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Monday, October 21, 2013

Being less dense about breast cancer screening

I was privileged recently to attend a fund-raising event for Are You Dense, Inc., a non-profit organization dedicated to helping women with dense breast tissue get the best early detection services modern medicine can offer. Dense breast tissue both makes cancer more likely, and harder to see on standard mammograms.

I have addressed the topics of medical screening and mammography before. The former works best only when the right people get the right test. Otherwise, screening, which is quite literally looking for trouble, is apt to find just that. A false sense of security from a “normal” mammogram in a woman with dense breast tissue is just the kind of trouble we want to avoid. And while mammograms save lives, they have limitations, and the best screening programs account for them.

I have also done some homework on the topic of dense breast tissue and learned a bit about how prevalent and important this condition is. But it’s always best to get information directly from an expert source. My conversation with the Are You Dense founder, Nancy Cappello, PhD, was as informative as her efforts are inspiring. With her permission, I share her answers to some of the questions I posed.

1) What is ‘dense breast tissue,’ and why does it matter?

There are four categories of breast tissue composition. This scale is known as the BIRADS density scale and has been used by radiologists to standardize density reporting since 1993. The categories are divided in quartiles and range from fatty to scattered to heterogeneously to extremely dense. As a woman’s density increases, the sensitivity of the mammogram decreases. While the category of a woman’s dense tissue composition is usually shared by the radiologist in a report to her referring doctor, this information is seldom shared with the patient. Dense breast tissue is comprised of less fat and more connective and glandular tissue which appear white on mammographic X-ray. Cancerous tumors also appear white making it nearly impossible to ‘see’ the tumor. Cancer, hidden by dense tissue, can go undetected for years and once discovered is at a later stage, conveying less treatment options and worse survival outcomes.

2) What is the right approach to early breast cancer detection with dense breast tissue?

A woman needs to know her breast tissue composition and discuss its impact, along with additional risk factors, with her health care providers as she plans her personal screening surveillance. The scientific literature for two decades has concluded that dense tissue is the strongest predictor of the failure of a mammography screening to detect cancer. It is also a well-established predictor of breast cancer risk. The common convention is that women who have greater than 50% density are considered to have dense breast tissue, namely heterogeneously and extremely dense. About 40% of women of mammographic screening age are dense. Woman must understand that if she has dense tissue her normal mammography report results may be anything but normal, as cancer may be hidden by the dense tissue as in my case. My advanced stage IIIC cancer was discovered within weeks of a normal mammogram. Even though it is known by the medical community of the impact of dense tissue on the accuracy of the mammogram, most doctors do not share this information with women. This fatal flaw in breast cancer screening compelled me to start Are You Dense, Inc., to standardize density reporting across the country and the globe.

3) What is the evidence that modified approaches to early detection make a difference with dense breast tissue?

There are dozens of studies that conclude that screening technologies, such as MRI and ultrasound, added to mammography significantly increase the detection of small, early, invasive cancers. MRI and ultrasound technologies are more sensitive to finding cancers in women with dense breast tissue that are invisible on mammogram, known as mammographically occult cancers. As with every technology, there are benefits and risks. One of the risks of MRI and ultrasound is that there will be more false positives when the suspicious finding goes directly to biopsy without a diagnostic workup. Two national surveys and one state survey have reported that women want to know their dense tissue composition. Women would rather have a false positive than a missed positive—a normal mammogram, yet hidden invasive cancer undetected until palpable thus at a later stage. Women with dense breasts need to be informed of the risks and benefits of mammography screening including its impact on delayed diagnoses and advance cancer.

4) What are the obstacles to universal application of optimal methods of early detection?

Opponents to legislative efforts lament that density reporting will cause unnecessary trauma, confuse and frighten women, although we have not been presented with any surveys or studies confirming these assertions. Opponents also report a shortage of radiologists, insufficient screening codes and work-flow issues. All these issues of the profession will not be solved by withholding a woman’s dense tissue composition from her. We cannot accept the current standard that a patient should only have the information her doctors choose to tell her, thus denying her the ethical and moral doctrine of informed consent. Since the enactment of CT’s density reporting law, published data show a statistically significant increase in the detection of early, invasive, node-negative breast cancer by adding ultrasound screening to women with dense breast tissue and otherwise normal mammograms. While analog mammogram is the only screening tool that has shown, through randomized control trials, a reduction in deaths, we have not been presented with any research that invasive cancers not visible on mammogram and detected by other screening tests are any different and therefore less clinically significant.

5) What is most needed now by Are You Dense, Inc., to advance its mission?

Since our Connecticut density reporting legislation in 2009, hundreds of women have contacted me with the same tragic and compelling story, delayed diagnoses and advanced cancer with months of a normal mammogram. Some of our patients-turned-advocates have died as they pursued state density-reporting legislation. Reporting the scientific research, we have enlisted champion legislators and physicians in our campaign to ensure that all women are aware of their breast tissue composition and have access to reliable screening tools. As a result of the flurry of interest in legislation, I started Are You Dense Advocacy, Inc., in 2011 and as of this writing, 12 state density-reporting laws have been enacted.

We need supportive medical professionals, health industry personnel, patients-turned-advocates and the public to join our campaign for universal density reporting. The American Society of Breast Disease and the Association for Medical Imaging Management support our density-reporting efforts. We also need financial support to advance our impactful education, outreach and advocacy campaigns. Connecticut Congresswoman Rosa DeLauro is poised to reintroduce a federal density reporting bill and we are working with the FDA for revisions to the MQSA regulations to include density reporting in the patient’s mammography results

6) What would it take to be able to say mission accomplished?

Mission is accomplished when uniform density reporting exists across the globe and women have access to reliable screening tools to detect cancer at its earliest stage. We look forward to data confirming that legislative efforts improve breast density knowledge and assist women in discussions with their health care providers about their personal breast-screening protocol. We also expect dense breast tissue to be included in breast cancer risk assessment models. Because of our impactful mission, we anticipate a reduction in the incidence of regional and distant disease and deaths from breast cancer. Isn’t that what we all desire for ourselves and our loved ones?

I was left with a rhetorical question I did not ask Nancy. If there is a better protocol and it’s the law in 12 states, why isn’t it the law in all 50? We don’t need legislation to tell doctors what to do, but legislation ensures not only a consistent elevation of clinical practice standards, but also the appropriate coverage/reimbursement so that everyone gets the medical care we all know our loved ones deserve.

We don’t know how to make breast tissue less dense, but Are You Dense is showing us how to be a bit less dense about the need to tailor breast cancer screening to suit specific circumstances. Nancy’s laudable mission has come a long and impressive way already, but there are still lives at stake, and still miles—and 38 states—to go.

David L. Katz, MD, FACP, MPH, FACPM, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care. He is a board certified specialist in both Internal Medicine, and Preventive Medicine/Public Health, and Associate Professor (adjunct) in Public Health Practice at the Yale University School of Medicine. He is the Director and founder (1998) of Yale University's Prevention Research Center; Director and founder of the Integrative Medicine Center at Griffin Hospital (2000) in Derby, Conn.; founder and president of the non-profit Turn the Tide Foundation; and formerly the Director of Medical Studies in Public Health at the Yale School of Medicine for eight years. This post originally appeared on his blog at The Huffington Post.

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Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Auscultation
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Richmond, Va., with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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