Family Genetic Testing Toolkit

Family Testing Video

Hear from patients at Siteman Cancer Center who want to help get the message out about the importance of family genetic testing.  Our genetic counselors and physicians help share the why and how about family genetic testing.  Please feel free to share this video with family members who may be interested.

Link to video (when completed and approved)

Online Family History Tool

https://familyhistory.invitae.com/pq/en/PBB6JC

This link will take you to an easy way to input your family history, and this information will help our genetic counselors make the most individualized recommendations for you and, if they wish, other family members.  The information you input here will only be able to be seen by our Gynecologic Oncology Genetics Clinic professionals: a cancer genetic counselor (Susan Jones, CGC), a gynecologic oncologist (Dr. Andrea Hagemann), and our clinic coordinator.  Once you have finished filling out the information, expect a phone call from Susan Jones, who will review your family history, answer any questions you may have about sharing genetic testing information with family members, and discuss any next steps.

Family Letters

We understand there are many reasons it can be hard to keep family members up to date about your health. If you have been found to carry a gene that places you at risk of cancer, or perhaps even caused a cancer, your family members may also carry that same gene, and we want to help you share that information with your family.   A letter to your family members can be a very helpful way to pass this along.  Samples are included here, which you could modify and send.  We would encourage discussion with our genetic counselors to help make sure the letter says just what you want it to say to best help your family member and respect your wishes about how much of your own health information you feel comfortable sharing.

Lynch Syndrome sample letter: copy text below or download Word Document

Dear                           ,

As you may or may not know, I was recently diagnosed with ***.   Given my own history of cancer I chose to have genetic testing for genes associated with hereditary cancer risk.  My results showed that I inherited a mutation in one of these genes, ***. This gene mutation is hereditary, meaning it can be passed on in families.

Family members who also have this mutation may have an increased chance of developing specific types of cancer, especially uterine cancer and colorectal cancer. It is important for you to understand the information and understand their risks so they can make informed medical decisions.

Many cancers can be treated and managed if caught early.  For this reason, I strongly recommend that you not delay in meeting with a healthcare provider who has training in cancer genetics to talk about what the genetic information means for you. A genetic counselor will review the cancer family history, talk about the option of genetic testing and possible results, and offer recommendations based on those results.

I will share my genetic testing and our known family history information with you so you can talk to your doctor and/or genetic counselor.  You will need a copy of my genetic testing results and a copy of our family tree to be sure you have the appropriate test.   Also, my doctor and/or genetic counselor at Washington University in St. Louis is willing to meet with you to discuss this further.

You can find a genetic counselor near you at http://www.nsgc.org.  Click on “Find a Genetic Counselor” and then search by state or zipcode and specialty (cancer).  If you would like to meet with Susan Jones, Certified Genetic Counselor at Washington University, her office number is 314-747-5616.

Let me know you’d like to discuss any of this directly with me.

I hope that you will be able to use this information for the benefit of your health care and other family members.

Sincerely,

HBOC Syndrome sample letter: copy text below or download Word Document

Dear                           ,

As you may or may not know, I was recently diagnosed with ***.   Given my own history of cancer I chose to have genetic testing for genes associated with hereditary cancer risk.  My results showed that I inherited a mutation in one of these genes, ***. This gene mutation is hereditary, meaning it can be passed on in families.

Family members who also have this mutation may have an increased chance of developing specific types of cancer, especially breast, ovarian cancer, prostate and pancreatic cancer. It is important for you to understand the information and understand their risks so they can make informed medical decisions.

Many cancers can be treated and managed if caught early.  For this reason, I strongly recommend that you not delay in meeting with a healthcare provider who has training in cancer genetics to talk about what the genetic information means for you. A genetic counselor will review the cancer family history, talk about the option of genetic testing and possible results, and offer recommendations based on those results.

I will share my genetic testing and our known family history information with you so you can talk to your doctor and/or genetic counselor.  You will need a copy of my genetic testing results and a copy of our family tree to be sure you have the appropriate test.   Also, my doctor and/or genetic counselor at Washington University in St. Louis is willing to meet with you to discuss this further.

You can find a genetic counselor near you at http://www.nsgc.org.  Click on “Find a Genetic Counselor” and then search by state or zip code and specialty (cancer).  If you would like to meet with Susan Jones, Certified Genetic Counselor at Washington University, her office number is 314-747-5616.

Let me know you’d like to discuss any of this directly with me.

I hope that you will be able to use this information for the benefit of your health care and other family members.

Sincerely,

Additional website resources

The following websites provide very helpful information about hereditary cancer risk. Exactly the way it’s worded on the website currently will work.

Family Telemedicine Visits

Telemedicine has been quite helpful for family meetings! If you are a patient at Siteman Cancer Center or Washington University, our genetic counselors are able to meet with you and your family members over Zoom or the phone to discuss the importance of family genetic testing.  Click here to learn more from Susan Jones, CGC.