Ed Gardella, a police officer for 31 years, thought he was pretty tough. But then the 70-year old Worcester, Mass. resident was diagnosed with esophageal cancer.
"You never forget that moment, where you were that moment you were told you have cancer," said Gardella. "I never thought I was a particularly brave man, nor did I think I was a coward. I was a police officer, a chief of police, but this disease brings everyone to their knees — no one is tougher than cancer."
Gardella underwent surgery, chemotherapy and radiation at Dana-Farber Cancer Institute in Boston to treat his cancer and now, five and half years later, he is cancer-free. But Gardella says that cancer remains a constant in his life. "You don't just get cancer and get over it."
Advances in cancer care now mean that the majority of people diagnosed with cancer will survive the disease. An estimated 12 million Americans are cancer survivors. This number is expected to nearly double by 2030. More than six out of every 10 adults newly diagnosed with cancer will meet or pass the five year survival mark.
Kenneth Miller, MD, co-director of the Perini Family Survivors' Center at Dana-Farber, says that the transition from cancer patient to cancer survivor can pose numerous challenges.
"Finishing treatment typically is a monumental moment for many patients, but it is also an important turning point," Miller explains. "As cancer survivors, they now have to shift their focus from figuring out how to beat the disease to learning how to adjust to everyday life again — and they often have to do so without the support network they had while on treatment."
There are many issues confronting cancer survivors, including changes in the body after cancer treatment - emotional and physical symptom management; legal rights concerning healthcare and employment; returning to the classroom; finding support groups; maintaining, repairing, or enhancing personal relationships, and pursuing appropriate follow-up care.
Recognizing these unique challenges, Dana-Farber created the David B. Perini, Jr. Quality of Life Clinic in 1993 to provide support and services to survivors of pediatric cancers. This was one of the nation's first such programs and it has served as the model for other institutions.
"It was clear that cancer treatments could have both a short- and long-term impact on children, and there weren't any resources in place to address these health issues," says Lisa Diller, MD, co-director of the Perini Family Survivors' Center. "We knew that we needed to address this, because the survivorship landscape was rapidly changing. As recently as the 1960s childhood cancer was almost always a fatal diagnosis, but today the majority of children diagnosed with cancer can expect to be long-term survivors."
Diller says that greater public and physician awareness about late effects from cancer treatments has resulted in Dana-Farber's Pediatric Survivorship Clinic seeing more patients who were diagnosed 20 or 30 years ago.
"It's critical that physicians recognize that cancer survivors can have unique health challenges and that they may need to interpret symptoms differently in these patients than they might with their patients who haven't had cancer," says Diller. "Cancer survivors will tell you that once their hair grows back, everybody thinks that they are back to normal. But it can take a lot longer to get there - and some issues may never be resolved."
Dana-Farber expanded it's survivorship program to serve survivors of all ages in 2004 with the establishment of the Lance Armstrong Foundation Adult Survivorship Program and the Perini Family Survivors' Center. At the same time, the focus on cancer survivorship services was growing on a national level.
In 2005, the Institute of Medicine recommended that all cancer patients receive a treatment summary and a plan to help them stay well at the end of initial treatment. This would include information on the diagnosis, treatment, and potential consequences; a schedule for follow-up visits; tips on healthy living and preventing new cancers; legal rights affecting employment and insurance; and the availability of support services.
A comprehensive treatment summary and care plan serves as an important road map for survivors and their primary care physicians, Miller says. "These documents help prepare patients for life after cancer by outlining issues like the importance of cancer screening and identifying who might be at risk for second cancer, and such plans educate physicians about potential health risks that are unique to cancer survivors."
In addition to monitoring for potential cancer and treatment-related health issues, primary care physicians should help survivors focus on overall wellness, an area often underemphasized in survivorship, Miller says.
"Conversations with patients should include everything from stopping smoking to good nutrition and exercise plans."
As part of the continuum of care for survivors, Dana-Farber offers a wide range of educational programming, support services and informational resources. Survivors can attend a variety of workshops, participate in annual survivor-specific events or meet one-on-one with social workers with expertise in issues facing survivors. Dana-Farber also offers cancer survivors general physical, emotional, financial, and practical information and resources about the issues they may face every day.
Dana-Farber recently produced 21 videos that address issues facing survivors of adult cancers. Available for viewing through the Perini Family Survivors' Center's Web page, www.dana-farber.org/survivor, the videos feature Miller interviewing experts from the fields of oncology, psychology, nutrition, and more, outlining many of the issues survivors typically face, from fear of recurrence to long-term health concerns to creating a wellness plan.
"Unfortunately, the end of cancer treatment is not the end of the cancer experience," says Miller. "It's our job to make sure patients find a new balance in life, one that recognizes where they've been medically, and where they're going for a healthy future."
Gardella, the former police officer and esophageal cancer survivor, says he recognizes that although he has beaten his cancer, he will never be free of his cancer experience. That said, he's focused on living a full life, including spending time with his wife and children, playing softball, golf and riding his bike once in a while.
"And I'll even get out there and cut the lawn when it gets up to four or five feet tall," jokes Gardella. "Although I'm sure my wife Elaine will make sure I'm out there with the lawnmower well before that."
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