National Comprehensive Cancer Network

Boston, MA

Judy E. Garber, MD, MPH - Dana-Farber Cancer Institute

Daniel Haber, MD, PhD - Massachusetts General Hospital Cancer Center

617.632.2178 - Dana-Farber Cancer Institute

617.724.1971 - Massachusetts General Hospital Cancer Center

800.320.0022 - (toll-free access to both sites of care)

For more information, call the telephone numbers shown above, or visit our websites.

www.dana-farber.org

http://www.massgeneral.org/cancer/care/adult/risk/index.asp

Any person with a personal and/or family history of any type of cancer (breast, ovarian, colon, melanoma, renal, etc.) is eligible for genetic counseling and a discussion of genetic testing options.

People without family history of breast and/or ovarian cancers, childhood cancers, or early onset disease are eligible for genetic counseling.

The genetic counselor takes a family history, provides the initial hereditary cancer risk assessment, discusses genetic testing if appropriate, provides assistance with insurance coverage of genetic tests, and instructs patients in collection of the additional medical records necessary for family assessment. Generally, if relevant, genetic testing is offered at the first visit with a follow-up session (or phone call) to discuss the results.

The programs have developed informed consent documents for clinical genetic testing. All patients are asked to review and sign the documents before blood is drawn. It reviews all of the issues, and particularly covers the policy regarding recording of genetic test results in the medical record. Research participation may be offered as an option in some cases and consent is provided separately for these studies.

Genetic testing participation and results are recorded in the medical record. The program does not perform anonymous testing for clinical (non-research) tests. Research participation information may be coded in order to maintain confidentiality.

The programs provide genetic testing for all cancer susceptibility genes for which analysis is available in an approved laboratory (either internal or external), and will facilitate connection of patients to pertinent research projects nationally and internationally.

CLA approved testing.

Results are interpreted through dialogue between the genetic counselors, clinic physicians, and the testing laboratory. Risks are estimated using published materials. A copy of the written report of the test result with a letter providing an interpretation are provided to each patient.

Post-test counseling is generally provided by the genetic counselor and physician (as needed) at a follow-up visit or via phone call. The post-test session includes interpretation of the results, a review of the relevance to family members, implications for medical management, and a discussion of the potential psychosocial impact. The pedigree is reviewed in the course of the discussion and implications of the test results for specific other family members is discussed, along with suggestions for options available for the patient to use to share the information with relatives. This topic is also addressed in the letter, along with the offer to provide information about testing programs available in the geographic areas in which families reside.

For patients who decline to schedule a visit or telephone appointment to receive results, a letter notifying them that a result is available when they are ready to receive it is sent certified to document that the patient has received the notification.

Screening recommendations and disclosure discussions are included in the written materials.

Advice regarding appropriate surveillance and available prophylactic surgical procedures is available to all patients. Patients needing medical management recommendations tailored to their specific needs meet with a program physician.

At Dana-Farber Cancer Institute, a program psychologist is available either for telephone counseling and referral to local providers or for some limited series of personal visits. A support group program of six structured visits facilitated by the psychologist and a genetic counselor is available. Referrals to Institute resources for psychological support are used. Patients are also encouraged to contact patient volunteers from the program who receive training and support from the social services department.

At Massachusetts General Hospital Cancer Center, psychiatrists as well as Licensed Social Workers are available either for counseling or for referral to local providers. Additionally, assistance with support group identification and peer mentorship is offered.

Multiple research participation options are available through Dana-Farber/Brigham and Women's Cancer Center and Massachusetts General Hospital Cancer Center.

Active NCHGRI funded research in counseling.

STAR trial, NCI- and DOD-funded investigator-initiated research trials using letrozole, rosiglitazone, Herceptin and tibolone.

Co-investigator on trial for TSC treatment.

· NCI-funded collaborative project with T. Rebbeck, University of Pennsylvania

· NCI-funded project on MRI and duct lavage surveillance of mutation carriers

· ROCA and GOG199

· NCI-funded work in HNPCC

There are internal disease-specific registries as well as external collaborative relationships/consortiums.

Groups include CFRBCS, ROCA, and EDRN.

NCHGRI-funded projects in BRCA and HNPCC.

MGH-directed melanoma genetic counseling and testing study, collaboration with Fox Chase on provision of HNPCC-related information.

All patients are reviewed in a weekly patient review conference. All genetic counseling is performed by a board certified or board eligible genetic counselor.

The team is trained and updated on new developments by participating in weekly patient review conferences, monthly journal club meetings, monthly program meetings, national conferences, and professional organization membership.