Speaking Out for Women with Dense Breast Tissue

The fate of early breast cancer detection in California may hinge on two sentences currently being negotiated at the state’s capital.

The sentences are at the crux of Senate Bill 1538, introduced by Sen. Joe Simitian (D-Palo Alto) on March 27. The bill would require mammogram providers to add information about patients’ breast tissue density to the result letters that are mailed out. Radiologists currently are required to note a patient’s breast density and include that information on the mammogram result letters sent to the patient’s physician, but not to the patients themselves. Here are the two sentences that patients with dense breasts would be required to receive:

Because your mammogram demonstrates that you have dense breast tissue, which could hide small abnormalities, you might benefit from supplementary screening tests, depending on your individual risk factors. A report of your mammography results, which contains information about your breast density, has been sent to your physician’s office and you should contact your physician if you have any questions or concerns about this notice.

Advocates of California’s bill–and similar bills across the country–say that giving this information to patients could be lifesaving. Dense breast tissue is both a risk factor for cancer and a factor in cancer being missed during mammograms: Forty percent of women who receive mammograms have dense tissue, according to the Radiology Imaging Network, and these women are five times more likely to develop breast cancer. However, mammograms are largely ineffective at detecting cancer in dense breasts because both dense tissue and cancer growths appear as white areas. Other types of screenings, such as ultrasounds, are more effective at finding cancer in dense breasts.

Santa Cruz nurse and breast cancer survivor Amy Colton, who lives in Sen. Simitian’s district, came to him with the idea for the bill. Colton was not informed of her dense breast tissue until after she was diagnosed with advanced stage breast cancer. Said Colton,

The radiologist who interpreted my results every year and the primary physician who received those results both did know, and even though they knew that this high density was a significant obstacle in the mammogram’s ability to find cancer, the only one who didn’t know this information was me. I was provided with this false sense of security by being told my mammograms were normal.

In actuality, Colton had three invasive tumors that doctors said had most likely been there for seven years–the same number of years she’d be receiving “normal” mammogram results. Sixteen rounds of chemotherapy, five surgeries and six weeks of daily radiation later, Colton emerged intent on making sure other women didn’t find themselves in the same situation:

I believe this is a grave injustice for any woman to find out she has dense tissue after she’s been diagnosed with breast cancer. The time for women to know this information is now.

Sen. Simitian brought forth a similar bill last year, which passed the state assembly and senate with broad bipartisan support, but Gov. Jerry Brown vetoed it. In his veto message, the governor cited a concern echoed by the opposition–which included the California Medical Association–that the required language could cause women “unnecessary anxiety.”

But diagnostic radiologist Judy Dean, M.D., has been sharing breast density information with her patients in Santa Barbara, Calif., since 2005, and said that she has never experienced a problem with it causing her patients to panic. “They are not unduly anxious by getting this notice,” she said. To the contrary, “Just in my small practice, I have over 30 women whose early invasive cancers were detected because they were notified of their dense tissue.”

Similar results have been seen on a larger scale in Connecticut, which passed the country’s first breast density inform law in 2009, and are corroborated by the European Journal of Radiology, which reported that detection rates double in women who seek ultrasounds following a mammogram. Sen. Simitian is hopeful that this data will help sway Gov. Brown: “It is indisputable evidence of the effectiveness of this information.”

While Sen. Simitian said he is open to “finding common ground” on the language of the two-sentence notice to mammogram patients, he refuses to compromise the efficacy of the wording: “I’m not interested in a piece of language that doesn’t fully inform the patient and help them make informed judgments about their own health care.”

California’s movement to get this valuable health information into the hands of women patients is part of a larger national trend. Following the passage of Connecticut’s law, Texas and Virginia have also enacted breast density inform bills, and similar legislation is pending in several other states. A federal bill that would require radiologists to inform mammogram recipients if they have dense tissue was introduced in fall 2011.

Photos of Amy Colton (Top Right) and Sen. Joe Simitian (Bottom Right) courtesy of the senator’s office.

Comments

  1. Kathleen Vogel says:

    But insurance companies will not cover additional tests.

    • If a woman is recognized as having dense breasts, wouldn’t it be logical to do only the ultrasound from that point forward (no mammogram), since the mammogram is not likely to locate cancerous tissue? I have no medical training/education; this just makes sense to me.

      • It’s a good question, and I don’t have a definitive answer, but women’s breasts generally get less dense as they age, so a mammogram may be more effective for a woman as she ages. Also, a mammogram can detect cancerous calcifications that a sonogram can miss.

        But also it really boils down to a lack of research on the sonogram alone as a primary breast screening tool (as opposed to a supplementary screening tool). For now, we know that sonogram as supplementary screening tool to mammogram for women with dense breasts doubles detection; we don’t have data for sonogram alone. But it is a fair question.

  2. Robin Belkin says:

    Amy Colton should be applauded for taking action and initiating this important bill in the aftermath of her grueling battle with breast cancer. On the contrary, shame on Governor Brown for vetoing this bill after it passed with overwhelming bipartisan support!

    I am appalled at the Governor’s alleged “concern echoed by the opposition–which included the CMA–that the required language could cause women ‘unnecessary anxiety.’” You know what truly causes “unnecessary anxiety?–Infantilizing women, and allowing the vast numbers of women with dense breast tissue (40%!) to suffer or die from advanced cancer because they were not informed that they had dense breasts! I am alarmed that 40% of women receive mammograms that can’t detect cancer in their dense tissue until it’s too late, while their doctors know it all along but intentionally withhold this critical information from them.

    How dispacable is it that the CMA actually opposes this bill because they don’t want to be inconvenienced by the additional screening warranted for women with dense tissue? Even if the additional screening doesn’t make physicans a lot of money, or make their work easier, the CMA seriously needs to shape up and start abiding by their hoppocratic oath, to practice medicine ethically.

    Please urge Governor Brown to sign this bill. And most importantly, ASK YOUR DOCTOR IF YOU HAVE DENSE BREASTS without delay! Don’t be among the 40,000 to 50,000 women each year that receive false negative mammogram reports, or worse, be among the estimated 10,000 of those women who will be dead within 10 years, due to the delay in diagnosis of their breast cancer.

  3. Robin Belkin says:

    This situation is really troubling on many levels.
    • We know that 1 in 8 women born today will be diagnosed with breast cancer in their lifetime.
    • We know that 40% of women have dense breast tissue–the highest known risk factor for breast cancer.
    • We know, according to the American Cancer Society, approximately 40,000 women die from breast cancer EACH YEAR, and
    • 10,000 of these women will be dead within 10 years due to the delay in diagnosis of their breast cancer.
    • For all the penny pinchers out there, we know it’s much cheaper to treat cancer upon early detection than after late stage detection.
    • We know that the 10,000 women who will lose their lives due to late detection of breast cancer is far more than the number of American soldiers killed in action in the ENTIRE Iraq and Afganastan wars combined (about 7,000)!

    Yet, Governor Brown and the CMA opposed this bill! Really? How much money have we spent on the Iraq and Afganastan Wars? How much do follow-up ultrasounds cost for the 40% of women who have dense breasts? By comparison, it’s pennies! If we are serious about SAVING LIVES, the governor needs to sign this bill, and the CMA needs to get out of the way of women’s survival.

    I do not want to hear any more from the Governor or the CMA about causing women “unnecessary anxiety” by passing this law. Why didn’t they worry similarly about causing “unnecessary anxiety” in men when they approved Viagra with all of it’s side effects: “Diarrhea; dizziness; flushing; headache; heartburn; stuffy nose; upset stomach. Seek medical attention right away if any of these SEVERE side effects occur when using Viagra: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; fainting; fast or irregular heartbeat; memory loss; numbness of an arm or leg; one-sided weakness; painful or prolonged erection; ringing in the ears; seizure; severe or persistent dizziness; severe or persistent vision changes; sudden decrease or loss of hearing; sudden decrease or loss of vision in one or both eyes. This is not a complete list of all side effects that may occur.”

    Enough is enough. Support this bill!

  4. Cathryn Tatusko says:

    As the woman who requested and fought hard for the breast density inform bill recently passed in Virginia, I applaud Amy Colton’s effort–and I urge every woman in California to support this bill.

    I was diagnosed with Stage IIIc breast cancer in October of 2009–only five months after receiving a “normal” mammogram result. In fact, a mammogram taken the very day I was diagnosed still did not demonstrate my cancer.

    Women with dense breast tissue need to be warned–for you, mammograms alone are a very ineffective screening tool. And your dense breast tissue puts you at greater risk of developing breast cancer than having a first-degree relative with the disease. Take preventive measures before it is too late–ask the doctor who refers you for your mammograms to tell you whether you have dense breast tissue, and if the answer is yes, insist on additional screening such as ultrasound or MRI. Your life, like mine, may hang in the balance.

    After undergoing every conceivable treatment to beat back my cancer–multiple rounds of chemo, bilateral matectomies, radiation, Herceptin, complete preventive hysterectomy and estrogen-suppressing medication, I just learned on March 26th that my cancer has spread to my liver. Any of you who have lost friends to cancer know what an ominous turn of events this is for me. My husband and I are going to do all we can to fight until the end, but I would do anything to spare any other woman from going through what I am going through right now.

    Support this bill–the life it saves may be your own!

    Cathy Tatusko

  5. Kudos to Amy Colton for bringing this issue to Sen. Simitian’s attention, to Sen. Simitian for passing this bipartisan bill (vetoed by Governor Brown) and now re-introducing it. Kudos to Ms. Magazine for reporting in this. And SHAME on Governor Jerry Brown for vetoing it, without even seeking input of proponents of the bill. Shame on the California Medical Association (CMA) for pressuring Governor Brown to veto it.

    The language opponents of this bill use is dripping with condescension toward patients. Exhibit A: Dr. Ruth Haskins of the CMA. “The problem with this bill is that it gives a boatload of power to a lot of women who then become powerless to use that information.” In other words, disempower women so that they don’t realize that they are powerless. Make sense? Yes, insurance is an issue, but this problem won’t be solved by keeping women in the dark and sweeping the issue under the carpet. This is not to mention that intentionally withholding information from patients is unethical. Dr. Haskins should lose her job for speaking like this about patients. I would not want to be her patient! And Governor Brown’s words: “Unnecessary anxiety”? When lives that could be saved are sacrificed to spare other women “unnecessary” anxiety, something tells me the interests of the patients are not the first concern here. How insulting. Governor Brown, unless you’ve been diagnosed with a serious disease a year late, you don’t know what anxiety is. This is a patients’ rights issue, a consumer rights issue, and a women’s rights issue. I hope Governor Brown comes to regret his decision.

  6. Roberta Friedman says:

    I say to Gov. Brown, if you think this bill will panic women, try two brain surgeries in six months! I have had to relearn how to walk twice now. That is what I have had to go through, as my cancer, diagnosed exactly as Cathy Tatsuko’s was, spread to my brain this past summer, and stereotaxic radiation to the site was not able to prevent its returning within three months. Now I am trying a different chemo than the five rounds that nearly did me in two years ago. As for cost, what about the two rounds of radiation, five of chemo, months of Tykerb at $3800 a month, and now more Tykerb and lipo Doxil, not to mention two breast surgeries and axial node dissection, endless scans at several thousand each, and two craniotomies? Surely an MRI would have been cheaper a couple years before being diagnosed stage IIIc with17 of 18 lymph nodes positive! Spare other women this living hell, sign the bill, Gov Brown, and all you women, ask about and know your breast density and discuss imaging options with your doctor if you have dense tissue.

  7. Amy Colton says:

    Cathy Tatusko’s recent accomplishment in VA not only benefits the women in her state, but opens the door for advancing breast density bills that are pending in 15 other states, as well as the federal bill. We thank you Cathy for the heroic effort you contributed to pass this life-saving measure!

    A cancer diagnosis is devastating enough in and of itself. But to receive this news and then later discover that critical information about your own physiology was withheld from you, AND that your cancer could have been detected at an earlier stage if only this information had been shared with you, and if readily available, reliable methods of supplemental screening were offered, is completely unacceptable! Cathy Tatusko and 1000′s of other women suffer this UNAVOIDABLE tragedy daily.

    How much longer will the medical community turn their backs on solid, scientific data that will save lives and reduce suffering for countless women and those who love them?

    Please support CA’s SB 1538, the similar bills pending in your own state, and the federal bill HR 3102, the federal Breast Density Reporting and Mammography Act of 2011.

  8. The Institute for Health Quality and Ethics filed a Citizen’s Petition with the FDA in October 2011, requesting that this organization, with responsibility for oversight of the Mammogram Quality Standards Act, adequately implement and enforce the patient notification amendment. Millions of women are provided false and misleading mammogram reports each year because the American College of Radiology has refused to provide this material medical information on breast density and its impact on mammogram efficacy to women in their mammogram reports.

    The work of Ms. Colton and other women is critical to ensuring that basic medical ethics are adhered to, and that women’s decisions about their own healthcare are made with informed consent. This practice of withhlding material medical information, which results in the preventable deaths of 10,000 women each year, is one of the nost eggregious violations of medical ethics in modern US medicine. The practice also violates the federal statute and results in several BILLION dollars wasted on ineffective screening each year.

    There are alternatives. Educate yourselves and speak with your doctors, many of whom are also unaware of the shortcomings of mammography and the more reliable adjuvant and alternative screening methods. Please join our latest petition requesting a Congressional hearing on this serious violation of the public trust.

    http://www.petition2congress.com/6491/stop-fda-practice-withholding-material-medical-information-from-m/

    Julie Marron, President
    Institute for Health Quality and Ethics
    http://www.inhqe.com
    401-282-8115
    jmarron@inhqe.com
    http://www.facebook.com/inhqe
    Twitter: @inhqe

  9. What kind of callous caveman opposes the Breast Density inform bill. Gov. Brown thinks it causes “unneccessary anxiety” for women to know they have increased risk for cancer if they have dense tissue, as if finding breast cancer at a later stage is a better, necessary anxiety. What an ignorant man. I was diagnosed at a later stage because my breast tissue was dense. It put me at increased risk, and my radiologist and doctor’s silence allowed my cancer to grow and spread over 7 years of “normal” mammograms, until I found it myself. This is outragiious and criminal. If there were a criminal hiding in my house with a loaded gun, would Gov. Brown want me to know about it before entering, or would he save me the “uneccesary anxiety” associated with the risk of entering the house.

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