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Getting Access to the Best TNBC Treatment for You: What Women of Color Should Know (VIDEO)

Medically reviewed by Yuan Yuan, M.D., Ph.D.
Written by Kelly Crumrin
Posted on March 12, 2024

Transcript

00:00:00:00 - 00:00:31:06
Dr. Monique Gary
I want women to know that you can live despite a diagnosis and you can thrive even with a diagnosis. I have friends who have had triple-negative breast cancer, metastatic triple-negative breast cancer, stage four who are living 10, 15, 20, 25, 27 years with metastatic TNBC. My name is Dr. Monique Gary. I am a breast surgical oncologist, and I'm the medical director of the cancer program at Grand View Health in Sellersville, Pennsylvania. To ensure that patients with TNBC have the best treatment options,

00:00:31:06 - 00:00:56:17
Dr. Monique Gary
There are some tests that they should undergo, and the first test is always the hormone receptor test. Beyond that, patients should be offered a full workup, including a metastatic workup. That might be things like MRI, PET scans, ultrasounds. We want to make sure that we fully diagnose the patient, and the last thing that every person with triple-negative breast cancer should be offered is genetic testing.

00:00:56:19 - 00:01:20:00
Dr. Monique Gary
Genetic testing not only looks for hereditary causes of disease, but when we find those mutations, it can have important implications for their treatment, so we can help to personalize the medicine even further. Unfortunately, we know that Black and brown women are not offered genetic testing at the same rate as their white counterparts, and this is a disparity that we can fix.

00:01:20:02 - 00:01:44:05
Dr. Monique Gary
There's a lot of misinformation about the diagnosis, and there's some distrust about the treatment options as well. That isn't always unique to people of color, but what we do know is that Black women, in particular, face a nearly 40% higher mortality from triple-negative breast cancers. My top tips, especially for Black and brown women: number one, you've got to have an advocate with you.

00:01:44:07 - 00:02:02:22
Dr. Monique Gary
It helps so much when you bring someone who can ask questions, who can write down their response to the questions from the research you've done at home. It's important to slow that doctor down and give them an opportunity to say, “Hey, listen, doc, what would you do if I were your mother, or your sister, or your family member?”

00:02:02:23 - 00:02:30:00
Dr. Monique Gary
Number two, never assume that what you're being offered is all there is. You can always ask for treatment options. You can always ask for a second opinion. Know you're not alone. The last thing is you should find really reliable, validated information online that speaks to not only triple-negative breast cancer, but that speak to the experience of women of color facing a diagnosis of triple-negative breast cancer.

00:02:30:02 - 00:02:55:02
Dr. Monique Gary
My advice for women is to stay optimistic, to know that there are more treatment options than ever before, and we're working to make the medicine more and more personalized, but we need help and we need everyone's participation. This is a very personal mission for me, and I hope that people know there are clinicians out there who are dedicating their entire lives to surgery, to medications, and treatment options.

00:02:55:03 - 00:03:06:07
Dr. Monique Gary
We're all here working to not only do the best treatment we can, but really find a cure for this, and I want people to feel encouraged by that.


In the U.S., Hispanic and Black women carry a heavier burden when it comes to triple-negative breast cancer (TNBC). These groups are more likely to be diagnosed with TNBC than non-Hispanic white women. They also have a higher chance of diagnosis at a younger age and at a more advanced stage, when cancer has spread. Given these odds, it’s vital for women of color to know what they need to do to get access to the best treatments for TNBC.

To find out how women of color can make sure they’re getting the best TNBC treatment options, MyBCTeam talked with Dr. Monique Gary and Dr. Yuan Yuan. Dr. Gary is a breast surgical oncologist and medical director of the cancer program at Grand View Health in Sellersville, Pennsylvania. Dr. Yuan is a breast medical oncologist and director of breast cancer oncology at Cedars-Sinai Medical Center in Los Angeles.

Here are the top recommendations from these doctors on accessing the most effective TNBC treatment tailored to your needs.

Take Someone With You

Dr. Gary emphasized the importance of taking a friend or loved one to doctors’ appointments for TNBC. Not only can this person provide emotional support, they can also help advocate for you.

“It helps so much when you bring someone who can ask questions, who can write down the responses to the questions from the research you’ve done at home, and who can say, ‘Wait a minute, Doctor, did I hear you say X, Y, or Z?’” she explained.

Make Sure You Get the Testing You Need

Both doctors agreed that proper testing is vital for ensuring that women diagnosed with TNBC receive the best treatment. These tests should include genetic testing of breast cancer cells. “Unfortunately, we know that Black and brown women are not offered genetic testing at the same rate as their white counterparts,” Dr. Gary said.

“Genetic testing not only looks for hereditary causes of disease — we know that people who have TNBC have a higher incidence of those hereditary mutations that get passed down from generation to generation — but when we find those mutations, it can have important implications for treatment,” she said.

“Never assume that what you’re being offered is all there is.”
— Dr. Monique Gary

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“TNBC is not one disease,” explained Dr. Yuan. “There are at least four to six different subtypes with a variety of mutations. All of those details are critical to tailoring the type of treatment they’re going to get. That’s why everybody who has a diagnosis of metastatic TNBC should get genomic testing.”

If you haven’t been offered genetic testing for your breast cancer cells, request it from your oncologist.

Ask for More Treatment Options

“Never assume that what you’re being offered is all there is and that’s the final say,” advised Dr. Gary. “You can always ask to see guidelines.”

In recent years, research has made advances in targeted therapies and more tailored treatment plans for women with TNBC. Make sure you know all your treatment options, and ask questions until you feel confident that you understand the risks and benefits of each.

Get a Second Opinion

The same goes for your doctor. “If you don’t feel partnered with or if you have additional questions — or even if it’s in the back of your mind ‘maybe I should see someone else’ — you should, and you can,” Dr. Gary stated. “You can always ask for a second opinion, and many cancer programs can help you to facilitate that second opinion.”

If you haven’t been offered genetic testing for your breast cancer cells, request it from your oncologist.

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If You Can, Choose a Larger Cancer Center

Not everyone has much choice when it comes to where they treat their cancer. Depending on where you live and what type of insurance you have, you may only have one option. However, Dr. Yuan suggested that if you have the ability, try to choose a comprehensive cancer center that offers multidisciplinary care and clinical trials to get the best care and more treatment options: “Seeking out a comprehensive cancer center may give you options beyond standard care. When it comes to breast cancer, it’s not a one-man show. Look for a good team with specific breast cancer expertise that fits your needs.”

She pointed out that a multidisciplinary breast cancer care team should include a medical oncologist, specialist breast oncology surgeons, and reconstructive plastic surgeons who all communicate and work well together.

Consider Joining a Clinical Trial

Both doctors recommended that women with TNBC consider participating in a research study for new treatments, especially for those with stage 4 disease. TNBC tends to be a more aggressive, faster-growing form of breast cancer.

"The earlier you’re looking into clinical trial options, the better.”
— Dr. Yuan Yuan

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“It’s very important to look into clinical trials and beyond the standard of care,” Dr. Yuan explained. “Stage 4 triple-negative breast cancer is largely an incurable disease, often becoming resistant to chemotherapy. The earlier you’re looking into clinical trial options, the better.”

Don’t Believe Misperceptions About Clinical Studies

“There are misperceptions and myths about trials,” acknowledged Dr. Gary. “When you’re part of a clinical trial, you’re going to get the highest level of care, you’re going to get more attention, you’re going to get more frequent scans sometimes because we really want to make sure that the treatments are working. And the most important thing for people to know is that you’ll never get less than the standard of care. There’s no sugar pill in these types of trials.”

If you’re interested in finding out about clinical trials you may be eligible to join, talk to your breast cancer specialist.

Find Out if Side Effects Can Be Prevented or Managed

Once you know what treatments you’ll be getting for TNBC, be sure to ask about side effects and how they can be prevented or managed. For instance, if your treatment can affect fertility, you may want to plan to freeze eggs or embryos to preserve your options in the future.

“We’ve recently seen more young patients come in, never having had children,” Dr. Yuan explained. “We always like to refer our patients to a reproductive endocrinologist for discussion of fertility preservation prior to systemic chemotherapy. The specialist can talk to them about potential methods, risk, and time frames.”

Another example is hair loss from chemotherapy. “For certain regimens in certain places, patients have the option of wearing a cooling cap to minimize hair loss or alopecia,” Dr. Yuan said.

Asking about side effects and ways to manage them in advance can help you know what to expect and be as prepared as possible.

Stay Optimistic

Finally, both Dr. Yuan and Dr. Gary urged women diagnosed with TNBC to remain hopeful.

“My advice for women is to stay optimistic,” said Dr. Gary. “There are more treatment options than ever before, and we’re working to make the medicine more and more personalized.”

“I tell my patients there’s always hope,” Dr. Yuan said.

A big part of staying hopeful is getting support. “It’s OK to talk to your family about this diagnosis because it impacts their health and their health journey,” Dr. Gary said. “And it’s important for you to make sure that you allow your family to show up for you and to be a support for you — and to know that you don’t have to travel this road alone.”

Talk With Others Who Understand

MyBCTeam is the social network for people with breast cancer and their loved ones. On MyBCTeam, more than 69,000 members come together to ask questions, give advice, and share their stories with others who understand life with breast cancer.

Have you or a family member been diagnosed with TNBC? Have you had to advocate for better treatment options for your breast cancer? Share your experiences in the comments below, or start a conversation by posting on your Activities page.

    Posted on March 12, 2024
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    Yuan Yuan, M.D., Ph.D. is a breast medical oncologist and physician-scientist who specializes in triple-negative breast cancer (TNBC) and breast cancer immunotherapy. Learn more about her here.
    Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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