By Pat Carragher - September 01, 2022
About 10% of all cancers (including 10% of pediatric cancers) are hereditary or caused by a hereditary cancer syndrome. While most adult and pediatric cancers are not hereditary, some families find themselves with an unusual history of cancer. Moffitt Cancer Center’s new Pediatric and Young Adult GeneHome Clinic is available to help family members of all ages coordinate medical care needed to reduce a person’s cancer risk.
We asked our GeneHome panel of experts, including Dr. Colin Moore, associate chief medical information officer, and licensed certified genetic counselors Darcy Berry and Stefania Alastre Arcusa, the most important questions when it comes to these types of hereditary cancer risks.
What is this new GeneHome clinic at Moffitt?
Moore: One of the big needs that we have in our community is not just taking care of children and young adults who have cancer, but also doing what we can to either prevent that cancer or identify it as early as possible. There are a lot of cancers that we know come from a genetic reason, not just necessarily the environment or bad luck. Our clinic is designed to try and find those patients, give them as much guidance as we can and really shepherd them along this journey of this uncertainty. Our clinic helps with being able to identify patients who either have cancer and have a strong family history, or who might be at risk for having a problem with their genetics that could predispose them to that or patients who we haven’t quite identified yet, but maybe have some signs or symptoms, or maybe have some other family history that we need to explore and really help guide them.
Who is eligible?
Berry: Moffitt has historically seen adult patients, but now we are broadening services in the genetics arena from pediatric patients all the way through senior adult. We finally get to help infants, children and teenagers. Sometime a child has unfortunately already been diagnosed with a tumor or cancer and they’ve discovered that they’re affected with a hereditary cancer syndrome and they may have a higher risk for other types of cancer moving forward or one of their siblings might have a higher risk for certain types of cancer. Those would be the people that we are concerned with, people who we can help with their medical care, recommend screenings and other things to try to reduce those excess risks for that family.
How does this benefit patients?
Arcusa: The benefits are enormous. For a lot of these families this is the first time that they’re hearing about these conditions. How should they go about managing it? What recommendations are there? A lot of times these recommendations change over the years. We provide a good home base where they have a team that is going to be providing all of the annual recommendations that are available for their condition. If we don’t have the screening equipment here at Moffitt, we can recommend community resources. We touch base with these families to see who else in the family should get tested. It removes the burden from the family to have to do that on their own.
What are some examples of hereditary pediatric cancer syndromes?
Berry: One that is a classic on board exams is retinoblastoma. It’s a rare eye tumor that we can see in infancy and has a high chance of being hereditary. We also have syndromes that impact how blood is produced, where children don’t produce enough platelets and it can increase the risk for leukemia and other problems. Some examples are Fanconi anemia or other hereditary anemias where the bone marrow isn’t working properly. We call those bone marrow failure syndromes. We also see some early aging syndromes, which can increase the risk for childhood cancer. An example of that might be Dyskeratosis congenita.
How is genetic testing performed? Is it covered by insurance?
Arcusa: We mostly use blood tests. When we have very young children, we often try to use saliva because we want to spare them the needle poke. Sometimes we have to use a skin biopsy if the person has a type of blood cancer. Most of the time when there is a medical need for this test, most insurance companies are willing to cover some of the tests. Many of the laboratories that we work with have very affordable self-pay pricing. So even in cases where insurance does not cover the cost of the test, we work with many companies where the self-pay price is around $250. Many of these companies oftentimes have payment plans and other patient assistance options.
Can I or my child be discriminated against if we have genetic testing?
Arcusa: These test results cannot be used for discrimination purposes. We tell every patient before they test that this is something that will become part of their permanent record, but most citizens are protected by the Genetic Information Nondiscrimination Act, which means that their health insurance can’t raise their policy or deny them coverage because of their genetic conditions. If someone needs to change insurance providers, they can’t be denied a policy based on the genetic information that was collected.