Indiana Familial Cancer Clinic

The Indiana Familial Cancer Clinic provides individuals and families information on the following topics:

• How predisposition to cancer can be inherited
• How family history of cancer affects the risk for developing cancer
• Whether or not the cancer in the family is likely to be inherited
• Cancer risk estimates for family members who have not developed cancer
• Cancer risk estimates associated with a specific gene for people with a mutation
• Recommendations for medical screening
• Appropriateness of genetic testing and informed consent for genetic testing
• How gene mutations are inherited

Who should consider a cancer genetics consultation?

The majority of cancer occurrences do not occur as a result of a familial tendency or an inherited genetic change. Consequently, a genetics evaluation is not typically recommended for most individuals diagnosed with cancer. However, 5-10 percent of cancer diagnoses involve genetic or inherited factors. This estimate may be higher depending on the specific cancer type and family cancer history.

Individuals who are evaluated in this clinic may have a diagnosis of cancer and/or have a family history of cancer.  Genetics consultation is also available for individuals who have tested positive for a gene mutation associated with increased cancer predisposition or people who have questions regarding the medical relevancy of genetic testing.

Individuals interested in a cancer genetics consultation may have one or more of the following:

• Young age at diagnosis (e.g. colon cancer diagnosed at 32 years)
• Multiple primary cancers in a single individual (e.g. sarcoma and breast cancer)
• Bilaterality in paired organs or multifocal disease (e.g. cancer in both kidneys)
• Rare tumor or cancer type (e.g. retinoblastoma, paraganglioma)
• Multiple gastrointestinal (GI) polyps
• Abnormal tumor studies designed to screen for specific cancer syndromes (e.g. abnormal MSI or IHC analysis concerning for Lynch syndrome)
• Genetic analysis of a tumor which identifies a possible inherited gene change
• Unusual tumor type (e.g. renal oncocytic hybrid tumor histology)
• Unusual skin lesions or birth marks (e.g. fibrofolliculomas or hyperpigmentation of lips)
• Multiple family members with cancer who are closely related to one another
• Cancers occurring in multiple generations
• Clusters of the same cancer type (e.g. brother, father, paternal uncle with prostate cancer)
• Family members who have developed a rare or unusual cancer of combination of cancers (e.g. male breast cancer)
• Family members with a combination of cancers suggestive of a known cancer syndrome (e.g. family members with breast, ovarian and prostate cancer)

Evaluation Preparation

Collecting family history information is an important part of a cancer genetics consultation. Patients can complete a family history questionnaire online with a username and password  or with a paper form that can be mailed.

To improve accuracy on the evaluation, the cancer diagnoses of family members must be documented. Documentation includes pathology reports, autopsy reports, other medical records related to the cancer diagnosis, or death certificates. An information sheet explaining how to document a family history is available. Clinic staff can provide medical record release forms.

An individual’s health plan may require a referral from a primary care physician to cover the evaluation. In this case, the referral must be approved and completed prior to the appointment.

Appointment Process

During the consultation, individuals meet with a genetic counselor and a medical geneticist. Consultations typically last 60 to 90 minutes.

The following information is reviewed during the appointment:

• Personal medical history
• Family history (of at least three generations) with emphasis on cancer diagnoses in biological family members
• Risk assessment based on medical and family history information
• Explanation of cancer genetics and how predisposition for cancer can be inherited
• Medical screening recommendations
• Assessment of the appropriateness of genetic testing
• Discussion of the risks, benefits and limitations of genetic testing
• Information regarding how gene mutations are inherited in a family and risk to other family members

Genetic testing is coordinated at the first appointment, if appropriate.

Clinic Leadership

Clinic staff includes Cindy Hunter, MS, CGC (License Certified Genetic Counselor) Jennifer Ivanovich, MS, CGC (License Certified Genetic Counselor), Courtney Schroeder, MS, CGC (License Certified Genetic Counselor), Leigh Anne Stout, MS CGC (License Certified Genetic Counselor, Adult Precision Cancer Genomics), and Jenna Lindsey (Genetics Assistant).