Jasmine Souers was 25 when she noticed a discharge from her nipples. Worried, she went to have it checked out. At first, her doctors rejected the possibility of breast cancer, saying she was “too young”.
She didn’t feel any lumps. A mammogram – a type of chest x-ray – and an ultrasound – a scan that uses sound waves – didn’t show any signs of cancer. Her doctor believed the discharge was caused by an infection and gave her antibiotics.
Six months later, Souers went to a gynecologist. A native of Jacksonville, FL, was 2 years into their marriage considering raising a family. But she was adamant about the discharge, which had become bloody by this point.
“I said, ‘I really think we need to check this out before we go any further,'” said Souers. After the doctor referred her to a specialist, a breast MRI confirmed multiple tumors and stage I breast cancer.
“It was a chaotic time,” recalls Souers.
Souers is one of the many black women who are younger than 45 years of age and who develop breast cancer at a disproportionately high rate in the United States
“”There are a number of breast cancer differences that are really sobering when it comes to why the results for black women are significantly worse than for white women, “says Dr. Dorraya El-Ashry, chief scientist for Breast Cancer Research Foundation.
Breast cancer is the second leading cause of death among women in the United States. It affects 1 in 8 women and 1 in 39 women dies from the disease.
Breast cancer numbers have declined in recent years due to better treatments and early detection. But they are still high for black women compared to white women.
While research shows that white women are more likely to develop breast cancer than any other race, the death rate for black women is 40% higher.
Black women are also more likely to develop cancer earlier in life and are twice as likely to be diagnosed with aggressive cancers as triple negative breast cancer.
Black women are also more likely to be diagnosed with late-stage breast cancer than white women.
What is behind the race gap?
Research shows that poverty, social injustice and structural racism can play a large role in the different effects breast cancer has on black and white women.
Regardless of race, low-income women are less likely to have regular checkups, treatments, and follow-ups. Research shows that more women of color, especially Spanish and black women, live in poverty than whites.
Lower income can affect access to health insurance and quality health care. Also, if you have financial problems, you may not be able to keep up with a healthy diet and lifestyle. For example, tobacco use and obesity can increase the likelihood of developing breast cancer.
El-Ashry says genes could play a role too. She says research shows that black women are more likely than whites to have BRCA1 and BRCA2 mutations – changes in genes that make you more likely to develop breast cancer.
Experts say that black Americans also tend to have higher levels of distrust of medical authorities. This is usually due to the legacy of discrimination and racism that the community has faced in the past.
Lack of “representation” in the breast cancer community
For black women with breast cancer, finding a community to identify with is sometimes a problem. Souers found this to be true when she sought information about the operation.
Following her diagnosis of breast cancer, Souers said she was looking for the “path of least resistance” to make sure the cancer doesn’t come back. She decided to have a bilateral mastectomy. In this procedure, a surgeon removes both breasts.
Before the operation, Souers was curious what her breasts would look like afterwards. When she did a simple google search to see what black women with bilateral mastectomy look like, images of mostly white women came up.
“My antennae go up. Don’t black women get double mastectomies? Do they have bad doctors? Do my doctors ask me to do something that other black women don’t? All of that made me anxious,” says Souers.
Marissa Thomas, a 41-year-old from Tacoma, WA, had a similar experience after being diagnosed with stage II breast cancer in November 2015. The following year, she had “the full range of treatment” – a lumpectomy (removal of part of the breast), chemotherapy, radiation, and two breast reconstruction surgeries.
During that difficult time, Thomas said she “didn’t see anyone who … looked like me, who was being treated. I knew they were out there, but I was just trying to connect with them and get one online -Self-help group – only there was nobody out there, “says Thomas.
Thanks to the internet, Thomas and Souers connected online on Instagram. The two later met in person at a meeting where they discovered they had a lot in common. The two women discovered that women with breast cancer had no community and together they formed a group called For the Breast of Us.
The group’s mission, says Thomas, is to empower and empower women with breast cancer with the tools necessary to stand up for themselves on the bumpy medical path. Today, the group’s private Facebook page has over 700 members who reach out to the community to advocate, support, and empower them.
Little participation in clinical trials
One of the core tasks at For the Breast of Us, according to Thomas, is “wanting to know why many women of color are not part of clinical trials” when it comes to breast cancer.
Clinical trials are studies in which scientists learn how well new treatments work. It is another area where black women are significantly less represented than white women.
“They [Black women] They have fewer opportunities to take part in clinical trials and they take less part in clinical research and other types of research, “says El-Ashry.
Blacks make up just 6.2% of clinical trial participants, Asians 3.3%, Hispanics 2.2% and Native Americans 0.1%.
“I think, like everything else, it’s a complex picture. Even in clinical trials, when people are in poor health due to comorbidity [underlying] Conditions, they are less likely to be included in a clinical trial. And since there is a greater proportion of it in the black breast cancer community, this can lead to it, “says El-Ashry.
El-Ashry says it is also a matter of consciousness. “Awareness of the importance of clinical trials and even the ability to be on site at a location that is involved in clinical trials, for example. So it’s about the level of access and representation.”
Change approach
Current guidelines state that women between the ages of 45 and 54 should have a mammogram every year to check for breast cancer. Women between 40 and 44 have the option to have a scan every 2 years, while women over 55 can choose to continue the scans every year or opt for every 2 years.
If you have a family history or genetics that increase your risk of breast cancer, talk to your doctor about an MRI along with the mammogram. As women of skin color are diagnosed with more aggressive cancer in later stages, El-Ashry says the researchers are investigating whether changing screening guidelines will bring any benefits. A new study is looking to find out if screening guidelines should focus more on whether people are at specific risk for breast cancer than on your age.
“I think this is definitely an area that the field is moving into with the idea that if we could understand your risk, we would develop guidelines for that risk,” says El-Ashry.
Some of the things that increase your chances of getting breast cancer include poor diet, alcohol use, obesity, tobacco use, family history, and gene mutations.
Open communication
By paying close attention to the needs of women with skin color, doctors can help fill the racial gap in breast cancer care, Thomas said.
“Listen to your patients, especially your black and brown patients,” says Thomas. “I don’t think many providers listen fully to their patients. They don’t know where they might be neglected.”
Thomas also says doctors might also consider connecting their patients with other patient advocates or patient navigators in their community. This is so that they have someone to fall back on in case they simply cannot relate to their health care providers or just want someone to break it down on them in layman terms. “
“One thing I want to say to the medical community is to check their prejudice at the door. We all come with prejudice, but make sure you don’t take this into the care of the patients you care for,” says Thomas .
Souers says it also needs allies in the breast cancer community who do not identify as women of color to use their privilege and platform to expose the injustices that are being experienced by women of color with breast cancer. Through their lobbying, Souers and Thomas created an accomplice guide – a list of pros and cons to improve and expand the narratives of women of skin color in the community, and to share access to care resources and information they share otherwise may not have.
Closing the gap
For the past 30 years, research has helped reduce the death rate from breast cancer by about 40%. However, white women in the community have largely benefited from this.
“What we need is that we can influence this gap in the disparities here, and that will come from research and that will come from deeper investment in disparity research, and that in turn costs money and will,” says El-Ashry.
The racial gap ravages color communities. Souers says it’s about doing everything possible to at least improve the playing field.
“At some point, what are we going to do? Women are dying. We can’t tell you how many friends we’ve lost in the past few months. Women are dying. They deserve better. Their parents, their children, their partners – they deserve it better. And we have to have some conversations to actually come up with a plan with which we can manage that when we die we die at least at the same rate. Not far beyond everyone else, “says Souers.
swell
SWELL:
American Cancer Society: “Breast Cancer”, “Breast Cancer Facts & Figures 2019-2020”.
Healio: “Efforts to recruit more minorities for clinical trials are becoming a ‘national priority’.”
NIH: “Health and Racial Disparity in Breast Cancer.”
AJMC: “Black breast cancer patients may have longer waiting times and longer treatment times.”
Dorraya El-Ashry, PhD, Scientific Director of the Breast Cancer Research Foundation.
Jasmine Souers, Jacksonville, FL, co-founder of For the Breast of Us.
Marissa Thomas, Tacoma, WA, co-founder of For the Breast of Us.
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