In cancer testing, one size does not fit all

Liz Thomson noticed the lump only a few weeks after she was screened for breast cancer.

It turned out to be a tumor.

“I didn’t think I could have cancer,” says Thomson.

She was 41 years old and the mother of a young boy when diagnosed in 2001.

“I didn’t have any choice but to stick around,” she says.

Thomson survived with a hard regimen of chemotherapy.

But in recent years, the concerns of other survivors and some radiologists about the shortcomings of relying on a mammogram alone to screen for cancer in certain women have resonated with Thomson, who’s now a Democratic state representative from Albuquerque.

Some survivors in the last decade have pushed for greater awareness about how the density of breast tissue can make it harder to detect cancer using an X-ray, stirring conversations about whether additional screening might help some women find tumors sooner.

Thomson sponsored a bill this year that would have required health care providers to not only give patients a summary report from a mammogram, as required by federal policies, but also inform them about what the X-ray revealed about the density of their breast tissue.

House Bill 243 cleared the Legislature without opposition, but Gov. Susana Martinez pocket vetoed it. That stopped New Mexico from becoming the 33rd state to adopt what are known as breast density notification laws.

Thomson’s proposed legislation nonetheless brought the recent wave of advocacy to the Capitol, and it raised the question of whether patients have all the information they need to decide if they might need cancer screening beyond a mammogram.

“We used to just say that, if everyone came in and got their mammogram, that’s great,” said Dr. Monica Saini, a radiologist in Santa Fe who also works as a consultant for a medical device manufacturer. “It was a great ‘one size fits all.’ But ‘one size fits all’ does not work. Our population is so varied.”

Breasts with mostly fatty tissue are relatively easy to read for signs of cancer using mammography. But two of five women have dense breast tissue. Tumors and other abnormalities can be harder to detect in denser breasts with thick glandular and fibrous tissue.

“Mammograms in this situation are limited,” Saini said. “They’re still good. They’re still the gold standard. But when a woman has a dense breast, that’s when you want to consider supplemental screening.”

Only a mammogram can show the density of a breast’s tissue — it has nothing to do with its feel or outward appearance. Under Thomson’s bill, the usual report a patient receives after a mammogram would also include details about her breast density. If the patient has what is known as heterogeneously dense or extremely dense breast tissue, she would receive a specific notice suggesting she talk with her health care provider about additional screening.

“We want women to be in the driver’s seat,” says Nancy Cappello, who began advocating for similar policies around the country after she was diagnosed with breast cancer 13 years ago.

Most states, a total of 32, have approved notification laws regarding breast density. Cappello’s home state of Connecticut became the first to adopt such a law in 2009.

Some states do not specify language for the messages from health care providers to patients. Other states require informing all women who receive a mammogram of their breast density. Still others only require messages for those who have dense or extremely dense breast tissue.

Saini points out that many radiologists are already sharing information about breast density with their patients. But, she says, a statewide policy would create a standard from cities to rural communities.

“A lot of the big radiology groups were already trying to address this by sending notification letters to patients. In smaller towns, they didn’t have the same resources. We weren’t all doing this,” Saini said.

“There’s not really any new data to guide doctors about what to do,” says Dr. Jennifer Haas, a professor of medicine at Harvard Medical School who co-authored a 2015 article in the Journal of the American Medical Association raising concerns about notification laws.

Haas says that while the laws have well-intentioned goals, there is little data showing that these policies actually improve the understanding of breast cancer or patient outcomes. Notification policies can instead leave women with an incomplete understanding of their risk of developing breast cancer by emphasizing one risk factor over others, she says.

A study in 2015 by doctors at Massachusetts General Hospital suggested that dense breast tissue should be considered as just one factor when mulling other tests. A woman with dense breast tissue but otherwise low risk of breast cancer does not require other screening on a routine basis, according to that study.

And researchers have raised questions about whether the notifications now mandated in many states are too difficult for patients to understand, causing confusion and fear.

“What’s still needed are better tools to explain what this means,” Haas says.

Otherwise, she adds, there is a risk of women pursuing tests they do not need.

Thomson, though, says she will propose her bill again. Like Cappello, she views it as straightforward: “It’s just a matter of allowing women to have more information.”

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