InforMD are saddened to hear of the passing of Dr Nancy Cappello.
Nancy was diagnosed with stage 3 breast cancer in 2004, 6 weeks after a negative mammogram. The mammogram had missed her cancer due to her high breast density. She was very concerned that she had never been told that she had high breast density even though it was known to reduce the sensitivity of mammography in detecting breast cancers. Nancy became an advocate for breast density notification and was the inspiration behind the first breast density legislation in Connecticut in 2009. Since then many other U.S. states have followed suit, with 35 states now enacting laws that mandate breast density notification.
Nancy was diagnosed in September this year with Myelodysplastic Syndrome, a rare disease caused by the aggressive treatment for breast cancer she had received 14 years ago.
Nancy worked tirelessly as an advocate for open transparent communication between health professionals and the people they care for. Through her work in breast density notification she demonstrated the power of individuals to shape health policy and practice. She continues to inspire us to question the status quo and to work towards improving breast cancer screening and density communication.
Her memory lives on in the people's lives she touched.
Rest In Peace, Nancy
Why does knowing my breast density matter?
Why breast density is a unique risk factor
It is well established that dense breasts both hide cancers on a mammogram and increase a woman's risk for developing the disease. Yet, while all other common risk factors (e.g. personal/medical history, family history, lifestyle) are ones which a woman can inform her doctor of, breast density is the only one her doctor must inform her of.
Either breast screening is important or it's not. And, if it is, an informed patient and appropriate screening are particularly important for those who are both at greater risk of developing breast cancer and of having that cancer missed by mammography. In order to have these
“informed” conversations, those facing this “double risk” need to know. A woman cannot participate in discussions about her own breast health surveillance in the absence of enough information to do so.
My own story became the inspiration for New York State’s breast density inform law which went into effect in January 2013. It was the first U.S. state to require that women be informed, in clear unambiguous language, if their breast tissue is dense. As of this writing, 34 U.S. states, encompassing over 84% of American women, now require some level of breast density reporting to a patient after her mammogram.
Do all “inform” laws provide the same information?
No. While the majority of states have enacted such laws, the laws vary and the existence of a law in a state does not necessarily mean a patient will be informed if they have dense breasts. There is no consistency from state to state on what the laws require women be told about breast density. In fact, some density inform laws only require a woman be provided general information about breast density without providing her information as to whether she has dense breasts. Click here for an interactive map and learn what is required by state.
What about a national standard for reporting density to all women?
Because the laws vary from state to state, after work on my own state bill in New York, I initiated efforts on the federal level for a single national standard. A national reporting standard would mean all women in the U.S., no matter where they live, would receive the same level of information about their breast density. This can happen either through federal regulation or federal legislation and efforts have been initiated on both. On the federal legislative front, the Breast Density and Mammography Reporting Act of 2017 has been introduced in both the Senate (S 2006) and the House (HR 4122). On the federal regulatory level, the Federal Drug Administration anticipates publishing proposed amendments to the Mammography Quality Standards Act (MQSA) regulations. For more information on U.S. federal efforts, click HERE.
After enactment of the New York law I began to hear from women and their health care providers with questions about the implications of dense tissue. To address these questions, I co-founded a medically-sourced website, DenseBreast-info.org. For comprehensive information on the topic, please visit.
© 2018, JoAnn Pushkin
JoAnn Pushkin, Executive Director of DenseBreast-info.org, is a patient/advocate, author and speaker. Her initiative and advocacy served as inspiration for New York State's breast density inform law which went into effect in January 2013. On the federal level, Ms. Pushkin led the efforts for both the introduction of the Federal Breast Density and Mammography Reporting Act, as well as the FDA’s Mammography Quality Standards Act regulatory amendment consideration.
Prof Gelareh Farshid from SA Pathology was the moderator.
The audience was invited to vote "yes" or "no" to the question "Breast density - Should we tell the women?" on the conference App before the debate started. Each speaker had 4 minutes to state their case, and once all speakers had presented, the audience was invited to comment on their own perspective or ask questions of the speakers. Following the discussion, the audience was again invited to vote on the same question.
The against team argued that there was no clear evidence that density inform would benefit women, but there was clear evidence that it could cause harms, such as false positives associated with supplementary screening. They argued that without a clear direction for what women can do about high breast density, providing them with this information will cause anxiety and this is also considered a harm, These points are outlined in the BreastScreen Australia and the Royal Australian and New Zealand College of Radiologists position statements published in 2016. The team in favour of density inform argued that full disclosure is an obligation of Australian medical practice, that withholding information damages patient trust, and that the Western Australia policy of density inform has not resulted in the harms and anxiety that many may have feared, and could be used as a foundation on which to build a national policy.
Our first peer-reviewed publication is now available in eCancer journal! Read all about why we started the InforMD initiative, and the progress we have made in raising awareness of breast density.
We chatted to InforMD member, and first author of the publication, Dr Honor Hugo, about why InforMD is so important. "InforMD is a unique public resource, there is no other website in Australia that is run by scientists, for the express purpose of informing the general public about breast density. It is a resource that can be trusted as presenting accurate and true information, delivered by the people who are at the forefront of these discoveries who feel passionate about getting the right information out there. I am proud to be part of this alliance as I believe there is so much to be done."
An interview with InforMD member and corresponding author A/Prof Wendy Ingman can be viewed here.
Keen to know more about breast density but don't want to wade through a bunch of technical papers? Well, we have the solution! This lecture by INFORMD member A/Prof Wendy Ingman, from the University of Adelaide, covers pretty much everything you want to know about breast density - what it is, what is the association with cancer, why it hides cancers on a mammogram, and the current Australian position on breast density.
The lecture was made for McGrath Breast Care Nurses and is part of a series of lectures on the McGrath Foundation eLearning platform which has received CPD accreditation from the Australian College of Nursing. The McGrath Foundation have kindly agreed to let InforMD share the lecture online so anyone wanting to learn about breast density can do so from the comfort of their own home. So grab a cup of coffee, sit back and enjoy!
Please be aware that since the lecture was filmed in May 2017, there have been some changes to the BreastScreen WA information on breast density. The updated information for women can be found here, and the updated information for GPs can be found here. A significant change is the addition of the following statement to the information for GPs regarding supplementary screening for women with dense breasts "Women at intermediate risk of breast cancer due to a family history, a personal history of breast cancer, or other risk factors including premalignant lesions such as lobular neoplasia may benefit from regular supplemental whole breast ultrasound."
Apparently I was lucky! Of course, to be diagnosed with cancer was a huge shock. However, what was clear was that without supplemental screening ultrasound, my tumour would not have been detected. Unfortunately, ultrasound is not offered in the national screening programme in the UK unless a woman presents symptoms. My next screening mammogram would have been 3 years on and the outcome would likely have been quite different.
Knowledge is Power
Immediately I began to research IDC. I needed to educate myself. As a retired teacher, I wanted to learn all about breast cancer. I was surprised and fascinated to discover the issue of dense breasts.
Why Does Breast Density Matter?
I discovered that breasts are made up of glandular and fatty tissue and whilst dense breasts are not abnormal, mammography is not as effective detecting cancers in women with highly dense breast tissue. On a mammogram image, dense tissue appears white, but so does cancer, almost like a fog. Cancers can go undetected and sometimes women are diagnosed later with interval cancers at a more advanced stage which require more treatment.
Making an appointment
When you call up to make your appointment you will be asked details about the referral form given to you by your doctor. It is helpful if you inform the receptionist if there is anything that you feel may require a longer booking such as breast implants or a disability that may need the help of a second technician.
You will be asked to wear a two piece outfit to allow you to undress from the waist up and not to apply any deodorants or creams prior to the appointment as they may affect the image.
A female technician trained specifically in mammography will call you from the waiting room and take you to either a cubicle or the mammography room. Here they will confirm your identity and provide you with a gown. They will ask you to remove everything from the waist up. Jewellery is fine to stay on however long necklaces are best to either remove or swing round to the back. If you have long hair it is helpful if you are able to tie it back.
Why does the United States have Dense Breast "Inform" Laws? What I learned and why it matters
BreastScreen Australia conference debate "Breast density - Should we tell the women?"
InforMD - a new initiative to raise awareness about breast density
Breast density in screening, detection and incidence of breast cancer
The global breast density conversation: Meet one woman driving change in the United Kingdom
What to expect at a mammogram appointment