Patients with Genetic Risk for Cancer Feel at Home in New Program

By Sara Bondell - September 04, 2018

At just 26 years old, Abrianna Carver has seen her fair share of doctors.

She says she was “bounced around” from doctor to doctor throughout her childhood. She had multiple surgeries, but no one was able to pinpoint what was causing her pain.

Eventually, Carver was diagnosed with Cowden Syndrome, a genetic condition that causes benign tumors to grow inside the body. It also carries an increased lifetime risk of multiple cancers.

Carver finally had an answer, but it left her with even more questions.

The fifth-grade teacher turned to Moffitt and she found herself at home in the GeneHome program.

“It feels so good to be somewhere where they don’t give up on you,” said Carver.

The GeneHome program started in March of 2017. It’s a hereditary clinic that sees patients who have had genetic testing and been found to carry a change in a gene that can cause cancer. 

Dr. Xia Wang, MD, clinical geneticist.

“Five percent of cancer is hereditary,” said geneticist Dr. Xia Wang. “Since it is rare, a lot of patients have never heard about these genes before and suddenly they hear they have a high risk for not just one cancer but multiple cancers, and it’s very overwhelming.”

Maxine Chang, nurse practitioner

That’s where Dr. Wang and nurse practitioner Maxine Chang come in. Heading up GeneHome, the pair provides screening and prevention recommendations and counseling services.

“We are kind of the gatekeeper,” said Chang. “We help patients with everything that needs to be done so they feel like someone is watching over them. It takes the pressure off of them and makes them more comfortable.”

Carver says she immediately felt comfortable in GeneHome’s hands.

“I didn’t feel like they were overanalyzing me,” she said. “They got to know me and my family and my background then started educating me on Cowden Syndrome, what I need to do and how often I need to be screened.”

Carver says the program also helped to get her parents tested for genetic mutations.

In GeneHome’s first year, the program saw 150 patients. It is on track to see even more patients in 2018, enrolling 120 patients in just the first few months of the year. Once a patient is part of the program, GeneHome follows them for life. That way they can be alerted to new prevention and screening advancements, and if they are diagnosed with cancer they can get in to see a Moffitt physician quickly.

Carver plans to move away from Florida next year, but says she will stay with GeneHome no matter where she ends up.

“I would recommend GeneHome to everyone,” she said. “I have had such a journey of trying to find a facility that educates me and my family and to know that they care so I don’t see myself going anywhere else.”

For more information on GeneHome, click here.

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