Finding Comfort in Knowledge

NorthShore Patient Mary Patoff

NorthShore patient Mary Patoff didn't learn her mother had breast cancer until her mother's 80th birthday, when she was close to death. Her mother had been diagnosed 10 years earlier but had chosen to keep her condition a secret and not seek treatment. “That was her script, her story, not mine,” said Patoff, who was recently found to have a newly identified gene that puts her at a higher risk of developing the disease.

Patoff considers herself among the fortunate to now have a team of specialists at NorthShore who are watching her very closely. She is having an MRI or a mammogram every six months to watch for any early sign of the disease. “Knowledge is power,” said Patoff. “I’m grateful to be aware of any risks and be proactive about my health. My two daughters, in their 20s and 30s, have a 50 percent chance of having the same (PALB2) gene. I’ve alerted all my family members.”

Patoff is a patient at NorthShore’s Risk Assessment and Prevention–High-Risk Breast Program, which was launched in 2014, established with a $1 million grant from the North Suburban Healthcare Foundation. More than 450 new patients have been seen and assessed since the start of the program, said Barbara Guido, Advanced Practice Nurse for the program. Of those seen, 50 to 60 percent were found to be at high risk. Additionally, at least six patients were diagnosed with breast cancer. “Most breast cancers, if found at an early stage, are highly treatable and survivable,” said Guido. “We wouldn’t have been able to start this program without philanthropic support.”

Donated funds support a comprehensive risk assessment that builds on NorthShore’s Electronic Medical Record (EMR) system and uses highly specialized software that allows staff to capture and track a patient’s complete medical and family history, diet and activity level, and other risk factors. Patients receive a breast exam from the nurse practitioner and breast surgeons Katharine Yao, MD, or Catherine Pesce, MD.

If patients are found to have a 20 percent or greater lifetime risk of developing breast cancer, they are identified as high-risk and an individualized plan is developed to manage their risk. This may include enhanced breast screening, medications to prevent breast cancer or preventive surgery. They are closely followed in the program every six months.

“Some are reassured, others receive validation. But we give them the tools to manage and reduce their risks, with our guidance and help, which is empowering,” said Guido, who sees patients at NorthShore Evanston and Highland Park Hospitals. The program is designed for anyone who wants to undergo risk assessment, including men—and particularly those whose families have a history of breast and/or ovarian cancer.

The grant has also provided funds for patient education materials and outreach services in the community. Guido attends community fairs and performs screenings in underserved neighborhoods to let women know about the program and services NorthShore provides. 

Primary care physicians often refer patients to the program, as do obstetricians/gynecologists. Patients can refer themselves to the program as well. Patient Mary Patoff, whose mother and two aunts had breast cancer, gives the High-Risk Breast Program high marks. “I’ve had a wonderful experience, and I’m not anxious or in the dark anymore,” she said.

One of the goals of the program, besides providing a medical home for patients to undergo routine surveillance, is to build a database of high-risk patients using the EMR system so that common risk factors will be defined and a personalized treatment strategy can be developed for each individual. “We're also looking at new genomic markers for risk with our research scientists at the NorthShore Research Institute,” said Dr. Yao.  

“The NorthShore risk assessment and prevention program individualizes risk assessment and surveillance for our patients utilizing new breast imaging techniques and genomic markers, thus moving us closer to true personalized medicine for all breast patients, not just breast cancer patients,” added Dr. Yao.

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