Survivorship Program Launches to Help Patients Improve Post-Treatment Quality of Life
With roots that stretch back to the groundbreaking research of Phil Rubin, M.D., who earned international recognition for his study of the effects of radiation exposure, and for whom the research-focused Center for Cancer Survivorship at URMC is named, Wilmot scientists have brought the institution to the forefront of survivorship research.
Now, thanks to the work of a multidisciplinary team of physicians and the generosity of a caring donor, the seeds of a clinical cancer survivorship program planted many years ago have now come to fruition and Wilmot once again leads the way with the launch of a clinically based cancer survivorship program. Directed by Louis "Sandy" Constine, M.D., and co-led with Michelle Shayne, M.D., Eva Galka, M.D., and Alicia Coffin, M.S., R.N., OCN., the program is the first of its kind in the region. The program has benefitted from the strong support of Richard DiMarzo, who established "Judy's Fund: Hope for Cancer Survivors" with a gift of $1 million in memory of his wife, Judy, who lost her nine-year battle with lymphoma in 2009.
"As a regional leader in cancer care and research, we have to be constantly evolving as a cancer center and find new ways to raise our level of care for our patients," said Jonathan Friedberg, M.D., MMSc, director of the Wilmot Cancer Center. "We've become a destination point for talented researchers, clinicians and patients from beyond our region in large part because of our ongoing mission to constantly seek ways to improve. A clinical cancer survivorship program, which builds on the success of our research in that area, is a logical progression for us and a wonderful benefit for our patients. We are extremely grateful to Richard DiMarzo for his support in starting this program. While his gift is certainly extraordinary, I am even more moved by his passion for the program and his sincere desire to create a better life for cancer survivors."
Factors such as breakthroughs in research and treatment, earlier detection and more accurate diagnoses have resulted in the number of cancer survivors growing at an accelerated pace. According to the most recent figures provided by the U.S. Centers for Disease Control (CDC), the number of cancer survivors in the United States increased from just three million in 1971 to 9.8 million in 2001, and then to 11.7 million just six years later in 2007. The National Cancer Institute recently estimated that 13.7 million people with a previous cancer diagnosis are living in the United States today. In addition, more people are living a longer period of time after diagnosis. About two out of every three people diagnosed with cancer are expected to live at least five years after diagnosis. The most recent CDC numbers indicate more than a million people were alive in 2007 after being diagnosed with cancer 25 years or more prior.
Clearly, the growing numbers of survivors is a sign of the tide turning in what is often termed the war on cancer. However, these patients often take with them a host of lifetime health issues, often referred to as late effects – including a higher risk of cancer recurrence, heart disease, and other physiological and emotional concerns that require carefully coordinated monitoring and care, involving their primary care physician and their oncologists.
"Living beyond cancer should be cause for celebration for the growing numbers of individuals who have prevailed and survived treatments," said Constine, a professor of radiation oncology and pediatrics who has written extensively on the topic and traveled the world to lead discussions and task forces on survivorship issues and late effects of treatment. "Unfortunately, each day is far from a celebration for many survivors. Many have physical problems, financial obstacles, and mountains of emotions that must be conquered. All of these hurdles can compromise the quality of life of cancer survivors and their family. They deserve our help in overcoming these hurdles."
"I think the survivorship program's impact on patients will be tremendous," said Michelle Shayne, M.D., one of the leaders in the development of the program. "Research in survivorship demonstrates that patients want to be given a summary of their cancer treatment. Patients with whom I've spoken have questions about their follow up in terms of which studies are appropriate for surveillance and how frequently these should be done. It's fine to give a verbal response to these questions but it's so much more meaningful to give this information to patients in writing. To give them a document they can use to discuss their care with their primary care doctor or family members. This document can serve as a terrific resource if a patient can't remember a particular recommendation or if a patient is moving to another city or transferring care."
What are Late Effects?
A late effect is a delayed or long-term effect that patients may experience following treatment of their cancer. They are essentially side effects of the cancer itself or the aggressive treatments needed to rid the body of cancer cells, including chemotherapy, radiation therapy, and surgery. Radiation to the chest area, for example, can impair future heart or lung health, as can chemotherapy. Osteoporosis, chronic fatigue, emotional difficulties and a higher risk of developing a secondary cancer represent a sampling of other noted late effects of treatment. The experience for each patient may be very different, and some patients can be more vulnerable than others. Because, fortunately, cancer patients are now living much longer, managing these late effects has become increasingly important because health providers want to do whatever possible to improve and optimize the quality and duration of life for their patients.
Survivorship Program Goals
"Patients have many questions when first diagnosed with cancer," Constine said. "Often, patients have even more questions after completing treatment. They want to know how often follow up visits should occur, what tests should be done to make certain the cancer has not recurred, or what the signs and symptoms of recurrence might be, and what should trigger a phone call to a doctor between scheduled visits. They are also appropriately concerned about the possible long-term effects of the treatment on their health and how they can best be protected."
The multidisciplinary team behind the Wilmot Cancer Center's clinical survivorship program is dedicated to helping patients navigate through the complexities of survivorship care and to answering the many questions they may have.
In order to make lifelong follow-up care and monitoring easier and more effective, all patients who receive treatment will be given a written summary of their treatment and care plans. Treatment summaries contain detailed information about the specific cancer diagnosis and disease stage along with information about the various types of treatment received, such as surgery, chemotherapy, and radiation therapy. The physicians who have prescribed the treatments and performed any surgery are listed by name along with their contact information, as well as the specific dates of treatment.
Other members of the care team are also listed, including physical therapists, fertility experts, and social workers. Care plans are personalized documents that include information about how frequently follow-up visits should take place. These documents include a list of important surveillance tests along with the recommended frequency of testing. Important signs and symptoms of disease recurrence along with possible late effects of treatment are contained in the document as well. There is also useful information in the care plan pertaining to diet and exercise. Care plans keep patients and their referring physicians informed and involved in their ongoing care.
If problems develop in the months to years following cancer treatment, the survivorship program has a panel of specialists who are ready to see patients right away. These specialists are experts in survivorship care with a clear understanding of the effects of cancer treatment. The program is built upon treatment summaries and evidence-based survivorship care plans that will be distributed to patients, private care practitioners, and oncologists to facilitate a partnership between all parties.
The Transition to Cancer Survivor
Presently, each of the disciplines of oncology (radiation oncology, medical oncology, and surgical oncology) has at least one nurse coordinator who closely works with his/her respective physician and the entire multi-disciplinary team during a patient's active phase of treatment, a fundamental aspect of care that will not change. However, under the leadership of Alicia Coffin, MS, R.N., OCN, newly named lead nurse of the survivorship program, at least one nurse from each cancer subspecialty, such as lymphoma, breast cancer, head and neck cancer, etc., will be working in newly developed survivorship clinics, facilitated primarily by nurse practitioners (NPs), to initiate the process of transitioning the patient from active treatment to survivor. This is ideal given that this nurse, the nurse practitioner, and the patient would have already developed a close relationship during the months of active therapy.
"Alicia's role is critically important because she is the Nurse Leader dedicated to our survivorship program and the growing population of patients who are cancer survivors," Friedberg said. "She has been instrumental in organizing the program and the documents we provide to patients and their primary care physicians. She will coordinate the actual process of patients' after-treatment transition meeting, during which we discuss a summary of their treatment, necessary follow up care, possible needs of the patient, and the resources available to meet those needs."
The transition nurse will be responsible for reviewing the individual survivor's treatment history and providing a customized treatment summary and survivorship care plan (SCP), which will be handed to and reviewed with the patient and the survivorship nurse navigator at the transition of care visit. This visit will also be important to address other needs or concerns emotionally, physically, financially, as well as an opportunity to discuss nutrition, exercise, complementary medicine, etc. Resources and referrals will be provided based on these needs. This nurse will also collaborate with the patient's primary care physician and review the SCP to coordinate continuity of care.
"This is an exciting opportunity for me because I have always been passionate about oncology care and working with cancer patients," Coffin said. "We do a great job following our patients very closely during treatment and attending to the needs that they have at that time. This program will allow us to continue to provide excellent care and give support and resources to our patients who have completed treatment and are looking to move forward past cancer and lead healthy lives."
Wilmot Cancer Center fellows and residents have also played an important role in developing documents and protocols related to care for cancer survivors. Shayne, a medical oncologist specializing in breast cancer, had piloted an educational study in survivorship that introduced the basics of cancer survivorship care to trainees in the Hematology/Oncology and Radiation Oncology programs. The pilot study used a curriculum based on survivorship literature compiled by Shayne.
"Our Hematology/Oncology fellows and Radiation Oncology residents are playing a leading role in the development of treatment summary templates and quality care plans," said Shayne. "These documents are being integrated into our electronic medical record for eventual dissemination to all patients treated at the Wilmot Cancer Center. While our fellows and residents are assembling these important components of cancer survivorship care, they are also learning about survivorship.
"This is all part of our novel educational initiative called the Cancer Survivorship Workshop," Shayne continued. "It's so important that we train the cancer specialists of the future to be prepared to manage the unique needs of survivors. The population of cancer survivors is growing exponentially and graduates from our Hematology/Oncology and Radiation Oncology training programs are ready to incorporate expertise in survivorship into their medical practice."
Constine was quick to point out that the development and implementation of the new survivorship program was successful only because of the involvement of a broad range of contributors.
"I think it is critical to recognize the fact that we have a large team dedicated to achieving our goals, and these team members represent all disciplines and divisions – from physicians to nurses to e-record personnel. It is this collection of professionals who are passionate about survivorship support that helps ensure our success. Moreover, it is our patients that lead our way, that inspire us to do this work, and that support our efforts."
How do we define a "Cancer Survivor"?
There has been a lively debate in oncology circles about an appropriate definition of cancer survivor, including a lengthy discussion in a very recent issue (Feb. 1, 2013) of the Journal of Clinical Oncology. The prevailing thought is that the term cancer survivor applies to anyone who has been diagnosed with cancer, from the time of diagnosis through the balance of his or her life.
The National Cancer Institute estimates that there are approximately 13.7 million cancer survivors living in the United States today. The vast majority of cancer survivors come from a pool of four of the more common cancer types. According to a recent American Cancer Society report, 22% of survivors living today were originally diagnosed with breast cancer, 20% had prostate cancer, 9% had colorectal cancer, and 8% had a genitourinary form of cancer, such as uterine, ovarian, and cervical cancers.
Surging survival rates are often attributed to the following:
- The most common forms of cancer from where survivors emerge have experienced improved screening measures, leading to earlier detection. These include mammography for breast cancer, the prostate specific antigen (PSA) test for prostate cancer, the Pap test for cervical cancer, and colonoscopy for colorectal cancer.
- Development of more effective treatments.
- Improved management of treatment side effects, allowing physicians to take more aggressive measures and provide higher, more effective doses of cancer drugs.
- Disease-specific, targeted therapies have become a new, more effective weapon. These therapies are designed to attack cancer cells while doing less harm to normal cells, and are often less toxic than standard chemotherapy.
Of the 11.7 million people living with cancer in 2007–
- 7 million were 65 years of age or older.
- 6.3 million were women.
- 4.7 million were diagnosed 10 years earlier or more.
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