En esta entrada de blog de preguntas y respuestas, y como parte del mes Nacional de la Herencia Hispana, la coordinadora del programa “Insights” de CancerCare y trabajadora social de oncología, Sara Grisales Jaramillo, LMSW, comenta los servicios y recursos en español de cancerCare para personas afectadas por el cáncer

¿Podría compartir con nosotros algunos de los retos a los que se enfrentan las personas y familias hispanas a la hora de enfrentarse al diagnóstico y tratamiento del cáncer?
La comunidad hispana/latina experimenta varios retos únicos. Algunos de los más importantes son la falta de acceso a la educación de salud, incluida la comprensión de qué es el cáncer y en qué puede consistir su tratamiento. El estatus migratorio es también uno de los mayores impactos en la comunidad hispana. El estatus migratorio está directamente relacionado con el acceso al seguro médico y a la atención médica. Muchas personas de la comunidad hispana luchan por conseguir servicios de apoyo adecuados, así como opciones de tratamiento adecuadas, educación sobre el plan de tratamiento y como tomar decisiones compartidas. Comunicación con el equipo medico y el nivel de comodidad de los pacientes y cuidadores es afectado por las barreras lingüísticas.

¿Qué recursos ofrece CancerCare específicamente adaptados para apoyar a las personas hispanas que están navegando por las complejidades de la atención del cáncer?
CancerCare ofrece servicios en español, tales como consejería individual, grupos de apoyo y navegación de recursos. Estos servicios abordan las necesidades emocionales de las personas hispanas que están luchando con los impactos del cáncer. Nuestros servicios también proporcionan a los individuos las herramientas para navegar por tales complejidades y recursos que abordan las necesidades básicas. Nuestros servicios capacitan a los clientes para abogar por sí mismos.

¿Podría destacar alguna iniciativa o programa culturalmente sensible que CancerCare haya desarrollado para garantizar que los clientes latinos reciban la mejor atención y asistencia posibles?
cancerCare ha desarrollado talleres en español para educar a los hispanos sobre cómo enfrentar un diagnóstico de cáncer, al igual que las formas de conseguir recursos. cancerCare también ofrece un grupo de apoyo a pacientes en español que ayuda a establecer una comunidad entre ellos. cancerCare tiene una gran cantidad de recursos dirigidos específicamente a la comunidad hispana.

Las barreras lingüísticas pueden ser a menudo un reto importante. ¿Cómo aborda CancerCare la accesibilidad lingüística para garantizar que los hispanohablantes puedan acceder a información y apoyo vitales relacionados con el cáncer?
cancerCare ofrece todos los servicios en español. Desde que un cliente contacta inicialmente con cancerCare, se le pone en contacto con un trabajador social que habla español. cancerCare también tiene publicaciones y recursos en español. Las publicaciones en español contienen información sobre las formas de enfrentar al cáncer, los efectos secundarios, enfrentar las necesidades de ser cuidador y mucho más. cancerCare también cuenta con personal bilingüe y bicultural dentro de departamentos como la unidad de asistencia financiera y el departamento de trabajo social. Nuestro personal bilingüe y bicultural interactúa directamente con los clientes de cancerCare eliminando la barrera del idioma.

¿Qué consejos o recomendaciones tiene para las personas y familias latinas que se enfrentan actualmente a un diagnóstico de cáncer y cómo pueden aprovechar al máximo los recursos disponibles durante este importante mes de concienciación?
La experiencia del cáncer puede ser aislante cuando los clientes se mantienen conectados, se reducen los sentimientos de depresión. Mantenerse en contacto también permite a las personas sentirse capacitadas para abogar por sí mismas y tomar decisiones informadas sobre su atención o la de sus seres queridos. Conectarse a través de un grupo de apoyo también puede ser útil, ya que escuchar otras experiencias puede ayudar a encontrar maneras de hacer frente a los desafíos y encontrar un sentido de pertenencia y comunidad.

In this guest Q&A blog post and as part of National Hispanic Heritage Month, cancerCare’s Insights Program Coordinator and oncology social worker, Sara Grisales Jaramillo, LMSW, discusses cancerCare’s Spanish languages services and resources for people impacted by cancer.

Can you share some insights into the unique challenges that Hispanic individuals and families might face when dealing with a cancer diagnosis and treatment?
The Hispanic/Latinx community experience several unique sets of challenges. Some of the most prominent challenges include lack of access to health literacy, including understanding what cancer is and what cancer treatment may consist of. Immigration status is also one of the biggest impacts in the Hispanic community. Immigration status is directly connected to access to health insurance and health care. Many individuals in the Hispanic community struggle with getting proper supportive services as well as adequate treatment options, treatment plan education and shared decision making. Language barriers also impact communication with medical teams and the comfort levels of patients and caregivers.

What resources does cancerCare offer specifically tailored to support Hispanic individuals who are navigating the complexities of cancer care?
cancerCareprovides Spanish-speaking services, such as individual counseling, support groups and resource navigation. These services address the emotional needs of Spanish-speaking individuals who are struggling with the impacts of cancer. Our services also provide individuals the tools to navigate such complexities and resources that address basic needs. Our services empower clients to advocate for themselves.

Could you highlight any culturally sensitive initiatives or programs that cancerCarehas developed to ensure that Latinx clients receive the best possible care and assistance?
cancerCare has developed Spanish-speaking workshops to educate Spanish speakers on how to face a cancer diagnosis as well as ways seek resources. cancerCare also provides a Spanish-speaking patient support group that aids in establishing community. cancerCare has a plethora of resources geared specifically towards the Hispanic community.

Language barriers can often be a significant challenge. How does cancerCare address language accessibility to ensure that Spanish-speakers can access vital cancer-related information and support?
cancerCare provides its services in Spanish. From when a client initially contacts cancerCare, they are connected with a Spanish-speaking social worker. cancerCare also offers publications in Spanish. Spanish publications contain information on ways to cope with cancer, side effects and coping as a caregiver. cancerCare also has bilingual and bicultural staff within departments like the financial assistance unit and the social work department. Our bilingual and bicultural staff interact directly with cancerCare clients eliminating the language barrier.

What advice or recommendations do you have for Latinx individuals and families who are currently dealing with a cancer diagnosis and how can they make the most of the resources available during this important awareness month?
The cancer experience can be isolating. When individuals stay connected, it reduces feelings of depression. Staying connected also allows individuals to feel empowered to advocate for themselves and make informed decisions about their or their loved one’s care. Connecting through a support group can also be helpful, as hearing other experiences can help with finding ways to cope with the challenges and finding a sense of belonging and community.

The population of childhood cancer survivors in the U.S. is increasing, with an overall childhood cancer survival rate greater than 85% five years after diagnosis. However, survivors can still be at increased risk of various health conditions, including second cancers.

Using data from the Childhood cancer Survivor Study (CCSS) and the St. Jude Lifetime Cohort Study (St. Jude Life), scientists at St. Jude Children’s Research Hospital have identified a genetic explanation for why a small proportion of survivors is more likely to develop second cancers and why these cancers may be more severe or deadly.

The findings, which will inform genetic counseling, testing and adoption of personalized cancer screening and prevention strategies, were published today in The Lancet oncology.

The St. Jude group showed that survivors with pathogenic (damaging) genetic variants in specific genes, called cancer-predisposing variants, are at an increased risk of developing second (subsequent) cancers as adults, and those cancers are more likely to be severe and deadly.

The scientists had previously identified that survivors with pathogenic variants in one of 60 different cancer-predisposing genes or 127 DNA damage repair genes were more likely to experience a second or subsequent cancer. This study extends that research to show a direct connection between cancer-predisposing variants and increased second-cancer-related mortality.

Many of these genetic variants are known to be causally linked to cancers. For example, the tumor suppressor gene TP53 is one of the 60 genes included in the analysis. The key to the discovery’s utility is that these variants are present in the DNA of patients when they are diagnosed with cancer as children, allowing for an individualized medicine approach to be developed early in life for each survivor.

By promoting better understanding of the effect such genes can have on future cancer risk and its outcome beyond the primary childhood cancer, the study will help inform efforts to prevent second cancers and improve the outcomes in these individuals.

“Our study pinpoints that clinical genetic testing to screen for and identify if survivors are carriers of these pathogenic variants could lead to screening and early interventions for those at higher risk to develop deadly second cancers, potentially saving their lives,” said senior corresponding author Zhaoming Wang, Ph.D., St. Jude Department of Epidemiology and cancer Control.

cancer prevention in adult childhood cancer survivors

The total number of childhood cancer survivors who develop second or subsequent cancers is small (<10% based on current studies), and the percentage of survivors who carry cancer-predisposing variants is low (about 6%). Together, these factors have made it extremely challenging to study and understand the genetic risks for second cancers and their outcome in this population.

To reach statistically meaningful results, Wang and his collaborators combined whole genome/exome sequencing and clinical data from over twelve thousand survivors of childhood cancer. The study combined data from North America’s two largest survivorship studies, the CCSS and St. Jude LIFE cohorts.

“This is the first comprehensive study looking for the genetic reason for late mortality—specifically late mortality due to second cancers,” Wang said. “Now we know that cancer-predisposing variants contribute to the risk of death from second cancer.”

Increased surveillance may help limit the impact of these cancer-predisposing variants as childhood cancer survivors grow into adulthood. By knowing which survivors are at greater risk, health care providers may be able to recommend personalized cancer screening, which may lead to the detection of additional cancers at their earliest and most treatable stage.

These variants are part of the inherited (germline) DNA with which people are born. This means they can be detected in children when they are first diagnosed with childhood cancers, arming survivors with the knowledge they need to lower their risk later in life.

“Even before finishing childhood cancer treatment, clinicians can recommend referral to do genetic counseling so that survivors with these variants can seek cancer prevention strategies later on,” Wang said. “Depending on the gene harboring the variant, survivors that are carriers may be able to implement prevention strategies to safeguard their long-term health.”