Question and Answer c/o Nancy Viscotsky, M.P.H.
The University of Texas M. D. Anderson Cancer Center
Department of Gastrointestinal Oncology, Box 078
1515 Holcombe Blvd., Houston, TX 77030

I have been found to have an inherited colon cancer predisposition. Now that I know that we have this gene in our family, I want to let other at-risk family members know about this. I have several family members who I have not kept in close contact with. How should I go about approaching family members to let them know that they are at increased risk for this condition?

Concerned in Texas

Dear Concerned in Texas,
I understand your motivation to inform your extended family about this important information. I also realize that it is often challenging to decide how best to notify at-risk relatives about this, especially those with whom you are not in close contact. Some individuals have told us that they felt overwhelmed and burdened by the responsibility of contacting and explaining this information to their family members, especially during the very emotional time right after receiving their own test results. To help share this information with family members, we often give our clients a brief letter or fact sheet about their specific condition, the availability of genetic counseling, and options available for managing cancer risk such as genetic testing and cancer screening, along with the name and contact number of their genetic counselor. The client can then give these to family members to help explain the implications of the genetic testing. In our clinic, we work closely with clients who have decided to have genetic testing to develop a plan to help them decide the best way to notify their appropriate family members. One thing we always ask is who in their families they have told about the genetic counseling process and their decision to have genetic testing. We sometimes learn that clients share this information with their close relatives like children, parents, and brothers and sisters. Many who have done this tell us that having discussed the process with relatives helps lay the groundwork for sharing the actual test results when they become available.

Patricia Ward, M.S., C.G.C Genetic Counselor

Dear Concerned in Texas,
My sister's colon cancer was found too late. Not wanting any more family to go through this, I wrote a letter. It was a very heartfelt letter saying cancer is a life or death matter, please deal with it. This letter was sent to one cousin in a family of fourteen children, the only one I had been in contact with. She asked if she could send copies of my letter to each of her brothers and sisters. Because she did this, everyone is aware of the cancer and some have been tested. My sister, Wendy died of HNPCC in May. At her memorial service I talked with the cousin who had received a copy of my letter and has been tested. My letter is now in her doctor's files. The letter method worked for us, with knowledge shared, you may save a life, as my sister who died has saved the lives of our family members. Thank you for your care and concern for your family!

Robyn

 

I have FAP. I have two children, ages 5 and 7 who are at risk. Our family does not discuss the issue of FAP very often because I had my surgery years before they were born. At what age should we start talking to our children about this? I know it is important for them to understand this condition, but I don't want to scare them.

Wanting to do the Right Thing