Are You Dense?—

Uncloaking Hidden Breast Cancers

By Nancy K. Crevier

Nancy Cappello has an urgent message for women that she believes is a matter of life and death.

A very fit fifty-something in 2003, Nancy Cappello of Woodbury exercised regularly, ate a healthy diet, went for her yearly checkups and mammograms, and felt fine. She did not fit a high-risk cancer profile that includes being over 65 years of age, having a first-degree family member with cancer, a previous history of cancer, or an inherited risk of breast cancer. Dense breast tissue is another red flag for being at high risk for breast cancer.

What Ms Cappello did not know at the time was that she has dense breast tissue, a condition shared by two-thirds of premenopausal females and a quarter of the postmenopausal female population.

By the time doctors diagnosed her breast cancer, two months after receiving a “normal” mammogram, her cancer was stage 3C, a late-stage diagnosis. Thirteen out of 18 lymph nodes were cancerous. A second mammogram ordered by her primary doctor also showed no signs of cancer. But an ultrasound, the same day, revealed a one-inch mass. When she asked her doctor why her recent mammogram had not detected the cancer, nor had any of her previous mammograms indicated a problem, she was told that it is difficult for mammograms to detect cancer in women with dense breast tissue. It was the first she had ever heard of an appellation for breast tissue. Having a PhD in education, her natural curiosity and instinct to research led her to seek out further information even as she recovered from a mastectomy, chemotherapy, and radiation.

Happy-Grams

“I couldn’t believe it. Even in 2004, there were studies that showed that supplementing mammograms with ultrasound greatly increased the detection of cancer in women with dense breast tissue,” said Ms Cappello. Dense breast tissue cloaks cancer on a mammogram, and women with dense breast tissue have a four to six times greater likelihood of getting breast cancer, she found.

She then requested reports of past mammograms when she found out that what she now calls the “happy-gram” most women receive from their doctor’s office following a mammogram does not contain all of the information provided by the radiologist report. All of the radiologist reports noted that she had dense breast tissue.

“Not that it probably would have meant anything to me at the time,” Ms Cappello said. “Who even knew that it indicated that a mammogram was not enough to detect cancer?”

What she learned propelled her to raise awareness among women about the importance of knowing if they have dense breast tissue or not, and the proper evaluation to head off a late-stage diagnosis of breast cancer. “This is why I formed Are You Dense, Inc,” she said. “Most women don’t even know what to ask after getting the results.

Are You Dense serves three main purposes, said Ms Cappello. “First, it is to inform the public about breast density and the limitations of mammograms to diagnose cancer for women with dense breast tissue. Second, it is to help women who have breast cancer to live with the disease, in ways that include spirituality, exercise, nutrition, and health. The third thing is to support research,” she said. She does so through the website areyoudense.com, speaking engagements, and her successful advocacy for legislation enacted in 2005 and 2006 that Connecticut insurance policies provide coverage for a comprehensive ultrasound screening of an entire breast if such screening is recommended by a physician or a mammogram determines that there is dense breast tissue.

Her commitment to promoting public awareness and the legislation of those laws has earned her a Citation by the Connecticut General Assembly, the 2007 Angel Award from the American Cancer Society, and a grant from the Falk Foundation for Excellence in 2008.

Despite her early successes, Ms Cappello is disappointed that legislation put forth this past year by herself, her husband Joe Cappello, and Senator Joseph Crisco, 17th district, to require communication of mammographic breast density information to patients was never brought to a vote. The amendment met the approval of insurance and public health, and passed in the Senate, but the House never voted on it. The new law would have required every mammogram report given to a patient after October 1, 2008, to include the notice: “If your mammogram demonstrates that you have dense breast tissue, your physician might recommend a breast ultrasound screening. A report of your mammography results have been sent to your physician’s office and you may want to contact your physician if you have any questions or concerns about this report.”

Lots Of Support, Some Opposition

Even though the legislation was supported by letters from the American Cancer Society, the Connecticut Hospital Association, the Tolland Medical Association, 56 letters from breast cancer survivors, Susan Komen Breast Cancer Foundation, radiologists, a signed petition from 200 people at her church, oral testimony at the hearing from Ms Cappello and her husband, and testimony from her sister-in-law about the difficulty of obtaining her radiology report, it was not enough to convince legislators of the importance of pushing through the bill. “They told me they just ran out of time,” said Ms Cappello.  

What did not help, she believes, was that the Radiological Society of Connecticut came out against this piece of legislation. Jean Wiegert, MD, on behalf of the Radiological Society of Connecticut, appeared before the Insurance and Real Estate Committee in February to oppose Bill 172, stating that the law would “infringe on our professional judgment,” and that the Radiological Society believed it was inappropriate for legislature to proscribe what is, or is not included, in patient reports.

The Radiological Society also believes that the statement proposed would have the effect to scare patients, leave the impression that the patient has a serious condition when that was not true, and cause false expectations for the accuracy of the test. The decision to consider ultrasound to detect cancer is a “decision that needs to be made by the physician after taking into consideration a multitude of factors such as the patient’s age, physical makeup, family or personal history with cancer, genetic testing and other issues,” Dr Wiegert’s statement said.

Ms Cappello pointed out, though, that in her case, those factors would not have caused her doctor to order an ultrasound in addition to the mammogram. “Why would it not be to my benefit to know that the kind of breast tissue I have may require further testing to rule out cancer?” she asked.

One doctor who issued a statement of support to the legislative committees considering the law is Dr Gary K. Griffin, president of Torrington Radiologists, PC.

Since 2005, his practice, Advanced Medical Imaging in Torrington, has included the breast density composition codes in all of its mammography reports, as well as a paragraph explaining the recommendation for follow-up breast ultrasound, in case the caregivers do not understand the significance of the categories. (Category 1 designates primarily fatty replaced breast tissue, Category 4 reflects tissue that is severely dense, with Categories 2 and 3 being mild to moderate density, respectively.

A “negative” mammogram in a Category 3 or 4 density pattern still carries a significant possibility that a cancer could be obscured, according to Dr Griffin’s statement. Further, to ensure that a patient is informed, Advanced Medical Imaging has modified the letter required by the Mammography Quality Standards Act that is sent to every patient to inform the patient if she/he has increased breast density, and that the imaging facility should be contacted should further information regarding the significance of the findings be necessary.

His letter of support continues, “Inclusion of information regarding a woman’s mammographic density pattern should be available in every mammographic report, along with a recommendation for follow-up screening breast ultrasound in women with Category 3 or 4 tissue. In addition, I support the continued utilization of screening breast ultrasound as an effective secondary examination for breast cancer detection for these women.”

Knowledge that dense breast tissue makes cancer detection by mammography difficult and that some forms of breast cancer are detectable only through ultrasound may have changed her interactions with her ob/gyn doctor, said another breast cancer survivor from Newtown, Marty LaMarche. As it is, she was diagnosed with stage 3B lobular breast cancer nine years ago, underwent a bilateral mastectomy, and had 14 lymph nodes removed.

“I had known for years that I had dense breast tissue, because of conversations with my doctor,” said Ms LaMarche, “but I did not know that it meant a mammogram was not as effective as an ultrasound. I really didn’t think about it.”

Combined with having dense breast tissue, she is not surprised, now, that mammograms did not ever detect the suspicious growth. Lobular breast cancer malignancy grows in a dissimilar pattern as, for instance, duct cell cancer, she explained, making it difficult for a mammogram to detect the slow growing cancer. Not knowing that a mammogram was not enough to detect certain breast cancers, she ignored intermittent odd symptoms and her instincts that warned something was amiss.

“What I regret is that I did not have enough knowledge, when I had complaints that the office staff passed off as ‘in the normal range,’ to insist on speaking with my doctor, and know to ask him, ‘How can I rule out that these symptoms are not cancer?’ I didn’t know that ultrasound was an option,” said Ms LaMarche.

A second mammogram after she identified the growth beneath her armpit did not show anything unusual until the technician magnified the spot she pointed out. A subsequent MRI showed nothing at all, but the ultrasound her doctor ordered revealed a mass that was “the size of a mashed tennis ball.”

Misinformation Can Be Frightening

Hindsight is always 20/20, Ms LaMarche pointed out, and she has learned a lot through her own experience with breast cancer. “I believe women need to know as much as possible. When you don’t have the right information, misinformation can be frightening. Women need to know everything about their breast health,” she emphasized.

Early detection of breast cancer is important, and she feels it is the responsibility of doctors to educate patients about issues that could adversely impact them, and about options that exist.

“If I had known what to ask and pushed for answers, my cancer might have been detected a lot earlier,” said Ms LaMarche.

Ms Cappello, with the assistance of Senator Crisco, will resubmit the legislation requiring the standard letter issued by the mammogram technician at a doctor’s office to include information about breast density and ultrasound screening again, in 2009. “I think women must be made aware of this issue. I don’t think even the medical community has a deep understanding of the issue of dense breast tissue. There is a void and that’s why I have to lend my voice. I am compelled to do this,” said Ms Cappello.

“I am a victim of late-stage cancer diagnosis, and there is no reason this has to happen to other women. I do as much speaking and informing women now as I can. I just want the word out on the best kept secret,” she said, and added, “I just wish I wasn’t the one who had to do this.”

For more information and support concerning dense breast tissue and breast cancers, visit the website areyoudense.com. Are You Dense is sponsoring a Walk-a-thon and Musicfest September 12, 2009, at Quassapaug Amusement Park in Middlebury. The musicfest will include contemporary, jazz, rock, and gospel music and begins at 1 pm. There will also be a silent auction tent. The price of the ticket covers entrance to the part, all-day ride pass, parking, food, and drink. Speakers will be featured throughout the day. Funds will go to raise awareness and to support further research on the early detection of cancer in women with dense breast tissue. More information is available at the areyoudense website.