Volume 16 - Issue 2, 2016 - Best Practice

Fatal Flaw In Breast Cancer Screening

Impact of Dense Breast Tissue On Reliability Of Mammograms



The internet and social media have transformed our‏ lives. They have literally opened up a global connection ‏to those with similar interests and passions. In ‏my focused world of patient advocacy for breast health, ‏I meet innumerable women, fervent in their yearly breast ‏cancer screening, yet diagnosed with a missed, delayed and ‏advanced stage cancer because of their dense breast tissue. ‏Like me, these women never knew about the impact of dense ‏breast tissue on the reliability of their mammogram until ‏after their diagnosis. Our mission is to correct this fatal flaw ‏in breast cancer screening.

 

Through a quick internet search for information about ‏dense breast tissue, these ‘strangers’ quickly become ‏my fast friends. I often kid that AreYouDense.org and ‏AreYouDenseAdvocacy.org, the websites of our two ‏nonprofit organisations, are akin to an online-dating service, ‏uniting me with breast cancer patients, stunned by their laterstage ‏cancers, in spite of never missing a mammography ‏appointment. These encounters lead to a relationship cultivated ‏by emails, texts and online messaging.

 

Through Facebook, I remotely get introduced to their ‏kids, grandkids and pets, often commenting on their family’s ‏memorable moments and encouraging them as they ‏progress with their breast cancer treatment. As with online ‏dating, at times we advance the relationship by communicating ‏by phone and on several occasions meet in person. ‏These women become my extended family. Relationships, ‏which were birthed based on our common bond of breast ‏cancer, develop into a heartfelt friendship.

 

Bumpy Road of Patient Advocacy and Breast Health

 

Upon my advanced stage cancer diagnosis in 2004, after ‏never missing an annual mammography appointment, I ‏asked my ‘team’ of doctors as to why my 11 years of normal ‏mammograms did not find my cancer. I was stunned by each ‏of their responses that my dense breast tissue, which I was ‏unaware of, masked my cancer for years and that mammograms ‏are limited in finding cancers in dense breasts. The ‏non-nonchalant responses from my health care team and ‏their refusal to disclose this ‘dense’ information to their ‏patients as part of their mammography report, led me to ‏travel the bumpy and unpaved road of patient advocacy and ‏breast health. A decade of research existed at the time of my ‏diagnosis on the limitations of mammograms in women with ‏dense breast tissue and more than two decades of research ‏on the causal risk of dense breast tissue.

 

‏My desire was to expose the secret of dense breast tissue, ‏taking this information from the scientific journals to the ‏examining room.

 

The Immense Reach of Social Media

 

Social media have brought together a community of breast ‏health advocates, breast cancer survivors, and healthcare ‏providers, to communicate about the many aspects of breast ‏cancer such as prevention, risks, screening, treatments, and ‏promising research for a cure. Open 24 hours, within seconds ‏of breast cancer survivors’ posts about side effects from ‏treatment, decisions about surgery and their most intimate ‏anxieties and fears, the cheer-leading team of survivors, ‏caregivers, and health care providers intervene. My advocacy ‏work and our immense reach through social media, give ‏me the opportunity to console a sister or brother, to offer ‏hope to them and their families as they ‘live’ with a breast ‏cancer diagnosis.

 

In the United States, breast cancer is the second leading ‏cause of cancer deaths in women and the leading cause ‏of premature mortality. Whether from my local community ‏support group or through the infinite bond of social media, I ‏have experienced much gratitude hanging out with my breast ‏cancer friends. Not thankful for our diagnosis, but because ‏of the fragility of cancer, we have a heightened gratitude ‏for each day. Too many of us can check all the boxes for the ‏prevention measures we adhered to - no smoking, maintaining ‏a healthy weight and diet, being physically active ‏and never missing our yearly mammography screening. ‏Consequently, I experience grief all too often.

 

My global connections with friends with a breast cancer ‏diagnosis, connect me with women whose cancer had metastasised ‏upon diagnosis. Their deaths hit hard. Like the death ‏of President Kennedy when I was in grammar school, I can ‏recall the exact time and place when I received notice about ‏one of my friends’ passing.

 

Often the notices are through social media. Having experienced ‏more deaths than I am prepared for, I often think ‏of our first-responders and hospice health-care providers, ‏where death becomes commonplace and wonder how they ‏cope with their frequent grief.

 

The lives and deaths of my extended newfound family motivate ‏me as I advocate for our mission to eliminate grief ‏of a loved one dying prematurely from this disease. The ‏complexity of breast cancer biology tells us that even with an ‏early diagnosis, the disease can progress and kill. However, ‏research also concludes that early detection still matters. ‏Tumour size and nodal status still have a significant and major ‏influence, independent of tumour biology, in the current era ‏of more conservative surgery and more effective systemic ‏adjuvant therapies.

 

Advocating for Density Reporting and Education

 

While my heart and soul grieve the death of friends from ‏breast cancer, it also motivates me to continue to advocate ‏for density reporting and education and access to multimodal ‏screening to reduce advanced disease and premature ‏death from breast cancer.

 

Follow Nancy M. Cappello, Ph.D. on Twitter: www.twitter. ‏com/DrNancyCappello

 

Key Points

 

• Mammograms are limited in finding cancers in dense breasts.

• In the U.S., breast cancer is the second leading cause of cancer deaths in women.


 


Further Information

 

Are You Dense – Patient Stories: http://www.areyoudense.org/stories/


Exposing the best-kept secret: http://www.areyoudense.org/files/1814/5236/2405/JAN_11_2016.two_page_brochure.pdf


Wolfe Mammographic Parenchymal Patterns and Breast Cancer Risk (American Journal of Radiology) http://www.ajronline.org/doi/abs/10.2214/AJR.06.0635

 

Breast Cancer Screening for Women at Average Risk - 2015 Guideline Update From the American Cancer Society (Journal of the American Medical Association) http://jama.jamanetwork.com/article.aspx?articleid=2463262

 

Insights from the Breast Cancer Screening Trials: How Screening Affects the Natural History of Breast Cancer and Implications for Evaluating Service Screening Programs (The Breast Journal) https://www.researchgate.net/publication/268527874_Insights_from_the_Breast_Cancer_Screening_Trials_How_Screening_Affects_the_Natural_History_of_Breast_Cancer_and_Implications_for_ Evaluating _Service_Screening_Programs


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