I would like to introduce you to Gail Zeamer, a wonderful Patient Advocate that I have long admired from afar. Gail and I have never met, she lives in Wisconsin but we share a passion for Breast Density Advocacy. We also share a similarly delayed Breast Cancer diagnosis which was definitely the catalyst for each of us getting started in Density Advocacy.
Gail has written an opinion piece for Beingdense.com and I’m delighted to share it with you below.
I was diagnosed with Stage 3C breast cancer in February of 2016. My tumor was nearly 4cm in size, yet completely undetected by 3D mammography.
When I asked the radiologist why the tumor did not show up in the mammogram, he replied “finding your tumor was like finding a polar bear in a snowstorm.” This information was a wake-up call to me; a way of explaining my advanced diagnosis that both frightened me and threw me into the eye of the “storm” of patient advocacy and education.
Like many women, I was diligent about my yearly mammograms beginning at age 40. I had asked for two years in a row about a lump I felt on my left breast. Since it never showed on mammogram, I was told it was most likely a cyst, since it didn’t “feel” like a tumor to the health care provider I was seeing at the time. No further essential supplemental screening was ever mentioned or discussed as an option.
Looking back, my breast density was noted in every mammogram report sent to that health care provider, but I was never informed about it or educated in any way about the risk factors of dense breast tissue. I felt as if an emotional storm was churning around me, angry and threatening until I found my voice soon after I was finally told of my dense breast tissue.
During my chemotherapy infusions, I had time to really research and educate myself about dense breast tissue. I came across information that my home state of Wisconsin was one of many States that did not have a density notification mandate at the time.
I reached out to fellow advocates around the country and decided that I would attempt to contact my State Representative in order to make that change. I had never involved myself in political or legislative matters, but all of a sudden I was absolutely resolute in my vision of getting this information to all women in my State, so that no one would ever have to receive this news too late. I have no idea what came over me, but it felt like the winds of change were carrying me into the storm.
After meeting with my State Representative and convincing him to write the bill, we worked together for 18 months to educate legislators, attend committee meetings, and made numerous trips to the State capital building. Finally in April, 2018 the Wisconsin Breast Density Notification Bill was signed into law. The next step is to have a bill written that will also allow for full coverage of insurance for women to receive essential screenings in addition to mammograms, such as ultrasounds and MRI’s.
Women need and deserve access to breast density notification, as well as full insurance coverage for the essential supplemental screenings needed for both heterogeneously and extremely dense breast tissue. In addition, health care providers need to be fully educated about the risk factors of dense breast tissue, since it applies to almost 50% of their patients. In addition, physicians should not feel pressure when wanting to make referrals for additional essential screenings if they feel the screening may need to be paid out of pocket by the patient.
So this is my view currently: I’m in the eye of the storm. I have been surviving cancer for 4 years, while negotiating the political system and attempting to get additional laws passed. Here’s the great thing about being in the eye of the storm. It’s calm here, even with the whirling winds of confusing politics, and the constant fear of recurrence of this dreadful disease always surrounding me. I can advocate for myself during oncology appointments, and while having blood drawn, and when I know something is not quite right. I have a voice now and that voice gives me the strength to ride out the storm until my work is done.
I’d like to thank Gail for agreeing to write this piece for http://www.beingdense.com
Gail and I are both in a unique position to be able to share our experiences, two women, one diagnosis, two continents, raising awareness on one issue that affects 40% of women globally. Best regards to you all. Siobhán Freeney Beingdense.com October 2020 #BCAM2020