Five years ago today on 7/17/2019 I had a diagnostic mammogram and an ultrasound of my right breast. This was ordered after I found a lump on 7/10/2019 and my primary care doctor confirmed my findings on 7/12/2019.
Make the effort to view the actual reports from the tests you have.
Many health care facilities will send you a letter or you may receive a phone call from your doctor’s office telling you that your tests were “just fine.” This is what we all want to hear so we typically do not take the time to go online to our medical charts to view the actual reported results. Review the actual report with your doctor and ask questions if you do not understand what it says. You must be your own heath advocate.
You must know your breast density.
On 10/11/2018 I had an annual mammogram at my local hospital. The radiology report indicates that I had multiple prior studies dating back to 8/13/2009.
FINDINGS: A moderate to large amount of heterogeneously dense tissue is again detected bilaterally which limits the sensitivity of the exam. There were no speculated masses. No suspicious microcalcifications. No evidence of architectural distortion. A few coarse calcifications are noted bilaterally. There were no significant changes.
IMPRESSION: No mammography evidence of malignancy. Recommended routine follow up. BIRADS Category II – Benign Findings.
Mammography reports were required to indicate breast density beginning 1/1/2019 – –horribly bad timing for me. This report mentions the breast density casually but did not assign a level to the density or indicate what should be done depending on the level of density. There is no way to know for sure, but my oncologist believes my cancer began at least as far back as 2017 given how widely it had spread when it was discovered. I was getting annual mammograms, but my breast tissue was far too dense for cancer to be detected on a mammogram. You must be your own health advocate.
You must know what to do if you have dense breast tissue.
The radiology report from my diagnostic mammogram showed “a vague density at about the 1 o’clock position.” This report, though, finally assigned a level to my breast density: “d – The breasts are extremely dense, which lowers the sensitivity of mammography.” BIRADS Category IV – Suspicious Abnormality.
The ultrasound report from that day found “a lobulated mass at the 1 o’clock position” that measures 2.4 cm in greatest diameter.
Two weeks later a breast MRI, the best scan available for detecting breast cancer, showed the reality: A 3.5 cm tumor in my right breast that had tentacles like a spider that reached clear through my right breast. A diagnostic mammogram only showed “a vague density.”
If your mammogram report indicates that you have heterogeneously dense or extremely dense breast tissue, you need further screening. A study from Myriad Genetics shows that 44% of women do not understand breast density and 63% of women do not know there is a connection between breast density and cancer risk. Until August 2019 I did not understand breast density and did not know there was a connection between breast density and cancer risk. Now I have Metatstic Breast Cancer (Stage IV) that has spread to my bones, liver, adrenal gland and brain. Breast cancer in early stages is treatable. My cancer is terminal. You must be your own heath advocate.
I spent some time being horribly angry and feeling betrayed by the health care system. I did everything I knew to do at the time, which was annual mammograms. The only way I can see my way through the anger is to passionately advocate for increased awareness of breast density and the increased risk of cancer associated with it AND to passionately advocate for more research to find a cure for Metastatic Breast Cancer, the only kind of breast cancer that kills and the cancer that kills 114 people every single day.
I am an ambassador for 2 organizations: My Density Matters and LightUpMBC. Go to https://mydensitymatters.org to learn about breast density and the screening necessary. Please consider donating to my fundraising page for LightUpMBC: https://donate.metavivor.org/fundraiser/5554408. All proceeds go to funding MBC research grants through Metavivor.
I am not in control. 
This is the first year I have been sent to a facility that specifically has a mammography machine for ādense breastsā. I also have in hand an order from my PCP, per my request, for ultrasounds of both my breasts in case they are needed for ANYTHING. Because, I too have dense bricks on my chest. And, because I follow you, who reminds me often, that a mammogram isnāt always the best diagnostic tool. When reading your plea for patients to be their own health advocate, as a nurse, I say this on the daily. Patients arenāt always receptive of me telling them that THEY MAKE THE RULES FOR THEIR BODY, not their PCP. Please, keep yelling it from the rooftops. Itās extremely important. And Heidi, even though I may be a nurse, it was YOU who taught me about the density of breasts and the importance of doing the right tests to check them. So THANK YOU!!!!
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Oh Amy. I cannot begin to tell you how great it makes me feel to read this. And I know that you, as a nurse, will keep on spreading the info on dense breast tissue. Iām thrilled you and many others are getting the scans you need now. It helps me feel a sense of purpose for this shit show cancer has made of my life. Sending all my love!
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