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SALT LAKE CITY — Ever since her sister's life was cut short by breast cancer in 2008, Cathie Skene has been on the lookout for the disease in herself, vowing to ward it off early if it were to strike.
So when Skene began to suspect she may have a cancerous mass late last year after she could feel something abnormal, she insisted on being tested with an ultrasound even after a mammogram result indicated she was in the clear.
"The mammogram said, 'You have dense breast tissue, but you're fine. … Just come back next year for your screening,'" Skene said. "So I had to kind of fight with my doctors. I had to go to two different doctors to get an ultrasound."
That instinct, it turns out, served her well. On Nov. 6, 2017, Skene's mammogram indicated she was cancer-free. By Dec. 11, following an ultrasound and biopsy, she was formally diagnosed with breast cancer.
"Had I not persisted, I'd probably be about a year down the road, and I'd probably be a lot worse off than I am now," the Draper woman said. "How many people do that? Would I have done that if i hadn't (had) a personal experience with a loss from breast cancer? Probably not."
On Jan. 9, Skene underwent a mastectomy. Though still recovering from the surgery, she was at the Capitol on Monday to testify to legislators about the importance of thoroughly informing women who have dense breast tissue about the limitations of being diagnosed with a mammogram and the potential usefulness of adding other screening methods to their detection efforts.
"I had dense breast tissue, but I never had a provider tell me that. Even when I went for additional screening, they never talked to me about that," Skene told the House Health and Human Services Committee.
Skene was speaking to the committee in favor of HB258, a bill that would formally require health care providers giving mammogram screenings to include a statement in the results about the procedure's shortcomings in finding cancer in women who have dense breast tissue.
"Dense breast tissue can make it more difficult to fully and accurately evaluate your mammogram and detect early signs of possible cancer in the breast. You might benefit from additional professionally recognized forms of cancer screening examinations, depending on your personal risk factors and family history," the required statement would say, in part.
"This information is being provided to inform and encourage you to discuss your dense breast tissue and other breast cancer risk factors with your physician or health care provider. Together, you can decide which screening options are best and most effective for you."
Rep. LaVar Christensen, R-Draper, the sponsor of HB258, told the committee that the bill requiring the statement is "so simple, yet it's a huge benefit that we're missing right now."
Christensen lamented the cases of all prior Utah patients who have ever been diagnosed with late-stage breast cancers "that could have been … detected and addressed earlier if they had simply known."
The bill was favorably recommended out of the committee by a unanimous vote.
Among those in attendance to support the bill was another Draper breast cancer survivor, Colette Moser, who told the Deseret News that the bill "will save lives."
"It'll inform women," Moser said. "It's just vital for women to know."
She added, "I did have dense tissue, but I didn't realize it until after my diagnosis" in 2011.
"Here I was going in year after year, thinking I was doing the good thing," Moser said. "I didn't know dense tissue made (detection) difficult."
Several other breast cancer survivors, a few of them tearful, also testified to the committee in favor of HB258.
"We hold these stories in our hearts, and we pray we don't have to bury a daughter, a granddaughter, a niece, just because they weren't informed," said Deborah Dekoff, of Park City, who was diagnosed with breast cancer in 2016. "If knowledge is power, let Utah women become powerful with the knowledge that can save their lives."
Darla Stevenson, a stage 4 breast cancer survivor from Provo, said her not knowing that her dense breast tissue was a screening issue "could have cost me my life.
"It has cost others theirs," Stevenson said.
Skene said it's alarming to her that others in her situation, not as worried about their cancer because they hadn't been personally touched by it, may have died simply out of not knowing that their dense breast tissue made it less likely that their mammograms would be accurate.
"I was very fortunate that I caught my cancer when I did," she said, noting that others may not be as lucky. "Thankfully it hadn't spread very far, and it hadn't spread to my lymph nodes. … I'll probably be able to avoid chemotherapy."
Skene and Moser added that while their past routine mammography results had a footnote saying they have dense breast tissue, there was no explanation as to why that presented a special risk to them or what to do about it.
"It still didn't talk about additional screening," Skene said.
Dr. Matthew Stein, a longtime radiologist working for the Huntsman Cancer Institute, relayed the institute's support of HB258 in remarks shared with the committee, saying "it's almost impossible to argue against sharing important information with our patients."
"The fact of the matter is, it's a voluntary thing throughout the state," Stein said of notifying patients about their dense tissue and their other screening options. "You may get a mixed bag."
Though all voted to favorably recommend the bill, some committee members expressed concerns over its enforceability — and whether there is enough in place to reasonably provide legal cover to providers as they certify that they have informed dense breast patients about their options.
"Invariably, among the thousands of these, you're doing to have a woman who doesn't get the letter," said Rep. Edward Redd, R-Logan. "Then she's going to allege you didn't send it."
Citing weaknesses in the mammogram test leading to both too many false negative results and false positive results, Intermountain Healthcare announced in October that they were beginning a yearslong study that would investigate whether they could develop a blood test to improve early discovery of breast cancer by looking for DNA markers linked to the disease.
The Centers for Disease Control and Prevention has reported that nearly 237,000 women were diagnosed with breast cancer in the United States in 2014 — the latest year for which those statistics are available.
