By Ashley Inda
Breast density. Breast density. Breast density. Breast density. Breast density.
I feel like a broken record but I cannot and will not stop talking about BREAST DENSITY!
As we enter Breast Cancer Awareness Month, we can’t talk about breast cancer without talking about breast density.
I once had dense breasts but after a delayed diagnosis of breast cancer I had my dense breasts removed, along with the cancer hiding inside them. At 38, I found out I had Stage III breast cancer after a mammogram and ultrasound 2.5 years prior was “all clear, just dense breasts.”
I didn’t know what having dense breasts meant or what the inherent risks were after that initial mammogram and ultrasound after I found a lump when I was 35. Even when I returned to the doctor six months later with worsening symptoms, the conclusion after a breast examination was “relax, it’s just dense breasts.”
“Just dense breasts” was used to alleviate my fears when it should have elevated them. I carried that mantra of “it’s just dense breast tissue” with me in the months and years that followed. When my kids would hug me and I would wince, “it’s okay, it’s just dense breast tissue.” When I would go for a run and my breast would ache and throb, “no worries, it’s just dense breast tissue.” When I would wake up in the middle of the night because my breast hurt, “It’s fine, it’s just dense breast tissue.”
And it almost killed me.
Here is what I wish I would have known about dense breasts:
- It’s more difficult for mammograms to detect cancer in women with dense breast tissue because both dense breast tissue and cancer show up as white (1).
- You cannot detect dense breasts on a breast examination, the categorization can only be determined through mammography.
- Having dense breast tissue increases a woman’s risk of developing breast cancer by 4-6 times (2).
- Mammograms miss more than 50% of breast cancers in women with dense breasts (3).
- Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer (4).
- Breast density can carry a higher risk factor of developing breast cancer than family history (5).
- Supplemental imaging found the following additional breast cancers per 1,000 (Incremental Cancer Detection Rate, ICDR): Tomosynthesis/3D Mammogram: 1; Whole breast ultrasound: 3; Molecular breast imaging: 9; Contrast-enhanced mammography: 13; Contrast-enhanced breast MRI: 16 (6).
- 71% of all breast cancers occur in women with dense breasts (7).
- 85% of breast cancers occur in women who have no family history of breast cancer (8).
- Cancers in dense breasts: can mean greater risk of interval cancers (missed by mammogram); are more often advanced stage, multifocal or multicentric; require mastectomy more often for treatment and have a greater risk of recurrence in women with history of breast cancer (7).
You better believe that when I finally pushed my physician to have another mammogram and ultrasound when I could no longer ignore the extreme symptoms and the result was cancer, I screamed angrily, “JUST DENSE BREAST TISSUE?!!!”
I knew, I knew right away that my cancer went undetected for years despite my advocacy, but you don’t know what you don’t know.
You know what else I now know? That my story is shared with thousands of women across Wisconsin and has been happening for decades. That is why I have made it my mission to educate and advocate for women with dense breasts to get behind coalitions, organizations and movements that are working to implement policy changes at the local, state and federal levels. Coalitions such as the Wisconsin Breast Cancer Coalition (WBCC).
Since 2016, WBCC has been advocating and working with our legislators to get bills passed that ensure that women with dense breasts receive appropriate notification of their breast density and inherent risk factors AND that there is no-cost coverage of the additional supplemental screening necessary to detect breast cancer in women with dense breasts.
Gail Zeamer led this effort for WBCC. Gail was a fierce advocate who reached out to her legislators after a delayed diagnosis of breast cancer due to dense breasts and worked with them to get Wisconsin’s Breast Density Notification Law passed in 2017 (Wisconsin Act 201). I’ll never forget my first time meeting Gail – it felt like meeting a celebrity as I had read so much about her and her efforts when I started looking into breast density. She was warm, inviting and so incredibly validating.
I joined her efforts on the second attempt at getting insurance companies to cover the cost of supplemental screening in women with dense breasts and those at higher risk of developing breast cancer. I watched as Gail spoke with legislators, provided heart-wrenching testimony at committee hearings, sat for interviews with local television stations and wrote op-eds for newspapers, never wavering in her determination to make this road easier for other women with dense breasts.
Sadly, Gail passed away in June, leaving behind all those who knew and loved her along with an amazing legacy that will continue to serve the women of Wisconsin for decades to come. This huge loss for everyone highlights a very real danger of a delayed diagnosis of breast cancer due to dense breasts.
So no, I will not stop talking about breast density. I will continue to talk about breast density until there is appropriate, comprehensive, covered screening for breast cancer in women with dense breasts.
During this Breast Cancer Awareness Month let’s honor the work and legacy of Gail Zeamer and empower ourselves and all the women around us to know our breast density and advocate for supplemental screening for breast cancer.
If you would like additional information and resources on breast density, head on over to My Density Matters and check out this resource: https://mydensitymatters.org/breast-cancer-screening-guide/.
Ashley Inda is an occupational therapist with over 15 years of experience. After being diagnosed with breast cancer in 2021, she became motivated and inspired to work with those impacted by cancer. Ashley is a certified lymphedema therapist and practices in the Madison area. When she is not working with the most amazing patients in the world you can find her in her minivan shuffling her two kids, Lincoln and Maya, to their various activities, sipping a good cup of coffee and advocating for individuals with dense breasts at the state capitol.
References:
- My Density Matters. (2024). Why do I care about breast density? https://mydensitymatters.org/#density
- Boyd NF, Rommens JM, Vogt K, Lee V, Hopper JL, Yaffe MJ, Paterson AD. Mammographic breast density as an intermediate phenotype for breast cancer. Lancet Oncol. 2005;6(10):798–808.
- Operation Breast Density. (2024). Let’s Review The Facts. https://www.operationbreastdensity.org
- Are You Dense, Inc. (2024). Are You Dense? Fact #1. https://www.areyoudense.org
- Beidler LB, Kressin NR, Wormwood JB, Battaglia TA, Slanetz PJ, Gunn CM. Perceptions of Breast Cancer Risks Among Women Receiving Mammograph Screening. JAMA Netw Open. 2023;6(1):e2252209. doi:10.1001/jamanetworkopen.2022.52209
- Covington M. (2023, Jul 29). Supplemental Breast Cancer Screening: Unmasking the Truth. The Radiology Review. https://www.theradiologyreview.com/the-radiology-review-journal/unraveling-the-complexities-of-supplemental-breast-cancer-screening
- Hallowell S. (2023, Feb 18). Breast Density. Operation Breast Density Breast Cancer Screening Symposium, Troy, MI.
- Breastcancer.org. (2023). Breast Cancer Facts and Statistics. https://www.breastcancer.org/facts-statistics