Stories about: pediatric cancer

How precision medicine turned Jesus’ unique tumor into an operable one

Jesus stands on a playground jungle gym in August 2017, after a cancerous tumor was removed surgicallyOn a hot, August day in a Boston park, Jesus Apolinaris Cruz cooled off with a water squirt gun fight with his mother and sister. As he nimbly ran and dodged their aim, he twisted around to sneak shots of water back in their direction.  Peals of laughter rang out from the group as Jesus landed a jet of water on his sister.

It’s hard to imagine that just weeks earlier, Jesus, 13, had undergone surgery near his hip to remove an unclassified tumor, so-described because it couldn’t be categorized as any specific kind of cancer.

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How genetics can help predict — and sometimes stop — childhood cancers

cancer-genetics-childhood-cancerAmy Kindstedt hates cancer, but the 9-year-old is very thankful for one thing: Because genetic testing on her baby brother Hunter revealed he had the same genetic mutation she did, his cancer was caught much earlier than hers — possibly sparing him the same level of intense treatment she endured.

The mapping of the human genome has ushered in the age of precision cancer medicine, in which an individual’s treatment can be tailored to the specific genetic abnormalities of her disease. In recent years, much attention has been brought to genetic testing for cancer risk, particularly around Angelina Jolie and her decision to undergo preventative surgeries.

Sometimes, a gene that contributes to disease contains a mutation, similar to misspelling a word, which can lead to a higher risk of cancer. In Jolie’s case, this was a mutation in the BRCA1 gene. Knowing which mutated genes are at fault for a particular cancer can also help physician-scientists determine, through genetic testing, which members of a patient’s family may have the same mutations and be at higher risk.

Less than a month after Amy’s lung surgery, Hunter had a tumor removed from his lung, too. ~ Susan Kindstedt

But genetic mutations don’t just affect adults. The Pediatric Cancer Genetic Risk Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, where the Kindstedts were treated, offers multidisciplinary care to families in this situation. During twice-monthly clinics, patients at increased risk for hereditary cancers and their relatives meet with pediatric oncologists, genetic counselors, psychologists and other specialists from Dana-Farber Cancer Institute and Boston Children’s Hospital for cancer risk assessments, recommendations for managing cancer risk and psychosocial support.

“Parents often ask what caused their child’s cancer, whether it could be genetic, and whether other children in the family might also be at risk,” says Dr. Junne Kamihara, co-director of the Pediatric Cancer Genetic Risk Program. “We provide a team that can address these issues, with an excellent referral network of experts in the field all dedicated to working with our families to help find answers.”

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Talking about a new cancer diagnosis with your child

The following information originally appeared on Insight, a blog by Dana-Farber Cancer Institute.

Helping a loved one face cancer is never easy, but the challenge is especially daunting when the patient is your own child. The clinicians at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center work with pediatric cancer patients and their families every day and have experience in helping families approach the subject. Here,  Lisa Diller, MD, Anna Muriel, MD, and Jorge Fernandez, LCSW offer tips for talking with your children about their illness.           

1. Include them in the discussion. For many parents, the natural instinct is to not give their child information about their diagnosis to avoid scaring them. But children can view this protection as exclusion, a feeling that they are not important enough to include in the discussion. It’s also anxiety-provoking in that it creates uncertainties and fears that the situation may be worse than it really is.

2. Find a good time and place. Figure out the best time to talk to your child; maybe in bed, or in the car, or even while doing something fun or active. Whatever feels most comfortable to them. We have resources that can help in the discussion.

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How to talk to children about cancer

Our colleagues at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC) recently shared this very helpful blog post on how to talk to young children with cancer about their illness. After reading it I wanted to share with Thriving readers, as many of the suggestions apply to a number of pediatric illnesses. For more information on pediatric cancer and its treatment, please visit DF/CHCC’s blog, Insight.

Helping a loved one face cancer is never easy, but the challenge is especially daunting when the patient is your own child. The clinicians at DF/CHCC work with pediatric cancer patients and their families every day. Lisa Diller, MD, Anna Muriel, MD, and Jorge Fernandez, LCSW – offer these tips for talking with your children about their illness.           

1. Include them in the discussion. For many parents, the natural instinct is to not give their child information about their diagnosis to avoid scaring them. But children can view this protection as exclusion, a feeling that they are not important enough to include in the discussion. It’s also anxiety-provoking in that it creates uncertainties and fears that the situation may be worse than it really is.

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