You can help patients through the challenges that arise when their cancer may be hereditary, as discussed in Patients' Genetic Inheritance (Oncology Times 7/25/16 issue). Here's a patient handout that you are free to edit or share as is.
Your Genetic Inheritance
To provide the best care, we need to know if your cancer is hereditary. This handout will help you understand what's involved in genetic testing.
Why do we need to know if your cancer is hereditary?
If we find out your cancer is hereditary, knowing which gene mutations are involved enables us to:
- tailor your cancer treatments to your particular cancer, when possible;
- take available steps to decrease your risk of developing other cancers; and
- help your family members minimize their risk of cancer.
What does it mean to say a cancer is hereditary?
Only 10 percent of cancer cases are hereditary. Those patients were born with a specific change (called a deleterious mutation) in one of their genes that increased their risk of developing cancer. Even though the mutation is present in almost every cell in their body, it only increases the risk for a few types of cancer at most. Importantly, these mutated genes can be passed down to children.
The 90 percent of cancer cases that are not hereditary are called sporadic cancers. Over the years, mutations accumulated in one cell of the body that allowed it to multiply out of control until it became a detectable tumor. Some mutations may have been caused by exposure to carcinogens like cigarette smoke. Or, all the mutations may have been completely unavoidable, having occurred due to an error during the complex process of normal cell division. Sporadic cancers cannot be passed down to children (unless the mutations occur in an egg or sperm cell).
Why do we suspect your cancer might be hereditary?
We consider this possibility whenever a patient's type of cancer is often hereditary and/or the pattern of cancers in that patient's family suggests an inherited cancer risk.
How do we find out if you carry a mutation that increases your risk of cancer?
We can test a small sample of your saliva or sample of blood from your arm, looking for mutations in the genetic material of your white blood cells. Before you proceed with testing, we may refer you to a genetic counselor.
Why might you need a consultation with a genetic counselor first?
Genetic counselors are the best medical professionals to assess your family history and confirm we are ordering the best genetic test(s) for you.
In addition, obtaining a family history and dealing with the results, whether positive or negative, poses practical and emotional challenges. Genetic counselors can guide and support you through all phases of the process, making it more efficient and less stressful.
What are some obstacles to obtaining a family history?
We need you to go back two or more generations and find out who in your extended family ever had cancer and what kind it was. If emailing or phoning relatives with whom you have little contact, it may feel awkward. If past troubles led to tense relationships, you may feel conflicted about reconnecting. If your family is closely knit, you may feel reluctant to add new fears and uncertainty into your loved one's life.
Getting information may be an obstacle, too. Years ago, people often kept a cancer diagnoses secret or, at best, talked in vague terms, such as “female trouble.” Your elderly relatives may feel uncomfortable sharing what they know because of embarrassment, shame, unresolved grief or fear of upsetting you. On rare occasions, families harbor secrets about a family member's true ethnic heritage or biological parents (such as after an undisclosed adoption or extramarital affair). Genetic counselors can help with these and other challenges.
Can we skip the family history and test all your genes?
That would not serve you well. We'd still need your family history to estimate how much risk any deleterious mutations that might be found carries for you. The bigger issue is that everyone has mutations, most of which are harmless. It's confusing and stressful to find mutations so recently discovered that we don't yet know what they mean. Such test results might lead you to unwise decisions.
What about using a mail-order genetic test kit?
Laboratories vary in quality. Given the importance of the results, we recommend you have them done by a lab we know and trust. If you choose to use a direct-to-consumer test kit, first you will need to consult with a genetic counselor to determine which test(s) to order.
What if you don't want to know?
Part of you may not want to know if your cancer is hereditary. Listen to the part of you that wants to do the best thing for your health and for your family. Finding out you have a mutation can be upsetting. Yet many patients report feeling relief and a renewed sense of control: “Learning I have a mutation does not change what is. It changes what I can do about what is.”
What about getting insurance?
The Genetic Information Nondiscrimination Act (GINA) prohibits the use of genetic information in insurance or employment. Unfortunately GINA does not apply if your employer has fewer than 15 employees, if you are in the U.S. military, or if you are receiving health benefits through the Veterans Health Administration or Indian Health Service. GINA also doesn't protect against genetic discrimination in obtaining life, disability, or long-term care insurance. Talk with us about obtaining insurance before undergoing testing.
What about my children?
Regardless of your children's ages, you help them when you get tested. If your cancer is not hereditary, you relieve everyone of unnecessary worry about your children. If you test positive, your children can take advantage of available steps to minimize their risk.
Testing eliminates the stress of wondering if you are missing available opportunities to prevent cancer. It prevents regret about having missed the chance to prevent cancer.
If your children are youngsters they don't need to deal with this for a long time, during which we can expect great medical advances. By the time they're old enough to consider genetic testing, they'll benefit from better prevention and treatment than we have today.
We need you to share with us your concerns and questions. Notify us if you are reluctant to proceed. For an informative and encouraging book, read A Cancer in the Family by Theodora Ross. The bottom line is that genetic testing enables you to take more control of your genetic inheritance today and tomorrow.