Raise Your Voice About Your Metastatic Breast Cancer

You can also ask:

• Who should I contact about side effects and symptoms?
• What should my caregiver expect?
• What will we do if this treatment doesn’t work?
• Can I join a clinical trial?

If your doctor dismisses any of your concerns, “ask them to tell you why,” Ko says. “Then you still get your question answered.”

Avan Armaghani, MD, a breast oncologist with Moffitt Cancer Center, says to bring a friend or family member along. Brief them on everything you want to discuss and ask them to take notes. “Having that extra set of ears is vital.”

Ask Follow-Up Questions

Metastatic breast cancer is a complex illness. But you should leave your visit with a good understanding of your diagnosis, treatment options, and what to expect from an advanced disease, Silber says.

Ask for more explanation if something doesn’t make sense, even if it means your doctor has to repeat themselves. And if you run out of time at one appointment, “it may mean that the initial visit needs to be broken into two visits,” Silber says.

Ask your doctor to use simpler language if they say a medical term you don’t understand. “A lot of times we get caught up in talking about pathology,” Armaghani says.

Be Honest About Your Life Situation

You should “introduce yourself” the first time you meet your cancer doctor, Silber says. “I don’t mean by saying your name, but what are your concerns and your barriers?”

Big and little things can affect the timing and quality of your metastatic breast cancer treatment. You may not be able to control all of them. But your doctor won’t know what’s standing in your way if you don’t tell them.

Ask if there’s a social worker or patient navigator on your cancer care team. Silber says some things they can help you with include:

• Child care or eldercare
• Transportation to and from treatment
• Help getting a medical excuse from work
• Issues around disability or housing discrimination
• Financial help to cover health care costs

Breast cancer treatment is covered under Medicaid, Medicare, and private insurers. But tell your doctor if you don’t have much or any health coverage. There are programs and clinics that work with people who are underinsured and uninsured.

Ask About National Treatment Guidelines

Grace Suh, MD, medical director at the Northwestern Medicine Cancer Center Delnor, says she understands why people are worried their race or ethnicity might affect their treatment. Studies show people of color often get a lower quality of care compared to other races.

It’s OK to ask your doctor to show you the typical standard of care for the kind of breast cancer you have.

“I try to bring in objective treatment guidelines that are accessible to everybody, not just doctors or people who have money,” Suh says, “so they feel comfortable that they’re receiving the proper care that’s expected for their condition.”

Tell Your Doctor What’s on Your Mind

It’s important for your doctor to know where you’re coming from, Suh says, especially if you don’t share the same racial, cultural, or ethnic background.

In a respectful way, you can:

• Talk about your values and beliefs. Discuss any complementary or alternative medicine choices you’d like to try. Tell your doctor if you have fears about traditional cancer treatments, such as chemotherapy, radiation, or surgery. Give them a chance to explain why they want you to try one treatment over another.
• Name your feelings. When emotion is high, Ko says, it can be hard to process what your doctor is telling you. Tell them if you’re afraid, scared, or mad. It may be easier to communicate if they know your state of mind. 
• Bring up racial bias. It’s OK to discuss issues around race. Feel free to open up about negative health care experiences that you or your loved ones have had in the past. “If someone says, ‘My mother died of cancer and the doctors were horrible. They let her die in pain,’” Silber says, “that’s something I need to know.”

Ask for an Interpreter

People who are not native English speakers often have trouble accessing health care services. On top of that, if you’re from another culture or country, you may not know what’s appropriate to ask a doctor in the U.S.

An interpreter who speaks your language can help “open up the dialogue,” Suh says.

“Over time, that can put the patient at ease,” Suh says, “and help them feel comfortable about bringing up topics that are very difficult and, culturally, may have felt couldn’t be answered in their own countries.”

By law, most doctors have to provide a trained interpreter for people who have limited English proficiency (LEP). It’s not something you need to pay extra for or find on your own. But you’ll need to let someone on your cancer care team know you or a loved one need LEP services.

Advocate for Yourself

Think of the relationship with your doctor as a partnership. They have a lot of expertise in breast cancer, Ko says, but you’re an expert in your own experience. “In that sense, there are at least two authorities in the room,” she says.

But if you feel like your voice isn’t being heard, it may be helpful to find a different doctor.

And be honest and direct with your health care team about anything that’s bothering you. “We appreciate that feedback," Armaghani says. “It’s going to help improve the relationship and the overall treatment trajectory.”

When to Get a Second Opinion

Some evidence shows that racially “concordant” medical care may come with health benefits. For instance, studies show Black people may get better care when they go to Black doctors. But no matter who you see, there should be a sense from the get-go that your health is a priority.

“You’re dealing with a life-threatening disease. You need an ally,” Silber says. “Someone who’s disinterested in you is not an ally, regardless of their race.”

Give your doctor a chance to earn your trust. To do that, Silber says, they should:

• Introduce themselves
• Look you in the eye
• Try to make a connection about something besides cancer
• Answer your questions in a way you understand

They should also:

• Give you follow-up information when you ask for it
• Be honest about the seriousness of your illness
• Reassure you without trivializing your concerns

You can get a second or third opinion anytime you want. If you feel comfortable, ask your current doctor for a referral to someone at another clinic who specializes in metastatic breast cancer. A social worker or nurse could be another good source.

You can search for a cancer center through the website of the National Cancer Institute. Call 800-4-Cancer or chat with someone on LiveHelp.cancer.gov for more information.