Growing up, Kirsten Pipp came to think of cancer as normal. From her earliest years, she watched loved ones on both sides of her family succumb to the disease one by one.
Lung cancer. Breast cancer. Ovarian cancer. Melanoma. Prostate cancer.
The diagnoses piled up.
As a teen, Pipp immersed herself in cancer awareness and fundraising efforts. She lived for her 16th birthday, when she’d qualify to join her mom in an annual 60-mile breast cancer walkathon in memory of a beloved relative who died at 37.
A decade later, Pipp, 27, a social media consultant from Rockford, Michigan, still chokes up talking about those formative experiences.
“Seeing someone you love go from being that light in your life to, you know, just completely diminished … it’ll crush your soul,” she said.
It wasn’t until she reached college that Pipp looked around and realized not all families look like hers. Not all families live under the constant shadow of cancer.
“I just thought this was life. I thought that was what ‘normal’ was,” she said.
“As I get older and I see my friends’ grandparents still around, and their aunts and uncles—it’s just different. My family’s really small now.”
Three years ago, wanting to investigate the source of his own cancer, Pipp’s father, a resident of Rochester, Michigan, signed on for genetic testing. Having faced multiple cases of melanoma, other skin cancers and a recent prostate cancer diagnosis, he guessed he carried an inherited mutation of one of the BRCA genes.
“He wanted to know for himself if he did, so he could tell myself and my brothers if we had the possibility of having a 50% chance of having the BRCA gene (mutation),” Pipp said.
Prostate cancer and melanoma can coincide in men with a BRCA mutation, she explained. For women, a BRCA 1 or BRCA 2 mutation is associated with an increased risk for breast, ovarian and other cancers, including melanoma.
That Christmas, Pipp’s father sat his three children down and shared the results: He had tested positive for a BRCA 2 genetic mutation.
“I remember my dad saying, ‘Kirsten, you should probably get genetic testing done, too,’” she said.
She didn’t need much convincing. Even before her dad’s cancer diagnosis, Pipp had resolved to pursue testing someday.
“I have always been an advocate for myself,” she said, “and I always had this idea in my mind that I would go through genetic testing if I had the opportunity to.”
With her father’s conclusive results, Pipp met the insurance coverage criteria for genetic counseling and testing.
Not long after her October 2019 wedding, she got the ball rolling on a genetic testing referral. In August 2020, she met with the Cancer Genetics Program team at Spectrum Health Cancer Center.
Pipp had virtual visits with Mary Mobley, CGC, a genetic counselor, and Judith Hiemenga, MD, a cancer genetics specialist, before going ahead with testing. The team confirmed her odds of carrying the BRCA 2 mutation and explained what a positive test could mean for her future.
“Because she has a known family mutation and it’s in a parent, her chance of sharing that mutation is 50-50,” Dr. Hiemenga said.
The BRCA genes are supposed to repair damaged DNA, thereby preventing cancers, Dr. Hiemenga explained. When they don’t function properly, they result in a higher predisposition for breast cancer, ovarian cancer, prostate cancer, male breast cancer, melanoma and pancreatic cancer.
“It doesn’t mean you’re going to get those cancers, but it means your risk is higher,” she said.
The genetics team talked with Pipp about preventive measures should she test positive. Treatment options to reduce the risk of breast cancer include early and frequent breast imaging, taking estrogen-blocking drugs and having risk-reducing surgery—a double, or bilateral, mastectomy.
“All of those options seem to be equally reasonable in high-risk women,” Dr. Hiemenga said. “I always tell them that they have a choice.”
To reduce the risk of ovarian cancer, guidelines call for frequent pelvic exams and ultrasounds starting at age 30. And to address the risk of melanoma in BRCA2 mutation carriers, doctors recommend seeing a dermatologist once a year.
The genetics team also explained implications such as potential risks to Pipp’s future children.
To someone less prepared, the information could have felt overwhelming.
But because Pipp had done her homework, little of it surprised her. And once she got answers to her remaining questions, she found it easy to move forward with the DNA test—a simple saliva swab.
“I just want to be relieved of the uncertainty,” she said.
Pivotal phone call
For years, not knowing her cancer risk has weighed heavily on Pipp.
“Because I’ve lost so many close loved ones in my life, I’m terrified that that’ll happen again,” she said. “And not only for myself, but I’m scared, if something ever happened to me, how that’ll be for my family. So I’m not only relieving my burden, but I hope to be relieving theirs, too.”
Within a month of sending her saliva sample to the lab, Pipp received a phone call one afternoon from an unfamiliar number.
Half expecting a spam call, she answered to hear Mobley’s voice instead. The counselor got right to the point: “Well, Kirsten, I have great news for you.”
Pipp’s heart skipped a beat.
All of her results had come back negative—not just for the BRCA 2 mutation, but for all of the other related genes, Mobley reported.
Pipp has no inherited cancer risk.
“Honestly, I can’t believe it,” Pipp said a few days after receiving the news.
“I very much thought, and my family felt the same way, that there’s no way the test was going to come back negative. … I always had this image in my mind—and it’s a terrible image—but I always thought I was going to be … a young woman that is sick.”
That one phone call transformed her vision of the future.
No longer does she fear she’s bound to relive her close relatives’ experiences. No longer does she lie awake agonizing over what might happen if she and her husband start a family.
Without an elevated cancer risk, she can focus on living a healthy, active life.
“Kirsten is young, healthy and happy,” Mobley said. “I was very glad to be able to provide such good news to her.”
Removing the burden
Hearing her story may surprise some of her friends, Pipp said, because only her immediate family members knew she’d had genetic testing. But going public with her experience is part of her longtime commitment to cancer advocacy and helping others.
“This story is my way of being able to help younger women know that they can have answers … that will allow them to take the burden away,” Pipp said.
“I’m sharing my journey of uncertainty and prevention in hopes that other women will take matters into their own hands. Because you can take charge of your health. You just need the information to do that.”