Five months ago I was diagnosed with breast cancer. And in that time, I have learned a great deal about a cancer that touches one in eight women in the country.
My case initially felt rare. I had just turned 40. No family history. And genetic testing came back normal.
You know, seemingly young and healthy.
But the reality is more people are being diagnosed with breast cancer today.
The American Cancer Society looked at the most recent decade of data, and found that breast cancer rates have been on the rise annually — with steeper increases for women under 50.
However, there is good news wrapped within that hard truth.
Breast cancer is the most funded cancer research in the country. Thanks to advancements in screenings and treatment over the past 35 years, the death rate has dropped by 44%.
But these strides benefit some groups more than others.
When broken down into demographics, the biennial report shows increases in Asian American and Pacific Islander women, as well as long standing gaps in survivability among Black women.
Breast cancer rates among Black women
Black women have long been more likely to die from breast cancer, when compared to other races and ethnicities.
They have the lowest survival for every stage of breast cancer, and a 38% higher death rate when compared to white women, who have the highest breast cancer incidence.
“That unfortunate statistic about there being a 40% mortality gap between white and Black women has existed for over 40 years,” said Dr. Veronica Jones, a breast cancer surgeon and researcher at City of Hope, a national cancer treatment organization. “Despite all of the advances, that has remained.”
Dr. Jones explained that even though breast cancer is a leader in research funding, the field is playing catchup in minority communities.
“I think one way that we got here is exclusion of diversity in clinical trials,” she said. “So a lot of what we know about breast cancer were studied in largely homogenous populations.”
Another factor: Not all breast cancer types are equal in their survivability. For example, triple negative breast cancer is aggressive, fast growing and more likely to be diagnosed at a later stage. Black women have the highest percentage of this type of disease, accounting for one in five cases, versus one in 10 in all other women.
“Some are what we consider interval cancers, meaning they can pop up between screening mammograms. And triple negative breast cancers tend to be that type,” explained Dr. Jones. “A challenge with that is when they do present, they are usually later stage just because they were missed.”
A new wave of research is now taking place and Dr. Jones is part of that change, investigating the myriad of factors that can increase the risk of breast cancer as well as create barriers to screenings and care — from societal, environmental, patient experience and lifestyle.
“Ancestry, genomic markers — there is all of these different factors that play into why disparities exist,” Dr. Jones adds. “Right now, for example, we’re looking at how social determinants of health — which is kind of the environment in which people live — impacts their gene expression and how that impacts their outcomes. We can’t look at them in isolation anymore. We are really trying to look at all of the facets of an individual and how that can perpetuate disparities in their own life.”
It can also be easy to forget that anyone can get breast cancer and barriers can be even more heightened for other genders. Black men have the highest incidence of breast cancer and the highest mortality of all racial and ethnic groups.
“A lot of effort is being done on how to make it more equitable across the board and increase awareness for what type of screenings are available for all people, and how we can make that more accessible — practically and also culturally,” said Dr. Jones.
She stressed that people should know their breast cancer risk. If there is a family history of an aggressive breast cancer, a patient may qualify for enhanced screenings every six months as opposed to annually.
Listen to Dr. Veronica Jones’ entire conversation on Insight here.
Breast cancer rates among AAPI women
At the start of the millennium, Asian American and Pacific Islander women had the lowest breast cancer rates of all races and ethnicities.
Fast forward to the recent decade of data available, AAPI women now have the fastest growing breast cancer rate, 2.6% annually between 2012-2021.
“Our breast cancer screening guidelines are really crude. It really is only based on family history and age if you think about it,” said Dr. Scarlett Lin Gomez, an epidemiologist at UC San Francisco. “And they certainly don’t account for the potential high risks that we are seeing in the most recent data.”
Dr. Gomez is the lead researcher in the first long-term cancer study in Asian Americans. She has been seeing this increase firsthand, with the most dramatic rise among women under 50.
“The increase in breast cancer has been going up at a steady rate,” she explained. “The latest data point now shows these younger Asian American Pacific Islander women having the highest breast cancer incidence rates of any racial and ethnic group. It’s certainly a very concerning trend.”
Dr. Gomez is working to understand why. One complication is that Asian Americans and Pacific Islanders are a highly diverse group, yet in research they are lumped together.
“That statistic is going to be showing you what the picture is for the most dominant group,” she explained. “The much smaller groups, they are not going to be represented. Their data are effectively masked — erased.”
That skewed picture has historically translated into a lack of research funding.
“So those statistics tend to paint a rosy picture when it comes to cancer incidence and mortality among Asian Americans collectively as a whole,” said Dr. Gomez. “Because of that, the largest federal funder — the National Institute of Health and within that the National Cancer Institute — has typically not funded cancer disparities research in Asian Americans because of this perception that the burden of cancer is very low.”
Dr. Gomez is part of new research chipping away at this understudied group, and found that breast cancer rates are also increasing in certain countries in Asia.
“One modeling analysis estimated that if the current rate of increase continues, women in Asia will soon have the highest rate of breast cancer worldwide,” Dr. Gomez said. “This is due to the very rapid rates of westernization. We see more women entering the workforce — and so therefore they are delaying childbirth, they are having fewer children, they are less likely to breastfeed. We see the proliferation of convenience and packaged foods. We see the loss of traditional cooking methods and the type of traditional foods that the families typically used to consume.”
Dr. Gomez is also researching the role that stress can play.
“We have been hearing from patients who have been diagnosed with breast cancer that stress is very important to them. That they believe that this is a major driver of their risk. And they want to know if that's true, and if so, how they can mitigate the stress.”
Another crucial piece is something that can be dismantled in our daily lives.
“In many Asian families the idea of cancer is still very much a stigma and we just don’t talk about it,” said Dr. Gomez. “But the consequence of that is we are not aware of our own family history.”
Listen to Dr. Scarlett Lin Gomez’s entire conversation on Insight here.
