When Your Child Faces Genetic Testing (Part 2): Four More Ways to Support Your Adult Child

Written by Rebekah Wells on behalf of FORCE

In Part 1, one family shared the importance of learning to let their adult children lead when it came to their genetic testing and decisions.

For this family, two adult daughters tested positive for the genetic PTEN mutation, which they inherited from their father. The eldest daughter is preparing to go through testing in the near future. Navigating test results, decisions and information has been a learning experience. In this article, Mom shares her biggest lessons for helping her daughters navigate their inherited mutation while keeping family relationships intact.

Note: To protect this family’s privacy, we do not use real names in this article. But the story, the emotion and the advice are very real—generously shared by a mother and her daughters so that other families might feel less alone.

2. Be a Safe Place, Not a Source of Pressure

One of the most important things you can offer your adult child is emotional safety.

“I want my kids to know they can call and they can rely on me, and they can share with me without being afraid that I'm going to say you shouldn't be doing this.”

When conversations feel like pressure or judgment, adult children often pull away. When they feel safe, they come closer.

3. Get support for yourself without relying on your children

This may be one of the hardest parts of this experience.

“There's nothing I can do. Literally nothing I can do. That feeling of not being able to do anything for your kids is the worst.”

When her daughters asked her not to share their diagnoses publicly, Mom respected that. They agreed she would share the news with her spouse and a close friend who happens to be a physician, but otherwise they kept the news private. That also meant she had very few places to process her own fear and emotions.

She understood that putting that weight on her daughters, who were already navigating their own diagnoses, wasn’t fair to them.

Over time, Mom found the outlet she needed through a FORCE support group for caregivers, a space where she could share freely, ask questions and connect with other parents who understood. At the same time, her daughters were also finding their own support through FORCE.

Finding that support—separately, but within the same community—made it possible for Mom to show up for her daughters in the way they needed: steady, present and without adding to their burden.

4. Ask Each Child What They Need, Don’t Assume

Siblings can have the same diagnosis and need completely different things. One wanted her mother at every appointment. Another set clear boundaries: certain topics, like fertility, were off-limits unless she brought them up. The eldest daughter, who has not yet been tested, faced a separate set of decisions and emotions to process.

Mom’s advice to other parents:

• Ask each child individually how much they want you to know and how much they want you to be involved.
• Respect boundaries, even when it’s hard—especially when it’s hard.
• Don’t compare how your children handle their diagnoses or decisions.
• Consider the feelings and experiences of adult children who have chosen not to test with the same respect.
• Your children know you’re worried. You don’t need to prove it. What they need to know is that your love doesn’t come with conditions or criticism.

5. Respect Who Your Child Chooses to Bring In

There is a lot of information to take in during medical appointments.

New terms. New risks. New decisions.

In those moments, it can be incredibly helpful for your child to have an extra set of ears—someone who can listen, take notes and help process what’s being shared.

For some, that might be a partner.
For others, a close friend.
Sometimes, it may be a parent.

Mom learned that her role wasn’t to assume she would be that person, but to be available if her daughters wanted her there.

Sometimes that meant being on the phone during an appointment. Sometimes it meant traveling to be there in person. And sometimes, it meant stepping back.

Each daughter had different boundaries around what they wanted to discuss and who they wanted involved. For example, one daughter chose to keep conversations about fertility and family planning private, and it helped to know ahead of time that Mom might be asked to leave the room for those discussions with healthcare professionals.

Having those conversations in advance made it easier to respect boundaries in the moment and to show up in a way that felt supportive, rather than intrusive.

Support looks different for everyone. The most important thing is that it’s on your child’s terms.

You Don’t Have to Do This Alone

If you're reading this as a parent, you may recognize yourself in parts of this story.

The fear.
The uncertainty.
The instinct to protect your child, even when you can’t take this on for them.

Mom found support through FORCE, a place where she could connect with other caregivers who understood what it meant to love someone through this experience.

At the same time, her daughters were finding their own support through FORCE as well, connecting with others who faced similar decisions.

That support didn’t take away the hard parts.
But it made them more manageable.

And it made it possible for each of them to move forward—in their own way, and at their own pace—but still together.

What this family learned is that while each person’s journey is different, no one has to go through it alone and FORCE is here to help.

The Peer Navigation Program (PNP)

FORCE’s Peer Navigation Program connects you or your child one-on-one with a trained volunteer who has been through something similar. These volunteers share the same type of genetic mutation and understand the decisions your family is facing. They offer a listening ear, practical guidance and educational resources— all completely free and confidential.

FORCE Support Groups

FORCE offers virtual support meetings led by trained peers and genetic counselors. Groups are organized by gene mutation and by community, including a group specifically for parents and caregivers.

Talking with your doctor about timing for genetic testing

There isn’t a single “right” age for genetic testing. Most providers don’t recommend testing children under 18 for adult-onset cancers unless it would change care right away. Talk with your doctor or a genetic counselor about your family history to decide what timing makes sense. Learn more about Genetic Testing.