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Adult Oncology Services

Introduction

General Information

Treatment

Cancer Prevention and Screening

Support Services

Supportive Care

Clinical and Research Efforts


Pediatric Oncology Services

Introduction

General Information

Clinical and Research Information

Special Expertise

Statistics


Genetic Counseling and Testing Service

Introduction

Intake Process

Testing

Post-Test Counseling and Follow-Up

Research

Other Components of Genetic Services


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  University of Michigan Comprehensive Cancer Center

For information on clinical trials at this NCCN Member Institution click here.

The University of Michigan Comprehensive Cancer Center was established in 1986 as a Center of Excellence at the University of Michigan (U-M) Health System and received its comprehensive designation by the National Cancer Institute in 1988. The Center is committed to the conquest of cancer through innovation and collaboration between scientists and clinicians to achieve superior and compassionate patient care; scientific and technological innovation in cancer research, prevention, control, and treatment; and excellence in training cancer researchers and health care providers.

The opening of the nine-story Cancer Center building in May 1997 on the U-M Medical Center campus placed patient care and research side-by-side in the same building, facilitating communication between specialists and the quick transfer of research findings into the clinic. The building offers diagnostics, treatment, and support services dedicated to cancer patients under one roof, along with convenient parking.

Multidisciplinary clinics bring together in one setting all the experts needed to develop comprehensive diagnosis and treatment plans. In fact, the U-M Cancer Center has received national attention as a model for its tumor-based team approach to optimize coordination of care for both adult and pediatric patients. Working in teams and with colleagues in local communities throughout Michigan and at other leading centers in the country (NCCN), Cancer Center physicians use an array of advanced methods to detect cancer early and treat it aggressively.

The Center offers a comprehensive range of supportive services, including a Patient Education Resource Center, Complementary Therapies, Nutrition Counseling, Child and Family Life Services, Art Therapy, Social Work Services, and more. Dedicated, highly trained professionals promote healing through these support services and are assisted by a team of volunteers, including many cancer survivors.

The Center has approximately 400 physicians/researchers who receive more than $79.5 million in annual total grant funding. In 2007, the UMCCC ranked among the top 10 cancer centers nationally in research funding from the National Cancer Institute. Recent headlines about the innovative research efforts under way in the Cancer Center’s 11 basic, clinical, and prevention research programs include:

  • First identification of stem cells in pancreatic and head and neck tumors, a discovery that could lead to the development of new, more effective cancer treatments.
  • First identification of a recurring pattern of scrambled chromosomes and abnormal gene activity unique to prostate cancer.
  • Identification of a panel of 22 biomarkers that together provide a more accurate screening for prostate cancer than the current PSA test.
  • Studies underway in nanotechnology to develop a dendrimer platform that could revolutionize cancer therapy by providing personalized, molecularly assembled drugs directly into cancer cells.
  • Development of Bexxar®, FDA-approved, highly effective as first line treatment for patients with non-Hodgkin’s lymphoma.
  • Study indicating that Herceptin, a targeted drug shown to improve the outcome of certain breast cancer patients, may be of use in the treatment of advanced cases of bladder cancer.
  • Completion of clinical trial finding that anti-depressant Paxil™ reduces hot flashes in breast cancer survivors.

Visit the Cancer Center web site at www.mcancer.org for more information.


University of Michigan Comprehensive Cancer Center
Adult Oncology Services

The University of Michigan Comprehensive Cancer Center was established in 1986 as a Center of Excellence at the University of Michigan (U-M) Medical Center and received its comprehensive designation by the National Cancer Institute. The Center is committed to the conquest of cancer through innovation and collaboration between scientists and clinicians to achieve superior and compassionate patient care; scientific and technological innovation in cancer research, prevention, control, and treatment; and excellence in training cancer researchers and health care providers.

The nine-story Cancer Center building opened in May 1997 on the U-M Medical Center campus, placing patient care and research in the same building, and facilitating communication between specialists and the quick transfer of research findings into the clinic. The building offers diagnostics, treatment, and support services dedicated to cancer patients all under one roof, along with convenient parking.

The Center offers a comprehensive array of supportive services, including a Patient Education Resource Center, Complementary Therapies, Nutrition Counseling, Child and Family Life Services, Art Therapy, Social Work Services, and more. Dedicated, highly trained professionals promote healing through these support services and are assisted by a team of volunteers, including many cancer survivors.

The Center has approximately 4000 physicians/researchers who receive nearly $80 million in annual total grant funding. The UMCCC consistently ranks highly in the U.S. News and World Report listing of Top Hospitals.

Multidisciplinary Teams

The UMCCC has 17 multidisciplinary clinics that bring together in one setting all the experts needed to develop comprehensive diagnosis and treatment plans. In fact, the U-M Cancer Center has received national attention as a model for its tumor-based team approach to optimize coordination of care for both adult and pediatric patients. Working in teams, with colleagues in local communities throughout Michigan and at other leading centers in the country (NCCN), Cancer Center physicians use an array of advanced methods to detect cancer early and treat it aggressively.

The 17 multidisciplinary teams are as follows:

  • Breast
  • Melanoma
  • Genitourinary
  • Sarcoma
  • Pancreatic
  • Lung
  • Thoracic
  • Head and Neck
  • Endocrine/Adrenal
  • Leukemia
  • Lymphoma
  • Blood and Marrow Transplantation
  • Neuro (Brain)
  • Liver
  • Cutaneous Oncology
  • Gynecologic Oncology
  • Myeloma

Special Expertise

In addition to the above multidisciplinary clinics which offer a depth of expertise across cancer disciplines in medicine, surgery, radiation oncology, pathology, and radiology, the Cancer Center also has teams with specialized expertise in pediatric, orthopedic, and gastrointestinal cancers as well as hematologic disorders, breast and ovarian cancer risk evaluation, cancer genetics, fertility counseling, gamete cryopreservation and psych-oncology.


General Information

General Information

Cancer AnswerLine: 800.865.1125

Physician-to-Physician Communications

800.962.3555

Location

Ann Arbor, Michigan
Located 30 minutes from Detroit Metropolitan Airport.

Facility

The Cancer Center is part of the University of Michigan Health System, located on the northeast corner of the University of Michigan campus in the center of Ann Arbor. The city of Ann Arbor is located 35 miles west of Detroit, the largest metropolitan area in the state. The Cancer Center is located at the north entrance of the Medical Center and is connected to the University of Michigan Hospitals. It houses the Cancer Center’s outpatient clinics, infusion center, blood draw and radiology services, photopheresis and an outpatient surgical procedure suite. Convenient evening and Saturday hours are available to patients receiving infusions. Urgent care services for adult cancer patients are offered Monday through Saturday so patients do not have to visit the U-M Hospital's emergency room for non-emergent, cancer-specific needs.

The UMCCC was designed with significant patient input in order to be attractive and comforting to patients, with emphasis on patient-centered care. A full range of support services are offered, including patient education, nutrition, onsite pharmacy, Survivors Art Gallery, and a full array of patient support services.

Travel Assistance

The UMHS has a Guest Assistance Program (GAP) that provides assistance to our patients and families across the spectrum of needs, including transportation by motor vehicle and plane. Information on the GAP can be viewed online at www.med.umich.edu/gap

Lodging

The UMHS has a moderately priced hotel on its premises called the Med Inn for use by patients and families. The Guest Assistance Program is dedicated to assisting patients and families with lodging in and around Ann Arbor. Special accommodations are also available for BMT patients.


Treatment

All Disease Centers listed below can be reached by calling 800.865.1125.

  • Adrenal Cancer
  • Blood and Marrow Transplant
  • Breast Care Center
  • Breast and Ovarian Risk Evaluation
  • Breast Wellness
  • Fertility Counseling and Gamete Cryopreservation
  • Gynecologic Oncology
  • Head and Neck
  • Hematology Oncology
  • Leukemia
  • Liver
  • Long Term Follow-Up Clinic
  • Lung
  • Lymphoma
  • Melanoma
  • Neuro Oncology
  • Pancreatic
  • Pituitary/Neuroendocrine
  • Urologic Oncology (prostate, kidney, bladder, testes)
  • Radiation Oncology
  • Sarcoma
  • Surgical Oncology
  • Thoracic Surgery Oncology

Blood and Marrow Transplant Program

The following diseases may be treated using autologous, allogenic, or cord blood stem cell transplant:

  • Acute and Chronic Leukemias
  • Congenital Disorders of Hematopoiesis and Immunity
  • Aplastic Anemia
  • Myelodysplastic Syndromes
  • Myelofibrosis
  • Non-Hodgkin's Lymphoma
  • Refractory Hodgkin's Disease
  • Thalassemia, Sickle Cell Anemia, and other Hemoglobin Disorders
  • Germ Cell Tumors
  • Hodgkin's Disease
  • Multiple Myeloma
  • Solid Tumors

Alternative/Complementary Medicine

The mission of the U-M Cancer Center’s Complementary Therapies Program is to complete the circle of care by integrating complementary therapies with conventional medical treatment. The Complementary Therapies Program does not encompass clinical trials; however, it does offer the following services:

  • Acupressure
  • Acupuncture
  • Art Therapy
  • Guided Imagery
  • Massage Therapy, Meditation
  • Music Therapy
  • Yoga
  • Nutrition Services

Patients can learn more about any of these programs by contacting the Patient Support Services staff at 734.615.4012. Visit the Web site at http://www.cancer.med.umich.edu/support/patient_support.shtml for more information.

Long-Term Follow-Up (Late Effects) Clinic

The University of Michigan Comprehensive Cancer Center's Long-Term Follow-Up Clinic was opened in 1999 to meet the needs of adolescents and young adults diagnosed with a malignancy in childhood or adolescence who have been out of treatment for at least five years. The clinic focuses on the patient's whole life situation, not only on their cancer. Survivorship issues are addressed, including feelings of isolation from one's peer group, neurocognitive problems, and growth and fertility concerns. Visit the Web site at http://www.cancer.med.umich.edu/clinic/longtermclinic.htm for more information.


Cancer Prevention and Screening

The Cancer Center conducts regular screenings in the community for head and neck, skin, and prostate cancers free of charge. Smoking cessation and nutritional counseling are offered to Cancer Center patients free of charge as well.


Support Services

The Cancer Center offers over a dozen different support groups, ranging from parents of children with cancer to specific support groups for patients and survivors of bladder, gynecological, head and neck, lung, breast, and numerous other cancers, including groups for young adults. In addition, the U-M Department of Psychiatry, working with the Cancer Center, provides individual and group therapy for patients and families. The Cancer Center’s PsychOncology program offers several counseling and therapy options for patients and family members living with advanced cancer. All group therapy sessions are guided by trained professionals who are able to address a variety of family and employment issues.


Supportive Care

Pain Service

Services are coordinated through the U-M Multidisciplinary Pain Center, and are limited to patients of the U-M Health System by physician referral only. For appointments, call 734.763.5459.

Palliative/Supportive Service

Palliative Care at the Cancer Center is directed by Susan Urba, MD, Associate Professor, Internal Medicine/Division of Hematology/Oncology. Dr. Urba is a medical oncologist with a major interest in clinical research in head and neck cancer and pain management.

Home Care/Hospice Service

The Cancer Center’s Patient Support Services Department provides referral to home care and hospice services. The Center does not operate such facilities/services.

Nutrition Service

In addition to making dieticians available for cancer inpatients and BMT patients in particular, the Cancer Center employs two full-time nutritionists to offer counseling to all newly-diagnosed cancer patients (1.5 devoted to adult/0.5 devoted to pediatric patients).

Rehabilitation Service

The UMCCC offers a full range of rehabilitative services, including physical therapy, occupational therapy, nausea and fatigue management, speech therapy, and lymphedema management.

Cooperative Group Membership

Cooperative Group Membership List

The UMCCC participates in:

  • SWOG
  • RTOG
  • CCG
  • ECOG
  • CALGB
  • NCCTG
  • NCIC
  • GOG

Activities in Cooperative Group

Several faculty have leadership roles in SWOG and CCG. Effective 2005 Dr. Laurence Baker serves as head of SWOG.

Average Number of Adult Clinical Trials

In 2006, the UMCCC enrolled 739 patients on therapeutic trials. 


Clinical and Research Efforts

The collaboration and regular contact that occurs in the Cancer Center due to the juxtaposition of clinicians and researchers under one roof encourages translational research. Through these collaborations, new investigator-driven clinical trials have been developed that provide patients with a full range of treatment options, and ultimately lead to better approaches to the prevention, diagnosis, and treatment of cancer. U-M is a national leader in cancer research, having consistently ranked among the top 10 cancer centers in the U.S. based on research funding from the National Cancer Institute.

Adult Oncology Program *

No. of Inpatient Beds (Medical/Surgical)

No. of Admissions

Average Length of Stay (days)

No. of New Outpatients

No. of Oncologists (Medical and Surgical)

64

 

 

13,488

90

*July 1, 2006 – June 30, 2007


University of Michigan Comprehensive Cancer Center
Pediatric Oncology Services


Introduction

The University of Michigan (U-M) Comprehensive Cancer Center treats pediatric oncology outpatients at the Cancer Center facility that opened in May 1997. Pediatric oncology inpatients are admitted to the C.S. Mott Children’s Hospital. U-M has the largest research effort in Pediatric Oncology in Michigan. The U-M program is one of the very few to hold an NCI training grant in Pediatric Hematology in the United States, which allows the program to train future academicians in clinical care and research involving childhood hematology/oncology disease. U-M researchers have contributed to the declining mortality rate for childhood cancers. U-M’s Pediatric Hematology/Oncology Programs manage patients with pediatric solid tumors, including neuroblastomas, rhabdomyosarcomas, Wilms’ tumors, and brain tumors, as well as patients with lymphomas, leukemias, and other childhood cancers.

U-M pediatric oncologists have expertise in the management of all childhood cancers and are world-renowned experts in the areas listed below.

Special Expertise

  • Blood and Marrow Transplant
  • Brain Tumors
  • Leukemia
  • Long-Term Follow-Up
  • Lymphomas
  • Neuroblastoma
  • Radiation Oncology
  • Retinoblastoma
  • Sarcomas
  • Wilms’ Tumor


General Information

Ages Treated

Children of all ages are treated.

General Information Hot Line

800.865.1125, 9 AM to 4:30 PM EST, Monday through Friday.

Physician-to-Physician Communications

800.962.3555

Location

Ann Arbor, Michigan

Facility Description

The C.S. Mott Children’s Hospital combines the most advanced medical technology with an inviting, very human setting and a full spectrum of amenities for patients and their families. The décor is brightly colored and the equipment child-sized. Each hospital room at the Children’s Hospital contains sleeping accommodations for overnight guests.

Travel Assistance

Social workers arrange transportation for patients. Chartered aircraft are available to transport patients throughout the United States and Canada. U-M participates with numerous not-for-profit organizations that provide free air transportation for cancer patients going to/from recognized cancer treatment centers on commercial, corporate, and private aircraft.

Lodging

Social workers assist in lodging arrangements for families. Families needing lodging and who cannot afford it can contact the Social Work Department at 734.764.3140 for information about assistance. The U-M has arrangements with local hotels and motels for discounted accommodations. The Guest Assistance Program can suggest a number of convenient, reasonably priced hotels, some with shuttle service to and from the Medical Center. For assistance, call 800.888.9825 or 734.764.6893.

A Ronald McDonald House is nearby. This temporary residence serves as an inexpensive "home away from home" for the parents and families of children being treated at the Medical Center. It offers more than 20 bedrooms, kitchen and laundry facilities, family rooms, and the support of other parents and hospital volunteers. For information, call 734.994.4442.

The “Med-Inn” is a hotel connected directly to the U-M Medical Center. This comfortable 90-room hotel, adjacent to the Cancer Center, offers double rooms, mini-suites, executive suites and barrier-free guest rooms. For information and rates, call 734.936.0100 or 800.544.8684. Also, U-M works with families in the community who offer rooms in their homes at no cost.

Social Support

All social workers are Master's level professionals with expertise in assisting those faced with health issues. Cancer Center social workers are specialists in the area of illness-related problems and are available for individual consultation. Social workers offer support and education groups to cancer patients and their families, including support groups for adolescents with cancer and parents of children with cancer. The Child Life Department operates an on-site school and offers tutoring. Child Life specialists help children understand feelings and medical interventions through medical play.

Financial Assistance

Social work assists families in obtaining financial assistance from Children’s Special Health Services. CSHS will help pay health care costs for patients that need assistance. Social work also arranges transportation and meal support for patients when needed.

Home Health Care

U-M has a non-profit home health agency, “Home Med.” The program actively participates in the development of outpatient protocols for the treatment of pediatric malignancies. In addition, the center works with other home care agencies in Michigan and adjacent states.


Clinical and Research Information

Director of Division Pediatric Hematology/Oncology

Laurence A. Boxer, MD

Director of Bone Marrow Transplant and Inpatient Oncology Services

John Levine, MD (Inpatient BMT)

Director of Outpatient Pediatric Oncology Services

Ray Hutchinson, MD

Multidisciplinary Teams

U-M is a national leader in the multidisciplinary approach to cancer care. The multidisciplinary team includes highly trained physicians, four pediatric oncology nurse practitioners and pediatric bone marrow transplant nurses who provide ongoing care to patients. The specialists involved depend on the individual needs of each patient. The multidisciplinary clinic held for pediatric brain tumors permits patients and their families to consult with a group of medical specialists including neurologists, radiation oncologists, neurosurgeons, hematologist/ oncologists, and experts in rehabilitative medicine.

Cooperative Group Membership

Children’s Oncology Group (COG)

Cooperative Group Activities

The pediatric hematology/oncology faculty and nurse practitioners play an integral role in COG committees specifically for the development and implementation of treatment protocols and basic research studies in oncology. Staff participate in COG committees and strategy groups on the following diseases:

  • Acute lymphoblastic leukemia
  • Hodgkin’s disease
  • Non-Hodgkin’s lymphoma
  • Neuroblastoma
  • Brain tumors

In addition, BMT faculty serves in leadership positions in COG (Vice-chair Stem Cell Transplant Committee), NIH BMT Clinical Trials Network (Chair), and Pediatric Blood and Marrow Transplant Consortium (Executive Committee).

Average Number of Pediatric Clinical Trials

60

Pediatric Clinical Trial Coordinator

Margaret Barnich, CCRA, for Pediatric Hematology/Oncology
734.763.6345


Research Efforts

U-M has the largest research effort in Pediatric Oncology in Michigan. Studies are ongoing to better understand genetic mechanisms underlying neuroblastoma, acute leukemia, and brain tumors. The U-M program is one of only three centers in the U.S. to hold an NCI training grant in Pediatric Hematology, which allows the program to train future academicians in clinical care and research involving childhood hematology/oncology disease.

The bone marrow transplant research portfolio is broad and includes:

  • Novel agents for the treatment and prevention of graft-vs.-host disease
  • Tumor lysate pulsed dendritic cell cancer vaccine for patients with high risk solid tumors
  • Treatment of refractory neuroblastoma with MIBG, chemotherapy, and autologous bone marrow transplantation


Special Expertise

Blood and Marrow Transplant

Since 1990, U-M has performed bone marrow transplantation for the treatment of leukemia and other hematological malignancies, solid tumors, and a variety of other cancer-related diseases. U-M performs autologous, related, unrelated, and cord blood allogenic transplants. A comprehensive strategy aims to improve outcomes by both decreasing transplant toxicities and reducing the risk of cancer recurrence. For example, to better treat the often lethal pulmonary related complication of idiopathic pneumonia syndrome, U-M researchers developed a TNF-inhibition treatment that has demonstrated a 67% reduction in mortality.  Likewise, because relapse is the primary cause of treatment failure for patients with high-risk neuroblastoma, U-M researchers have developed trials that utilize pre-transplant MIBG therapy (a novel method for delivery of high-dose radiation to metastatic foci of neuroblastoma disease) or post-transplant immunotherapy with a tumor-lysate pulsed dendritic cell cancer vaccine.  The bone marrow transplant program is accredited by FACHT and is approved by the National Marrow Donor Program.

Brain Tumors

Using a multidisciplinary approach, each patient is assigned a team consisting of a child neurologist trained in neuro-oncology, a pediatric neurosurgeon, radiation oncologists, nurse practitioners, and social workers. The division is actively involved in the evaluation of new drug protocols.

Leukemia

U-M researchers have contributed to the declining mortality rate for childhood cancers. For example, U-M led a national trial establishing the value of delayed intensification for the management of childhood ALL in the U.S.

Long-Term Follow-Up

This program is designed to meet the needs of adolescents and young adults diagnosed with cancer as children, who are now five years past all therapy. Staff members are involved in the Childhood Cancer Survivors Study Group to examine the long-term effects of treatment on childhood cancer survivors, in conjunction with the University of Minnesota.

Neuroblastoma

Faculty are national leaders in the generation of clinical guidelines and clinical research trials for the treatment of neuroblastoma.

Radiation Oncology

U-M has one of very few “racetrack microtrons” in the country. The microtron is able to focus radiation onto a treatment field that conforms more closely to the shape of the tumor, thus sparing adjacent normal tissue.


Statistics

Percent of children treated in each age range

Age Range

0–1

2–5

6–12

13+

Percent Treated

1%

18%

35%

45%

Pediatric Oncology Program - Fiscal Year 2005

No. of Inpatient Beds

No. of Oncologists

No. of Admissions

Average Length of Stay (days)

No. of New Outpatients

Total Outpatient Visits

16

15

1,049

7.31

496

5,390

Pediatric Bone Marrow Transplant Program—Fiscal Year 2007

No. of Inpatient Beds

No. of Transplanters

Average Length of Stay (days)

Number of Bone Marrow Transplants

8

5

32.2

43


The University of Michigan Comprehensive Cancer Center
Genetic Counseling and Testing Service

The University of Michigan offers medical genetics and cancer genetics services through the Breast and Ovarian Cancer Risk Evaluation Program (BOCREP) and the Molecular Medicine and Genetics (MMG) Clinic. These programs provide comprehensive genetic services for individuals with cancer, their family members, and individuals with a family history of cancer. The focus is on pre-symptomatic risk assessment and management, diagnostic evaluation, client education, genetic testing, reproductive risk counseling, the coordination of multidisciplinary patient care and access to appropriate research protocols. Multidisciplinary teams staff the clinics, and include physicians who are board-certified and board-eligible in clinical genetics, oncology, gynecology, and surgery, as well as board-certified and board-eligible genetic counselors with training and experience in cancer genetics.

Location

Ann Arbor, Michigan

Director, Breast and Ovarian Cancer Risk Evaluation Program

Sofia Merajver, MD, PhD

Schedule Appointments

734.764.0107

Molecular Medicine and Genetics Clinic

Stephen B. Gruber, MD, PhD

Schedule Appointments

734.763.2532

 

The following tables set out the components of the comprehensive genetic testing program at the University of Michigan.

Intake Process

Physician Awareness

Staff from the U-M risk assessment and genetic counseling clinics offer continuing medical education for community physicians and nurses. Multiple venues for professional education are used for the 15–20 programs offered per year. Topics include updates on cancer genetics and counseling.

Patient Education

Clients receive education aimed at conveying basic genetic concepts and the relationship between genes and cancer. U-M has developed an original counseling handbook and CD-ROM for this purpose. Copies of this program are available for health professionals by calling 734.936.6884.

Referral

Practitioners throughout the region and beyond may access the U-M clinics through the intake phone lines or through the U-M CancerAnswer Line:

800.865.1125. Nurses trained in the intake process for cancer genetics staff the 800 number. They refer the client to the appropriate cancer genetics clinic at U-M. Community surgeons, internists, oncologists, gynecologists, family practitioners, and other specialists also routinely refer clients.

Identify Eligible Subjects

In order to adequately serve the rare and the more common syndromes associated with inherited breast and ovarian cancer, a comprehensive breast and ovarian cancer risk evaluation Program (BOCREP) has been dedicated to those clients with a family history of breast, ovarian, and other associated cancers.

The Molecular Medicine and Genetics (MMG) Clinic and Cancer Genetics Clinic evaluate clients with other potential familial cancer syndromes, such as familial colon cancer due to APC, HPNCC, Muir-Torre, and other colorectal cancer syndromes.

Patients receive comprehensive evaluation for Familial Melanoma and von Hippel-Lindau syndromes through the multidisciplinary melanoma and urologic oncology clinics in conjunction with cancer genetics evaluation by the MMG. The MMG has identified several families to date with the rare Li-Fraumeni syndrome. U-M offers comprehensive services to these family members.

Pre-test Counseling and Risk Assessment

Comprehensive risk evaluation targeted to the client’s main concerns is accomplished via extensive pre-session preparation. Typically questionnaires are mailed to clients prior to appointments. Clients are encouraged to consult family members and records in the process of filling out the information. After the questionnaires are returned, genetic counselors draw a detailed pedigree and evaluate future cancer risk for both unaffected and affected patients using appropriate empiric or analytic models, as warranted by the history. If the patient is eligible and interested in genetic testing, the pre-test counseling and informed consent process for testing takes place.

After completing a medical and family history questionnaire, a client meets with a genetic counselor who discusses with the client the risks, benefits and limitations of testing. Genetic counselors cover a wide range of topics during this session, including the client’s personal risk of cancer, behaviors thought to affect risk. (diet, smoking, and exercise/weight control). Eligibility for prevention protocols is also addressed.

Genetic counselors discuss how knowing whether a person carries a mutated gene will affect him/her medically, in decisions about screening or prophylactic surgery; socially, in terms of potential discrimination; and psychologically, with possible bouts of anxiety or depression.

At the BOCREP, women are instructed in proper breast self-examination. After consultations, each client is sent a confidential letter that reviews these recommendations. This letter will be sent to the client’s personal or referring physician as well.

Recommendations for special pediatric care in potential at-risk children and adolescents are issued as part of the care that families with Li-Fraumeni syndrome and Cowden syndrome receive.

Informed Consent Procedures

All testing for cancer susceptibility genes requires the client sign an informed consent document. This is required by Michigan state law.  Discussions take place prior to testing that cover potential risks and benefits of testing.


Testing

Confidentiality Standards

The client’s family history is part of the medical record, as is documentation of physical examination findings and the fact that a genetic counseling session has occurred. A copy of the patient letter detailing all patient visits goes into the medical record. No results of genetic testing are posted on the computer-based medical record. Results of genetic testing or the contents of the counseling discussion are disclosed to other parties only with explicit written permission of the client.

Testing

Licensed commercial laboratories are used for most cancer gene testing at U-M. Depending on the test, different labs have been found to be most suitable for clients’ needs. U-M offers BRCA1 & BRCA2 testing to eligible individuals. Based on the family history, geneticists may recommend chromosomal analysis, p53, PTEN, or mismatch repair gene testing, or if indicated, other appropriate genetic tests, as outlined below.

Available Testing at or Through U-M

Cancer/Syndrome

Gene

Breast and Ovarian Cancer

BRCA1 & BRCA2, p53

Familial Adenomatous Polyposis Colon Cancer

APC

Hereditary non-Polyposis Colon Cancer

MLH1, MSH2, MSH6

Familial Melanoma

p16 or CDK2NA

von Hippel-Lindau

VHL

Li-Fraumeni Syndrome

p53

Cowden Syndrome

PTEN

Laboratory Quality Assurance

All laboratories offering testing are CLIA approved.

Test Result Interpretation

The medical geneticist/oncologist interprets all genetic testing results in light of the client’s overall health risk assessment, including personal and family history, the published literature, and database repositories of mutations (through the Internet and other resources). The risk conveyed by a specific mutation is estimated based on all the above data for each individual’s case.


Post-Test Counseling and Follow-Up

Post-test Counseling

The results of the genetic testing and interpretation of results are communicated to the client in a face-to-face counseling session. Arrangements are facilitated with other cancer genetics clinics for family members seeking counseling at locations outside U-M.

Cancer Screening

The genetics counseling team recommends evidence-based surveillance strategies and addresses periodicity of exams and imaging modalities, and use of serologic markers. Screening for early detection of breast, ovarian, colon, prostate, and other cancers are discussed with clients as appropriate. Syndrome-specific recommendations are issued for von Hippel-Lindau, Li-Fraumeni, Cowden syndrome, hereditary colorectal cancer, and other syndromes.

Medical and Surgical Management

As part of the outcome, follow-up care recommendations are issued in writing to the client and to the referring health care provider. These instructions describe the cancer risk, recommend alterations in lifestyle, and frequency of screening tests. Clients are informed before the pre-test counseling starts that such a letter will be sent to the referring physician.

Referrals for surgery, gynecology, dermatology, and other medical services are implemented in a syndrome- and client-specific fashion.

Psychological and Supportive Services

Referrals for short- or long-term counseling and support groups, peer groups, and counselors are available for clients.


Research

Most aspects of genetic risk assessment for cancer susceptibility syndromes warrant evaluation by research protocols, as standards of care are being defined. Appropriate referrals are made for such studies at U-M and at other institutions.

Identifying New Genes

The Prostate Cancer Genetics Project at U-M was established to determine possible genetic causes of prostate cancer. Families in which more than one individual has been affected with prostate cancer can participate in a study.

Families in which colorectal, familial melanoma, and von Hippel-Lindau syndromes occur may volunteer so researchers can study the relationships between genes, and between genes and the environment.

Families with breast and ovarian cancer are recruited to investigate gene modulation of penetrance, psychosocial impact of genetic testing and counseling, and novel methods of conveying risk information such as electronic media and CD-ROMs.

Improving Counseling Methods

At the U-M BOCREP, research studies on perceived risk and influence of risk on screening practices, lifestyle, depression, mood, attention, and satisfaction with the informed consent process are underway. The U-M is very active in research on using novel methods of conveying risk information, such as electronic media and CD-ROMs in genetic counseling.

Improving Testing Methods

MRI is now considered standard of care for BRCA1/2 patients, and genomic deletions are now tested for routinely in BRCA1/2 by Myriad Genetic Laboratories. 

Implementing Chemoprevention Trials

The chemoprevention trials have closed

Discovering Clinical Treatments for Genetic Disorders

 

Tracking Long-Term Results of Prophylactic Surgeries, Medical Surveillance Choices, and Preventative Interventions

Mechanisms for ascertaining satisfaction with prophylactic surgery choices are being implemented. The BOCREP tracks the incidence of second malignancies and recurrences on a yearly basis.

Participating in Familial Registries or National Registries

The client’s socioeconomic, demographic, personal, and genetic test result information is kept in an encrypted manner as part of the BOCREP database. A separate informed consent must be signed for provision of patient’s information to national registry databases, where all mutations are entered anonymously (without cross-reference to the patient) in Internet-based, password-accessible data repositories.

U-M participates in the North American and European Breast Cancer Linkage Consortium.

Studying the Impact of Receiving Genetic Information on Health-Related Outcomes

Mechanisms for ascertaining the outcome and adherence to lifestyle changes and screening recommendations are being implemented.


Other Components of Genetic Services

Quality Assurance

The BOCREP is sponsored by the U-M Comprehensive Cancer Center and thus is subject to its quality control procedures.

Genetic counselors periodically review records to compare risk assessment for clients with similar histories for consistency. Protocols for evaluating client satisfaction with the information received and the informed consent process are in development.

Training

The U-M Department of Human Genetics has been in existence for over 40 years. It offers opportunities for advanced training and research in several fields including:

  • Biochemical genetics
  • Clinical genetics
  • Cytogenetics
  • Developmental genetics
  • Genetic epidemiology
  • Genetic counseling
  • Molecular genetics
  • Neurogenetics
  • Population genetics
  • Somatic cell genetics

Last updated: 2/20/2008

 

Educational Opportunities

NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™

September 4, 2008
New York Marriott at the Brooklyn Bridge
New York, New York

NCCN 3rd Annual Congress: Hematologic Malignancies™

September 5 – 6, 2008
New York Marriott at the Brooklyn Bridge
New York, New York


Exhibitor Information


NCCN Regional Guidelines Symposia

NCCN Colon, Rectal, & Anal Cancers Guidelines Symposia
Seattle, Washington (Wednesday, June 11, 2008)

NCCN Breast Cancer Guidelines Symposium
Palo Alto, California (Friday, June 20, 2008)

NCCN Kidney Cancer Guidelines Symposium
Birmingham, Michigan (Friday, June 20, 2008)

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NCCN International

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