SOUTH KINGSTOWN, R.I. — Ann Kelley died Oct. 31, but not without first reacting with determination and perseverance to help others avoid her fate.
The late South Kingstown resident led the effort for a groundbreaking law in 2014 that requires health-care testing facilities to notify patients about possible follow-up exams needed when dense breast tissue is found. This finding usually occurs when a mammogram is done.
“There were so many other women out there who could potentially experience this, so she was fighting for them, too,” said husband Charlie Kelley about how her dense breast tissue hid from regular mammograms a growing invasive and terminal cancer that a more sensitive diagnostic test, such as an ultrasound, could have found.
In 2013, after that diagnosis, she became an advocate who led the fight to create Rhode Island’s current law — too late to save herself — mandating that notice about further possible tests, such as ultrasound screening, or a breast MRI examination, or both, depending on individual risk factors.
Because of this need for early detection, Charlie Kelley acknowledged, his wife left a legacy of help for other women.
Nearly half of all women age 40 and older who get mammograms are found to have dense breasts, according to the National Cancer Institute. It is often inherited, but other factors can influence it. Factors associated with higher breast density include using postmenopausal hormone replacement therapy and having a low body-mass index.
Only a mammogram can show if a woman has dense breasts, according to the institute. Dense breast tissue cannot be felt in a clinical breast exam or in a breast self-exam. For this reason, dense breasts are sometimes referred to as mammographically dense breasts and tumors can be missed without further testing.
The Radiological Society of North America has reported that a June 2018 Norway study of nearly 108,000 women found that those with dense breasts had poorer outcomes in all metrics, including recall and biopsy rates, screen-detected cancers and interval cancers.
These findings prove that early detection is critical and that notification requirement essential, said Charlie Kelley.
It started, Kelley said, when Ann found a lump during a self-breast exam. Her doctor did a mammogram, which showed nothing. Yet, the doctor was sure something was there and had her undergo an ultrasound test, which revealed the tumor, Kelley said.
“She asked, ‘Why it was not showing on mammogram?’ That’s when he explained dense breast tissue. ‘Why didn’t somebody tell me that basically what I was doing with mammograms was useless,’” he recalled her saying, adding that she would have gone directly for ultrasound tests had she known the risk.
Caroline Geiger, her daughter, recalled with some angst that her mother was always attentive to details — she was an accounting professor at Providence College and in a discipline demanding attention to detail.
“How could this possibly happen?” Geiger asked. “She always was very healthy, exercised, followed good diets. And then this?”
“It had been growing for so long and no one detecting it? She followed all the health guidelines, she got mammograms. Afterwards, she then thought it was such a huge problem that so many other women would also be going through,” Geiger said.
Ann’s spirit of perseverance went into high gear, even though she also needed her energy to deal with her own grueling and debilitating treatments, both daughter and her father said.
“She would never take no, whether it was for this legislation, whether it was for her students, like fighting to get them into a certain class, or helping them get certain jobs or internships, or my brother and I, always helping to ensure we get into a good school,” Geiger said.
This difficult journey also spurred her, whether for the last time or potentially a very limited number of times remaining. It didn’t matter to Ann, there was a job to get done, they said.
“I think the turning point was when she Googled this and found that 13 other states had laws requiring doctors to inform women if they had dense breast tissue, but Rhode Island did not. Why not in all states, why not universal?” said Charlie Kelley.
“She did have a bit of a temper. I think she got mad. That this was allowed to happen not just to her, but to others,” added Kelley, who, like Ann, is an accountant by training. He is now the executive director of the Rhode Island Student Loan Authority.
Both met at the accounting firm Arthur Young right out of college — he from the University of Rhode Island and she from PC. They settled in South Kingstown — where he’s been a lifelong resident — and where their civic involvement took him to the town council and she to the school committee many years ago.
No strangers to long-run fights for change, the two geared up for difficult treatments and simultaneously changing the law so other women didn’t face the same hidden problem. They also had day jobs they continued as well, he said.
Sylvia Maxfield, dean of PC’s School of Business, illustrated how Ann balanced her commitments.
“The courage she showed in her campaign and advocacy for Rhode Island women was not a surprise to me because she had been every bit as tenacious in supporting her students at PC,” she said. “There are hundreds of PC alumni who remember her fondly for setting a high standard but stopping at nothing to help them exceed her expectations.”
“I also wasn’t surprised by her work on behalf of breast cancer awareness because Ann always called it like it was. When I first met her eight years ago, as the incoming dean of the School of Business at PC and her new boss, it was pretty clear she was going to hold me to a very high standard — actually, I wasn’t sure who was going to be boss in our relationship!,” she said.
“She became a good friend. I appreciated both her humor and her candor as she offered advice on things spiritual and professional,” Maxfield added.
The struggle for proposed legislation for notification would be focused on the legislature. State Rep. Joseph McNamara, chairman of the R.I. House of Representatives Committee on Health, Education and Welfare, would need to be a key supporter.
“Her advocacy was very, very articulate and persistent. If we could raise awareness of this issue and educate patients, we could save lives. Ann, without a doubt, was one of the most effective advocates about saving lives,” he said, adding that her hustle and consensus-building eclipsed the often multi-year timeframes for passing legislation into just one year.
“It takes a special person to have that kind of perseverance. There’s no doubt we have this legislation because of her. We are saving lives today because of her,” he said.
The notice is simple. The legislation required in part: “We are providing this information to raise your awareness of this important factor and to encourage you to discuss your dense breast tissue, as well as other breast cancer risk factors, with your health care provider. Together, you can decide which screening options are right for you.”
“Her focus in life was making sure that she made a difference,” Geiger said.
Ann Kelley would have agreed. In a 2014 story about her push for changing the law amid her treatments and job duties, she had an upbeat message in Providence College News.
“I vowed to myself I would not complain,” Ann Kelley told the interviewer. “I was thinking of the after-life. I tried to make other people laugh. I tried to have a good time. My mom was widowed twice and had a handicapped child. She always said that it’s not what happens to you that matters, it’s how you react.”