Cancer Survivorship: A New Challenge for Surgical and Medical Oncologists

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<ul><li><p>PERSPECTIVE</p><p>Cancer Survivorship: A New Challenge for Surgical and MedicalOncologists</p><p>Niraj J. Gusani, MD, MS1,2, Jane R. Schubart, PhD, MS, MBA1,2, James Wise3, Elana Farace, PhD4,Michael J. Green, MD, MS5, Yixing Jiang, MD, PhD6, Eric T. Kimchi, MD1,and Kevin F. Staveley-O_Carroll, MD, PhD1,7</p><p>1Section of Surgical Oncology, Department of Surgery, Penn State College of Medicine, Penn State Milton S. Hershey Medical Center,Hershey, PA, USA; 2Department of Public Health Sciences, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA; 3Chaplain Services,Penn State Milton S. Hershey Medical Center, Hershey, PA, USA; 4Department of Neurosurgery, Penn State Milton S. Hershey Medical Center,Hershey, PA, USA; 5Departments of Humanities and Medicine, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA; 6Division ofHematology/Oncology, Department of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA; 7Department ofMicrobiology and Immunology, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA.</p><p>Increasingly, oncology practitioners are realizing thatdespite the success of cancer therapies, cancersurvivors are facing previously unrecognized issuesrelated to survivorship, including physical and psycho-social side-effects of the cancer and its treatment,second cancers, and practical and economic issuesrelated to adjusting to life after their cancer diagnosis.In gastrointestinal cancers, traditionally, the medicaland surgical oncologists charged with the care of thepatient are not well-equipped to deal with these survi-vorship issues. At the Penn State Cancer Institutesnewly formed Gastrointestinal Cancer SurvivorshipClinic, we provide a full array of services to optimizecare through a multi-disciplinary approach. By utilizinga multi-disciplinary model with the primary medicaland surgical oncologists spearheading the survivorshipinitiative and psychological and pastoral support as apriority, we hope to optimize cancer survivor care andpatient quality of life.</p><p>KEY WORDS: cancer; survivorship; oncology; gastrointestinal.</p><p>J Gen Intern Med 24(Suppl 2):4568</p><p>DOI: 10.1007/s11606-009-1010-0</p><p> Society of General Internal Medicine 2009</p><p>INTRODUCTION</p><p>Survivors of cancer are becoming an increasingly importantsegment of the population. By current estimates there aremore than 10.8 million cancer survivors in the United States,representing 3.7% of the population.1 Overall, 64% of adultsdiagnosed with cancer will be alive five years after diagnosis.2</p><p>As outcomes for cancer treatment improve, this burgeoninggroup of cancer survivors presents oncology professionals witha new set of medical issues and challenges. In addition toongoing follow-up and surveillance of their cancer, thesepatients often face such issues as physical and psychosocialside-effects from the cancer itself and its treatment, secondcancers, and a range of practical issues related to adjusting tolife after a cancer diagnosis.</p><p>Patients with cancer of the esophagus, stomach, liver, andpancreas have among the worst prognosis of all solid organtumor patients.Most patients diagnosedwith these tumors haveless than a 20% chance of long-term survival. Despite thesedifficult odds, with recent improvements in chemotherapeutictreatment regimens, perioperative care, and surgical tech-niques, more and more of these patients are becoming long-term survivors. Between 1975 and 2003, 5-year survival rateshave increased dramatically for colorectal cancer (50% to 66%),esophageal cancer (6% to 18%), stomach cancer (15% to 22%),pancreatic cancer (3% to 5%) and liver and bile duct cancer (4%to 10%).1</p><p>Treatments for gastrointestinal cancers often include com-plex, toxic chemotherapy regimens, radiation, and major ab-dominal surgery with a long recovery process. Complexgastrointestinal tract surgery can result in dietary restrictions,altered bowel function, nausea and vomiting, diarrhea, orabdominal pain. Often these symptoms are self-limited, butthey may persist to varying degrees. Lack of appetite, alteredtaste, difficulty swallowing and weight loss may be seen in thepost-operative period, or in the face of recurrence in esophagealor gastric cancer. Patients undergoing pancreatic surgery facethe long-term risks of diabetes and impaired fat absorptionresulting in diarrhea. Impairedwoundhealing is a higher risk formany of our patients due to lengthy surgeries involving multipleorgans. As a result of poor nutrition and wound complications,cancer patients are at higher risk for post-operative herniationafter their surgeries.</p><p>While the issues surrounding successful treatment are agood problem to have, they also engender new requirementsfor which traditional treatment models may not be adequate.With this therapeutic success comes increasing responsibilityon the part of gastrointestinal oncology care providers. It is notenough simply to treat these patients, tell them they arepotentially cured, and then send them on their way.</p><p>Surgeons and medical oncologists treating patients withgastrointestinal cancers are traditionally among the leasttrained in survivorship issues and long-term patient follow-up. To these practitioners, who often perform intensive anddifficult therapies on very sick patients in a high-stressenvironment, the issues of survivorship may seem small andinsignificant compared to the challenges they and theirpatients have already overcome to treat their initial cancer.</p><p>JGIM</p><p>S456</p></li><li><p>Unfortunately, our very success in treatment of these aggres-sive cancers has led to new problems for our patients after theirrecovery from treatment. Faced with significant changes intheir anatomy and physiology from surgery, persistent side-effects and late effects from their chemotherapy, and often socialand emotional challenges from their treatment and recoveryprocess, the survivors of gastrointestinal tract cancers often donot fully enjoy hearing the words you are cancer-free.</p><p>Recognition of the issues facing cancer survivors has takenon increasing importance as our treatments for cancer havebecome more successful.3 The Institute of Medicines 2005report4 highlights the issues for patients as they completeprimary therapy and recommends that we recognize cancersurvivorship as a distinct phase of cancer care. Historically,guidelines for cancer survivors have been limited to surveil-lance for recurrence of primary disease. The IOM report goesbeyond this and recommends that survivorship plans addressthe chronic effects of cancer, monitor, prevent late effects fromtreatment (i.e., heart disease), provide emotional and psycho-social support, including support to address financial andlegal issues such as payment of bills and resumption ofemployment. In addition, many patients face constant uncer-tainty and worry about whether they are really cured andwhether or not their cancer will return. Many of these patientsare not able to transition back to their normal lives because ofanxiety and fear regarding relapse or death.</p><p>GASTROINTESTINAL CANCER SURVIVORSHIP CLINICAT THE PENN STATE CANCER INSTITUTE</p><p>As part of the efforts of the Penn State Cancer InstitutesProgram in Liver, Pancreas, and Foregut Tumors, we started amulti-disciplinary Gastrointestinal Cancer Survivorship Clinic,in July 2008, to help address the ongoing follow-up care andspecial needs of the survivors of cancers of the GI tract. The goalof this effort is to create a multi-disciplinary forum, led bysurgical and medical oncologists, to address not only theclinical needs, care coordination, and follow-up of patients,but to address their psychosocial, behavioral, and quality of lifeissues as well. One of the foundations of this new treatmentmodel for cancer survivors is that the medical and surgicaloncologists involved with each patients cancer therapy willcontinue to be involved just as closely in their follow-up andcontinuing care. These practitioners will help ease the transi-tion from active cancer care to surveillance for cancer recur-rence and eventually back to routine medical care.</p><p>An important issue to be addressed is streamlining thetransfer of care from the oncologist to the primary carephysician. Our clinic aims to ease that transition by providingdetailed survivorship care plans whereby our oncology physi-cians will help improve communication and coordinationbetween a patients cancer care team and his/her regularphysicians and will identify key survivorship issues specific toeach GI cancer survivor patient.5,6 For example, primary carephysicians and other outside physicians (e.g., radiologistsreading the outside CTs) may not know or understand exactlywhat operation was performed (the new anatomy, expectedpost-surgical changes, etc.), and may have difficulty discerningwhich patient complaints are minor and which are worrisome.</p><p>Newer technology available through our medical centerselectronic records software will allow the patients primaryphysicians and community oncologists to have completeaccess to their patients notes, test results and reports. Thegoal is a shared care model where the patients primaryphysicians are both aware of and able to address the specialneeds faced by their patients who are cancer survivors.7,8 Toooften care of the cancer patient is fragmented among thedifferent specialists and without adequate communicationback to the primary care providers, even such basic informa-tion as the specific diagnosis, stage, and treatment received.9</p><p>We aim to test our shared model to improve coordination ofinterdisciplinary care. The use of treatment summaries andsurvivorship care plans, along with shared medical records,will be one mechanism to facilitate two-way communicationamong providers.</p><p>Anothermajor initiative of our new clinic is to provide completecare for the patient, beyond what can be found in the usualmedical or surgical oncology clinic setting. The GI CancerSurvivorship program is committed to helping patients and theirfamilies with all of their psychological, social, and emotionalneeds. To do this, the clinic is staffed by clinicians andresearchers from various medical disciplines to provide servicesthat include surgical and medical oncology follow-up andongoing care, psychology services, nutrition screening anddietary evaluation, and social work services. Other servicesinclude ongoing communication with the patients primary carephysicians and coordination of survivor screening and follow-upcare. The GI Cancer Survivors Clinic also serves as a laboratoryfor clinical and outcomes-oriented research throughout thePenn State Cancer Institute. As part of the ongoing assessmentof patients, we longitudinally track patients quality of lifeoutcomes. While quality of life evaluation in gastrointestinaloncology is still in its infancy, there have been several recentstudies which assess quality of life related to treatment andtherapy of gastrointestinal cancer.10 Mullan11 describes threeseasons of survival in cancer patients: acute survival fromdiagnosis to initial treatment, extended survival relating tothe time after treatment during which patients face possiblerecurrence, and permanent survival when the patient is likelyto be cured. Unfortunately, few if any studies have beenpublished examining quality of life in GI cancer patients in theextended or permanent survival stages. We hope our initiativewill help us to better understand these stages of survival and thedeterminants of patient quality of life longer term.</p><p>Recognizing that our surgeons andmedical oncologists mightnot systematically address the wider range of patient quality oflife issues such as depressed mood or lack of social supportbecause of time constraints or because they are not trained toassess them, we routinely collect cancer symptom and quality oflife data using a paper questionnaire completed by the patient.We also include a psychologist or social worker and the hospitalchaplain as an integral part of the team onsite at the weekly GISurvivors Clinic. Our premise is that brief screens for depressedmood or distress can identify and streamline patient referrals toancillary care services. Already two important findings areemerging: a higher than expected occurrence of depression anda spiritual void reported by patients.</p><p>Studies are underway now, however, our preliminary datasuggests that even in patients who are doing well clinically andcompleting their treatment, the impact on overall quality of lifeis significant. Patients report lingering physical and functional</p><p>S457Gusani et al.: Cancer Survivorship: A New ChallengeJGIM</p></li><li><p>side effects of their treatment such as lack of energy, inabilityto engage in fulfilling work or enjoy things they use to do forfun. Many report feeling sad or worrying that their conditionwill get worse, and we are seeing a higher than expected reportof mild to moderate levels of depression based on validatedpatient self-reported written tools. We know that depressionmay cause avoidable decrements in quality of life and canadversely affect the course of cancer and survival. While we arepleased that the majority of our patients do remarkably wellafter surgery, we are increasingly sensitive to possible long-term issues of adjustment after such extensive surgery andafter chemotherapy given that studies have shown an in-creased prevalence of pain, depressed affect and fatigue incancer patients that is often underdiagnosed and under-treated. We are convinced that by identifying and referringpatients for appropriate interventions for the treatment ofdepression, oncologists and mental health professionals cancollaborate to enhance quality of life in cancer patients.</p><p>A second emerging finding is that patients are often reportinga spiritual void as they cope with their cancer and itstreatment. To assess their health related quality of life, we areincluding a validated written, patient self-report instrument,the Functional Assessment of Cancer Therapy-Spiritual (FACIT-Sp), at each clinic visit. While it is too early to report any formalresearch findings, it is becoming clear that our patients areconcerned about the sense of purpose, meaning and produc-tivity in their lives. While some patients find comfort andstrength in their faith and spiritual beliefs, others do not.Although we have included a chaplain in the GI SurvivorsClinic from its beginning, we are now exploring ways to expandand enhance this service.</p><p>We know that in the busy clinical setting, human relation-ship is easily overlooked, yet nowhere is relationship moreimportant than in life-threatening illness. A diagnosis ofcancer affects the body, mind, and spirit, and tests the faithand hope of patients, their families and caregivers. Our goal isto transform a clinical practice that historically has beenfocused on diagnostic and treatment procedures (laboratorytests, CT and MRI scans, surgical procedures) to a practicethat provides complete care for the patient that goes beyondwhat can be found in the usual medical or surgical oncologyclinic setting and ackno...</p></li></ul>

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