By Leslie Ferris Yerger, CEO and Founder of My Density Matters

Today is Metastatic Breast Cancer Day, and as a metastatic breast cancer thriver I am happy to see some attention paid to this mostly ignored yet deadly stage of breast cancer. Despite metastatic breast cancer being a leading cause of cancer death in women, only about 2-5% of the funds raised for breast cancer research is spent on studies of the metastasis¹. This is why it is so important to raise awareness of this type of cancer.

I worry constantly about women with metastatic breast cancer. Are they in pain? Are they sad or depressed? What about their children? Why did this have to happen? And how many more women will reach the final stage of breast cancer – metastatic?

I am the founder of My Density Matters, a nonprofit organization on a mission to empower women to find out their breast density, learn their options, and take charge of their breast cancer screening so their cancer can be found early, while still curable. Breast density is a significant risk factor for developing breast cancer², and makes it harder for radiologists to see cancer on mammograms, therefore potentially hindering early diagnosis. As the mantra goes, earlier diagnoses save lives as explained here by the American Cancer Society and hence the need for organizations like mine.

Many breast cancers are undetected by mammography alone and additional screening is required to find those cancers missed.³ We usually talk about this in terms of percentages missed, or ‘a number’ per 1000 women with dense breasts screened, and those figures vary quite a bit depending upon what study you look at, and all of the nuances involved.

But, exactly how many women is that? How many women who get their mammograms have their cancer go undetected? I have not seen it discussed or estimated in that way, until now.

A new study published by Matthew Covington, MD from the Department of Radiology at the University of Utah estimates that 267,000 women (for the year 2021) who got their mammograms were not diagnosed due to their breast density when they actually do have breast cancer (commonly known as a false negative), leaving their cancer to likely advance to a later stage, and possibly to the metastatic stage. The contrast of this ‘undiagnosed’ estimate to the number of estimated 287,850 invasive breast cancers diagnosed in 2022 is startling. 

That’s a lot of women! Will you or someone you love be one of them? How many of those delayed diagnoses will wind up at Stage IV, metastatic, which is the stage from which one dies from breast cancer?

We can quibble about the number presented here or the calculations all we want, and likely someone will, but this study shines a much needed harsh light on the fact that a lot of cancer slips through mammography screening, and the consequences are dire.

And yet the FDA has still not come out with updated recommended language regarding breast density. The various ‘recommending’ bodies do not agree. And the American College of Gynecology does not recommend any additional screening for those with dense breasts.

Now I am even more worried about women today and tomorrow with metastatic breast cancer. Will they be in pain? Will they be sad or depressed? What about their children?

Why are we letting this happen?

References:

1. https://www.metavivor.org/research/#:~:text=However%2C%20the%20biggest%20obstacle%20is%20lack%20of%20funding%3A,of%20these%20diagnoses%20are%20metastatic%2C%20or%20stage%204.
2. Boyd NF, Guo H, Martin LJ, et al. Mammographic density and the risk and detection of breast cancer. N Engl J Med. 356(3):227-36, 2007
3. Wendie A. Berg, MD, PhD, Elizabeth A. Rafferty, MD, Sarah M. Friedewald, MD, Carrie B. Hruska, PhD, Habib Rahbar, MD. Screening Algorithms in Dense Breasts: AJR Expert Panel Narrative Review. American Journal of Roentgenology. 2021;216: 275-294. 10.2214/AJR.20.24436