Finding Health Care
Finding specialists
Overview
Our knowledge of hereditary cancer genetics is rapidly advancing, as new information is being discovered at an accelerated pace. Consulting with an expert who is knowledgeable in cancer genetics is the best way to ensure information received is up-to-date and credible.
Some facilities, including those listed below, have specific high-risk clinics or programs that are devoted to risk assessment and risk management. In addition to geneticists and genetic counselors, these programs offer access to oncologists trained in management of hereditary cancer risks.
Finding a cancer genetics specialist
Cancer genetic counselors, geneticists, and risk assessment counselors are health care providers who are specialists in hereditary diseases. They can help individuals more clearly understand their risk for hereditary cancer. Geneticists are physicians with specialized expertise in hereditary diseases. Certified genetic counselors are health care professionals who have had specialized training and have earned a Masters degree in genetic counseling. The National Society of Genetic Counselor website offers a lookup tool for finding a certified genetic counselor by state and specialty (to find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization"). Some healthcare facilities do not have genetic counselors on staff and for some people traveling to another facility is not possible. There is a company that provides genetic counseling consultations by telephone with board-certified genetic counselors.
The Gene Tests website offers a searchable database for locating genetics clinics by area of specialization and by state, zip-code, or professional affiliation..
Other health care providers such as nurses or oncologists may offer genetic counseling and testing. The amount of training these health care providers have received in the area of cancer genetics may vary; consequently their ability to provide comprehensive genetic counseling and interpretation of test results may also vary. It is important to know the qualifications of the person providing your genetic counseling. The National Cancer Institution has a lookup tool for health care providers offering genetic counseling and testing. This tool also provides information on the certification of the health care providers listed.
Finding a gynecologic specialist
Although an experienced gynecologist can manage the gynecologic care of most women, those who are at high risk for ovarian cancer need a gynecologic specialist familiar with specific diagnostic, screening or prevention protocols for high-risk women. Many facilities refer high-risk women to specialists known as gynecologic-oncologists: although these specialists often treat ovarian cancer, they are also trained in screening for ovarian cancer, spotting abnormalities that might indicate cancer, are familiar with the high-risk protocol which should be followed for prophylactic surgery and can perform full staging if a cancer is found. You can find a gynecologic-oncologist near you through the website for the Society of Gynecologic Oncologists.
Finding a breast specialist
Breast surgeons, radiologists, and medical breast oncologists are specialists trained in the screening, diagnosis and treatment of breast cancer. Radiologists are responsible for the screening aspects of risk management, including breast ultrasound, mammograms, MRIs, and guided biopsies of abnormal findings. Breast surgeons are involved in the clinical breast exam, surgical biopsies of abnormalities, lumpectomies, and mastectomies, either for breast cancer treatment or as risk-reducing surgery. Medical breast oncologists manage chemotherapy for breast cancer treatment and chemo-prevention for high-risk patients. At some facilities it is the breast medical oncologist and not the breast surgeon who performs the clinical breast exam.
Special clinics for high-risk women
Many high-risk clinics, such as those listed below, have a "multi-disciplinary" approach to managing high-risk patients: the radiologist, breast surgeon, breast oncologist, and gynecologic-oncologist consult together in one facility to determine the best care for their high-risk patients.
Alberta Cancer Genetics Program (Calgary, Alberta, Canada)
Baylor Cancer Genetics Clinic (Houston, TX)
Breast Cancer Prevention Center at the University of Kansas Medical Center (Kansas City, KS)
The Breast Health Program at B.C. Women's Hospital and Health Centre (Vancouver, British Columbia, Canada)
Cancer Genetics Clinic at New England Medical Center (Boston, MA)
Cancer Genetics Program at UNC Lineberger Comprehensive Cancer Center (Chapel Hill, NC)
The Cancer Genetic Counseling Program at the Yale Cancer Center (New Haven, CT)
Cancer Genetics Program at the University of Pittsburgh Medical Institute/Magee-Womens Hospital
The Cancer Institute of New Jersey (New Brunswick,NJ)
The Cancer Prevention Program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (Baltimore, MD)
Cancer Risk and Prevention Program at the Dana Farber Cancer Institute (Boston, MA)
Cancer Risk Clinic at the University of Chicago Hospitals
Cancer Risk Evaluation Program at the University of Pennsylvania Cancer Center (Philadelphia, PA)
Cancer Risk Program at the UCSF Comprehensive Cancer Center (San Francisco, CA)
Cancer Screening and Prevention Program at the City of Hope Comprehensive Cancer Center (Duarte, CA)
Clinical Cancer Genetics Program (CCG) at The Ohio State University, James Cancer Hospital (Columbus, OH)
Columbia University Medical Center - Women at Risk at NewYork Presbyterian Hospital
Dorcy Cancer Center at St. Mary-Corwin (Pueblo, CO)
Elliott Hospital (Manchester, NH)
Familial Breast Cancer Clinic at the Toronto-Sunnybrook Regional Cancer Centre (Toronto, Ontario, Canada)
Familial Cancer Program (Burlington, VT)
Familial Cancer Program at the Mayo Clinic Jacksonville (Florida)
The Family Cancer Risk Service at Vanderbilt Ingram Cancer Center (Nashville, TN)
Genetic Risk Assessment for Breast and Ovarian Cancer at the M. D. Anderson Cancer Center (Houston, TX)
Hereditary Cancer Clinic at Duke Comprehensive Cancer Center (Durham, NC)
Hereditary Cancer Prevention Clinic: Creighton University Cancer Center (Omaha, NE)
Hereditary Cancer Program at UCONN Health Center and High Risk Clnic (West Hartford, CT)
Hereditary Cancer Program: BC Cancer Agency (Vancouver, British Columbia, Canada)
Jefferson Hereditary Cancer Center at Thomas Jefferson University (Philadelphia, PA)
Lahey Clinic's Breast Center (Peabody, MA)
The Lynne Cohen Preventive Care Clinic for Women's Cancers
-- Clinics in Los
Angeles and New
York
Lifetime Cancer Screening and Prevention Center at the H. Lee Moffitt Cancer Center (Tampa, FL)
The Margaret Dyson Family Risk Assessment Program at Fox Chase Cancer Center (Philadelphi, PA)
Norris Cotton Cancer Center Familial Cancer Program (Lebanon, NH)
PacNoRGG: Pacific Northwest Regional Genetics Group
Penrose Cancer Center -- Hereditary Cancer Service (Colorado Springs, CO)
Seattle Cancer Care Alliance, Cancer Prevention Clinic (Seattle, WA)
St. Vincent Hospital -- Genetics (Green Bay, WI)
Special Surveillance Breast Program at Memorial Sloan-Kettering Cancer Center (New York, NY)
Stanford Cancer Genetics Clinic (Stanford, CA)
UCLA Department of Human Genetics (Los
Angeles, CA)
This page includes information about UCLA's Familial Cancer Clinic. UCLA also
offers resources such as the Jonsson
Comprehensive Cancer Center and The
Carol Franc Buck Breast Care Center (University of California at San Francisco)
USC/Norris Comprehensive Cancer Center and Hospital: Cancer Genetics Unit (Los Angeles, CA)
Breast and Ovarian Cancer Prevention Program at the Seattle Cancer Care Alliance
Other websites
Thoughts from FORCE, the FORCE blog has several articles related to finding health care including articles on:
- Financial assistance for genetic testing
- Supporting hereditary cancer research
- The importance of finding a genetics expert when considering genetic testing
Cancer Genetics
Services Directory
This database is produced and maintained by the National Cancer Institute.
To find cancer genetics professionals who specialize in hereditary breast and
ovarian cancer, choose one or both of the BRCA options in the form's "Family
Cancer Syndrome" selection list. You can limit your search by city, state,
or country (U.S. and Canada only).
National Consortium of Breast Centers
(NCBC)
Using the NCBC's searchable databases, you can view information about breast
centers or breast
professionals in a specific geographic area, or you may narrow your search
by including other criteria.
National Society of Genetic
Counselors Lookup Tool
This database, provided by the National Society of Genetic Counselors, allows
you to look up certified genetic counselors by specialty, city and state.
Informed Medical Decisions
This company provides full telephone genetic counseling by board-certified genetic counselors.
NCI-Designated Cancer Centers
A list of cancer centers that receive special research grants from the National
Cancer Institute.
Find
a Gynecologic Specialist
Search the membership directory of the Society of Gynecologic Oncologists (SGO)
by last name, city, state, or zip code.
The National Breast
and Cervical Cancer Early Detection Program
Women who are members of underserved populations or who meet income eligibility
requirements may qualify for free or low-cost screening and care. NBCCEDP offers
outreach and education; screening including mammograms, breast exams, and PAP
tests; and follow-up care if needed. The program operates under the Centers
for Disease Control and Prevention (CDC).
Five Tips for
Sharing Research with Your Doctor
An excerpt from the book Working
with Your Doctor: Getting the Healthcare You Deserve, by Nancy Keene.