Cancer Program AR - Huntsman Cancer Institute - University of Utah

University of Utah Hospitals & ClinicsCancer Program2000 ANNUAL REPORT

TABLE OF CONTENTS 2 University of Utah Hospitals and Clinics Cancer Committee Members3 Cancer Cases6 Cancer Registry Report7 Study Request Log8 Cancer Conferences10 Program Development12 PET Scanner13 New Faculty14 Patient Support Groups14 Volunteer Program14 Pain Medicine and Palliative Care Program15 Clinical Research17 Developing the Future Generation of Oncology Nurses17 Education, Prevention, and Outreach18 Community Services21 Primary Intracranial/CNS Tumors PCE Study

University of Utah Hospitals & Clinicschairman’s letterThe cancer program at the University of Utah Health Sciences Center is a unique collaboration of programsdedicated to improving cancer care for patients in Utah and the Intermountain West. As the premier teachinghospital and referral center for this area, it helps set the standard for care as well as providing for the educationof the next generation of physicians, nurses, pharmacists, and medical researchers. In the past year, the combinedefforts of the University of Utah Hospital and the Huntsman Cancer Institute have created an environment thatpromotes improvement in every aspect of cancer care. New clinical space, a first-class learning center, specialtytumor boards, and investments in new technology highlight the most recent changes in our program. Fundingfor a new cancer research hospital has been secured and the design and construction processes are underway.The demographic shift to an older population in Utah increases the importance of cancer as a public healthproblem. Currently, about 6,000 Utahns are newly diagnosed and 2,500 will die of cancer each year. The cancerprogram at the University of Utah has a unique responsibility and opportunity to serve the citizens of Utah andthe Intermountain West by continuously improving programs that aggressively address this most feared anddevastating disease. Innovative breakthroughs in genetics, immunology, and biotechnology hold the promise ofdramatic changes in how cancer is prevented and treated. The Huntsman Cancer Institute is a leader in cancerresearch and continues to devote significant resources to research, education, and patient care.On behalf of the Cancer Committee, I wish to thank Dr. Saundra Buys for her exceptional leadership of theCancer Committee the past three years. She has guided the committee through a period of significant changeand continually sets the example of how to provide compassionate care. We have a superb committee of dedicatedpeople who all share the vision of providing the best care available to our patients. I look forward toanother year of progress and success with our cancer program.Sean Mulvihill, M.D.Chair, Cancer Committee

University of Utah Hospitals & Clinicsuniversity of utah hospitals and clinicscancer committee membersMadeline Buelt, MSNSaundra Buys, MDMichele Dabrowski, LCSWMark Dodson, MDRosemary Field, RNKristine Gilbert, RN, CPHQGina Gregovich, CCRPAnne M. Kennedy, MDDiane Kiuhara, MS, RN, OCNLester Layfield, MDSean Mulvihill, MD, ChairSandra Reay, CTRVaughn Roche, LCSWKim A. Segal, MPH/HSAScott Silverstein, R.Ph, M.S.Jennifer SmithTanya SmithJohn Speed, MDBen TannerAl TokunagaGordon Watson, MD, Liaison PhysicianAdministrationOncology, HCISocial ServicesGynecologic OncologyNursing PracticePM&IClinical TrialsDiagnostic RadiologyNurse ManagerPathologySurgeryCancer RegistrySocial ServicesPain Medicine & Palliative Care ProgramPharmacyCancer RegistryCancer Learning CenterPhysical Medicine & RehabDirector, Oncology ServicesDirector, Health InformationRadiation Oncology2 Cancer Program

University of Utah Hospitals & Clinics2000 cancer casestotal cancer cases: 1,786Class ofCase Total Explanation0 31 Diagnosed at University of Utah, treated elsewhere1 523 Diagnosed/1st course of treatment at University of Utah2 898 Diagnosed elsewhere, with most or all of treatmentat University of Utah3 264 Diagnosed and 1st course of treatment elsewhere5 8 Diagnosed at autopsy9 62 Unknown class of case86231523CLASS OF CASE264889• 0 • 1 • 2• 3 • 5 • 9DISTRIBUTION BY SEXPATIENTS BY RACEPatients by Race9401,743385White 1,743Black 5Other 38846Follow Up Statistic Rates for 2000Alive Only 98.4%• Female• Male• White• Black• OtherWith Deceased 98.9%Stage atDiagnosis Total ExplanationIn Situ 112 Foci of malignant disease with no invasionLocal 712 Malignant tumor confined to primary siteRegional 479 Tumor spread to adjacent organs & lymph nodesDistant 401 Spread of tumor to distant organs or lymph nodesUnknown 82 Primary site of disease is unknownSTAGE AT DIAGNOSIS479401• In Situ • Local 712112• Regional• Distant82• UnknownCancer Program 3

University of Utah Hospitals & ClinicsFirst Course of Treatment (Singly or in Combination)Treatment Number %Surgery 1,161 65Radiation 768 43706050FIRST COURSE TREATMENTBY PERCENTSurgery and Radiation 429 24Chemotherapy 589 33Hormonal 268 15Bio. Response Modifier 71 4Other 18 1403020100• Surgery • Radiation •• Chemotherapy • Hormonal •• OtherSurgery & RadiationBio ResponsePatient Age at DiagnosisMaleFemaleAge # % # % # %0–9 20 1.1 13 1.4 7 0.810–19 33 1.8 14 1.5 19 2.220–29 71 4.0 39 4.1 32 3.830–39 107 6.0 37 3.9 70 8.340–49 242 13.5 77 8.2 165 19.550–59 410 23.0 211 22.4 199 23.560–69 430 24.1 264 28.1 166 19.670–79 349 19.5 218 23.2 131 15.580–89 113 6.3 61 6.5 52 6.190+ 11 0.6 6 0.6 5 0.6PATIENT AGE AT DIAGNOSIS500400300200• Female• Male• Total10000-9 10-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90+4 Cancer Program

University of Utah Hospitals & ClinicsTop Ten Cancer Sites, University of Utah Hospital, Male vs FemaleMaleFemaleSite Total Cases Site Total Cases1. Prostate 225 1. Breast 2612. Lung and Bronchus 122 2. Melanoma of Skin 493. Melanoma of Skin 77 3. Uterus 474. Brain 46 4. Brain 385. Leukemia 45 5. Ovary 386. Non-Hodgkin’s Lymphoma 40 6. Lung and Bronchus 377. Rectum and Rectosigmoid 38 7. Cervix 358. Urinary Bladder 34 8. Non-Hodgkin’s Lymphoma 329. Kidney 33 9. Thyroid Gland 3110. Colon (excluding Rectum) 24 10. Colon (excluding Rectum) 28Top Ten Cancer Sites, University of Utah Hospital vs State of UtahUniversity of Utah HospitalState of Utah1. Breast 1. Breast2. Prostate 2. Prostate3. Lung and Bronchus 3. Melanoma4. Melanoma of Skin 4. Colon (excluding rectum)5. Brain 5. Lung6. Non-Hodgkin’s Lymphoma 6. Urinary BladderAJCC Stage at DiagnosisStage # %0 111 6.21 367 20.52 410 23.03 296 16.64 273 15.3Unstageable 328 18.47. Leukemia 7. Lymphoma8. Rectum and Rectosigmoid 8. Uterus9. Kidney 9. Leukemia10. Colon (excluding rectum) 10. KidneyAJCC STAGE AT DIAGNOSISBY PERCENT2520CANCER TRENDS (University of Utah, 1957-Present)152,000101,5001,000500019571960196319661969197219751978198119841987199019931996199950• 0 • 1 • 2• 3 • 4 • UnstageableCancer Program 5

University of Utah Hospitals & Clinics2000 cancer registry reportThe Cancer Registry provides a computerized means of identifying, collecting, abstracting, and analyzing dataon all cancer cases diagnosed and/or treated at the University of Utah Hospital and Huntsman Cancer Institute.This data includes diagnosing, treatment, survival and follow-up data on each cancer patient. The CancerRegistry is responsible for lifetime follow-up of cancer patients within the database. The American College ofSurgeons Commission on Cancer (ACoS CoC) requires an annual follow-up rate of 90% on all cases within theCancer Registry. Currently the follow-up rate on all cancer patients is 95.2%. All cases are transmitted to theUtah Cancer Registry and the National Cancer Database.Cancer Registry staff consists of two certified cancer registrars, two registrars in training, and a cancerregistry clerk. The staff maintains proficiency in cancer database management through training classes andseminars offered by the Utah Cancer Registrars Association, Utah Cancer Registry and National CancerRegistrars Association.The Cancer Registry is responsible for maintaining a database of 39,914 cancer cases. During the year 2000,the registry added 1,839 new cases to the database. There were 1,452 analytical cases, 334 non-analytical cases,and 53 benign cases. The Cancer Registry participates in national patient care evaluations. The studies aredesigned to evaluate the methods of diagnosis, treatment and outcomes of specific cancers and allow comparisonof University of Utah Hospital data and national data. During the year 2000, University of Utah Hospitalparticipated in patient care evaluations on hepatocellular carcinoma and primary intracranial and CNS cancers.The quality of the cancer database is maintained through several methods. All cases are edit checked whenabstracted by the registrar. The Rocky Mountain Cancer Data System computer program allows the registrar toreceive instant feedback on errors in abstracting through the computerized error checks. The Utah CancerRegistry audits 100% of cases completed by the Cancer Registry. Cancer Committee physicians also review10% of all cases abstracted by the Cancer Registry staff in compliance with ACoS CoC requirements.The Cancer Registry staff completed two quality audits on registry data. These audits were:1. AJCC staging form completeness for adult sarcoma patients;2. 1995-1999 prostate cancer patient extent of disease (EOD) coding correctness.The Utah Cancer Registry and National Institute of Health looked at prostate cancer patients diagnosed andtreated in 1998. This involved chart review and re-abstracting prostate cancer patients diagnosed and/or treatedat the University of Utah Hospital and Huntsman Cancer Institute during 1998.6 Cancer Program

University of Utah Hospitals & Clinics2000 cancer registrystudy request logThe Cancer Registry plays an important role in cancer research. The registry is able to provide data on diagnosing,treatment, and survival of cancer patients to those who need the information. All information withinthe Cancer Registry is kept strictly confidential and information with patient identifiers is only released withIRB approval.During the year 2000, the following data was requested through the Cancer Registry:1. Number of prostate cancer patients in 1994 that received radiation therapy and hormone therapy.Craig Miercort, MD2. Cervical cancer patients, regional at diagnosis, with positive nodes on surgical resection. David Gaffney, MD3. Number of patients with surgical resection, categorized by surgeon, 7/1/1999-12/31/2000. This was toevaluate the surgical requirements for the new HCI cancer hospital. Kathy Adamson, RN, MSN4. Female patients with Hodgkin’s Disease that were subsequently diagnosed with breast cancer. LynnSmith, MD and David Gaffney, MD5. Number of new cancer cases for 1999. Rosemary Field, APRN, AOCN.6. Number of patients with prostate cancer (last five years) categorized by stage and treatment.This study is looking for patients receiving radiation therapy as cure. Julie Furukawa, MD7. Number of patients with retroperitoneal sarcomas, 1980-1999. David Gaffney, MD8. Number of patients with pancreatic cancer, 1980-1999. David Gaffney, MD9. Sarcoma cases seen at the University of Utah Hospital, 6/1/97-10/31/00. R. Lor Randall, MD10. Patients diagnosed with melanoma and treated with radiation therapy or biological response modifiers,for last five years. Lisa Hazard, MD11. Female breast cancer patients for 1998, categorized by stage, treatment, and Kaplan-Meier SurvivalCurve (diagnosed since 1992). Susan Welch, HCI12. Status of 23 patients with head & neck cancer (for protocol eligibility). Keyan Riley, MD13. Patients with stage 2 or 3 breast cancer with chemotherapy as treatment (for Amgen ProjectChemoInsight). Cases were chart review only. Rosemary Field, APRN, AOCN14. Cases diagnosed with leukemia, multiple myeloma and NHL. Paul Shami, MD15. All head & neck cancer patients with recurrence within one year of diagnosis. Matt Jepson, MD16. Number of breast cancer patients seen in 1999 with estimates of 2000, number of new breast cancerpatients with metastatic disease during 1999, number with bone mets, number of patients with breastcancer followed by University of Utah Hospital, number of patients followed that have metastaticdisease and number followed with bone mets. Kim Segal, MPH/HSA17. Patients with T1 & T2 oral cavity cancer, 1/1/1988-6/30/1999. Keyan Riley, MD18. Mailing labels for invitations to Strength for Caring and Strength for Living programs. This was forpatients treated with chemotherapy 6/1/1997-6/30/1999. Rosemary Field, APRN, AOCNCancer Program 7

University of Utah Hospitals & Clinics2000 cancer conferencesPhysicians at the University of Utah Hospital and Huntsman Cancer Institute use the cancer conferences todiscuss the management of patient care in a multidisciplinary setting. This allows the physician to discuss alloptions available for the treatment of a specific patient’s cancer. Attending physicians and residents involved inthe diagnosing and treatment of cancer patients are encouraged to present cancer cases at the CancerConferences.The Cancer Committee at the University of Utah Hospital sponsors a weekly General MultidisciplinaryCancer Conference. There are also six specialty cancer conferences that are held weekly or bi-monthly.These conferences are the Melanoma Conference, OB/GYN Conference, Breast Cancer Conference, SarcomaConference, Head & Neck Cancer Conference and Neuro-Oncology Cancer Conference. These specialty conferencesallow physicians to present site specific cases and gain input from the radiation oncologists, medicaloncologists, pathologists and radiologists who specialize in the diagnosis and treatment of these cancers.A total of 166 cancer conferences were held during the year 2000.Below is a breakdown of sites that were presented at cancer conferences held at the University of UtahHospital and Huntsman Cancer Institute.Site Total Site Total Site TotalBrain 244 Liver 5 Pyriform Sinus 2Breast 118 Sinuses 5 Rectum 2Other CNS 46 Floor of Mouth 5 Stomach 2Soft Tissue 39 Pharynx 5 Bladder 2Unknown Primary 22 Kidney 5 Anal Canal 2Cervix 21 Tongue 5 Blood 2Lymphoma 19 Testis 5 Liver 1Endometrium 16 Parotid Gland 4 Small Bowel 1Meninges 16 Colon (excluding Rectum) 4 Bile Duct 1Skin 15 Gastrointestinal, Nos 4 Nasopharynx 1Spinal Cord 14 Oral Cavity 4 Pituitary 1Thyroid 14 Alveolar Ridge 4 Salivary Gland 1Bone 13 Bone Marrow 4 Supraglottis 1Ovary 13 Vulva 4 Retroperitoneum 1Lung 11 Esophagus 4 Throat, Nos 1Uterus 10 Submandibular Gland 3 Pleura 1Larynx 9 Thymus 3 Fallopian Tube 1Base of Tongue 8 Epiglottis 3 Leukemia 1Orbit 7 Prostate 3 Total 767Brain Stem 7 Pancreas 28 Cancer Program

University of Utah Hospitals & Clinics2000 cancer conferences(continued)There were eight didactic presentations given in the cancer conferences during the year 2000. These included:1. PET (Positron Emission Tomography) imaging & oncology2. HCG false positives in gynecologic tumors3. 27 GOG protocols for gynecologic cancers4. Results of DCIS clinical trials5. Research study concepts6. Breast reconstruction following mastectomy7. Management of metastatic bone disease8. Adjuvant treatment of breast cancer: NIH consensus development conference (11/1-3, 2000)Cancer Program 9

University of Utah Hospitals & ClinicsProgram DevelopmentThe University of Utah and Huntsman CancerInstitute are enjoying increased exposure as severalexciting initiatives and programs to improve cancertreatment, prevention, and education get underway.The most visible sign of the expanding oncologyservices at the University of Utah is the risingHuntsman Cancer Research Hospital. This impressivenew facility has been designed with one primaryobjective: to provide every patient with the best careavailable. At the same time, physicians and scientistswill use the information they glean in treating thesepatients to develop new treatment protocols forcancer patients in the Intermountain West andthroughout the world.Healthcare professionals from University Hospitaland Huntsman Cancer Institute are also taking anincreasingly active role in educational and professionalorganizations, both locally and nationally.A collaboration with St. John’s Hospital in JacksonHole, Wyoming, was established this past year. Thisjoint venture will ensure that patients in Wyomingreceive the most up-to-date care. New physicianshave joined the School of Medicine faculty, andrecruitment efforts continue in several subspecialties.Many of these physicians are undertaking researchprojects in addition to their clinical duties.A major goal of the University of Utah’s oncologyprogram is to establish multidisciplinary clinics.In these clinics a patient will see all or most of theprofessional caregivers associated with his or her casein just one office visit. For example, in a singleappointment a patient with breast cancer might beseen by an oncologist, a plastic surgeon, a radiationtherapist, a radiologist, a pharmacist, a pain medicinespecialist, and a social worker. Not only is this moreconvenient for the patient, but the combined inputof all the involved specialists optimizes the treatmentcourse recommended for the patient.Multidisciplinary clinics are in place or under developmentfor three specific disease sites: neuro-oncology,melanoma, and sarcoma; and additional clinicsare being planned for the breast, gynecological oncology,and head and neck programs.Healthcare providers from University Hospital areparticipating with local cancer patient-supportorganizations. The past year’s public outreach andeducation efforts have significantly increased awarenessof University Hospital and Huntsman CancerInstitute, and have been a valuable resource for thecommunity. In turn, many more local citizens havevolunteered their services to the oncology program,providing important services.All of these initiatives are producing positiveresults for patients, medical professionals, and thecommunity. The programs are described in moredetail below.Huntsman Cancer Research HospitalIn September 2001, construction began on theHuntsman Cancer Research Hospital. This new50-bed hospital, scheduled for completion in 2004,will promote integrated, convenient care for patients.Every aspect of the new 230,000 square foot hospitalis designed to furnish patients with the most innovativeand effective care in an attractive, comfortablesetting. Thousands of hours have gone into thedesign phase of the new hospital. Over a dozen “user”groups—those patients, physicians, nurses, and otherprofessionals who will work or be treated in the newbuilding—have contributed their time and efforts inplanning the new facility.The new hospital will include the followingfeatures:• 50 private inpatient rooms• All inpatient rooms will provide sleeping accommodationsfor a patient’s friend or family member• Four operating rooms, and “shelled” space for anadditional four operating rooms• Radiology suite for state-of-the-art diagnosticimaging• Radiation therapy suite• Endoscopy suite• Diagnostic lab• An additional 32 outpatient exam rooms• Pharmacy• Chapel/meditation room• Therapy areas for physical, speech and recreationaltherapy• Business center with fax, copier, and computers forpatients’ family members• Conference center• Dining areas for patients, families and employees• Gift shop10 Cancer Program

University of Utah Hospitals & ClinicsThe new building will be connected to UniversityHospital and the existing Huntsman CancerInstitute. The building is also designed to accommodatefuture growth in inpatient beds, outpatientexam rooms, surgical suites, and infusion areas.Multidisciplinary ClinicsIn an effort to improve patient care, UniversityHospital and Huntsman Cancer Institute are developingmultidisciplinary clinics to provide an effectivemeans for a patient’s professional healthcare providersto communicate. The goal of the multidisciplinaryclinics is that in one office visit a patient will beexamined and evaluated by all of the healthcare teaminvolved in his or her care. This collaboration ensuresthat patients are benefiting from the combinedknowledge of a team of cancer professionals.Under the traditional model of care a patientmight be referred from a primary care physician to aspecialist, and then to any combination of surgeons,radiation oncologists, or other specialists. In themultidisciplinary clinics a patient is evaluated bymembers of a site-specific multidisciplinary teamwho collectively make appropriate treatment recommendations.Team members include oncologists,radiation oncologists, diagnostic radiologists, pathologists,specific disease specialists, pharmacists, socialworkers, and nurses. Each of these teams meetsweekly or bi-monthly to review patient cases.Multidisciplinary clinics currently in place orunder development include the neuro-oncology,sarcoma, melanoma, and pain medicine and palliativecare programs.Community Collaborations• Huntsman Cancer Institute (HCI) andIntermountain Health Care (IHC), the largesthealth care system in Utah, teamed up to createthe Huntsman Cancer Care Program (HCCP).HCCP will coordinate the efforts of 158 boardcertified specialists from the University of Utahand IHC in pooling information on treatment andresults in cancer patients. This data will then beanalyzed to make recommendations on the mosteffective care. Participating physicians must takepart in clinical trials, HCCP-sponsored workinggroups, and be willing to provide basic demographic,therapeutic, and outcome data for allcancer patients in their practice.• Huntsman Cancer Institute is an active partnerin the Utah State Department of Health’sComprehensive Cancer Initiative (UCCI). TheInitiative seeks to bring together organizations ina statewide collaboration to assess cancer needs,prioritize these needs, and develop a plan toaddress them. The mission of the UCCI is toreduce cancer incidence and mortality in Utah.• In November 2001, Huntsman Cancer Instituteagreed to provide oncological services for St. John’sMedical Center in Jackson Hole, Wyoming. Underthe terms of the agreement, an HCI physician willpractice two full days per month during normalclinic hours at the oncology clinic located in St.John’s. Oncology nurses will continue to providelocal oncology support and chemotherapy servicesat St. John’s.Other HCI services include physician consultationvia telephone and/or email, access to HCI’s bilingualCancer Learning Center, and education/outreachprograms for patients. HCI physicians will participatein St. John’s physician and medical staff educationand will also support community health-careevents including screening and prevention programs.Ron Ommen, CEO of St. John’s Medical Center, said,“Huntsman Cancer Institute is the primary referralcenter for cancer patients from our service area. Thisformal relationship will enhance the level of carereceived by all of the cancer patients in Jackson andsurrounding areas. It is my hope that this relationshipbecomes a prototype for community hospitalsand major cancer centers, which will result in superiorservices for residents of small communities.”Cancer Program 11

University of Utah Hospitals & ClinicsPET ScannerIn September 2000, Huntsman Cancer Institute andIntermountain Health Care jointly acquired a GEMedical Systems Positron Emission Tomography(PET) scanner to improve diagnosis, staging, andtreatment of cancer. This is the first imaging systemof this type in the Intermountain West. Previously,patients in Utah and throughout the region had beenreferred to Los Angeles or the few other sites in thecountry where PET scanning has been available. Theinstrument is a mobile unit housed on an eighteenwheelsemi-truck. The scanner is used at bothHuntsman Cancer Institute and LDS Hospital.Eventually, the PET scanner will be used at otherlocations to serve patients throughout Utah.This new technology tracks the biological functioningof the human body, as opposed to providingstill images of the body like CT or MRI scans. Thisallows more precise determination of whether acancer has spread and, if so, how extensively. In addition,it allows a very sensitive test of whether a cancerhas responded to treatment.Huntsman Cancer Institute and IntermountainHealth Care administrators issued a joint statementsaying, ‘The mobile PET scanner represents, in verytangible form, the energetic partnership betweenIHC and Huntsman Cancer Institute. We are verypleased to be able to combine the clinical andresearch strengths of our institutions in order to moreeffectively combat cancer through prevention, earlydetection, and more effective therapy. The PET scanneris only one of the many ways we are workingtogether to achieve this common vision. Having PETavailable will improve the care of cancer patients inthis region immediately. In addition, one of our areasof emphasis is on the prevention or early detection ofcancer and we will be performing studies to find outif the PET scanner can do this better than thecurrently available tests.”12 Cancer Program

University of Utah Hospitals & ClinicsNew FacultyThe following physicians have joined the Universityof Utah School of Medicine faculty or accepted leadershippositions at Huntsman Cancer Institute:DENNIS SHRIEVE, MD, PHD, is the new Chairman ofthe Department of Radiation Oncology. Previously,he was director of the Division of Oncology at theUniversity of Arkansas.SEAN MULVIHILL, MD, is Chairman of the Departmentof Surgery. He came from the University of California,San Francisco, where he was chief of the Division ofGeneral Surgery.RANDALL BURT, MD, chief of the Division of Gastroenterologyat the University of Utah School ofMedicine, has been named senior director of preventionand outreach for Huntsman Cancer Institute.DOUGLAS GROSSMAN, MD, PHD, is a member ofthe melanoma team. He completed his internshipand residency at Yale-New Haven Hospital.KAREN ALBRITTON, MD, is a sarcoma specialist.She completed her internship and residency at theUniversity of North Carolina-Chapel Hill.PRAMOD SHARMA, MD, is an otolaryngologist.He came to Utah from the University of Michigan.He completed his internship at the University ofCincinnati and a fellowship at Ohio State University.KAREN ZEMPOLICH, MD, specializes in gynecologicaloncology. She completed her residency at theUniversity of Utah and additional subspecialty trainingat the University of Southern California.KAREN SALZMAN, MD, is a neuro-radiologist, with aspecial interest in oncologic imaging. She completedher residency at the University of Texas-HoustonHealth Sciences Center and MD Anderson, and a twoyear fellowship at the University of Utah.WILLIAM COULDWELL, MD, PHD, is the new chair ofthe Department of Neurosurgery. Previously he waschair of the Department of Neurological Surgery atNew York Medical College.Cancer Program 13

University of Utah Hospitals & ClinicsPatient Support GroupsThe following support groups are offered to cancerpatients and their loved ones:Living Well With CancerThis is a person-to-person support group that tendsto the emotional, mental, spiritual, and social wellbeingof cancer patients. Held weekly.Care Providers Support GroupThis is an open-ended, person-to-person supportgroup for individuals caring for a loved one diagnosedwith cancer. It offers support, education andinformation with an emphasis on personal wellbeing.It also allows individuals to strengthen copingskills and talk with others about their experiences.Held weekly.Melanoma Support GroupThis group helps participants learn how to improvecommunication, master fears, reorder priorities,improve life through support, friendship, discussion,education, problem solving, and the use of copingskills. For melanoma patients, friends and family.Held weekly.Children Whose Parents Have Been DiagnosedWith CancerThis course focuses on strengthening coping skills,provides opportunities for children to talk about feelingsand experiences, offers support and counseling.Includes educational lessons, craft activities, andsnacks. This is an eight week closed-ended group forchildren ages 6-12. Held weekly.Look Good…Feel Better ProgramThis American Cancer Society program helps cancerpatients build self-confidence and gives tips on wigs,how to tie scarves, how to apply make-up, skin care,etc. A licensed cosmetologist conducts the one-timesession and participants receive a free make-up kit.Held monthly.Connecting Mind and Body:Building Resiliency in the Face of CancerThe goal of this six-week group is to teach patientsskills that can give them greater control over theirlives. Its approach draws on several scientific studiesthat positively link effective coping skills withimproved quality of life and survival. Patients learnand practice a variety of stress management techniques,such as guided imagery, muscle relaxationand self-hypnosis. They also learn to shift their attitudetoward adversity to relieve distress and improveproblem-solving skills. Participants also have theopportunity to discuss and seek group support ineasing and resolving difficulties.Volunteer ProgramHuntsman Cancer Institute has over 50 volunteerswho help with a variety of tasks, from data entry topatient support. HCI’s first volunteer, a retired orthodontist,reads and evaluates books and Web sitesthat, after careful HCI staff review, are recommendedto patients and their families in the Institute’s CancerLearning Center. Other volunteers help staff theCancer Learning Center, escort patients, provide dataentry for clinical research programs, or assist in theinfusion center by offering blankets, pillows, snacks,reading materials or movies to patients undergoingchemotherapy. Patients and volunteers both appear tobenefit from this generous service.Pain Medicine and Palliative Care ProgramThe mission of the Pain Medicine and Palliative CareProgram (PMPCP) is to reduce suffering and enhancequality of life for cancer patients and their familieswhile respecting personal values and preferences. Aunique feature of the PMPCP at the University ofUtah is the inclusion of complementary/alternativeeducation and interventions into the care of patients.14 Cancer Program

University of Utah Hospitals & ClinicsIn 1998, HCI recruited Sharon Weinstein, MD, whoestablished the Pain Medicine and Palliative CareProgram for the University Hospital and HuntsmanCancer Institute. Dr. Weinstein has a background incomplementary/alternative medicine and utilizes aholistic approach in the practice. During the pastthree years, the program has made great progress inmeeting the palliative care needs of patients and theirfamilies.The programmatic areas of the Pain Medicine andPalliative Care Program are:Clinical ServicesThe clinical services are integrated across the continuumof cancer care and address the physical,emotional, social, and spiritual symptoms faced bycancer patients and their families. A multidisciplinaryteam of health care providers offers medicalsymptom management, psychosocial support forpatient and family, and advance care planning.The core team includes a medical director, advancepractice nurse, nurse manager, social workers, anda PharmD.Education and TrainingEducational programs include both in-house andoutreach components. The target audiences areprofessional care providers, patients and families, thegeneral public, and policymakers. Medical and nursingschool students, residents, and fellows in familymedicine, psychiatry, anesthesiology, oncology, andneurology, and from pharmacy and social work areoffered clinical training opportunities within theprogram.The PMPCP has also been active in communitycollaborations with other cancer service organizationsin Utah. Among the organizations the PMPCP refersto, or partners with, to provide or improve palliativecare services for cancer patients are:• Utah Department of Health ComprehensiveCancer Initiative• Cancer Wellness House• Partnership to Improve End-of-Life Care in Utah• Cancer Pain Relief Utah• Rocky Mountain Candlelighters for ChildhoodCancer• Promoting HOPE for Utah Children• Integrative Health Program of the Salt Lake CityVeteran Affairs Health Care SystemClinical ResearchThe oncology services program is committed toproviding quality, innovative clinical trials for thetreatment and prevention of cancer. RichardWheeler, MD, is the associate director for clinicalresearch at Huntsman Cancer Institute, and also theprincipal investigator for numerous Phase I, Phase II,and Phase III clinical trials. The Clinical Trials Officeis participating in many trials sponsored by theNational Cancer Institute (NCI), including membershipin several cooperative cancer research groupssuch as Southwest Oncology Group (SWOG),National Surgical Adjuvant Breast and Bowel Project(NSABP), Gynecologic Oncology Group (GOG), andRadiation Therapy Oncology Group (RTOG). Weare proud to offer our patients the opportunity toparticipate in these multi-center trials, and it is ourgoal to offer a clinical trial to all eligible patientswho are treated for cancer at the University of Utah.In addition to the clinical trials supported by theNCI, we are participating in many investigatorinitiatedand industry-sponsored clinical trials. Thereare many committed investigators at the Universityof Utah and Huntsman Cancer Institute who arededicated to “translational research”, or translatingtheir laboratory discoveries into patient therapies.For example, in October 2000, Huntsman CancerInstitute offered its first clinical trial of a drugdiscovered in our laboratories. The drug, known asDecitabine, was discovered in the laboratory of DaveJones, PhD. Co-investigators for the clinical trial areWolfram Samlowski, MD, and Sancy Leachman, MD,PhD. Huntsman Cancer Institute has enrolled morethan 200 patients on the above-mentioned trials.Huntsman Cancer Institute has been selected asa site for the pharmaceutical industry’s innovativeresearch because of our expert investigators anddedicated clinical trial coordinators. Because of ourcommitment to clinical trials, Novartis Pharmaceuticalsselected HCI as a site for some of the initial clinicaltrials of STI-571 or Gleevec for the treatment ofChronic Myelogenous Leukemia (CML). We were oneCancer Program 15

University of Utah Hospitals & ClinicsThe University of Utah and Huntsman Cancer Institute recognizethe importance of clinical trials in theprevention and treatment of cancer.of the first sites in our region that was able to offer aclinical trial of this exciting new drug.There are over one hundred clinical trials availableat the University of Utah and HCI for the treatmentof cancer. There are also a variety of studies for theprevention of cancer. Saundra Buys, MD, is themedical director of the High Risk Breast CancerClinic, which is one of six NCI-funded breast cancerregistries. Individuals who have a strong familyhistory of breast cancer can visit the Family CancerAssessment Clinic for screening and possible participationin a clinical trial. These patients may be eligibleto participate in the NCI-sponsored STAR trial:Study of Tamoxifen and Raloxifen for the Preventionof Breast Cancer.The Familial Colon Cancer Research Clinic isdirected by Randall Burt, MD, and serves as aneducational and clinical resource for individuals andfamilies at increased risk of developing colon polypsand cancer. Huntsman Cancer Institute is the onlysite in the United States that offers a NIH-sponsoredchemoprevention trial for patients with FamilialAdenomatous Polyposis (FAP). Patients from aroundthe country come to Huntsman Cancer Institute toparticipate in this clinical trial under the guidance ofJames A. DiSario, MD.For both treatment and prevention clinical trials,participants are treated in the Huntsman GeneralCancer Research Center (HGCRC), which is locatedin the University of Utah Hospital. The HGCRC,directed by James Kushner, MD, is a valuableresource for doctors who are continually searching forsafe, effective new treatments for cancer. Clinicaltrials may also be conducted in an outpatient setting,and thus be available to patients being treated at theUniversity of Utah Health Network (UUHN).The University of Utah and Huntsman CancerInstitute recognize the importance of clinical trials inthe prevention and treatment of cancer. Offeringclinical trials to our patients is an integral part ofcancer care in the present and the future.16 Cancer Program

University of Utah Hospitals & ClinicsDeveloping the Future Generation ofOncology NursesSuccessful innovative approaches to the recruitmentof nursing students and the recruitment and retentionof practicing nurses into oncology is only onesolution to the complex combination of factors thatcontribute to our current nursing shortage in Utah.The Clinical Learning Facilitation Program forOncology Services and Operation Nurse, a UniversityHospital-based program, are directed at takingsignificant steps in improving our recruitment andretention efforts.The Clinical Learning Facilitation Program forOncology Services at University of Utah Hospitalsand Clinics aspires to be a model for the 21st centurydedicated to enrich clinical experiences of undergraduatenursing students. The program componentsinclude:• Oncology clinical nurse as facilitator for bedsidelearning• Oncology work study/scholarship programProgram Objectives:• Contribute to the student’s development in thefollowing areas using the oncology patient population:clinical competence, critical thinking, problem-solving,communication, and functioningeffectively as members or leaders of interdisciplinaryteams• Increase the student’s opportunity to customizelearning experiences• Optimize learning opportunities during thestudent’s clinical rotation• Increase student satisfaction with clinical experienceand staff nurse satisfaction with studentinteraction• Provide access to clinical staff with current clinicalskills and teaching experience• Develop the future generation of oncology nursesand nurse educatorsOperation NurseOperation Nurse will help the oncology servicesprogram develop its recruitment and retentionprogram, an essential aspect of attracting nurses andreversing the flight of nursing talent. The four majorobjectives of the program are to address compensationpractices, improve recruitment and hiringprocesses, provide new employee clinical orientation,and refocus the role of the nurse manager as “chiefretention officer”.Five undergraduate University of Utah College ofNursing students received HCI Oncology NurseScholarships in 2001. The program provides $1,000per semester for nursing students enrolled full-time,plus weekly seminars and clinical experience on thein-patient oncology unit. The scholarship and seminars,which are open to interested nursing students,are steps towards addressing our future demand foroncology nurses.Education, Prevention, and OutreachHuntsman Cancer Institute’s education and outreachservices are structured to provide cancer patients,their family members, and the general public withindividualized, high-quality, cancer-related information.The Department of Patient and PublicEducation (PPE) coordinates most of these outreachservices, which are free and open to the public.Programs range from a telephone information serviceand resource center, to public lectures and schoolpresentations, to a community skin-cancer screeningevent. It is the goal of the Department of Patient andPublic Education to focus on the multiple needs ofpatients who have cancer providing them with acontinuum of services that offer patient-focused,individualized, disease specific information in aformat that facilitates decision making.Cancer Program 17

University of Utah Hospitals & ClinicsCancer Learning CenterThe Cancer Learning Center opened in September of1999 in conjunction with the grand opening of thenew Huntsman Cancer Institute building. It is staffedby the same cancer information specialists who operatethe telephone service and with the assistance ofseveral volunteers. This resource center offers almost2,000 books, videos, audiotapes, and CD-ROMs forvisitors to borrow, including Spanish-language andlarge-print materials. Four computer stations allowpatrons to access health information via the Internetand to use health-related CD-ROMs. During theCenter’s first full year of operation, more than 10,200individuals visited the Cancer Learning Center,including 919 visitors who required the in-depthassistance of a cancer information specialist.Community Outreach ProgramThe Community Outreach Program is designed toheighten the public’s awareness and knowledge ofcancer-related topics. This program provides presentationsto public groups on such topics as nutritionand cancer prevention; the general biology and developmentof cancer; prevention strategies, and warningsigns of cancer; screening and early detection ofbreast and cervical cancer; skin cancer prevention andearly detection; and tobacco cessation. The presentationsare available in Spanish. This program alsodevelops collaborations with community-basedcancer organizations such as American Cancer Societyand Cancer Wellness House and assists in planningcommunity conferences and health fairs.Huntsman Cancer Information ServiceThe Huntsman Cancer Information Service is a tollfreetelephone service that provides accurate, up-todateinformation on all aspects of cancer (includingbut not limited to: risk factors, prevention, screeningand early detection, symptoms, diagnosis, treatment,rehabilitation, and coping). Cancer informationspecialists answer cancer-related questions and mailinformational brochures and handouts at no charge tothe user.During 2000, more than 8,400 individuals fromeighteen states, Canada and England utilized thisservice. Please refer to the graph below for informationregarding users who called the service.Friend/RelativeGeneral Public/OtherPatientUndiagnosed IndividualNot Able to AscertainHealth ProfessionalNon-health ProfessionalHCI/U of U EmployeeOther0 5 10 15 20 25 30Frequency %Employee EducationPPE staff organized and hosted an educational sessionentitled Colorectal Cancer: Present and Future Preventionand Treatment on April 4, 2000. This continuingeducation session was for HCI and UniversityHospital employees. HCI physicians Randall Burt,MD, and Christopher Fox, MD, discussed the currenttreatment protocols for colon and rectal cancers,related research underway at HCI, and the newlydesigned HCI screening guidelines for colon andrectal cancer. A total of 39 people attended the event.National PartnershipsFor the third consecutive year, HCI had a team inRace for the Cure. This community event, held on May13, 2000, raised money for the Susan G. KomenFoundation for breast cancer research and programs.This year’s team, organized by PPE staff, had 146members (last year’s team was 45). CommunityOutreach staff also staffed a booth containing educationalmaterials at the race.Free Skin Cancer ScreeningThis was an HCI sponsored event held on May 20,2000 and organized by Glen Bowen, MD. The clinicprovided free skin cancer screening to over 500 individuals.PPE staff members donated 33 hours of theirpersonal time to this worthwhile event.18 Cancer Program

University of Utah Hospitals & ClinicsPublicationsPPE developed a booklet entitled Community CancerResource Guide that provides a comprehensive listingof local and national organizations, programs, services,and support groups available for cancer patientsand their families. The guide is also sent to hospitalsand health providers across the state of Utah. Theguide is updated annually. A second booklet developedby the staff, How to Help Your Loved One StopSmoking, was created to help family members or lovedones provide effective support in having a smokerquit his or her habit.Health FairsDuring 2000, PPE staff participated in 13 healthrelatedevents. HCI was represented at each of theseevents with a booth that included educational materialsand promotional products that were available tothe public. Staff members were on hand to answerany inquiries. An estimated 33,960 communitymembers patronized these events and a combinedtotal of 7,350 publications and 15,600 promotionalitems were distributed. These events encompassedvarious audiences including corporations, students,and senior citizens.Community PresentationsSeventeen community presentations were given in2000. It is estimated that these presentations reachedan audience of almost 440 people. Over 1,145 publicationswere distributed and 1,068 promotional itemswere distributed. A listing of presentations follows:Date Presentation Type Group Type Location04-11-00 HCI Overview—Careers School Silver Mesa Elementary05-15-00 What is Cancer? Rowland Hall School HCI Auditorium06-20-00 Breast and Cervical Cancer Screening Church Highland 2nd Ward07-20-00 What is Cancer? School HCI Auditorium08-17-00 What is Cancer? Church HCI Auditorium09-14-00 HCI Update Utah County American Cancer Utah Valley RegionalSociety Breast CancerMedical CenterSupport Group09-18-00 General Cancer and Ovarian Cancer Rick’s College Students HCI Auditorium09-27-00 Diet and Nutrition— Litton Guidance Systems Litton Guidance SystemsWorksite Presentation10-05-00 Patient and Public Education Overview University Hospital Bone Marrow University HospitalTransplant Nurses10-10-00 Nutrition and Cancer Prevention Church HCI Auditorium10-18-00 What is Cancer? School HCI Auditorium10-26-00 Nutrition and Cancer Prevention Davis Retired School Employees Fairfield Junior High School11-08-00 What is Cancer? Support Group for ChildrenWhose Parents Have BeenDiagnosed with CancerHCI Auditorium11-10-00 Nutrition and Cancer Prevention Viewmont High School Viewmont High SchoolNutrition Class11-14-00 Breast and Cervical Cancer Church Oquirrh WardScreening and Early Detection11-17-00 What is Cancer? Enterprise High School HCI Auditorium12-08-00 What is Cancer? ATC High School HCI AuditoriumCancer Program 19

University of Utah Hospitals & ClinicsCommunity PartnershipsThe Community Outreach Program partnered withten other community programs to promote healthand awareness. Huntsman Cancer Institutecontributed with staff time, publications (1,500),and promotional items (1,000). The following is thelist of event collaborations:SPEAKING OF WOMEN’S HEALTH CONFERENCEMay 6, 2000MAN TO MAN SUPPORT GROUP FATHER’S DAYDINNER, LECTURE AND TOURJune 7, 2000, Huntsman Cancer InstituteUTAH BREAST CANCER COALITION SEMINARJune 13, 2000LIFE AFTER BREAST CANCER CONFERENCEOctober 14, 2000, Larry H. Miller EntrepreneurshipTraining CenterDEBBIE REGIER ELEMENTARY SCHOOL PRESENTATIONSOctober 19, 2000, Westminster Putuba SchoolCARING CONNECTIONS COPING WITH GRIEFIN THE HOLIDAYSNovember 14, 2000, Huntsman Cancer InstituteASK THE EXPERT GREAT AMERICAN SMOKEOUTNovember 16, 2000, KUTV Channel 2 StudiosCARING CONNECTIONS COPING WITH GRIEFIN THE HOLIDAYSDecember 14, 2000, Huntsman Cancer InstituteCancer Awareness MonthCancer awareness month displays were developed andplaced in The Point restaurant and the Patient CareCenter waiting rooms. A total of 2,000 educationalmaterials and 500 promotional items were distributedthrough this campaign. Following is a list oftopics:COLORECTAL CANCER AWARENESS MONTHMarch 2000CANCER FATIGUE AWARENESS MONTHApril 2000SKIN CANCER AWARENESS MONTHMay 2000Grants and AwardsThe PPE staff was awarded a $500 grant from theUtah Department of Health to develop a youthtobacco cessation program targeting underservedcommunities. How to Help Your Loved One Stop Smokingreceived the National Cancer Institute’s CancerPatient Education Network Award for Excellence inCancer Education–Written Materials.Institutional Web Sitewww.huntsmancancer.orgPublic Education Web Sitewww.hci.utah.edu/1014.html. This site, known asHuntsman Online Patient Education (HOPE)consists of documents and links to reputable medicalsites about cancer-related issues such as prevention,detection, treatment, care, and coping. 2000 statisticsfor the HOPE guide include 4,761 unique visitors,5,970 sessions, and 22,103 individual pages viewed.PUBLIC WEB SITE USAGE STATISTICSHitsEntire Site (Successful) 6,104,102Average Per Day 16,677Home Page 164,816Page ViewsPage Views (Impressions) 568,758Average Per Day 1,553Document Views 516,965Visitor SessionsVisitor Sessions 185,329Average Per Day 506Average Visitor Session Length 00:12:55Visitor Sessions of Unknown Origin 100%VisitorsUnique Visitors 40,690Visitors Who Visited Once 31,455Visitors Who Visited More Than Once 9,235Source: WebTrends. WebTrends is a registered trademark ofWebTrends Corporation. Other trademarks are the property oftheir respective owners.20 Cancer Program

University of Utah Hospitals & ClinicsPUBLIC WEB SITE USAGE18000160001400012000100008000600040002000001/01 01/29 02/26 03/25 04/22 05/20 06/17 07/15 08/12 09/09 10/07 11/04 12/02 12/30January 1, 2000 – December 31, 2000StaffingDepartment of Patient and Public Education staffmembers have been trained as cancer informationspecialists and serve a variety of different roles, fromanswering the phone lines of the Huntsman CancerInformation Service, to staffing the Cancer LearningCenter, to participating in community outreachevents through the Community Outreach Program.As of December 2000, PPE consisted of eleven staffmembers, including an oncology nurse and twohealth educators who are fluent in Spanish. Together,these cancer information specialists provided servicesto approximately 37,768 individuals through thethree department programs.Donna Branson, DirectorMelissa Dow, Manager of the Huntsman CancerInformation ServiceTanya Smith, Manager of the Cancer Learning CenterMargaret Wheeler, Outreach ManagerCancer Information SpecialistsKaren O’TooleDawnAnn OwensMartha MandujanoRebecca TriggWendy OlsonLara NiederhauserAdam Grundvig, SecretaryPrimary Intracranial/CNS TumorsPatient Care Evaluation StudyPrimary intracranial tumors affected approximately36,000 patients in the United States in 2000.Approximately 50% of these tumors were benign,with an equal number being malignant. Primarytumors of the central nervous system (CNS) weresecond only to leukemias as the most common cancerdiagnosis in children under age 15. There is also asecond peak in incidence between 65 and 79 years ofage. The overall incidence is 12.8 per 100,000 population—unchangedsince 1997. Prior to 1997, theincidence rate had been steadily increasing, likelydue to increasing availability of magnetic resonanceimaging (MRI) for diagnosis. As use peaked in 1997,the incidence has leveled off. The incidence rate ofbrain tumors in males is 13.53 per 100,000 people;in females the rate is 12.25 per 100,000 people,using Year 2000 reporting standards.Mortality from brain tumors has remained staticover the last decade. Primary brain tumors are secondonly to leukemia in terms of cancer related deaths inthe pediatric population. Brain tumors are the secondleading cause of cancer-related deaths in males ages20-39 and the fifth leading cause of cancer-related deathsin women ages 20-39. Primary CNS tumors accountfor 2.5% of all deaths due to cancer—an obviouslydisproportionate number compared to incidence.Cancer Program 21

University of Utah Hospitals & ClinicsThe most common primary brain tumors inadults are:• pituitary tumors in ages 20-34• meningiomas in ages 35-44• glioblastoma in ages 45-74• meningioma in ages 75 and olderThe most common primary brain tumors in childrenare:• primitive neuroectodermal tumors/medulloblastomain ages 0-9• astrocytoma in ages 10-14• pilocytic astrocytoma in ages 15-19The University of Utah diagnosed and/or treated84 malignant primary CNS tumors and an approximatelyequal number of benign CNS tumors in2000. This survey will focus on the malignanttumors only. The distribution by gender was 55%male and 45% female. The peak age at diagnosis was60-69 years. The most common histology wasglioblastoma multiforme (44%), followed by astrocytoma(24%); oligodendroglioma (14%); other glioma(10%); ependymoma (2.5%); other (5.5%). Themajority of patients with these diagnoses weretreated with multimodality therapy, includingsurgery and post-operative radiotherapy with orwithout chemotherapy.Malignant CNS tumors are the fifth mostfrequent cancer diagnosis treated at the UniversityHospital and Huntsman Cancer Institute. Thiscompares to the national incidence of primary braintumors as the number twelve cancer diagnosis. Thus,the University Hospital and Huntsman CancerInstitute clearly are an important referral center forthe care of patients with these complex diagnoses.EpidemiologyThe epidemiology of primary CNS malignancy hasprogressed to involve the study of environmental,viral and genetic exposures or insults as potentialetiologic agents. Chemical exposures with certainpesticides, herbicides, fertilizers and petrochemicalshave been reported to correlate with increased incidenceof brain tumors. In most cases, the data, aftervigorous statistical analysis, has not supported theseconclusions. Reports that exposure to strong electromagneticfields or radio frequency radiation is acausative agent in glial tumors (among other cancers)has received significant publicity. However, no welldesignedstudy has been able to confirm thesereports. The only proven association with chemicalexposures has been with vinylchlorides and gliomas.Viral exposures and infections have also beenimplicated in the development of gliomas, based onnumerous animal models. Avian sarcoma virusinjected directly into rat brains leads to glial tumordevelopment. A human polyoma virus injected intothe brains of hamsters produces medulloblastomas;injected into owl monkeys it produces gliomasand/or gliosarcomas. Patients infected with HIV areknown to have a high incidence of primary CNSlymphoma. It is thought that Epstein Barr Virus maybe the etiologic agent in these lymphomas as certainviral antigens can be isolated from tumors. Whilethese experiments are suggestive that viral agentsmay be associated with glial tumor development inhumans, no viral particles have ever been isolatedfrom human brain tumor specimens.Genetics can play a role in brain tumor incidenceas certain inherited familial syndromes demonstrate.Von Hippel-Lindau (VHL) syndrome is a disordertransmitted in an autosomal dominant fashion, associatedwith a high incidence of hemangioblastomasof the central nervous system and retina. The VHLgene was identified on chromosome 3p25-26, thensequenced and cloned in 1993. It encodes a tumorsuppressor gene which is involved in transcriptionalactivation. Tuberous sclerosis (Bourneville’s disease)is inherited as an autosomal dominant disease withvariable penetrance, or severity. Persons afflicted withthis disorder develop sclerotic tubers (benign) of thecortex which can develop into giant cell astrocytomas.Two genes, TSC1 and TSC2 have been identifiedon chromosomes 9q34 and 16p13, respectivelywhich, when mutated, are responsible for thisdisease. Finally, the most well known familial disorderassociated with brain tumors is VonRecklinghausen’s neurofibromatosis. Again, this is anautosomal dominant disease which has two majorforms—NF-1 and NF-2. NF-1 patients have a highincidence of a number of brain tumors, includingoptic gliomas, astrocytomas and glioblastoma multiforme.The gene responsible for NF-1 has been iden-22 Cancer Program

University of Utah Hospitals & Clinicstified on chromosome 17q11 and codes for a tumorsuppressor protein termed “neurofibromin”. NF-2 ischaracterized by bilateral acoustic neuromas which,rarely, can undergo malignant degeneration. Thesepatients also have a high incidence of meningiomasand gliomas. The NF-2 gene has been identified andlocated on chromosome 22 and codes for a tumorsuppressor protein called “merlin”.TherapyThe specific therapy of brain tumors depends uponboth the histologic subtype of the tumor and thepatient profile (age, performance status, etc.). Theultimate goal of therapy is cure or, at least, cytoreductionof the tumor while preserving normal neurologicfunction. Therefore, maximal surgical resection,within the constraints of neurologic preservation, isthe cornerstone of therapy for most adult braintumors. For well-circumscribed, low-grade tumorslocated in non-eloquent areas of the brain, surgeryalone may be curative. More infiltrative tumors orthose located in critical areas may require multimodalitytherapy consisting of combinations ofsurgery, radiation therapy and chemotherapy.Therapies for specific, common brain tumors areconsidered below.Cerebral AstrocytomasLow-grade (I/II) astrocytomas occurring in adultsgenerally are associated with a good prognosis, withexpected survival of greater than 5 years. Gross totalresection of amenable tumors may be curative in upto 50% of patients. Pilocytic astrocytomas (grade I)have 5- and 10-year survivals of 85 and 79 percent,respectively, while grade II astrocytoma 5- and 10-year survivals are 51 and 23 percent. For those withpost-operative residual disease, adjuvant radiotherapyis often recommended. There is some controversy asto whether this radiation should be delivered immediatelyor delayed until disease progression or associatedsymptoms are noted. Shaw, et al. reviewed theoutcome of patients treated with surgery alone versusthose that received at least 53 Gy of radiation therapy.The 5- and 10-year survival in the surgery alonegroup was 32 and 11 percent versus 68 and 39percent in the radiotherapy group, suggesting thatimmediate adjuvant radiation was beneficial.A recently published study by Leighton, et al.,however, demonstrated no statistical benefit toimmediate post-operative radiation (54 Gy) versusdelayed radiation.OligodendrogliomasLow-grade (I/II) oligodenrdogliomas occur mostly inmiddle-aged adults (median age 47), and can be associatedwith long term survival (median 9.8 years). Asabove, gross total resection may be curative and nopost-operative therapy is generally recommended.For those patients undergoing a subtotal resection,post-operative radiation therapy may be of benefit,although this issue is even less clear than for cerebralastrocytomas. Retrospective series published byShaw, et al. and Chin, et al. support the use of adjuvantradiotherapy, while a report from Bullard, et al.found no statistical difference in survival betweenpatients treated with post-operative radiation, andthose treated with surgery alone. No randomizedtrials have addressed this question.High-grade (III/IV) oligodendrogliomas aregenerally considered infiltrative tumors that cannotbe cured by surgery alone. Therefore, surgery may beused to debulk the tumor, but should not be done atthe expense of neurologic function. Post-operatively,radiation therapy is considered standard. A dose of60 Gy is recommended based on dose-response dataobtained for high-grade astrocytic tumors. No data iscurrently available describing a dose-response relationshipfor oligodendrogliomas. Median survival forthese more aggressive tumors is just over 3 years.Several non-randomized trials have documentedsignificant chemotherapy responses in patients witholigodendrogliomas. The most active combination ofagents appears to be procarbazine, CCNU andvincristine (PCV). Cairncross and MacDonald treatedpatients at first recurrence after surgery and radiationand noted a median survival of 1.2 years after PCV.Two other trials employing the PCV combinationsupport its use for recurrent disease as well. Datafrom the Northern California Oncology Groupsuggested that PCV used immediately after radiationtherapy improved both time to progression and overallsurvival for patients with anaplastic tumors,including oligodendrogliomas. Finally, an NCICanada trial of PCV in both newly diagnosed andrecurrent oligodendrogliomas demonstrated a 75%Cancer Program 23

University of Utah Hospitals & Clinicsresponse rate, confirming this tumor’s chemosensitivity.Recently, a specific genetic alteration in oligendrogliomashas been identified which predictschemosensitivity. A loss of chromosomes 1p and 19qis associated with a nearly 100% response rate toPCV chemotherapy. This important finding willallow for more tailored therapy for patients with thisrelatively rare tumor.Anaplastic Astrocytoma/Glioblastoma MultiformeThese extremely malignant (grade III/IV) tumors are,unfortunately, the most commonly diagnosed adultbrain tumor. Due to their infiltrative nature, theycannot be cured by surgery alone and patients willreceive some combination of surgery, radiation andchemotherapy. Regardless of therapy, though, themedian survival for all patients is just over 12months. Additionally, the median survival has notchanged over the last 10-15 years, suggesting thatdevelopment of effective therapies has not occurred.A number of controlled, prospective clinical trialsdeveloped and run by the BTSG/BTCG in the late1970’s and early 80’s sequentially analyzed the effectof adding post-operative radiotherapy andchemotherapy on survival in patients with AA’s andGBM’s. The initial trials demonstrated a survivaladvantage for post-operative radiation with a doseresponseup to 55-60 Gy. Higher doses were associatedwith greater toxicity and a decrease in survival.The addition of BCNU with or after radiotherapywas found to confer a survival advantage to only asubset of patients in the 40-60 year old age group. Infact, the most important prognostic variables foroutcome were found not to be therapy related, butpatient and tumor characteristics. Younger (age < 45),and healthier (KPS 90-100, normal mental status)patients with AA histology (versus GBM) hadimproved survival regardless of therapy, with mediansurvival of 59 months. Patients in the poorest prognosticgroup had a median survival of only 5 monthsin spite of aggressive therapy.The overall poor outcome of patients with malignantastrocytic tumors using standard therapiesprovides strong impetus for referring all newly diagnosedpatients to centers, such as Wake ForestUniversity Baptist Medical Center, where clinicaltrials are performed.Pediatric Brain TumorsBrain tumors are the most common solid tumor ofchildhood and adolescence, with approximately1,200 new cases each year in the U.S. Treatmentapproaches to the pediatric brain tumor patient mustbe specifically, and carefully, tailored to the tumorhistology as well as to the patient’s age. As mostpediatric brain tumors, unlike adults, are associatedwith long-term survival, the physician must takeinto consideration the late effects of therapies. Infantsand young children are especially susceptible to theeffects of cytotoxic therapies as they are still undergoingdevelopment of cognitive functions. Radiationtherapy and, to a lesser extent, chemotherapy havethe potential for significantly impairing this development.Therefore, all infants and children diagnosedwith brain tumors should be referred to medicalcenters with dedicated pediatric brain tumor multidisciplinarygroups.University Hospital and Huntsman Cancer InstituteExperienceThe adult and pediatric neuro-oncology group atUH/HCI is gaining national recognition for its innovativeand expert treatment of brain tumor patients.This multidisciplinary group consists of neurosurgeons,neuro-radiologists, radiation oncologists andneuro-oncologists all with a primary focus on braintumors. Also, an active basic research effort is focusedon the molecular biology and genetics of braintumors, with the expressed purpose of developingnovel therapies for the treatment of these tumors.The pediatric neuro-oncology group is active inthe Children’s Oncology Group (COG), playing a keyrole in the development of trials for the treatment ofbenign and malignant primary brain tumors. We areone of the few medical centers in the country wherestereotactic radiosurgery and intensity modulatedradiotherapy can be performed on pediatric braintumor patients. These very focused methods of deliveringradiation may provide a way of controllingtumors while limiting the potential late cognitiveand developmental effects of radiotherapy.Additionally, novel chemotherapeutic strategies arebeing evaluated as a way of completely avoiding theneed for radiotherapy in these patients.The adult neuro-oncology group participates as amember of the Radiotherapy Oncology Group24 Cancer Program

University of Utah Hospitals & Clinics(RTOG) and Southwest Oncology Group (SWOG)which have active protocols for newly diagnosed,recurrent and metastatic brain tumors. The stereotacticradiosurgery program at UH/HCI is the mostactive and experienced in the Intermountain West.Computer assisted, 3-dimensional conformal radiotherapyis routinely employed to treat brain tumorpatients who require radiotherapy. Novel radiotherapydelivery systems, such as the BrainLABTM intensitymodulated radiotherapy (IMRT) system and theGliaSiteTM intraluminal radiotherapy systems are inclinical use. New treatment modalities are constantlybeing evaluated, both in our laboratories and in theclinic and will be added as they prove effective.Figure 2. Pediatric low-grade glioma (recurrent) treated with LINAC-basedradiosurgery with follow-up MRI 6 months post-treatment.ReferencesShaw EG, Daumas-Duport C, Scheithauer BW, et al.Role of radiation therapy in the management of lowgradesupratentorial astrocytomas. J. Neurosurg.70:853, 1989.Leighton C, Fisher, B, Bauman, G, et al.Supratentorial low-grade glioma in adults: an analysisof prognostic factors and timing of radiation.J. Clin. Onc. 15:1294, 1997.Shaw EG, Scheithauer BW, O’Fallon JR, et al.Oligodendrogliomas: the Mayo Clinic experience.J. Neurosurg. 76:428, 1992.Chin NW, Hazell JJ. Kim TH, Webster JH.Oligodendrogliomas: I. A clinical study of cerebraloligodendrogliomas. Cancer 45:1458, 1980.Bullard DE, Rawlings CE, Phillips B, et al.Oligodendroglioma: an analysis of the value of radiationtherapy. Cancer 60:2179, 1987.Cairncross JG, MacDonald DR. Chemotherapy foroligodendroglioma: progress report. Arch. Neurol.48:225, 1991.Levin VA, Silver P, Hannigan J, et al. Superiority ofpost-radiotherapy adjuvant chemotherapy withCCNU, procarbazine, and vincristine (PCV) overBCNU for anaplastic gliomas: NCOG 6G61 finalreport. Int. J. Rad. Onc. Biol. Phys. 18:321, 1990.MacDonald DR, Gaspar LE, Cairncross JG.Successful chemotherapy for newly diagnosed aggressiveoligodendroglioma. Ann. Neurol. 27:573.Walker MD, Alexander E, Hunt WE, et al.Evaluation of BCNU and/or radiotherapy in thetreatment of anaplastic gliomas" a cooperative clinicaltrial. J. Neurosurg. 49:333, 1978.Chang CH, Horton J, Schoenfeld D, et al.Comparison of postoperative radiotherapy andcombined postoperative radiotherapy and chemotherapyin the multidisciplinary management of malignantgliomas. Cancer 52:997, 1983.

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