Some Latina Women Feel Overloaded With Information After Breast Cancer Diagnosis

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Research has shown that race, education, and income level can affect the type of care a woman receives after she’s been diagnosed with breast cancer. For example, studies have found that black women are less likely to have genetic testing than white women. Black women are also less likely to have genomic testing -- tests that look at the genes of the cancer cells. Older women and minority women diagnosed with HER2-positive breast cancer are less likely to be treated with the targeted therapy Herceptin (chemical name: trastuzumab) than younger and white women.

Researchers call these differences in treatment “disparities in care.”

While a number of studies have looked at disparities in breast cancer care between black women and white women, there hasn’t been much research done on the experiences of Latinas diagnosed with breast cancer.

What the researchers call the largest study to date of how Latinas diagnosed with breast cancer rate their treatment options suggests that doctors and patients need to communicate better and work as partners to make treatment decisions.

The study was published online on April 11, 2017 in the journal Cancer. Read the abstract of “Treatment experiences of Latinas after diagnosis of breast cancer.”

To do the study, the researchers sent a survey to a random sample of more than 5,000 women newly diagnosed with breast cancer who lived in Los Angeles County and the state of Georgia. The women were surveyed between 2013 and 2015.

The researchers were careful to include women who were diverse in terms of race, ethnicity, age, education, and health knowledge. The researchers also were careful to include enough Latinas with what was called “low acculturation” so they could draw meaningful conclusions about this group. Low acculturation means that the women were not fully culturally assimilated into the area of the United States where they were living and were more comfortable with the cultural norms of another society.

The survey asked about:

  • how the women learned of their breast cancer diagnosis, with whom they consulted before surgery, the type of treatment they eventually received, and their perception of the communication and coordination of their care between doctors and across specialties
  • the women's attitudes and beliefs about medical decision-making, including how much the women wanted to participate in decisions versus deferring to their doctors
  • the women's informal decision support networks -- whether and how much family members or friends participated in their decision-making, including going with the women to appointments and taking notes

While there were similarities between different groups of women in the study, including how they learned of their diagnosis and whom they consulted before surgery, there were differences in other areas, especially between Latinas with low acculturation and other groups:

  • When discussing treatment options, Latinas tended to ask fewer questions and leave treatment decisions to their doctors.
  • Latinas also were more likely to say they felt overloaded with information about treatments and tests.
  • Finally, Latinas were more likely to rank the quality of their doctor’s communication lower than other groups.

"[Ultimately], the news is encouraging," said Steven Katz, MD., MPH, professor of medicine and health management at the University of Michigan and lead author of the study. "While we see differences in how some patients comprehend the information we're providing, we don't see significant inequities in how we're providing it. That's something to build on."

He added that the research highlights the ways that language barriers, cultural differences, and fear of discrimination disadvantage some patients, notably Latinas with low acculturation. At the same time, Katz said that this group tends to be quite resilient and resourceful.

"More than other cohorts we studied, these women relied on informal decision support," he continued. "They were more likely to bring family members or friends along to doctor visits, and to rely on them to take notes. Our study serves as another reminder that as doctors we need to work harder to be accountable and relate to each patient's unique situation."

If you’ve been diagnosed with breast cancer, it’s likely that your medical team has given you A LOT of information. You may feel overwhelmed and want to ask questions, but feel nervous about questioning your doctor or anxious about trying to understand all the medical terms. Or you may feel that your doctors don’t have the time to explain everything as slowly and in as much detail as you would like.

It’s challenging -- but important -- to overcome those feelings. If you don’t get your questions answered, you may find it hard to be fully committed to your treatment plan. Here are some strategies you can use when talking to your doctors and other members of your healthcare team:

  • Remind yourself that there is no such thing as a “stupid” question or “silly” concern. Chances are if you have a question, your doctor has heard it from someone else before you. Many people are confused by medical terms and need further explanation, so you’re not alone.
  • Ask for an explanation whenever you need it. It can be difficult to ask your doctor to slow down and explain what he or she means. If you can’t understand the words your doctor or nurse uses or the written material you’ve been given, don’t be embarrassed. Speak up immediately and ask for an explanation. Do this every time you don’t understand what you’ve been told about your diagnosis, treatment, solutions to side effects, scheduling, follow-up, insurance coverage, or anything else. If language is a problem for you, ask your doctor if translation services are available or ask a friend who can communicate in both languages to help you.
  • If your doctor is not communicating well, let him or her know. Not all doctors are great communicators. Some tend to rush through appointments or just assume that everything they are saying is sinking in. Sometimes all you need to do is express your concern. You can politely ask your doctor to go at a slower pace or offer simpler explanations.
  • Ask how your doctor would like you to present questions. Should you bring a list of questions to your appointments? Should you fax or email them ahead of time? Should you ask for a phone appointment to get them answered?
  • When possible, bring a friend or relative with you to appointments, so that person can take notes while you talk with your doctor. If no one can come with you, take your own notes on what your doctor says. Trying to hear and remember everything on your own can be overwhelming. It may help to record your doctors’ visits on a tape recorder and replay the explanations about your care when you’re at home. Ask your doctor if it’s OK to record what she or he says.
  • Ask a nurse, social worker, or counselor for help if you’re having trouble getting answers from your doctor. These healthcare professionals often are skilled at talking in everyday language, answering treatment questions, and making suggestions about how to deal with side effects.
  • Ask your primary care or family doctor -- the one who’s not a cancer specialist -- to help if you have questions or concerns that aren’t being addressed. This doctor may not have all the answers, but he or she can help you get them. You may feel more comfortable with this doctor, especially if he or she has been caring for you for many years.

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