Santa Cruz Good Times

Sunday
Apr 26th
Text size
  • Increase font size
  • Default font size
  • Decrease font size

A Dense Discussion

news2_senator_simitianSurvivor stories Breast cancer survivor and founder of Are You Dense? Nancy Cappello, speaks in Sacramento in support of SB 791, a breast cancer detection bill authored by Simitian that was vetoed in October.Advocates continue to fight for the cause behind California’s vetoed breast cancer detection bill

Nancy Cappello never imagined that she’d one day spend her time talking to strangers about her breasts. She also never expected to get breast cancer—she was a dutiful recipient of annual mammograms that routinely came back “normal,” after all—but somehow that happened, too.

In November 2003, Cappello once again received normal mammogram results that included “no significant findings.” But less than three months later—thanks to her gynecologist, who felt the lump during a standard annual exam—Cappello was diagnosed with stage three breast cancer. The cancer had traveled outside of her breast to her lymph nodes, 18 of which were removed and 13 of which contained cancer. Just a matter of weeks after her uneventful mammogram, she underwent six surgeries, eight chemotherapy treatments, and 24 radiation treatments.

When she inquired as to why her late-stage cancer hadn’t been detected earlier, Cappello was informed that she has dense breast tissue, and that dense tissue can obscure findings. Both cancer and dense tissue show up as white areas on mammograms, however this information is rarely shared with patients.

“I was outraged that no one had ever told me that I had dense tissue,” Cappello says. “That’s when I pledged that I was going to do something about this for other women.”

Throughout her cancer treatments that summer, Cappello fought for legislation in her home state of Connecticut that would fix this disconnect. In the process, she founded a 501c3 nonprofit called Are You Dense? that raises awareness about dense breast tissue and promotes early detection. The group was eventually successful at getting two first-of-their-kind laws passed in Connecticut: a breast density insurance bill in 2005, which required that other breast cancer detection screening methods be covered by insurance, and a breast density notice bill in 2009 that requires mammogram results to state whether a patient has dense tissue.

news2_nohairNancy CappelloAre You Dense? was an active proponent of California’s breast density bill, SB 791, which was authored by Sen. Joe Simitian and presented to the legislature over the summer. Although it received broad bi-partisan support and passed the state senate with only one naysayer and the assembly 66 to six, Gov. Jerry Brown vetoed the bill on Sunday, Oct. 9. The decision came as he rushed to get through hundreds of bills leftover from the recently ended legislative session by his midnight, Oct. 9 deadline.

SB 791 came to be thanks to a Santa Cruz County woman named Amy Colton, whose own story closely resembles Cappello’s. Despite years of routine mammograms and “normal” results, Colton was only informed of her density after she completed treatments for breast cancer. The Soquel resident and registered nurse submitted the breast density inform bill in Simitian’s annual “There Oughta Be a Law” contest.

Colton and Cappello’s experience is not unique: According to the American College of Radiology Imaging Network (ACRIN), 40 percent of women receiving mammograms have dense breast tissue and these women are five times more likely to develop breast cancer. Yet, a January 2011 Mayo Clinic study found that 75 percent of cancer is missed in women with dense tissue through mammograms alone. The primary cause of “false-negative results” in mammograms is high breast density, according to the National Cancer Institute.

Under current federal law, radiologists must note a patient’s breast density when reporting mammogram results to the referring physician. The law also requires radiologists to send patients a letter with their mammogram results—but this letter does not include information regarding breast density, or that the presence of dense tissue could render the mammogram inconclusive.

“It has been recognized since the beginning of mammography that dense breast tissue can obscure breast cancers, making them difficult to diagnose,” says Kenneth Averill, medical director of Dominican Breast Center in Santa Cruz. “[However], it should be noted that even in patients with extremely dense tissue, mammography has value in detecting early cancer.” Dominican Breast Center conducts around 13,000 mammograms a year, 93 to 95 percent of which return “normal” results.

The veto came as a big disappointment to Simitian, whose district includes Santa Cruz. “I’ve been in the legislature for more than a decade now, and I’ve gotten vetoes before, but this one was a heartbreaker,” Simitian tells GT. “This bill was a life saver. It’s an opportunity lost.”

Gov. Brown cited the wording as cause for his rejection, siding with major physicians groups who opposed the bill because it could “cause panic” among women with dense breasts. In his Oct. 9 veto message, the governor wrote that, while he supports everyone’s right to information about their own health, he “struggled over the words. Were they a path to greater knowledge or unnecessary anxiety?”

Simitian recalls hearing the anxiety argument made by the California Medical Association during hearings and debates, and feels it is “at best patronizing.”

“Our opposition acknowledged that yes, the risk is higher for women with dense breast tissue. Yes, they aren’t as well served by mammograms. And yet we continued to get the argument that somehow patients couldn’t handle the truth,” he says.

Colton, who declined an interview with GT, promptly sent a public letter to Gov. Brown in response to his veto. “In your veto message, you cite the ‘unnecessary anxiety’ that breast density notification would cause,” she writes. “I ask you for a moment to consider the ‘anxiety’ of a late stage cancer diagnosis. As if that isn’t devastating enough, imagine learning that your cancer might very well have been detected at an earlier stage had you received notice that you have a condition that masks breast cancer. There is no comparison between the speculated ‘anxiety’ that breast density notification would cause and the ‘anxiety’ of a late stage cancer diagnosis.”

But despite its failure to pass, the bill did succeed at raising awareness about breast density. Averill, of Dominican Breast Center, has seen increased interest about density among Santa Cruz women. “From a local perspective, the new level of awareness of this issue brought about by Amy Colton's efforts has lead to numerous patients inquiring about their own density pattern and so far these have been addressed on an individual basis,” he says.

The fight to legislate this is not over, either—Simitian says to expect another bill next year. Proponents are open to negotiating the wording, he says, but only to an extent. “I’m not interested in some boiler-plate language that gets buried in the bottom of a form that doesn’t communicate meaningful information to a patient, but if we can find something that satisfies the governor and still communicates crisply and clearly to patients, then I’m open to some wording that would do that,” the senator says. “We will keep trying.”

Similar legislation is springing up across the country: breast density inform bills will be introduced in a half dozen states in 2012, and the federal Breast Density and Mammography Reporting Act (HR 3102) was introduced on Oct. 5., thanks to the efforts of Are You Dense?

“We don’t want a woman’s zip code to determine her access to this information,” Cappello says of the federal bill. “If a woman in Connecticut has a mammogram this week, she’ll hear about her density. But the women in California are depending on luck—the luck of having a good doctor who will talk to her about it.” Ninety-five percent of women don’t know their breast tissue density, and less than one in 10 doctors inform their patients of such information, according to a May 2010 survey conducted by Harris Interactive.

In the meantime, in addition to the usual letter they receive, Cappello suggests that California women request a copy of the report radiologists generate for their doctor. “When I ended up asking for my report, I had a decade of reports that said ‘patient has extremely dense tissue,’” Cappello says. If a woman’s report does indicate dense tissue, she recommends discussing risk factors and screening options with one’s physician.

For Simitian, it’s only a matter of time before California gets on board. “I believe a decade from now we will … look back and say ‘can you believe there ever was a time when women were denied this information?’” he says. “But every day longer we have to wait to make this information available to the patient is a day patients are put at risk unnecessarily.”


Photo captions: 1. Survivor stories Breast cancer survivor and founder of Are You Dense? Nancy Cappello, speaks in Sacramento in support of SB 791, a breast cancer detection bill authored by Simitian that was vetoed in October. 2. Nancy Cappello Photos: Are You Dense
Comments (3)Add Comment
...
written by Bez Maxwell, October 24, 2011
Just e mailed Letter to the Editor:
I'm not just outraged that Gov. Brown vetoed the Breast Density Bill a few weekends ago, a bill would inform women patients about the density of their breast tissue and the therefore accuracy of mammograms, as outlined in your article "A Dense Discussion". It's his reason why that really infuriates me.

The bill sought to inform women patients about the density of their breast tissue and therefore the accuracy of their mammograms--dense tissue=harder to read mammograms, as outlined in your article, "A Dense Discussion". If this bill hadn't been aimed at only women, it would have passed hands down. Think about it--if almost half the men in the country had a normal prostate condition that made regular detection of prostate cancer inaccurate, there is no way that a bill aimed at informing these men about this condition and helping them get further testing would be vetoed due to fears of "panic" and "unnecessary anxiety". Give me a break! As if we women aren't capable of understanding the concept of increased risk and can't handle making decisions about our own care without falling into hysterics. That's a pathetic excuse for axing a bill that would save those same women's lives.

To the Governor's credit, this latent sexism is so pervasive and unconscious that he probably had no idea that prejudiced thinking informed his decision.
...
written by Beverly Lovelace, October 22, 2011
It seems a violation of informed consent not to reveal this critical information to women. It is known, it is reported to the doctor, and yet we do not receive it. Wrong wrong wrong.

I too had faithful mammograms for over a decade. I had a "clear" mammogram in May and was diagnosed with a huge 6.7cm tumor in July of the same year - because I had dense breast tissue.

This "anxiety" excuse makes me want to spit. Women with dense tissue SHOULD be anxious! Mammograms are inadequate!!
...
written by Marci Goorabian, October 19, 2011
As a stage IIIB breast cancer survivor I am so angry that the medical profession has lead women to believe that the "all clear" letter they receive after a yearly mammogram is lacking vital information regarding breast density. 90% of women have never been told by thier doctors that they have dense breast tissue that can mask a tumor on a mammogram.
An early stage diagnosis results in less invasive treatment, less medical costs and a much higher rate of survival. ALL women should be provided their breast density information.
Remember doctors you took an oath, DO NO HARM.

Write comment
smaller | bigger

busy
 

Share this on your social networks

Bookmark and Share

Share this

Bookmark and Share

 

We Can Rebuild You

A look back at how downtown Santa Cruz recovered from the 1989 earthquake

 

International Earth Day—Mother Earth Day

Every April 22, humanity celebrates International Mother Earth Day and Earth Day. As more than a billion people participate in Earth Day activities every year, Earth Day has become the world’s largest civic observance. The massive concern to build right relations between humanity and the living being we call Earth is evidence of humanity’s love of the Mother. In 2009, the United Nations General Assembly proclaimed April 22 International Mother Earth Day, with a significant resolution affirming “the interdependence existing among human beings, other living species (the kingdoms—mineral, plant, animal and human) and the planet itself, the Earth which we all inhabit.” The Earth is our home. Celebrating Earth Day helps us define new emerging processes (economic, social, political) focused on the well-being of the kingdoms. Through these, humanity seeks to raise the quality of life, foster equality and begin to establish right relations with the Earth. We dedicate ourselves to bringing forth balance and a relationship of harmony with all of nature. Learn about planting a billion trees (the Canopy Project); participate in 1.5 billion acts of green. Disassociation (toward Earth) is no longer viable. We lose our connection to life itself. Participation is viable—an anchor, refuge and service for all of life on Earth. Visit earthday.org; harmonywithnatureun.org; and un.org/en/events/motherearthday for more information. From Farmers Almanac, “On Earth Day, enjoy the tonic of fresh air, contact with the soil, companionship with nature! Go barefooted. Walk through woods, find wildflowers and green moss. Remain outside, no matter the weather!” Nature, Earth’s most balanced kingdom, heals us. The New Group of World Servers is preparing for the May 3 Wesak Buddha Taurus solar festival. We prepare through asking for and offering forgiveness. Forgiveness purifies and like nature, heals.

 

The New Tech Nexus

Community leaders in science and technology unite to form web-based networking program

 

Mission Critical

How reading Lisa Jensen’s reviews taught me to love film
Sign up for Good Times weekly newsletter
Get the latest news, events

RSS Feed Burner

 Subscribe in a reader

Latest Comments

 

Oral Fixations

Blown away by a Tuesday night dinner at Oswald

 

What would you like to see a TED talk about?

Hydrogen-gas cars that are coming this summer. Scott Oliver, Santa Cruz, Professor

 

Sarah’s Vineyard

Sarah’s Vineyard of Gilroy is known for crafting fine wines—and one of my all-time favorites is its Chardonnay. But this time, its Viognier has my vote.

 

Munch

East Coast meets West Coast in new meat lover’s paradise