Hereditary Cancer
sharing 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.
Sharing cancer risk information with children
Hereditary cancers are unique from other cancersbecause the risk can be passed on to children. Sharing cancer risk with children -- both adult and minor -- can be difficult and complicated. Issues include the best age to share information, how to share information with children, and what information is appropriate to share. Although it’s natural for parents to want to protect their children from difficult topics, children are already exposed to the disruption that cancer causes in families: the agonizing decision making, family members undergoing treatment and surgery, or loss of a family member to cancer. Absent an explanation they understand, children form their own beliefs, which may be based on incorrect information and can be difficult to resolve later.
FORCE has a free webcast of a session from our 2007 annual conference called Hereditary Cancer: How Do I Tell My Children, and a newsletter article with an overview of the session. If you have watched the webcast or plan to watch it, you can help FORCE develop more resources for telling children about cancer risk by completing this survey.
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.
National Society of Genetic Counselors: Your Family History - Your Future
This is an excellent article on collecting your family medical history and next steps once the history has been collected.
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 and articles
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.
Apron Strings: Inheriting Courage, Wisdom and... Breast Cancer, by Diane Tropea Greene
Apron Strings is an upbeat and optimistic look at learning to take control when your family is faced with hereditary cancer.
Hereditary Cancer: How Do I Tell My Children?
This article from the Winter 2008 edition of our Joining FORCEs newsletter contains an overview of the session with same name, presented at our 2007 Joining FORCEs conference.
Motherless Daughters: The Legacy of Loss, by Hope Edelman
My Mother's Breast: Daughters Face Their Mothers' Cancer, by Laurie Tarkan
Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny, by Jessica Queller
Thirty-five, unattached, and yearning for marriage and a family of her own, author Jessica Queller faced an agonizing choice: a lifetime of vigilant screenings or prophylactic double mastectomy.
Taking Care of Your Girls, by Marissa Weiss, MD
This how-to-guide is written for adolescent girls. It provides balanced information, and answers the questions about breast health and development that most adolescent girls are afraid to ask..
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.