Local photographer believes H.B. 258 will save lives
Deb DeKoff, a language arts teacher at Ecker Hill Middle School and fine art photographer, is paying close attention to this year’s Utah Legislature session.
She is particularly interested in H.B. 258, which was sponsored by Rep. LaVar Christensen, R-Draper.
The bill, known as the Women’s Cancer Screening Notification Amendments, will update provisions of the Mammogram Quality Assurance Act that was signed into a law in 1991.
A key component of the bill is that doctors will be required to notify women about dense breast tissue, which makes it difficult for regular mammograms to detect cancer because they both show up in white on the mammogram.
DeKoff was never informed that she had dense breast tissue, and was diagnosed with cancer in August 2016.
“I had no indication that I had cancer,” she said. “I’m the one who eats right and works out at the gym, but cancer found me, even though I was doing everything right.”
Even after she learned she had cancer, DeKoff wasn’t informed she had dense breast tissue.
“I learned about dense breast tissue through a private page online,” she said. “A woman has posted about it and referred me to another website, areyoudense.org, and I learned I needed to be getting more than just mammograms.”
Areyoudense.org is the website of Are You Dense, Inc., an organization, founded by Nancy M. Cappello, that educates the public about dense breast tissue and its impact on missed and delayed diagnosis of breast cancer.
Cappello, who lives in Connecticut, founded Are You Dense, Inc., and its government relations arm, Are You Dense Advocacy, because she was diagnosed with late-stage breast cancer 14 years ago.
“I exercised daily and ate healthily and had no relatives who had breast cancer,” Cappello said. “I had my yearly mammograms and felt that if I was ever diagnosed with breast cancer that the mammograms would find it at its earliest stage.”
That was not the case.
A month after her 11th mammogram, which came back normal, Cappello’s gynecological doctor noticed a thickening in Cappello’s right breast.
“She sent me to get another mammogram, which also came back normal, but then sent me to get an ultrasound,” Cappello said. “Long story short. I was diagnosed with stage three C cancer. I had a tumor the size of a quarter that wasn’t detected in the mammogram.”
Doctors told Cappello the reason they missed the cancer was because of her dense breast tissue.
“I asked what that was and asked why I wasn’t informed about dense breast tissue,” Cappello said. “The doctors, all six of them, said they don’t tell women about it.”
Cappello, who has a Ph.D in education from the University of Connecticut and had dedicated her life to teaching and relaying information, was astounded.
“I was a teacher, school administrator and my career was at the Connecticut State Department of Education, and was never told that I had dense breast tissue,” she said. “They told me after they found cancer, which, in my eyes, was a little backwards, right?”
After her mastectomy, Cappello did more research and worked with the Connecticut State Legislature to mandate the communication of dense breast tissue to patients.
Connecticut governor Jodi Rell signed the bill into law in 2009.
“The ultimate tragedy is having dense breast tissue is common, and most women don’t know of its impact on the mammograms when they go in for their screenings,” she said.
Since then, 31 states have created laws that require doctors to inform women they have dense breast tissue, and Utah is one of eight states that have introduced bills that would require doctors to notify patients about dense breast tissue.
Cappello got the ball rolling in Utah after she met Senator Karen Mayne, who is now the minority whip, in 2011.
“She told me she wanted to do something in Utah, and we worked with her on a bill that required dense breast tissue information in the mammography report,” Cappello said. “There was some dissension, and the bill was changed to encourage women to know about their breast density.”The dissension came from doctors and physicians who didn’t appreciate a law that made them do something, Cappello said.
“You can’t make informed decisions if you don’t know about things like this.”
When DeKoff reached out to Cappello, she referred the Park City resident to Christensen, who was working on a dense breast tissue bill.
“I began learning over an extended period of time how real and how life threatening the situation of dense breast tissue is,” Christensen said. “What I’ve been emphasizing is that every woman needs to know, wants to know and has the right to know.”
The notification is consistent with the long-standing Mammography Quality Assurance Act that has been in Utah’s statutes since 1991 but hasn’t been updated, Christensen said.
“You will find in the working of the bill that it informs the woman who had the mammogram whether or not she has dense tissue, which wasn’t included in the original Mammography Quality Assurance Act,” he said.
This required disclosure and notification will give patients the information that there is a finding of dense tissue, what it is and what their additional cancer screening protection options might be, according to Christensen.
“Lastly, the disclosure and notification will inform and encourage the patients to discuss their situations with their health care providers and decide what path going forward is best for them, given their individual circumstances,” he said.
The bill has the support of Huntsman Cancer Institute and numerous top, respected doctors, Christensen said.
“We wanted it to be positive,” he said. “We didn’t want it to be discouraging or alarming, and we want to be respectful and appreciative to the medical professionals.”
The bill was introduced to the House Health and Human Services Committee on Monday and, after hearing testimonies from breast cancer survivors and family members of those lost to cancer, the committee gave it a favorable recommendation. The bill passed 39-31 in the Utah House of Representatives on Friday afternoon.
DeKoff said it surely wouldn’t hurt to have the statute in place, because it will still save lives, “I’m one of the fortunate ones because we did catch that itty, bitty bump. It was so tiny that it really wasn’t a lump,” said DeKoff, who went through 12 rounds of taxoll, radiation and a year of herceptin, which targeted fast-growing estrogen-driven cancer. “I kept thinking how fortunate I was. I can’t help but think that if I had just gone in for a mammogram and not really went in to look for something that it would have been overlooked.”
To read about DeKoff’s journey, visit her blog at skiparkcityutah.wixsite.com/1in8.
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