support groups for survivors,” Lewis-Patterson says. “But many patients, especially in rural areas, continue to fall through the cracks.”
It’s not over when it’s over
MD Anderson patients who show no evidence of cancer are monitored in 12 survivorship clinics, each one specializing in a particular type of the disease. Nurse practitioners manage the clinics and check for recurrence of cancer, lingering side effects or signs of psychological or emotional stress. When needed, patients are referred to physicians, nutritionists, social workers or psychologists.
The American Cancer Society estimates 14.5 million cancer survivors live in the U.S. today. With new treatments that extend lives, that number is expected to rise to 19 million by 2024.
“We have a responsibility,” says Lewis-Patterson, “to step up our efforts and meet the needs of this rapidly growing population.”
Cancer is a two-part journey, says Alma Rodriguez, M.D., vice president of Medical Affairs at MD Anderson.
“It’s physical, it’s emotional, and it’s never over when treatment’s over,” says Rodriguez, who developed and oversees the cancer center’s Survivorship Program.
On the physical side, chemo, radiation and other treatments can cause cardiac problems, reduced lung capacity, nerve damage, infertility, debilitating fatigue and a host of other problems years after treatment ends. The impact of these late effects, as they are called, can vary and depend on how old the patient was when diagnosed, frequency and dosage of chemo and radiation, parts of the body exposed, types of surgery performed and types of medication taken, as well as the severity of the cancer itself.
Depression may take over as survivors face life with a body image altered by surgery or ongoing physical limitations. Patients may struggle financially if they’re too fatigued to hold down a steady job or if their coffers have been drained by costly out-of-pocket expenses not covered by insurance. Relationships with spouses may suffer if sexual function is lost. Survivors often blame themselves for these challenges and suffer crushing guilt.
“The good news is there are many ways to rally your resilience,” says MaryBeth Baun, who, like her husband, Bill, is a cancer survivor and wellness coach. After treatment for stage 2 breast cancer, she was left with nerve and joint pain, “monster” hot flashes and chills, and foggy thinking and memory problems.
Months of physical and occupational therapy, faith and patience have helped Baun cope with her symptoms and regain function. It’s also helped to have an understanding husband and a new puppy who adds joy to her days.
Perhaps the greatest concern shared by all survivors is the fear of relapse. When treatment ends, “the wait” begins. Patients whose cancer is in remission wait for the other shoe to drop, and worry that an ache or pain, or even a nagging cough, is a sign the cancer has returned.
In the wee hours of the night, some survivors lay awake, contemplating what they’ll do if the cancer comes back. Bill Baun counsels his clients to transform that fear into energy-producing fuel.
“You know that trip you’ve been planning to take someday? Do it now. Live in the present. Start living your dreams.”
Baun calls himself a cancer “thriver,” not a cancer survivor.
“I’m much more aware of my mortality on a minute-by-minute basis than I ever was,” he says. “Realizing your future may be foreshortened expands your present. There’s a sense of preciousness of the moment. The sky is bluer, flowers smell sweeter, time with family is more cherished. I wake up each morning grateful for another day and mindful of the gifts I’ve been given.”
The new cancer survivors
Baun, like many survivors, is living with advanced cancer. Until the introduction of radiation therapy and chemotherapy, advanced cancer was a veritable death sentence. But new and innovative treatments in recent years have radically improved the outlook for many cancer patients, and fundamentally changed what it means and feels like to have the disease.
“In many cases, we’ve seen cancer turn from a deadly illness into something that patients live with and manage for many years,” says Rodriguez.
Cancer for these patients is a chronic illness. They’ve far outlasted the prognosis they were handed years ago, and are living beyond limits. Their tumors are controlled, but not eliminated. Or, like Baun, whose cancer was diagnosed eight years ago, their tumors go through continuous cycles of remission and recurrence.
“There’s a knack to living with the unknown,” says Baun. “I think about how lucky I am to be alive instead of how unlucky I am to have cancer.”
Patients with chronic cancer take pills to keep tumors at bay, and have monthly blood tests and imaging scans. This limbo state can be exhausting. Balancing treatment, job and family while living with uncertainty takes a toll.
Yet as researchers learn more about the character of people who are managing their disease for years or even decades, they’re realizing that these long-term survivors are masters at balancing the negative aspects of cancer with the positive ones.
Some people, like Baun, actually flourish. Cancer changes their lives for the better. They get more out of life, and they relish every second.
In their ability to live fully in the present, people in cancer’s limbo send a powerful message to people who are always focused on the imagined future.
“We’re all terminal,” says Baun. “No one lives forever. Starting my day with that thought helps me change my priorities and perspective. I have an intense appreciation for the here and now.”
PASSPORT TO HEALTH
MD Anderson patients are provided with a Passport to Health — a master plan for the patient’s care. The passport includes a history of the patient’s disease; the treating physicians’ names, addresses and phone numbers; a summary of all treatments received; potential late effects that might be caused by the cancer treatments; a schedule of screening tests to monitor for cancer recurrence; a list of lifestyle, behavioral and nutritional guidelines that may help prevent the cancer from returning; and referral to specialists for those patients experiencing physical or emotional problems due to the treatments they received.
“Patients are encouraged to share their passports with their primary care physicians,” says Paula Lewis-Patterson. “This is especially important for patients who live in another city, state or even another country. Our MD Anderson doctors want to keep lines of communication open with patients’ doctors back home. Our goal is to work together as a team to provide the best possible care.”