Bills Intended to Improve Breast Cancer Detection

RICHMOND (Capital News Service)—Cathryn Tatusko’s yearly mammograms missed her cancer, which soon developed into stage three. Tatusko’s dense breast tissue had masked the large tumor on the yearly mammogram she had just five months before being diagnosed. Even a mammogram she received the day of her diagnosis failed to show the advanced-stage cancer.

“I still so vividly recall the numbing fear I felt as I left my home one morning during that diagnosis week from hell, headed to the radiology facility. [I was] determined to pick up my old mammogram films to take as proof to the breast surgeon … that I could not possibly have breast cancer because the last films had been so recent,” said Tatusko, a 56-year-old nurse who lives in Fairfax County with her husband Wayne.

Such missed diagnoses are not uncommon. Here’s why:

A woman’s breasts are composed of fatty tissue and dense tissue. Most women have a combination of the two; some women have very dense tissue. Dense tissue can be a problem, because on a mammogram, both dense tissue and cancer look white. On the other hand, cancer is more apparent in fatty breasts, which appear gray on a mammogram.

Cancers are more easily found in dense breasts through magnetic resonance imaging, known as an MRI, or through breast ultrasound. However, 95 percent of women do not know their breast density—so if they have dense breasts, they do not get additional testing.

That soon could change. It would be routine for women in Virginia to learn their breast density whenever they get a mammogram under legislation moving through the General Assembly.

Two bills would require radiologists to notify patients by letter that they may have dense breast tissue and that it can mask cancer. The letter also would urge women to talk to their physicians about the matter.

Del. Robert Orrock (R-Thornburg), who chairs the House Health, Welfare and Institutions Committee, introduced House Bill 83 after hearing from Tatusko. The House unanimously approved HB 83; it is now in the Senate.

Last week, the Senate unanimously passed an identical measure—Senate Bill 544, proposed by Sen. John Edwards, D-Roanoke.

Under both HB 83 and SB 544, after performing a mammogram, the radiologist would send the patient a letter with information about her breast density. For women who have dense breasts, the letter would say:

“Your mammogram demonstrates that you may have dense breast tissue, which can hide cancer or other abnormalities. A report of your mammography results, which contains information about your breast density, has been sent to your referring physician’s office, and you should contact your physician if you have any questions or concerns about this report.”

That’s a big change from the current practice: following a woman’s mammogram, the radiologist sends a detailed report to her referring physician. It includes a classification of breast density. At the bottom, the report contains a disclaimer noting that dense breast tissue can render mammograms “less sensitive.”

The report is not sent to the patient herself. Instead, she receives a “lay letter,” written without medical jargon. The lay letter never mentions breast density; it simply states whether the mammogram detected cancer. A woman can obtain the radiologist’s more-technical report upon request, but most don’t ask. And many doctors do not discuss a patient’s breast density with her.

Consequently, according to a national survey, 95 percent of women do not know their breast density even though it’s a big reason why cancer often goes undetected, and it’s associated with higher cancer risk.

Physicians disagree over how much higher. Many studies say women with dense breasts are four to six times more likely than other women to develop cancer. This is especially true of peri- or post-menopausal women whose densities do not shift to the fatty composition more common in older women. In young women, breast density does not become a concern unless it is combined with such factors as family and personal cancer history.

Unlike many women, Tatusko knew she had dense breasts. But she did not know the extent to which dense tissue can hide cancer on a mammogram: According to many studies, this happens more than 40 percent of the time, depending on the degree of breast density.

Nor did Tatusko know that dense tissue is a risk factor for developing cancer.

“Learning these things after being diagnosed left me feeling both beaten and outraged,” she testified before a legislative subcommittee considering Orrock’s bill. Tatusko, who lives in Annandale, is now cancer-free after two years of aggressive treatment following her diagnosis in 2009.

On the Internet in search of answers about her missed diagnosis, Tatusko found Nancy Cappello, another woman who was in the dark about breast density until her own experience with cancer.

From her home in Connecticut, Cappello began a national movement, aptly called Are You Dense, to push for legislation to inform women about their breast density. Women from across the country have contacted her to start “breast density inform” efforts in their states.

“We’re a density dating service,” Cappello said.

Connecticut passed a “breast density inform” law in 2009, and Texas followed last year. Besides Virginia, nine other states are considering such legislation.

Cappello said breast density inform laws are generally a first step. She said it’s also important to pass legislation requiring insurance companies to cover MRIs or breast sonograms for women who have learned they have dense breasts.

Connecticut passed such a law in 2005 and expanded coverage in 2011. Illinois passed insurance legislation in 2008.

The legislation before the Virginia General Assembly addresses breast density information – not the insurance issue. Would legislators support a bill requiring private insurers to cover additional screening? Orrock said he would have to see it first.

“All my objective is, is to make sure that knowledge is provided to the patient, and not getting into the ramifications of [insurance coverage],” Orrock said in an interview.

“Just like in any other area of cancer, circumstances may not cover the testing. But then, without having the knowledge that ‘I want additional testing,’ it’s a moot point anyway.”

[Capital News Service is an entity of Virginia Commonwealth University.]