San Francisco Chronicle: Cancer survivor programs taking root
It's been more than eight years since Janelle O'Malley was diagnosed at age 49 with a rare form of ovarian cancer, but she still struggles with sleep problems and other side effects from being thrust into immediate menopause.
Now she has a new way of attacking those problems.
O'Malley has become one of the first patients of the Stanford Cancer Institute's new Survivorship Clinic, which opened earlier this month. The nurse-led clinic focuses on long-term gynecological cancer survivors who no longer have to be seen regularly by their oncologists, and may expand to include patients with other forms of cancer.
O'Malley, who lives in Palo Alto, admitted she found "graduating" from her oncologist to be frightening at first. But that's faded.
"It felt like the safety net was removed, but that didn't last long," said O'Malley, who's already used some of the nutrition and exercise components of the program.
"This is just a different kind of safety net."
With the new program, Stanford joins a small but growing number of hospitals that have developed comprehensive programs to help patients with the medical and psychological aftereffects of cancer.
Hospitals have long offered cancer survivors various services such as post-treatment support groups, diet and wellness classes, or meditation. But in recent years, they've begun to establish formal programs with dedicated staff - typically nurses - who make sure patients' physical and emotional needs are met well beyond their last chemotherapy or radiation appointment.
The need for long-term follow-up care has grown with the number of people surviving their disease. About 12 million Americans are living with a current or previous cancer diagnosis, a number that has grown from about 3 million in the early 1970s.
Patients routinely feel anxious, depressed and neglected, adrift in the post-treatment world without the support of their health practitioners and the routine of actively fighting their disease.
They may experience long-term medical side effects, fear of their cancer returning and difficulty adjusting to life after the trauma of a cancer diagnosis. Ongoing issues can include pain, fatigue, sleep problems and sexual side effects.
"For many years, people were focused on dealing with cancer as an acute crisis. Now, as cancer is becoming more of a chronic condition, it is becoming more important to have the survivorship component," said Margaret Stauffer, program director for the Cancer Support Community of the San Francisco Bay Area.
Much of the momentum behind the growth in survivorship programs can be attributed to the Institute of Medicine's 2005 report, "From Cancer Patient to Cancer Survivor: Lost in Transition," which put a critical spotlight on the lack of post-treatment help available to patients.
A few medical centers, including UCLA's Jonsson Comprehensive Medical Center and Memorial Sloan-Kettering Cancer Center in New York, have been early adopters of survivorship programs. Patients and advocacy groups have also pushed for more services focusing on life after cancer.
"It's time we move from the frame of lamenting we're not providing patients with a survivorship care plan to taking action," said Dr. Stephen Edge, chairman of the Commission on Cancer of the American College of Surgeons, which this year added survivorship programs to hospital certification requirements to be a cancer center in 2015.
"It's been too long that all of us in our profession have said, 'That's a great idea,' " he said. "But when push comes to shove, we don't do it well."
The Bay Area is home to a handful of hospital-based survivorship programs. While some focus on patients after they've just completed treatment, others take a longer-view approach.
In Stanford's program, which is modeled after Sloan-Kettering, patients move to the survivorship clinic after three-month and six-month follow-up appointments with their oncologists are extended to a year. The clinic, in the Stanford Women's Cancer Center, is staffed by nurse-practitioners. Research on the long-term impact of cancer is also a key component to the program.
'Never felt worse'
At John Muir Health, which has hospitals in Walnut Creek and Concord, the primary focus is on the immediate aftermath of treatment.
The program, which started in September 2010 for breast cancer patients, just expanded to include colorectal patients and expects to be open to all cancer patients this summer. It's led by an oncology nurse "navigator" who guides patients and refers them to additional help if needed.
John Muir nurse Rachelle Portner created the program after being diagnosed with breast cancer at 41. She said she didn't want other patients to go through what she did after she finished her treatments in 2007.
"I never felt worse in my life. I thought maybe I just beat this cancer, but I never felt more helpless," Portner said. Medical practitioners are "trained to cure your cancer, but then they don't know what to do with you after that."
One of her patients, Malayni Wilkinson, likened the experience of going through diagnosis and therapy to being in the military.
"You're over there and you're fighting on the front lines," said Wilkinson, 42, of Discovery Bay, who just finished a year of breast cancer treatments last month. "It's kind of like that when you finish this battle with cancer. All of sudden you wake up and say, 'What do I do with myself?' "
Dr. David Spiegel, director of Stanford's Center for Integrative Medicine, said it's important for long-term cancer survivors to focus on their overall health - not just their disease.
"Half of all people diagnosed with cancer will live to die of something else," he said. "That means that 'something else' is very important."
Hospital-based cancer survivorship programs
The following medical centers have developed comprehensive programs for helping cancer patients with medical and psychological issues of the post-treatment experience:
Stanford Cancer Institute: Stanford's Survivorship Clinic, which opened this month, focuses on gynecological cancer survivors. Nurse-practitioners assess the patient's needs and refer to the appropriate physician if necessary.
UCSF Medical Center: UCSF started its Cancer Survivorship Program for breast cancer patients in 2007.
John Muir Health: John Muir's hospitals have a dedicated survivorship nurse "navigator" who helps guide patients through their post-treatment experience. The program started in 2010 with breast cancer patients and expanded this month to include colorectal cancer patients.
Palo Alto Medical Foundation: The foundation's program Living Beyond Cancer helps patients navigate issues such as nutritional counseling, complementary therapy and mental health.
ValleyCare Health System: ValleyCare's Regional Cancer Center officially started the survivorship part of its Cancer Wellness and Survivorship Program in 2010 and is hiring a second nurse this month to expand.
National Coalition for Cancer Survivorship
Cancer Support Community: Formerly the Wellness Community
Livestrong Survivorship Centers of Excellence