Hearing the words “You have breast cancer” can turn your world upside down. Suddenly, there are appointments to schedule, test results to decipher, and urgent treatment decisions to make. You may be faced with medical terms you’ve never heard before, or options that carry life-changing implications.
But while the experience can be isolating and confusing, you don’t have to go through it passively. Experts say that patients who advocate for themselves — by asking questions, seeking out resources, and building strong relationships with their care team — often find a greater sense of clarity and control.
That’s why we turned to two patient advocates, Sarah McLean and Mari Montesano, for their best advice on how to walk into the exam room feeling more confident and empowered.
Speak up and ask questions
Going into your appointment prepared can make a real difference. Not sure where to start? The Susan G. Komen Foundation offers a sample list of questions for many situations, from deciding on surgery to testing for recurrence. The National Breast Cancer Foundation provides free guides and a patient navigator program to walk patients through the process. And Living Beyond Breast Cancer connects people through support groups and a helpline.
Community is a vital resource, too. When McLean was diagnosed with breast cancer at 25, she found the experience incredibly isolating — even with a loving partner by her side. “Sometimes you hear other people ask questions you wouldn’t have thought of, or learn about an approach that worked really well for them,” she says.
Self-advocacy also means taking those insights into the exam room and asking about the specifics of your diagnosis. Montesano, a manager with the Komen Breast Care Helpline, emphasizes the value of knowing your biopsy results, tumor grade, and hormone receptor status. These details don’t just describe your cancer — they guide your treatment plan and may even open the door to clinical trials.
“It’s really important to know all these things, because they could give you more treatment options down the road,” she says.
Communicate your goals
It’s easy to get swept into treatment plans right after a diagnosis, but it can be worth slowing down to think about what matters most to you. Montesano explains, “For some, that means fertility: Can I freeze my eggs before treatment? What are my options once chemo is done? For others, especially later in life, those questions may center on quality of life: How will this treatment make me feel day to day? Is it worth it for me at this stage of life?”
Doctors need to understand your goals so they can tailor your care accordingly. As Montesano puts it: “It’s your body, it’s your life. You deserve to have your doctor know what’s important to you.”
And if your provider isn’t listening, consider finding one who will. Montesano recalls helping a young woman with metastatic breast cancer who wanted to go on disability to spend more time with her children, but her doctor refused. She ultimately changed providers to find someone who respected her priorities.
These conversations don’t end when treatment does: Survivors often face tough decisions about reconstruction, which is a complex surgery that’s frequently misunderstood. “Reconstruction isn’t a ‘boob job’ — it’s a literal reconstruction,” McLean, founder of the nonprofit Project 31, explains. As such, a patient’s breasts often look very different after reconstruction than they did before, and the adjustment can be tough. “Surgeons try to make you look as normal as possible, but managing expectations can be hard. We know perfection isn’t realistic, but this is the body we live in for the rest of our lives.”
Bring a support person
Doctor visits can be overwhelming, but that’s especially true immediately after a doctor delivers your diagnosis. “You can see the moment someone just goes blank,” says Montesano. “They’ve just been told they have cancer, and you can tell they’re still trying to process it.”
That’s why having a friend or loved one by your side at appointments can be invaluable. They can listen when you can’t, jot down details, or step in with questions you might miss. “They can be your person to say, ‘Hey, wait, let’s stop for a second. What are the details on these different options?’” Montesano adds.
If no one is nearby, put a trusted person on speakerphone during any important appointments. And if having someone physically present matters to you, ask about a social worker or nurse navigator — professionals who are trained to guide patients and ensure you’re receiving a high standard of care.
Create trust with your doctor
Building a strong relationship with your doctor begins with open communication — asking questions and making sure you understand your treatment plan.
If your physician doesn’t seem receptive, Montesano suggests revisiting the conversation at another time, and saying something like, “I don’t mean to question your expertise, but I want to be sure you’re hearing what matters most to me.” If you still don’t feel heard, she recommends involving a social worker or even seeking a second opinion.
“The doctor–patient relationship is a two-way street,” Montesano says. “You should feel a real connection with your provider.”
As McLean points out, the emotional side of care is just as important as the medical. “Having a good rapport with your doctor matters. Sometimes women leave an appointment feeling like they weren’t cared for — that their concerns weren’t validated or that they weren’t treated as an individual,” she says.
At the end of the day, our experts agree that you deserve a provider who listens, validates your concerns, and treats you as a true partner in your care. Because when a diagnosis makes life feel chaotic, advocating for yourself can help you regain clarity and control.
