“It is a relief knowing I didn’t go through everything for nothing. I have made a difference in this world. If I was to go, I would know I am leaving having given something to this world other than my children.”
This past year, Ann Galligan Kelley battled not only invasive stage 3B breast cancer, but also fought to get new legislation for Rhode Island. She has won in both cases. Last month, she finished her radiation therapy and the General Assembly approved legislation she drafted this year.
Kelley, a self-titled health nut, was more than surprised to find out last year that she had breast cancer.
“I exercise, I eat organic foods, I had no history of breast cancer in my family,” she said. “It was like waking up and realizing I was on Mars.”
Despite regular mammograms and OB/GYN appointments, Kelley’s cancer went undetected. She has a condition know as “dense breasts.” This means that tumors can go unseen during a mammogram. Because dense breasts are made up of connective glandular tissue rather than fatty tissue, the breasts show up the same white as tumors on a mammogram, thus tumors may be hidden. Dense breasts require a full breast ultrasound to detect any abnormalities.
Kelley’s regular OB/GYN never disclosed that women with dense breast might need different screenings to detect tumors. Rather, when Kelley first brought up her concerns about a lump on her breasts and a mammogram was “clear,” the doctor wrote off Kelley’s worries.
“She laughed. She literally laughed. She joked that I had dense breasts and it was normal. I just had lumpy breasts. She laughed when there was a real concern. I had been going to her for years and she never told me dense breasts could hide a tumor. Looking back, I can see just how negligent that was,” Kelley said.
Once Kelley received her diagnosis, she invested herself into hours upon hours of research. She found Connecticut approved legislation in 2009 that requires doctors to notify women if they have the condition and let them know that other pathways of screening may be necessary.
Kelley said, “What is wrong with Rhode Island that we haven’t done anything about this? Why haven’t we worked to change legislation?”
Speaking with other patients who had also been victims of late detection because of dense breasts, Kelley found that women were too tired from chemo or were in the middle of a malpractice lawsuit with their doctors. Kelley vowed to do something about it.
“I decided right then and there that no matter how tired I was, no matter how bad chemo was, I was going to get this legislation passed,” Kelley said. “No one was going to die from lack of knowledge again. No one was ever going to go through what I and so many other women had to. Every woman has the right to early detection, and I was going to try and secure that.”
She began drafting legislation with the help of her husband, Charles Kelley, and Representative Joseph McNamara, Senator James Doyle and Dr. Nancy Cappello, who runs the “Are you Dense?” website for women with dense breasts.
Cappello had warned Kelley that passing this type of legislation would be difficult because doctors and radiologists often speak out against it. Many radiologists do not know how to perform full breast ultrasounds and require extra training were the bill to be passed.
Kelley had four radiologists from Yale and well as legislators from Connecticut testify and send letters of support. There was a learning curve for doctors, but they all noted that women are being alerted of breast cancer earlier and it is saving lives throughout their state.
“I have no negative experiences at the State House. I am sure four Yale radiologists helped, but I was told it was going to be much more difficult than it was. The legislators were very supportive. Everyone had been personally touched by cancer at some point.”
The legislation had tried to establish that ultrasound costs for women with dense breasts would be covered by insurance or the state. Unfortunately, that part of the bill was not passed, but Kelley assured she would be working on another bill for the next session. Seventeen states have legislation to notify patients, but only Connecticut, because they passed the law before the Affordable Care Act was put in place, has legislation that requires insurance to cover the ultrasounds. A full breast ultrasound costs about $130.
Kelley said, “For all the things we spend money on, what is $130 for an ultrasound. It could save you thousands upon thousands of dollars that you would have to pay for surgeries and chemo and medication. It could be $130 to save your life.”
Kelley worked on this legislation despite undergoing chemo, radiation and a surgery. She took medical leave from lecturing at Providence College, but she continued to be an advisor for students, meeting them at night and sometimes at her house.
Governor Lincoln Chafee, who will be signing the legislation this Tuesday, said, “By enacting this legislation, Rhode Island takes a more proactive role in the early detection of breast cancer. Making this information available will exponentially raise awareness of the danger of dense breast tissue.”
There will be a ceremonial signing today at the State House at 2 p.m. today to help raise awareness on the issue.