By Deborah Romer, former CEF Leadership Council and Mentor, and Brenda Sulick, Fellowship Class of 2022
October is National Breast Cancer Awareness month and October 15 is Global Lobular Breast Cancer Awareness Day. Carol Emmott Foundation colleagues, Deborah Romer (former Leadership Council/Mentor) and Brenda Sulick (Fellowship Class of 2022), are teaming up to educate women about invasive lobular breast cancer (ILC) and the new, national breast density notification guidelines. Deborah and Brenda are both lobular breast cancer survivors as well as patient advocates, and want women, especially those with dense breasts, to know how to advocate for themselves. Below are their stories.
(Brenda’s Story) When I was diagnosed with breast cancer in September 2023, I had never heard of ILC. Because ILC generally doesn’t produce masses or tumors, it is hard to detect on mammograms, especially if you have dense breasts. This means many women do not receive a diagnosis until they are in later stages. ILC affects about 10-15 percent of individuals with breast cancer, with an average diagnosis age of 62 years.
I was one of the lucky ones because my radiologist saw a scar on my mammogram and wanted a biopsy. It turned out that I had early stage lobular cancer. Two months later, I had a double mastectomy and reconstruction but did not need chemo or radiation. I am now cancer free, at least for now. ILC tends to come back later (after five years), so I need to be vigilant about new symptoms.
ILC symptoms include changes in breast size and nipples, dimpling, thickening, and pain. In my case, my breast size increased dramatically, from a 34B to a 36D over a couple of years. I kept buying new bras because my button-down shirts were busting off my chest like Superman when I moved by arms. I asked my primary care doctor and OBGYN about it, and they told me it was fat, related to menopause and estrogen loss. I hadn’t gained much weight during menopause, so this seemed odd to me, but I went with it. I know now that I need to strongly advocate for myself when I think something is wrong with my body.
(Deborah’s Story) Like Brenda, my lobular breast cancer was not seen on imaging. Having had a history of benign breast disease and dense breasts, I was diligent about getting mammograms and made a point of having one during Covid in 2021.This mammogram was normal, so it was quite a shock to be diagnosed with cancer only a year later that was advanced in size and in my lymph nodes.
I learned that my cancer was identified as very slow growing, which is typical of lobular cancer. Given the slow growth, size, and extent of the spread to the lymph nodes, my cancer was likely present in my breast for years and many mammograms before it showed as a very faint, possible issue in 2022. The good news is that with the slow growing aspect of lobular and being post-menopausal, I did not need chemotherapy and am able to take advantage of a newer medication for higher risk, node positive patients, to reduce the risk of recurrence.
The Problem with Dense Breasts
Having dense breasts makes it harder to detect cancer on imaging. The fibroglandular tissue that makes up dense breasts shows as white on a mammogram while cancer also appears white. This white-on-white imagery obscures cancers. In breasts that are not dense and composed primarily of fat tissue, the image appears black, so the white image of cancer shows more readily in contrast. Close to 50% of all women have dense breasts, although the percentage declines by age, and about 25% of all women over 65 have dense breasts. Research shows that black women are more likely to have higher breast density than white women.
The difficulty when you add in lobular cancer, in which the cells grow in straight lines and is often absent on imaging, is sometimes described as trying to find a snowflake on a snow-person — in other words, virtually impossible! The detection rate of finding lobular cancer in dense breasts on a standard mammogram is estimated to be only slightly better than 50%. Having dense breasts also increases the risk of getting breast cancer, with an estimated 2.8 to 4 times the rate of non-dense breasts (depending upon the level of density with increasing density and increasing risk).
Fortunately, a new federal law went into effect on September 10, 2024, in which patients must be notified if their breasts are either “dense” or “not dense,” and that density “makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer.” While most states already have a requirement about density notification, this new law standardizes it nationally.
The new FDA national reporting requirement for density also suggests individuals consider getting additional imaging tests if they have dense breasts and given the low sensitivity of standard mammograms. Ultrasonography is known to slightly increase the rate of cancer detection in dense breasts and MRI is known to significantly increase the rate of detection in dense breasts. There is, however, high variability across health plans and providers regarding additional imaging for dense breasts beyond routine mammogram screening.
In addition, guidance from DenseBreasts.org is to get a 3-d mammogram, which increases cancer detection by 1 to 2 cancers per thousand individuals screened. This may not sound like much – but given that only 5 individuals will be found to have cancer from mammography screening per 1000 screened, this is a 20-40% increase for 3-d mammograms vs. the standard 2-d mammograms.
(Deborah’s story continued) In my situation, after I got called back from my screening mammogram for a possible finding, they then did the 3-d mammogram. I was asked if I had recently had chest trauma because so much had lit up on the scan. Because I had not experienced chest trauma, I knew this was not a good sign and the subsequent ultrasound guided biopsy confirmed my cancer diagnosis. This also reinforced for me the value of getting 3-d mammograms.
We both feel fortunate that our breast cancer was caught in earlier stages. We also feel so grateful to have met each other through patient advocacy work in Washington DC at the National Breast Cancer Coalition (NBCC) Leadership Summit meeting. We find purpose in patient advocacy work and leveraging The Carol Emmott Foundation learnings around leadership and networking to work toward ending breast cancer for all.
We encourage all women to pay attention to changes in their breasts and advocate for themselves and appropriate care and imaging.
For more information, please refer to: https://www.fda.gov/radiation-emitting-products/mammography-quality-standards-act-mqsa-and-mqsa-program/important-information-final-rule-amend-mammography-quality-standards-act-mqsa; https://lobularbreastcancer.org/; and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5939658/.
Photo of Deborah and Brenda at NBCC Project Lead Training in July 2024 (Note: Project LEAD is a week long training program for breast cancer patient advocates in research advocacy to ensure that researchers and major grant programs are patient focused and centered).