Hereditary Cancer
Family history
Overview
Families share more than genes, physical features and medical traits. Other elements that relatives have in common—backgrounds, relationships, and dynamics—sometimes affect communication between family members, often concerning private health issues or medical histories. In some families, particularly with older members who consider cancer, breasts and ovaries very private matters never to be discussed, this lack of communication withholds critically important health information from other relatives who may be affected.
Cancer and other illnesses are often associated with a stigma in our society. Some family members may be superstitious about discussing cancer, believing that may invite the disease and even make it more likely to happen. Despite these challenges, it is important to share medical information with relatives. Cancer is one of many diseases that can have a hereditary component. If a disease runs in a family, there may be screening or risk-management recommendations for family members who are considered “high risk.”
Geneticists and genetic counselors are medical experts in hereditary disease. (See our Finding a genetics specialist section.) These experts examine a family’s history of diseases such as cancer and determine the likelihood that there is a hereditary component. To do this, they must consider which family members were diagnosed at what age, and how they are related to other family members. Typically a genetics specialist looks at three generations of a family’s medical history to determine if there is a hereditary pattern. You can assist a genetics specialist by compiling medical information on both sides of your family including:
- First degree relatives
- Siblings
- Children
- Parents
- Second degree relatives
- Half-siblings
- Uncles and aunts
- Grandparents
- Grandchildren
- Nieces and nephews
- Third degree relatives
- Cousins
- Great grandparents
- Great-aunts and Great-uncles
The more detailed the information (actual diagnosis, type of cancer, location), the more helpful it can be. Although hospitals are not required to retain records beyond 10 years, they sometimes have older records available.
It’s equally important to share your medical information with relatives. The more details you share, the more you help them determine a risk-management plan that is right for them. It is worthwhile to request copies of your records and lab reports to keep for your own personal records. You needn’t share your complete medical records and information with all family members; a genetics specialist can help you determine which will be most helpful for your relatives.
The most effective way to share family medical information often depends on the family structure, your relationship with family members, and other factors. When sharing information, try to be sensitive to with family members’ situations and feelings.It may be helpful to give them the names of genetics specialists in their area to ensure that your relatives are getting up-to-date information. Avoid pressuring family members to make a particular decision. Listen to their concerns. Respect their right to gather information from experts and make their own informed decisions. Prepare for your conversation ahead of time by writing it down what you want to tell them. FORCE has a printable page for sharing information with your family.
Other websites
Cyndi's List of Genealogy Sites on the Internet: Genetics, DNA & Family Health
JewishGen: The Home of Jewish Genealogy
Genealogy
Relationship Chart
Is she a "first cousin once removed" or "a fourth great-grand
niece"? This handy resource helps you determine what to call the relationship
between family members.
U.S. Surgeon General’s Family
History Initiative
The U.S. Surgeon General has designated Thanksgiving as Family History Day.
They encourage families to share their family medical history. This site includes
a downloadable Family
History Tool that allows you to track the incidence of certain diseases
in your family.
Center for Disease
Control
The Center for Disease Control (CDC) has a page with information and resources
on using family history to promote health.
People Living With Cancer
An excellent overview on sharing genetic test results with your family. The People LIving with Cancer website is a patient-focused site from the American Society of Clinical Oncology (ASCO).
Further reading - books
Am I Next in Line?
Written by Monique Achtman, a cancer pre-vivor and FORCE member. This book tells
her family’s personal story and includes other families’ stories
of hereditary cancer.
Motherless Daughters: The Legacy of Loss, by Hope Edelman
My Mother's Breast: Daughters Face Their Mothers' Cancer, by Laurie Tarkan
Further reading - articles (advanced reading)
Communicating
genetic test results to the family: A six-step, skills-building strategy
Mary Daly PhD, Andrea Barsevick, PhD, Suzanne Miller, PhD, Robert Buckman, MD,
PhD Josephine Costalas, MSc, Susan Montgomery, BSN, Ruth Bingler, BS. Family
Community Health. Volume 23, Issue 3: p. 13-26, October 2001.