National Comprehensive Cancer Network



NCCN Oncology Research Program (ORP)
NCCN Volasertib Research Grant Opportunity – Submit by October 30, 2014
NCCN ORP Recent News
NCCN ORP Affiliate Research Consortium
NCCN ORP Scientific Publications
NCCN ORP for Industry
NCCN ORP Investigator Steering Committee
NCCN ORP Testimonials
NCCN Clinical Trials at NCCN Member Institutions
Find NCCN ORP Funded Clinical Trials at NCCN Member Institutions
NCCN ORP Grant History
NCCN Informed Consent Language Database
NCCN Specialized Imaging Research Consortium™ (SIRC)
NCCN ORP Disclosure Policy
NCCN Collaboration with the National Business Group on Health
NCCN Health Information Technology Licensees

NCCN Research & Business Resources



Vanderbilt-Ingram Cancer Center
Nashville, Tennessee
800.811.8480
www.vicc.org

Genetic Counseling and Testing Service

Introduction

The Clinical and Translational Hereditary Cancer Program encompasses research, clinical, and educational efforts to generate and translate new insights in hereditary cancer genetics into clinical care. The Program is directed by Dr. Georgia Wiesner and includes physicians, nurse practitioner, and genetic counselors with expertise in hereditary cancer.

The Hereditary Cancer Clinic is the clinical arm of the program, offering comprehensive genetic evaluation, counseling, and testing for patients who are worried about their cancer risk based on their family or personal history.

Learn more about the program at our website: http://www.vicc.org/hcp/

Locations

Vanderbilt Hereditary Cancer Clinic at the Village at Vanderbilt
1500 21st Ave S, Suite 2500
Nashville, TN 37212

Vanderbilt Hereditary Cancer Clinic at One Hundred Oaks
719 Thompson Lane
Suite 25000, Breast Center

Nashville, TN 37204

Program Director

Georgia Wiesner, MD
Professor of Medicine
Ingram Professor of Cancer Research

Director of Clinical and Translational Hereditary Cancer Program

Schedule Appointments

Contact:  615.322.2064

Intake Process

Community and Physician Awareness

The Vanderbilt Hereditary Cancer Program provides community and professional educational programs, including continuing education activities and participation in tumor boards, grand rounds, and medical or nursing school lectures. Our team, which consists of physicians, nurse practitioner, and genetic counselors, are available to provide educational programs to any group, professional or community that has an interest in hereditary cancer. Information can also be obtained from our website: http://www.vicc.org/hcp

Identify Eligible Subjects/Referral

Our clinic is available to anyone who has concerns about their risk of cancer. That may include those with a significant personal or family history of cancer, or concerns about specific risk factors and cancer, or concerns about the risk for family members. Patients can refer themselves to our clinic by calling the number provided, or they may request a referral from their physician.

Some of the features seen in families appropriate for referral include:

  • Clustering of certain types of cancers in a family
    • breast, colon, ovarian, pancreatic, prostate, uterine/endometrial, thyroid, and other cancers
  • Cancer occurring at younger ages than expected
  • The same type of cancer in several close relatives
  • Cancer in more than one generation
  • More than one type of cancer in the same individual
  • Certain rare cancers e.g., adrenal gland carcinoma
  • Known mutation in a cancer susceptibility gene in the family

For breast cancer families appropriate patients for consultation may include:

  • Breast cancer diagnosed before age 50, or “triple negative” breast cancer diagnosed under the age of 60
  • Bilateral breast cancer, or breast and ovarian cancer
  • Family history of more than one breast cancer or breast cancer and ovarian cancer
  • Male relatives with breast cancer
  • Ashkenazi Jewish or Eastern European heritage and family history of breast or ovarian cancer
  • Known mutation in breast cancer susceptibility gene in the family

For hereditary colorectal cancer concerns, appropriate patients for consultation may include personal or family history of:

  • Colon or rectal cancer or polyps before age 50
  • Colon cancer diagnosed more than once (separate cancers, diagnosed at the same or different times)
  • Colon cancer plus uterine or ovarian cancer
  • Multiple colon polyps
  • Known mutation in colon cancer susceptibility gene in the family

Other tumors/cancers that may warrant referral:

  • Adrenocortical carcinoma
  • Desmoid tumors
  • Endocrine tumors (parathyroid, pituitary or other tumors of the endocrine system)
  • Hemangiomas
  • Medullary thyroid cancer
  • Pheochromocytoma
  • Retinoblastoma
  • Sarcoma

Pre-Test Counseling and Risk Assessment

The first appointment with the Vanderbilt Hereditary Cancer Clinic is by phone, when medical and family history information is collected and a pedigree (family tree diagram) is constructed. A family history form and information about the clinic is sent to the patient prior to the phone appointment. At the end of the phone clinic appointment, a face-to-face appointment with one of our genetics providers will be scheduled.

The face-to-face clinic appointment can include:

  • Review of family tree created during the phone appointment, and creation of a cancer risk assessment based on that information
  • Education on cancer, cancer genetics, risk, and related topics
  • Discussion of whether a gene causing risk for cancer may be passed down in the family
  • When appropriate, discussion genetic testing options and discussion of insurance coverage for genetic testing
  • A plan for learning testing results is made; usually patients will return to learn their results in person
  • When appropriate, referral for participation in research relating to their specific condition
Options for cancer screening and risk reduction will be discussed, along with corresponding benefits, risks, and limitations. When indicated, the service can facilitate appropriate appointments with medical specialists

Informed Consent Procedures

The genetic education and counseling consultation is focused on the aspects of the evaluation and testing that are important for patients to provide their informed consent, such as the risks and benefits of testing, legal protections for patients undergoing genetic testing, possible impact in family dynamics, incidental findings, and inconclusive results.  Patients are routinely asked to review and sign the consent documents provided by the testing laboratory.  

Testing

Confidentiality Standards

Medical records including notes, family histories, and testing results are kept in the electronic medical record in compliance with all applicable privacy and confidentiality laws including the Health Insurance Portability and Accountability Act (HIPPA).

Testing

The majority of testing is facilitated through reference laboratories. Some tumor testing including microsatellite instability and immunohistochemistry is available through Vanderbilt Medical Center laboratories.

Available Testing through the Vanderbilt Hereditary Cancer Clinic

Birt-Hogg-Dube (FCLN)

Cowden syndrome / PTEN Hamartoma Tumor Syndrome (PTEN)

Familial adenomatous polyposis and related syndromes (APC)

Familial melanoma/ FAMM (CDKN2A)

Hereditary breast ovarian cancer syndrome/ HBOC (BRCA1, BRCA2, ATM, CHEK2, PALB2 and others)

Hereditary diffuse gastric syndrome (CDH1)

Hereditary hemorrhagic telangiectasia/ HHT (ENG, ALK1, SMAD4)

Hereditary pancreatic cancers (BRCA2, PALB2, CDKN2A, and others)

Hereditary pheochromocytoma-paraganglioma syndromes (SDHB, SDHD, SDHC, SDHA, MAX)

Juvenile polyposis syndrome (SMAD4, BMPR1A)

Li-Fraumeni syndrome (TP53)

Lynch syndrome / Hereditary nonpolyposis colorectal cancer syndrome / HNPCC (MLH1, MSH2, MSH6, PMS2, EPCAM)

Multiple endocrine neoplasia syndromes, familial medullary thyroid carcinoma (RET, MEN1)

MYH associated polyposis (MYH)

Neurofibromatosis type 1 and type 2 (NF1, NF2)

Peutz-Jeghers syndrome (STK11)

Retinoblastoma (RB1)

Von-Hippel Lindau syndrome (VHL)

Test Result Interpretation

Our providers review cancer risks indicated by the test results, and discuss options for decreasing risk or increasing surveillance for those with increased risk of cancer. Follow-up appointments for management are made as needed.

Post-Test Counseling and Follow-Up

Post-Test Counseling

Patients return for results disclosure in person, or per the plan made at their initial appointment.. Cancer risks, family implications, and surveillance plans are reviewed at that time.

We encourage patients to re-contact the service every few years to review/update family history and to address any new issues that may be relevant to the family.

Cancer Screening

Patients in the clinic may be followed for high risk cancer screening and management. As needed, referrals are made to appropriate specialists. Vanderbilt-Ingram Cancer Center's Breast Center has a high risk screening clinic and the availability of MRI screening for women at increased risk of developing breast cancer.

Medical and Surgical Management

The Vanderbilt Hereditary Cancer Program is closely integrated with VICC medical oncology, surgical oncology, gynecologic oncology and plastic surgery to offer appropriate medical and surgical treatments for at risk patients.  Depending on an individual’s cancer risks this may include chemoprevention, risk reducing mastectomy and reconstruction, risk reducing salpingo-oophorectomy, ongoing surveillance and risk reducing colectomy (including laparoscopic colectomy).  Patients seen in the program are also followed longitudinally for high-risk management.

Quality assurance

When appropriate, cases are reviewed with a multidisciplinary team of individuals and challenging cases are presented in a multidisciplinary high risk tumor board setting.

Training

The members of the Hereditary Clinical and Translational Cancer Program are licensed to practice in the state of Tennessee and have specialized training in genetics, including:

  • Physicians specializing in medical genetics and certified by the American Board of Medical Genetics (ABMG) and the American Board of Internal Medicine (ABIM)
  • Genetic counselors with Master’s degrees in Genetic Counseling, and certified by the American Board of Genetic Counseling (ABGC)
  • A nurse practitioner with dual Master’s degrees in nursing and clinical cancer genetics, certified as an Adult Nurse Practitioner by the American Nurses Credentialing Center (ANCC) .