What To Expect At Cancer Predisposition Clinic

    Ralphie’s lip quivers as he looks at me. The ultrasound tech runs the probe over his abdomen, concentrating carefully on his back. The exam takes about 20 minutes and then he’s back in his stroller, happily holding a lollipop. Ralphie has a cancer predisposition syndrome, just like two of his siblings. Unlike the other two, he is getting surveillance to catch cancer early before it could spread. 

    Ralphie has Perlman Syndrome [Learn more about Perlman Syndrome HERE].

   He has a 64%-70% chance of developing a Wilms tumor, the most common type of kidney cancer, by age eight  (Kalish et al, 2024 HERE). Ralphie’s nine-year-old sister was not identified as having a cancer predisposition syndrome until after she had been diagnosed with cancer, Wilms tumor, twice. By that time cancer filled her little body, displacing her liver, traveling throughout her abdomen, attaching itself to her pelvis and rectum. She spent over a year receiving chemotherapy and radiation. 

Learn about Wilms tumor and access valuable resources HERE.

Ralphie is different.  As soon as Ralphie was born, our genetic counselor ordered testing, which confirmed his diagnosis. He’s been seen in a cancer predisposition clinic since he was an infant. Genetic predisposition clinic can include visits with a genetic counselor, social worker, care manager, and an oncologist. Every three months he has an ultrasound with the goal of detecting cancer at an early stage, before it has a chance to metastasize. Studies of Beckwith-Wiedemann patients, another Wilms tumor predisposition syndrome, showed that routine ultrasound screenings are an effective way to find Wilms tumors at earlier stages (Mussa et al, 2019 HERE).

    So far, Ralphie has not developed cancer, but we will keep screening to stay on top of his health. In the meantime, we continue advocating for increased accessibility for genetic testing so everyone has the opportunity to make educated choices for their own families. Elevate Wilms has taken the first steps to advance these efforts by collaborating with various stakeholders, from geneticists to pathologists to oncologists, discovering the mutual desires to accomplish this goal.

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Want to learn more about these efforts?

   Check out Elevate’s exclusive webinar with Joyce Turner , MS, CGC, Director of the Genetic Counseling Program from Children’s National in Washington, D.C. as she shares more about genetic testing on our YouTube Channel HERE today! 

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What To Expect At Cancer Predisposition Clinic

    Ralphie’s lip quivers as he looks at me when the tech runs the ultrasound over his abdomen, concentrating carefully on his back. The exam takes about 20 minutes and then he’s back in his stroller, happily holding a lollipop. Ralphie has a cancer predisposition syndrome, just like two of his siblings. Unlike the other two, he is getting surveillance to catch cancer early, if he were ever to be diagnosed, before it could spread. 

    Ralphie has Perlman Syndrome [Learn more about Perlman Syndrome HERE].

   He has a 64%-70% chance of developing a Wilms tumor, the most common type of kidney cancer, by age eight  (Kalish et al, 2024 HERE). Ralphie’s nine-year-old sister was not identified as having a cancer predisposition syndrome until after she had been diagnosed with cancer, Wilms tumor, twice. By that time cancer filled her little body, displacing her liver, traveling throughout her abdomen, attaching itself to her pelvis and rectum. She spent over a year receiving chemotherapy and radiation. 

Learn about Wilms tumor and access valuable resources HERE.

Ralphie is different.  As soon as Ralphie was born, our genetic counselor ordered testing, which confirmed his diagnosis. He’s been seen in a cancer predisposition clinic since he was an infant. Genetic predisposition clinic can include visits with a genetic counselor, social worker, care manager, and an oncologist. Every three months he has an ultrasound with the goal of detecting cancer at an early stage, before it has a chance to metastasize. Studies of Beckwith-Wiedemann patients, another Wilms tumor predisposition syndrome, showed that routine ultrasound screenings are an effective way to find Wilms tumors at earlier stages (Mussa et al, 2019 HERE).

    So far, Ralphie has not developed cancer, but we will keep screening to stay on top of his health. In the meantime, we continue advocating for increased accessibility for genetic testing so everyone has the opportunity to make educated choices for their own families. Elevate Wilms has taken the first steps to advance these efforts by collaborating with various stakeholders, from geneticists to pathologists to oncologists, discovering the mutual desires to accomplish this goal.

———————————————-

Want to learn more about these efforts?

   Check out Elevate’s exclusive webinar with Joyce Turner , MS, CGC, Director of the Genetic Counseling Program from Children’s National in Washington, D.C. as she shares more about genetic testing on our YouTube Channel HERE today! 

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READ MORE about Genetic Predisposition &

Hereditary Cancer Programs Below:

Genetic Predisposition Syndromes, like Perlman HERE

General Information About Childhood Cancer Genomics HERE

 Cincinnati Children’s Hereditary Cancer Program HERE

 Riley Hospital’s Hereditary Cancer Program HERE

 MSK’s Hereditary Cancer Program HERE

  Are you ready to become an informed and savvy advocate?

  Join us as we dramatically improve and save the lives of those diagnosed with childhood cancer and learn more all month long during Kidney Cancer Awareness Month. 

Empowerment. Advocacy. Progress.