Cancer survivorship is filled with many challenges, hopes, and expectations. June 5 marks National Survivorship Day, and survivorship is being celebrated throughout the month. Survivors are often not sure where they're going once their cancer journey commences. In my practice, I care for people with a genetic risk for cancer, and I work with survivors on a regular basis. When family members call for appointments, they often aren't sure what to think when I tell them that the family member who is the survivor should come to an appointment. These family members often tell me that they do not want to bother, inconvenience, or worry the cancer survivor. I try to explain that it's best to bother the survivor and have them come to the appointment. For many families, genetic evaluation is an important component of survivorship care.
When a family appears to have hereditary risk, it's best to start genetic testing with a person who has had the diagnosis of a cancer. It doesn't matter if the diagnosis was recent or decades ago. Testing is initiated in a person with the diagnosis because there is a better chance of identifying the mutation. When I tell families this, they often say, "well the survivor does not have any cancer anymore so why do we have to bother them with coming in for testing?" This is where there is often a big misconception.
Testing is just as important for the survivor as for the family. If a survivor is found to have a genetic mutation, they are likely at risk for other cancer or cancers. At first thought, this is very stressful to survivors and their families. It is distressing to think that there could be risk for another malignancy. Many survivors say they're there for testing only because it might help their siblings or offspring understand their risk. They're willing to do testing for that reason. These survivors need to understand that testing, first and foremost, has information for them as well. It could potentially increase their survivorship if they are engaged in a more tailored program of prevention and detection based on a better assessment of their risk.
Some long-term survivors have had genetic testing in the past that was negative for known mutations associated with increased cancer risk. These survivors should be educated that many more genes have been identified in the past two or three years. With a more comprehensive, updated test, mutations may be detected which could help clarify risk for the survivor and their family members.
Survivors need support from their families and from healthcare providers. Survivorship has stressful and wonderful moments. For some, genetic testing could change the path of their survivorship—often for the best—especially if a second cancer is prevented or detected early. Help survivors choose the best possible path with support and genetic evaluation when appropriate. This is important on June 5 and every day that oncology nurses care for survivors and their families.