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From Cancer Patient to Cancer Survivor: Lost in Transition
A textbook in psycho-oncology has provided comprehensive reviews of relevance to cancer survivorship (Holland and Rowland, 1989; Holland, 1998), and the journals Psycho-Oncology and Psychosocial Oncology provide relevant reviews of research of clinical relevance.
Clinical practice guidelines and standards have been developed by the NCCN to assist health care providers in the management of psychosocial distress among patients and families with cancer (see Chapter 3) (NCCN, 2004a).
As knowledge of the genetic basis for some cancers has expanded and tests for genetic susceptibility to cancer have become available, genetic counseling and testing have become more important to cancer survivors and their families (see Chapter 4, Appendix D). In some cases, genetic services are provided directly by doctors or nurses, but patients are often referred to genetic counselors, master’s-level trained professionals with expertise in medical genetics and counseling.17 They provide risk assessment, help patients weigh the risks and benefits of genetic testing, interpret results of genetic tests, and review prevention, screening, and treatment options (NSGC, 2004). Genetic counselors also provide supportive counseling and refer patients to appropriate support services.
The National Society of Genetic Counselors regularly provides continuing education opportunities to members, including an annual meeting. The American College of Medical Genetics annual meeting also includes sessions of interest to cancer genetic counselors, as well as other medical professionals who are involved in genetic risk assessment or refer patients for genetic counseling. Continuing education in genetics is also available for oncology nurses and other health professionals who do cancer risk assessment and counseling, such as the “Advance Nurses’ Training Course in Cancer Risk Counseling” developed at the Fox Chase Cancer Center with NCI support (NCI, 2005a). The Journal of Genetic Counseling and the journal Genetics in Medicine both publish articles relevant to the practice of cancer genetic counseling. Both ASCO and the NCCN have published guidelines on genetic testing, and several NCI PDQ publications address the genetics of breast, colorectal, prostate, and thyroid cancers (NCCN, 2004b; ASCO, 2005b; NCI, 2005d).
There are 27 master’s programs in genetic counseling in the United States and 3 in Canada that are accredited by the American Board of Genetic Counseling (ABGC) (ABGC, 2004a). Instruction in cancer genetics is required for accreditation, and many genetic counseling students have rotations in cancer genetics clinics (ABGC, 2004b).