By DIANE XAVIER
The Dallas Examiner
When it comes to breast health, African American women face more challenges than other racial groups. Black women have a 31% breast cancer mortality rate, which is the highest of any U.S. racial or ethnic group, according to the latest statistics from Breast Cancer Prevention Partners.
In order to help Black women with this health issue, Sisters Network Inc., a national African American Breast Cancer survivorship organization, hosted a zoom webinar called, Leadership & Survivorship Conference Series #3: Know Your HER Story, Ask The Doctor.
The online conference was held Jan. 22 and featured Dr. Vivian Bea, chief of Breast Surgical Oncology at New York-Presbyterian Brooklyn Methodist Hospital; Karen Jackson, founder and CEO of Sisters Network Inc.; and Caleen Allen, vice president of National Partnerships and Communications of Sisters Network Inc.
“I have good news to share,” Jackson said. “The good news is we get to praise God that we’re all here again another day to come together in sisterhood. The spotlight is shining bright for the Black breast cancer crisis. It is a great time to be Black in America. The health institutional injustices that we all face at different levels has now become apparently clear to others. What we know others are now understanding is that we find ourselves in some of the institutions that we all go to. I applaud you and thank each and every member of the Sisters Network affiliate chapters for your powerful impact on me and fighting for Black health in the local communities across the country. As a survivor myself, an advocate and leader and author, I have spent a quarter of a century fighting the good fight to bring Black breast cancer to the forefront.”
Sisters Network, established in 1994 by Jackson, is headquartered in Houston and has 25 chapters and local affiliates in cities all across the United States.
Know your body
Bea gave her presentation on breast cancer health for Black women. Her research efforts have focused on modifiable risk factors and outcomes in ethnic populations and her primary work has been to bridge the gap between multidisciplinary breast cancer treatment and community barriers.
“We often talk about breast disparities and when I come in this setting and in this forum, it’s just beautiful to be surrounded by other women of color so that I can exercise what I believe is my purpose in finding and eliminating breast disparities,” Bea said.
Bea explained that breast cancer is the leading cause of new cancers and the second leading cause of cancer related deaths in women in the U.S.
“We should know, and I often say it’s important to not underestimate the importance of going through the signs and symptoms for breast cancer,” Bea said. “We need to constantly remind ourselves and family members and ask them, ‘Did you get your mammogram?’ and educate them about the signs and symptoms of breast cancer,”
She listed symptom, such as:
- A change breast size.
- Nipple discharge.
- A change in the nipple, like retraction.
- Skin irritation.
- Breast swelling and thickening.
- Dimpling of the breast
“If your breast starts looking like an orange, that’s not what’s normal,” she added.
Other signs could include a lump or swelling under the arm.
Bea reported that Black women are 40% more likely to die from breast cancer.
“Now, that doesn’t mean that we are always going to die if you’re diagnosed with breast cancer,” she said. “That’s why it’s important to know your history as well as to get screened. But, we know that the breast cancer burden of Black Americans is at higher mortality rates due to advanced age, even stage a diagnosis at younger ages and often having what we call a triple negative breast cancer which returns a worse prognosis.”
She said the incidence of breast cancer over the years has sort of stayed steady.
“We know that the divide and mortality for Black and White women certainly has happened,” Bea said. “It’s happened over the years since the 1980s, where treatment therapies were actually geared more towards the tumor biology of White women. My goal here is really just to talk to you about what we can do to equip ourselves to combat the breast disparities crisis. We know that this crisis by factor is deep into the triple negative breast cancer that we are often diagnosed with. You can’t control that we know that due to social, economic status and social determinants of health. Oftentimes, we cannot control those comorbidities. I think we know that we have to eat healthy and do better, just as a race, but sometimes you can’t control that. Screening is something that we can control.”
She stressed the importance of Black women to get screened for breast cancer even if there is medical mistrust.
“Medical mistrust is something that I have dedicated my career to, to sort of combating because medical mistrust exists and exists for a reason,” she said. “As the Black woman who sits at the table, I make it my duty to speak up so that my White counterparts and others who are there can understand that we have to do better within the medical field to gain that trust and to be trustworthy.”
Bea explained that one must know about the etiology and risk factors associated with breast cancer. She said there are two main causes of breast cancer.
“It can be due to individual issues such as the environment and unknown factors, but we also note that there’s a hereditary component to breast cancer,” she said. “The vast majority of breast cancers, to be clear, are sporadic, meaning they happen without a known family history. I can’t tell you how many times I hear patients come in who have been diagnosed with breast cancer and they say, well, nobody else in my family had breast cancer. That actually is the majority of the time no one in your family will have breast cancer. But if you do have a history of breast cancer, ovarian cancer or other cancers in your family, it’s important that we know that because we know that there is potential risk associated with that.”
Another risk factor for breast cancer is having dense breasts, according to Bea.
“When it comes to dense breasts, I want to stress the importance of being your own advocate to get an ultrasound and sometimes an MRI,” Bea said.
There are other risk factors that are modifiable, meaning things that we can take control of such as alcohol use, smoking tobacco, of course, we know those, but also understanding family history.”
Bea then discussed the Black cancer burden and how social determinants play a role.
“The role of social determinants of health inequalities and certainly the role of social determinants on breast inequalities centers on racism in this country, and it has led to socio-economic issues,” Bea said. “We cannot be silent about it. We cannot sort of ignore it and continue to blame Black and Brown individuals as to why we are dying at alarming rates from cancers and other comorbidities and environmental exposure that we are subjected to. It is all centered on racism ….”
Bea said some access to health services is centered on racism but there is a way around it by becoming empowered by getting informed about breast cancer and educated on patient’s rights.
History of Black health care
Bea said Black women should know their past family medical history to understand why things are the way they are today.
“If you don’t know where we’ve come from, then you don’t know where you go,” she said. “This is why it’s important to know the history or the history of it all so that we can combat and be our biggest advocates. Part of that is knowing your family history and knowing that if you have first degree relatives with breast cancer, you have a twofold increased risk of having a genetic mutation. We know that genetic mutations again only account for about five to 10% of all breast cancers. And that hereditary breast cancer is associated with young age. Again, Black women are often diagnosed at a young age. Triple negative breast cancer, again, we are often diagnosed with negative breast cancer.”
She encouraged Black women to do genetic testing as well.
“I serve a very diverse population, and I’m actually publishing soon some data that supports the fact that when we provide access to genetic testing for Black women. That all the time do we find these genetic mutations, there may be a substantial family history, and a lot of that goes back to the racism and the inability to have access to those testings and those mutations have been identified many years ago,” she explained. “I treat those patients very aggressively, meaning I screen them and follow the observed breast very closely.”
There are also other gene mutations that should also be checked, according to Bea.
“There are extended panels that you should have access to when speaking with a genetic counselor,” she said. “It’s important that we identify those who have genetic risks because we may do something different, right? If I find that you have a genetic mutation, I may be talking to you about looking at your breast more often with an MRI every six months or coming in to get a clinical breast exam. I may be talking to you about a prophylactic mastectomy or removing the breast to decrease your risk of developing future breast cancer. There are things that actually you can be empowered.”
The sooner, the better
Bea encouraged Black women to get breast screenings early.
“But, you may have heard some organizations say, ‘Oh, you can start screening at the age of 45.’ or you know, ‘Every couple of years,’” she stated. “To be clear, that does not apply to Black women. So, we want you to get screened at the very least at the age of 40 and sometimes earlier. To start with, all Black women should have a risk assessment at the age of 30 to determine if you are at a higher risk and you should have a mammogram sooner than that. Certainly, if you have a family history of breast cancer, or other cancers, seeing a genetic counselor or breast specialist to help determine your risk, sort of having more things done before the age of 30 is going to be important.”
She also highlighted the importance of Black women who are 65 and over continuing their breast health exams.
Trial and error
Bea also discussed the issue of Black people treated unfairly in past clinical trials. However, she said modern testing has advanced, and it is imperative for Black women to participate in such clinical trials.
“We know that clinical trials in this day and age are a way and avenue for us to be represented as to actually receive the latest treatments,” she said. “If you think about it like this, any person or any researcher who is putting their name on a clinical trial, they want to see it. So, they’re going to make sure that you are receiving all of the therapies and treatments on time. And they’re going to be following you and any adverse effects because they want to be able to say, well this x, y and z works. I really encourage people to participate in clinical trials so that we are represented.”
In closing, she focused on nutrition and supplements. She said there are vitamins and supplements that you should and can take, and some that should be avoided. Though she didn’t name any specifically, she did encourage attendees to have a conversation with their doctor to get recommendations.
“I will say that for Black women, we are notoriously low in vitamin D. And we know that there’s some studies out there that support having adequate vitamin D levels for energy,” she said.
Bea also answered a few questions from the audience.
Question: How does the medical community engage with patients at community level to enhance diversity and inclusion and clinical trials?
Bea: I think part of that is centered on the fact that we have to be trustworthy. There’re multiple factors that you have a systemic part, and you have a patient level factor. They also have clinicians, and the system has to address the fact that there are historical issues that exist in and really make an effort to go out to the community to engage and to show that you know, that clinical trials are important, and you want to go to trial is also important. But as individuals, seek out these clinical trials, we have to know that these are our rights, quite frankly. So being empowered you know, you can go into a hospital system, and they may never do that. As clinicians, we have to engage the community. But we also have to build our trustworthiness.
Q: Do women need to be genetically tested every few years if she has already taken a genetic test?
Bea: Not every few years. The first thing is, I always ask where did you have it? Did you have to have a genetic counselor, someone who’s actually going to be following up with any changes to that genetic panel, because every year, it does change. You know, two to three years you’re speaking to a genetic counselor or a breast specialist so that they can look at where you had tested and what type of testing you had.
Bea said information about where one can find resources for clinical trials that focus on Black breast cancer survivors can be found at ClinicalTrials.gov.