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Breast Cancer Testing: When to share results?

In July of 2009--Maria Baker's life was turned upside down when she was diagnosed with breast cancer-- but a follow-up genetic test showed she didn't carry the mutated gene that could be passed along to her children Dillon and James.

Even though the test was negative she chose not to tell them--but she was left with an even more difficult conversation--that she actually had breast cancer.

She started with her oldest son James who was 9 at the time.

"Of course as soon as my son heard the word cancer he got really upset and he started running away,” Maria recalled. “I literally had to physically hold him back and he kept screaming there is no cure for cancer."

Maria told him things were under control but the chemotherapy might make her lose her hair.

Her youngest son, Dillon was seven at the time and took the news a little better.

"I always tell everybody hearing those words, you know, you have cancer is always though,” Maria said. It’s probably the hardest thing, but to me personally it's no match how hard it was to tell my oldest son specifically.”

Sharing genetic test results can't be any easier.

Researchers at the Fox Chase Cancer Center in Philadelphia asked 253 parents if they shared the results with their kids--and how the kids handled the information.

Of those who tested positive—66% of the 505 kids were informed of the test results.

Researchers also found the older the child was the more likely the parents were to share the results--but about half of the kids were between the ages of 10 and 13 and they took the news the hardest.

Baylor-Grapevine breast cancer nurse navigator Maureen Aschman said parents need to make sure they have all the information because for kids unanswered questions can be scary.

"It's really a personal choice about when you share this information with children because there is not a lot they can do about it even if they know there is a genetic mutation in the family," Aschman said.

Testing usually begins at age 18.

Therapist Charity Adams said it's not necessarily age but rather maturity level that matters most.

"Parents know their kids,” Adams said. “They know what their kids can handle, they can probably guess what their reaction is going to be based on all of the time they've spent with them so this is sort of figuring out how much your kid can handle, how much do they need to know type of thing."

If Maria had tested positive her kids chances of someday getting breast cancer would have gone from 0.5% to 6%.

She chose not to say anything but her cancer diagnosis still speaks volumes.

"I know that is going to stay with him forever," Maria said.

Copyright © 2014, The Baltimore Sun
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