With her patients living longer than ever before, pediatric oncologist Lisa Diller, MD, helps lead a growing survivorship program for children and adults focusing on the myriad physical and psychological challenges that come in the years and decades after cancer treatment.
When she first entered oncology, however, the survivorship landscape was far less understood.
Diller often tells the story of a 30-year-old patient she met in the late 1980s. The patient was complaining of heartburn and the antacid pills his primary-care physician had recommended were not helping. He wondered if his current pain might be connected to the Hodgkin lymphoma he was treated for as a teenager.
There was indeed a connection. The man had developed a malignant stomach tumor from the radiation he received during his lymphoma treatment. By the time Diller and her Dana-Farber colleagues discovered this, however, there was no chance for the man's recovery, and he died not long after.
"Today we rarely treat someone for heartburn without first doing an endoscopy if they have had radiation to that area, but we didn't know about the dangers of radiation and second cancers then," says Diller.
"Still, there was a part of me that thought, 'There must be a way to make sure all caregivers, including primary-care physicians, interpret symptoms differently in patients who have had cancer before.'"
Diller, who now co-directs the Perini Family Survivors' Center at Dana-Farber with Kenneth Miller, MD, shares this experience - which helped prompt the development of the survivorship program here - to underscore the importance of knowing all we can about the after-effects of cancer.
Long acknowledged as a leader in caring for pediatric survivors, Dana-Farber has strengthened its programs for survivors of adult-onset cancers as well, while directing new research, clinical programs, and outreach efforts focusing on the long-term impact of the disease on people of all ages.
This increased attention on survivorship is driven by a growing recognition of what challenges can come after treatment, along with a welcome reality: many cancer patients are living longer.
"Cancer survivors will tell you that once their hair grows back, everybody thinks that they are back to normal," says Miller. "But it can take a lot longer to get there - and some issues may never be resolved."
Some of the problems that can emerge soon or long after cancer treatment include a second related or unrelated cancer, cognitive deficits, and infertility, and Dana-Farber has numerous resources in place to help address them.
Visitors to the Perini Center's survivorship clinics often see several specialists in a single visit and can talk to experts in areas such as cardiology (heart), renal (kidney), endocrine (hormone), and gynecological (reproductive) health.
The clinics provide personalized survivorship plans that connect a patient's prior treatment to follow-up recommendations. Such plans help individuals transition smoothly off active therapy.
A community-based collaboration brings survivorship outreach efforts to urban and rural areas throughout Massachusetts and into New Hampshire. And Dana-Farber is addressing health care disparities among adult survivors by bringing its Blum Family Resource Van to local health centers to offer care and teach providers about survivorship.
Dana-Farber also helped form the Consortium for New England Childhood Cancer Survivors, which brings together oncologists, pediatricians, nurses, psychologists, and social workers from different health care organizations to share expertise and advance the quality of services provided to children coming off cancer therapy. The consortium is led by Lisa Kenney, MD, MPH, a Dana-Farber physician based in the Perini Center.
Each child completing active treatment at Dana-Farber, regardless of age, is assigned a doctor and/or nurse from one of two clinics within the Perini Center: the David B. Perini, Jr. Quality of Life Clinic (for childhood-onset survivors), led by Diller; or the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic (specifically for brain tumor survivors), directed by Peter Manley, MD.
Survivors of adult-onset cancers are seen at their request in the center's Lance Armstrong Foundation (LAF) Adult Survivorship Program, led by Miller.
All participating survivors are scheduled for annual check-ups, but many come in to the Perini Center more frequently to seek counseling services, meet with support groups, or take part in clinical trials or other initiatives.
"I've developed a great bond with Jill Brace O'Neill, my nurse [at the Perini Center]," says Liz Olson, LICSW, a 34-year-old geriatric social worker who has been coming to the center since moving to the Boston area in 2000.
"It extends beyond the normal caregiver-patient relationship because she understands everything I'm going through and treats me as a whole person, not just as a cancer survivor."
Olson has endured hearing, peripheral vision, and cognitive losses related to initial treatment for a rare brain tumor at age 8, as well as two more cancer diagnoses in recent years. She credits Brace O'Neill and other Perini Center staff for helping her stay positive - and laughing - through it all.
In addition to annual visits with various specialists, she's taken part in quality-of-life studies, befriended other survivors in support groups, and, as a trained clown, even cheered up Dana-Farber's current infusion patients on a volunteer basis.
Like many survivors who had pediatric-onset cancers, Ed Sudnik has transitioned over time to the Perini Center's adult survivorship clinic, after first being seen in the center's pediatric clinic.
"Each time I went in, they would explain how important it was to stay in shape and eat right, based on all the long-term health risks associated with my past treatment," says Sudnik, 33, who had Hodgkin lymphoma in college.
"After my daughter was born last year, I felt like I'd better buckle down and take things seriously." The Shrewsbury, Mass., business analyst went on a diet, lost 40 pounds in five months, and then ran a 9.3-mile road race, earning nearly $1,500 for Dana-Farber in the process.
Slideshow: Ed Sudnik talks about his change to a healthier lifestyle
"I may have been 'cured' 10 years ago, but I'll never stop thinking about cancer in the back of my head," says Sudnik, who also appreciates the annual status report he receives from the Adult Survivorship Program. "It's great to know the people at Dana-Farber will always be there for me."
Miller says that a major goal for the Adult Survivorship Program is to provide all adult patients with end-of-treatment summaries and care plans they can share with their primary care physicians after completing therapy.
In addition to explaining the intricacies of the particular cancer the patients faced, these documents summarize a patient's diagnosis, as well as the steps and substances included in treatment &ndash such as chemotherapy drugs and other medications. The plans lay out any potential aftereffects, recommend follow-up care, and offer wellness information to help survivors lead healthier lives.
Dana-Farber has long provided its youngest patients with treatment notebooks at the end of active therapy. (Children represent about 10 percent of Dana-Farber's patient population.)
The hope is that such efforts will not only put survivors on the right path, but also help educate primary care physicians who provide the bulk of survivors' long-term care.
A recent study led by Dana-Farber clinical psychologist Sharon Bober, PhD, found that half of 227 academic- and community-based doctors who were surveyed felt that they had inadequate training in the needs of cancer survivors. The study also found that 82 percent of respondents felt the guidelines on survivorship care were not well-defined.
"Primary care physicians are looking for a recurrence, but not everyone knows how to screen for the long-term effects of cancer treatment," says Bober.
"There are great differences in levels of preparedness and confidence, and that's the idea behind providing patients with summaries of their treatment and follow-up care."
Perini Center staff are continuing to expand their understanding and disseminate everything they learn about the growing post-cancer population.
Through Dana-Farber's Project REACH (Research Evaluating After Cancer Health), for example, during each annual clinic visit survivors fill in questionnaires about their physical health, quality of life, and emotional functioning. More than 80 percent of the center's patients express interest in participating, and the result is an efficient, rich resource for studying outcomes of various cancer therapies.
"It's an important method for supporting studies on a variety of survivorship topics," explains Christopher Recklitis, PhD, MPH, director of research and support services at the Perini Center, who leads Project REACH and hopes to have 1,000 survivors enrolled by the end of 2010.
"We can ask questions about topics as varied as depression, sexual health, or cognitive problems, and then we have a subset of patients we can automatically approach for studies in these areas."
To help health providers work with the unique challenges of their patients who have faced cancer, experts in the Perini Center are leading a number of innovative efforts and meeting with others in the field.
Last November, Dana-Farber and Harvard Medical School's Department of Continuing Education hosted a national physician conference conceived and directed by Miller.
Designed to help clinicians learn new tools and strategies for helping survivors live well beyond cancer, it drew a "sellout" crowd of 250 colleagues — a great indication of how far the Perini Center has come.
"Thanks to what we have learned about the experience of cancer survivors," says Diller, "today we can make treatment decisions based not only on the likelihood of cure, but also on the likelihood of late-onset diseases and issues.
"We have expertise in a diverse range of areas focused on helping survivors live longer, better lives."
That's good news for center visitors like Ed Sudnik, who looks forward to spending more time with his wife and daughter — and less time worrying about his cancer — in the days to come.
Paths of Progress Spring/Summer 2010 Table of Contents
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