Dr. Cappello Comments: "Why Women Need to be Included in Screening Decisions" by Dr. Tom Kolb

Dr. Tom Kolb writes about the never ending controversy regarding mammographic screening and the importance of including women in the screening conversation. He also discusses the grassroots movement that led to Connecticut being the first state to mandate the communication of breast density to the patient and the passage of the recent breast density inform bill, Henda’s Law, in the state of Texas and current bills in NY and CA that passed their Senates and are now heading to their Assemblies.

Dr. Kolb believes that this information . . . “allows the patient to more completely evaluate their mammogram report, i.e. the probability of a false negative mammogram. It also allows women the option of understanding whether an additional screening method, such as ultrasound or MRI, to reduce this false negative rate, would be wise. While withholding this information from women sounds unethical, physician groups in different states have opposed the bill citing concerns of misuse of this information and the potential effect of scaring women.” He concludes that “normal risk women would be well-advised to have annual mammography from the age of 40 and consider additional screening if they are high risk or have dense breasts. The medical community would be well advised to better educate and include women in the discussion of risk vs. benefit. Not doing so is unethical and potentially life threatening.”

Dr. Cappello comments:

When I was first diagnosed with advanced stage breast cancer in 2004 and was first informed that my mammograms failed to find my cancer because of my "dense breast tissue", I went on a search to find information about this condition of dense breast tissue that prevented me from having an early breast cancer diagnosis, hence the potential of dying prematurely from the disease.

At the time of my diagnosis in 2004, The National Cancer Organizations dedicated to Early Detection and the lay publications were void of any information about dense breast tissue. I started researching the medical journals and found Dr. Kolb's 2002 acclaimed study demonstrating that, for women with dense breast tissue, the addition of an ultrasound to a mammogram increases cancer detection to 97% (as opposed to less than a 48% chance of having cancer diagnosed by mammography alone.) I was shocked by this information but encouraged that women with dense breast tissue could have access to an Early Breast Cancer diagnosis. Kolb reported that the additional ultrasound found cancers that were small and node negative (as opposed to my cancer which metastasized to 13 lymph nodes -a normal mammogram weeks before). His research led me to 6 additional earlier studies which supported Dr. Kolb's conclusions - the denser the breasts - the greater likelihood of having cancer missed by mammography. I was outraged that the challenges of finding cancer by mammography in women with dense breast tissue was known by the imaging community but was a secret to 40% of women, like me, with dense breast tissue. This knowledge catapulted me to start exposing this secret by asking women, “Are You Dense?”

Fast forward - 7 years and tears later, with Connecticut’s two landmark laws (2005 and 2009) and early data from Connecticut demonstrating an increase in the detection of small node negative cancers in women with dense breast tissue, we still have opposition from organizations like the American College of Radiology and in California - trade organizations representing gynecologists, obstetricians radiologists and The CA Medical Association are opposing Senator Simitian’s two sentence bill. The American Cancer Society, as the official sponsor of birthdays, remains “neutral" on informing women of their breast density; giving women with dense breast tissue the potential of less birthdays.  While these organizations debate the merits and harms of informing women of their dense breast tissue, cancer does not take a time out. Dr. Kolb advises the medical community to include women in the discussion of their breast health. I concur with him that by “Not doing so is unethical and potentially life threatening.”

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