Virginia Commonwealth University

Make it real.

Law Would Improve Breast Cancer Detection

February 6, 2012

By Leah Small
Capital News Service

RICHMOND – 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.

Cathryn Tatusko

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.

House Bill 83 is being sponsored by Delegate Robert Orrock, R-Thornburg, who chairs the House Health, Welfare and Institutions Committee. He filed the bill after hearing from Tatusko. The House unanimously approved HB 83; it is now before 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.

Now, 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.”

Mammogram of an extremely dense breast. (CNS photo by Leah Small)

The Politics and Science behind the Bill

Initially, the legislation required women to be told their breast density after having a mammogram and contained this language: If a woman had dense tissue, her radiologist had to send her a letter suggesting that “supplementary screening tests may be beneficial.”

Doctors had some concerns about that wording.

The Virginia Chapter of the American College of Radiology expressed those concerns to Delegate Robert Orrock, sponsor of House Bill 83. Dr. Sterling Ransone, president of the Medical Society of Virginia, told a House subcommittee that he also saw problems with HB 83 and the identical Senate Bill 544, submitted by Sen. John Edwards, D-Roanoke.

“MSV and the American College of Radiology-Virginia Chapter worked with the bill patrons about physicians’ concerns about bill language as originally introduced. MSV is appreciative of Delegate Orrock’s and Sen. Edwards’s openness to improving the bill to ensure that women receive the relevant information they need about their breast health,” according to the medical society’s website.

After input from the doctors, the bills now say that women must receive a letter informing them that they may have dense breasts and that dense tissue “can hide cancer or other abnormalities.” Instead of stating that additional tests may be necessary, the bill says women “should contact your physician if you have any questions or concerns about this report.”

Dr. Gilda Cardenosa, a fellow with the Virginia Chapter of the American College of Radiology, is satisfied with the legislation’s new language.

She feared that the initial wording, recommending additional tests such as an MRI or ultrasound, might backfire: Some women might think mammograms were unnecessary or ineffective in the first place – and might stop getting annual mammograms.

Cardenosa emphasized that women should have regular mammograms.

“Even if you get a letter saying your breasts are dense, please don’t give up on mammograms. There are some cancers that we can only see on a mammogram,” she said. “The mammogram is sort of an infrastructure on which we can build other things.”

There’s another concern in wording the “breast density inform” letters: Officials don’t want to raise unnecessary fear in women who may have dense breasts.

“The fine line we are trying to walk here is providing sufficient information to the patient but without the panic,” Orrock said.

Cardenosa also cautioned that determining breast density is subjective. Since the breasts of most women have a combination of both fatty and dense tissue, and all breasts are different, it can be hard to determine breast density. One radiologist looking at an X-ray could call the breast tissue dense; another looking at the same film could call it fatty.

“The problem as I see it from my perspective is that this is, in some ways, quite nuanced,” Cardenosa said.

Two companies, Volpara and Hologic, recently developed technology to calculate breast density and remove the subjectivity. Cardenosa has not seen a lot of peer-reviewed literature on the technology. “I would be surprised if it is being widely used,” she said.

Cardenosa also wants women to realize that, like mammograms, ultrasounds and MRIs aren’t infallible: These tests also can fail to detect some cancers.

Standardization and quality of technology and personnel are other issues.

Technologists performing the tests must be sure they cover the entire breast to get an accurate reading.

Also, the quality of breast ultrasound technology may vary more from facility to facility than that of mammography. This is because mammography is kept to strict standards that do not apply to breast ultrasound under the federal Mammography Quality Standards Act.

Cardenosa recommends an MRI only when a woman has a risk factor such as a previous experience with cancer, a family history of cancer or atypical physiological changes.

Nancy Cappello, the cancer survivor who established the Are You Dense advocacy group, said too many women are unaware of their breast density.

“I could not believe that there was information about my body and my health that was kept from me,” she said. “My doctor knew it, my radiologist knew it, but I did not know it.”

Online resources about breast density

Are You Dense [http://areyoudense.org/] is a nationwide campaign to inform the public about dense breast tissue and its significance for the early detection of breast cancer. (The group’s government relations arm is at http://areyoudenseadvocacy.org/.)

The National Cancer Institute has a fact sheet about mammograms and breast density [www.cancer.gov/cancertopics/factsheet/detection/mammograms].

You can follow the progress of House Bill 83 and Senate Bill 544 at Richmond Sunlight [www.richmondsunlight.com].

This package of stories was published by the news website GroundReport.com and other CNS clients.