Patient Stories

“It Was My Turn.”

A Breast Cancer Patient on Understanding Her Diagnosis

by Nancy E. Johnson

She put on the examination gown and sat in the holding area with the other women. And waited...

She didn’t want to be there.

After more than 10 years of normal mammograms, Shelly Staat went through the ritual again at age 53, a bit reluctantly because she was convinced that she’d have another good report. “I was giving the tech a hard time, like I do not know why I’m here,” she said. “We have heart disease and diabetes in my family, not cancer.”

A few days later, Northwestern Medicine called. Shelly needed to return to the Lynn Sage Breast Screening Center for a second mammogram, this one, diagnostic. The faces of women in her life—her mother, cousins, friends, colleagues—flashed across her mind. She’d heard the statistic that one in eight women in the United States will be diagnosed with breast cancer in her lifetime.

“I kept thinking of all these women,” Shelly said. “Then, I just knew it was my turn. It was going to be a positive diagnosis.”

Her diagnostic mammogram revealed a mass, and she would need to return for a biopsy. About a week after the procedure, Shelly was leaving work for the day, walking through the parking lot, when her phone rang. It was the hospital calling. The interventional radiologist who was calling asked Shelly if she was driving. Sitting behind the wheel of her parked car, Shelly learned doctors had found not just one lump, but two; and the pathologist had diagnosed both as cancerous.

When Shelly was diagnosed with stage II, HER2-positive breast cancer, she immediately turned to her pathology report for guidance on what would come next.

“I wanted to understand all the different components that went into the diagnosis,” Shelly said. She paid special attention to the biomarkers, which are proteins and molecules that indicate how cancer cells will grow in the body and can determine the ultimate prognosis. “It was important for me to see how personalized my treatment could be.”

Shelly made an appointment with Popi Siziopikou, MD, PhD, FCAP, director of breast pathology at Northwestern University Feinberg School of Medicine. She wanted to speak with the physician who made the diagnosis and see slides of her tissue under the microscope.

“My patients are often very informed and always anxious,” said Dr. Siziopikou. “They scrutinize the pathology report as soon as it’s released, and this information gives them a sense of empowerment.”

Shelly came into their consultation armed with questions. “I wanted to know what those other biomarkers were and what they meant. They showed my cancer was more aggressive than I’d thought, and that concerned me,” she said. “But Dr. Siziopikou explained to me that with a HER2 positive cancer, those go hand-in-hand.”

Dr. Siziopikou approaches every case as a specialist. She is very familiar with the College of American Pathologists cancer protocols and uses them almost instinctively. She always refers to them when teaching residents and fellows. “I’ll say, ‘You know here it says you need the size. Did you measure the tumor appropriately? What grade was it?’ It’s also helpful for pathologists working outside their specialties. For example, they may only see a tumor of the pancreas once every two months, so the protocols help them remember to incorporate the proper elements.”

Following National Comprehensive Cancer Network (NCCN) treatment guidelines under the care of her physicians, Shelly’s treatment began and she underwent a mastectomy. “The CAP protocols gave me a lot of confidence that I was being treated to the current best standard of care,” she said.

Choosing to Be Positive

After complications from multiple surgeries for breast reconstruction, Shelly began a chemotherapy regimen that included Perjeta, Carboplatin, Taxol, and Herceptin. This cocktail robbed Shelly of her sense of taste. Bread felt like sawdust on her tongue, and the Diet Coke she’d always craved began to taste like metal in her dry mouth.

Even in her lowest moments, she believed she’d beat breast cancer. The day of her biopsy, Shelly had grown increasingly upset thinking of her daughters, Evelyn and Ellery, who were eight at the time. What if the worst happens when my kids are so young? The nurse in the room—an older woman with a brown bob haircut—held her hand.

Shelly said, “This nurse had been doing this work for 30 years and she told me ‘You’re going to be fine. You won’t die from this. You’re going to dance at your daughters’ weddings.’ That’s when I decided I wasn’t going to give up. I believed that nurse. I knew I would be fine.”

The Cancer Protocols and The Pathology Report

While Shelly began her cancer journey, Thomas P. Baker, MD, FCAP, and Joseph D. Khoury, MD, FCAP, were leading the Cancer Committee of the College of American Pathologists. This group of expert pathologists develops and updates cancer protocols, which serve as a roadmap for cancer types found in various organs, providing a set of reporting standards that guide patient care worldwide.

This cancer reporting information can be found in the synoptic section of a patient’s pathology report that details the size of the cancer, how invasive it is, lymph node involvement, as well as the grade, margin status, and biological features. Dr. Khoury, director of pathology and laboratory medicine at MD Anderson Cancer Network, compares the protocols to the processes the aviation industry follows to prepare for flights.

As medicine and pathology become more complex, we must be sure the information we’re producing on any given patient is all in one place and easy to read.

“I’m not a pilot; but I know that when pilots get on a plane, they go through checklists to make sure that no detail is overlooked because of the high stakes inherent to aviation,” Dr. Khoury said. “As medicine and pathology become more complex, we must be sure the information we’re producing on any given patient is all in one place and easy to read.”

For cancer patients, this means there’s a consistent set of information that will follow them from diagnosis throughout the course of their treatment and beyond. Only the most critical data needed by the patient and her care team is included in the pathology report.

Often, there are many medical experts involved in the cancer care team. For example, a breast cancer patient may be seen by a surgeon at a community hospital for a lumpectomy. Then she might go elsewhere for radiation therapy and chemotherapy. From there, her doctors may send her to another medical center for a clinical trial.

“It does the patient little good if key information is missing in her pathology report that would be needed for further treatment or consideration for enrollment into a clinical trial,” said Dr. Baker, senior pathologist at the Joint Pathology Center in Silver Spring, Maryland. “Our cancer protocols focus on identifying the appropriate information needed in every pathology report, that will allow her to be staged appropriately and have all the information she needs to navigate the continuum of care. The pathology report has to be complete and communicated in a way that everybody understands.”

These cancer protocols are created and updated through a compilation of standards, including content from the World Health Organization (WHO) for tumor type, and the American Joint Committee on Cancer (AJCC) for preliminary cancer stage classification. In addition, once new studies and new information about specific cancers are published, the CAP updates its protocols to reflect those elements that directly impact patient care.