“If every life has a theme, it would appear mine is “advocacy.” On fronts personal and now medical, I have never had the luxury of not feeling compelled to take action if it was clear one was needed.” - JoAnn Pushkin
JoAnn Pushkin is the Executive Director of the educational website DenseBreast-info.org, which provides breast density information to patients and health care professionals. JoAnn is also a patient advocate, author and speaker. I recently got to speak with her to learn about her breast cancer journey and why she chose to focus specifically on dense breast education.
MK: Why is it so important to educate women about the issue of dense breasts?
JP: learned of my own breast density's masking effect on my mammogram after finding a lump during a self-exam which had been undetected by mammography several years in a row. On average, about 40% of women of mammography age have dense breasts. Women with dense breasts (heterogeneously dense or extremely dense) benefit from additional screening. The addition of any type of screening after your mammogram, such as ultrasound or MRI, finds more cancers than mammography alone.
MK: How did you leverage your experience to help others?
JP: By getting more educated, and using my story, my advocacy served as inspiration for New York State's Breast Density Inform bill, signed into law in July 2012. On the federal level, I have 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 for density notification to women.
MK: What were your plans before you were diagnosed with breast cancer?
JP: Just prior to my diagnosis I had left my job to focus full-time on writing. It was an exciting time, a children’s story I wrote was about to be published; a life-long dream come true! Unfortunately, the beginning of chemo coincided with the publishing date. Within 24 hours of taking an “author’s” photo for use in a local newspaper article, I was bald. It is my last picture with long hair. Anything I have published since that time has been about dense breasts and breast cancer.
MK: What do you wish you'd know before being diagnosed with breast cancer?
JP: Four things:
a. That a “normal” or benign” mammogram report does not reliably exclude that cancer is growing undetected
b. That although normal, dense breast tissue is a risk factor for developing breast cancer and the denser the breast, the greater the risk.
c. Though mammograms pick up some cancers not seen on other screening tests, in dense breasts, cancers can be hidden on mammography and may go undetected until they are larger and more likely to have spread.
d. Other screening tests like ultrasound or MRI, in addition to mammography, substantially increase detection of early stage breast cancer in dense breasts.
MK: Do you ever wish you could go back to life as if was before breast cancer?
JP: I read somewhere recently that we always imagine our un-lived life to be better than our actual one. So, on days when I am feeling strong and hopeful, no. On days when that tentacle of fear invades the mind, yes.
MK: Tell me about your advocacy work.
JP: My delayed cancer diagnosis experience was the impetus for me to push for New York’s breast density notification law as well as efforts on the federal level for same. After NY’s law went into effect, women and their doctors began to contact me uncertain as to what the new notification meant. The awareness that a medically-sourced educational tool was needed on the topic led to the development of DenseBreast-info.org which I co-developed with breast imaging expert Dr. Wendie Berg and radiologic technologist Cindy Henke.
MK: What word do you wish you could take out of the breast cancer vocabulary?
JP: Metastatic.
MK: Why is it so important to you to support other women with breast cancer?
JP: There were those, and some were strangers, kind enough to lend me their support during my own “ground zero.” Only when “mortality” has pulled up a chair to your kitchen table, do you fully appreciate the generosity of those who, though they have already walked a path, still reach backward with an open hand to pull someone else forward.
MK: What would you tell a newly diagnosed young woman?
JP: When you are so scared you cannot breathe, reflect on the fact that there are women on the other side of this nightmare well enough to answer questions like this.
MK: What one word defines you?
JP: Resilient.