Being Dense

Do you know if you have dense breasts? Depending on the state in which you live, your mammogram report might include the classification of the density of your breast tissue. I live in Illinois where, beginning 1/1/2019, mammogram reports are required to list breast density. My last mammogram before my de novo MBC diagnosis was in October 2018. The radiologist included density in the report even though it was not yet required. There are four categories. Some states list them 1-4 while others use A-D. 1/A is fatty. 2/B is scattered fibroglandular density. 3/C is heterogenous density. 4/D is extremely dense. My classification was 4/D. The image above on the right shows what dense breast tissue looks like on a mammogram. Dense breast tissue appears white; so do breast tumors. Having dense breast tissue also dramatically increases your risk for breast cancer.

If you have dense breast tissue (either category 3 or 4), you should talk with your doctor about having follow up tests. Depending on your state, insurance may cover the cost of either an ultrasound or an MRI. Beginning 1/1/2018 in Illinois, insurance covered the cost of these follow up tests if a mammogram shows category 3 or 4. Did you note the discrepancy in dates there? Insurance had to cover the tests 1/1/2018 but the mammogram report did not have to report breast density until 1/1/2019. I have spent a lot of time researching breast density and breast cancer since my diagnosis. The website I recommend for a starting point is https://densebreast-info.org. They have a State Legislative Map page where you can see what laws about breast density are in effect in your state in the US.

There are differing opinions among experts on the need for follow up testing for women with dense breast tissue. Dense breast tissue is very common. Having dense breast tissue does not mean you will get breast cancer. That said, I am a woman who had annual mammograms faithfully beginning at age 40. My last mammogram in October 2018 was declared negative for signs of breast cancer, however my density was category 4 – extremely dense. When I felt a large lump in my right breast and had a mammogram 7/17/2019, the report said that a tumor was not visible – but since my doctor had felt the lump, there was cause for further testing. Think about that —— at the point where I had metastatic breast cancer, the regular mammogram still just showed a glob of white that could be dense breast tissue or could have been the large tumor. The ultrasound made the tentacled tumor easily discernible. even I knew what I was seeing on the screen.

If you have dense breast tissue, should you have follow up tests after your regular mammogram? That is up to you. These tests are costly and, depending on your insurance and where you live, they may be very expensive. That said, we know the end of my story. I have stage 4, terminal cancer. I cannot change that. I can, however, spread knowledge of breast density and insurance laws so that women know they have choices. Since I began posting on social media about breast density, several friends have told me they looked at their mammogram reports, learned they had dense breast tissue, and got follow up testing. At this point I can happily report that all of them came back free and clear of breast cancer. It is my hope that more women will learn to read their mammogram report and understand what it means. I cannot change my story, but I may be able to save someone else’s life.