National Breast Cancer Coalition

Using Evidence-Based Information

Evidence-based information is very important to getting quality care. Doctors shouldn't just tell you about your breast cancer care choices. They should give clear, timely, correct information. And they should tell you the research evidence that backs up each choice. They should also tell you when there is not much evidence available. Some patients want a lot of information. Others don't. But all patients need doctors who practice evidence-based medicine.

There is still a lot we don't know about breast cancer. But there is a lot we do know, too. You just have to know where to look for trustworthy information.

What You Can Do:

Take the time you need.

Breast cancer is terrifying and feels urgent. But most breast cancer patients (regardless of the stage of their breast cancer) can safely take a few weeks to:

  • find the right doctors,
  • learn about the good points and bad points of each care choice, and
  • make informed choices.

This is time well spent. Are you worried that waiting a little will harm your health? Ask your doctor if you can spend a few weeks thinking about your choices. Ask if that would be bad for someone with your diagnosis. You need some time to make informed choices.

Ask questions.

Keep asking until you understand. First, ask your doctor which choices you need to make when. You don't need to decide everything at once. But one choice may affect other choices for your care. For example, some clinical trials may not take patients who have already taken a certain drug. If you take this drug before finding out about the clinical trial, you won't be able to enter the trial. Learn more about clinical trials.

When your doctor tells you your care choices, ask if they are your only choices. For example, you may choose to have your reconstructive surgery at the same time as your mastectomy. But, some breast surgeons may not want you to have reconstructive surgery right away. They may want you to wait until after chemotherapy or radiation. This may be just because your surgeon isn't used to working with a plastic surgeon. But, it's important to know that there is not a medical reason why reconstructive surgery cannot be done at the same time, even if you will receive radiation therapy to the chest wall area.

Get more than one opinion about your treatment choices.

Getting second opinions is important. After you get a pathology second opinion, you should get second opinions about your treatment options. They will give you more information and help you choose a course of care. Your health plan and doctor should want you to get a second opinion. Usually, you can get a second opinion if you ask for it. Learn more about second opinions.

You have every right to tell your doctor, "Thank you for your time and advice. This is a big decision, so I need a second opinion." If you feel uneasy, you can blame it on a relative. (You could say, "My sister insists I get another opinion.") Or you can probably work directly with your health plan to get another opinion. That way, you don't have to talk about it with your doctor at all. Sometimes your primary care doctor can help you get a second opinion.

Get the second opinion outside the first doctor's medical practice or cancer center. Often doctors who work together don't like to disagree with each other. Some doctor's offices prefer certain treatments for breast cancer. That usually means that a second opinion from the same medical practice or center will be the same as the first. You are more likely to get an independent second opinion if the second doctor does not work with the first.

Some hospitals have a panel of doctors (called a "tumor board") who discuss how best to treat difficult breast cancer cases. You might want to ask your doctor if this approach makes sense for your situation.

Think about talking to a range of doctors, including a breast surgeon, medical oncologist, radiation oncologist, and others. Each has a treatment they offer (surgery, chemotherapy, radiation, etc.). And each will have their own view of the whole range of treatments. For example, some patients cannot get breast-conserving surgery because their tumors are too large. But sometimes chemotherapy given before surgery can shrink the tumor so that breast-conserving surgery can be done. You are more likely to hear about different options if doctors from a variety of specialties contribute to your decision making.

You should also think about getting a second opinion on each major aspect of your care. For example, let's say a patient must choose:

  • between a mastectomy or breast-conserving surgery with radiation,
  • a set of chemotherapy drugs to take, and
  • whether or not to have reconstructive surgery (if she chooses a mastectomy.)

To make these choices, the patient should consider visiting:

  • more than one surgical oncologist to learn about and choose a surgery,
  • more than one medical oncologist to learn about and choose a set of chemotherapy drugs, and
  • more than one plastic surgeon to learn about and choose a type of reconstructive surgery.

Many medical centers throughout the country have developed multi-disciplinary breast care programs which combine appointments with breast specialists into one session. This offers the advantage of enabling you to meet with your surgeon, medical oncologist, and radiation oncologist all during the same visit for more coordinated care.

Learn about evidence-based health care.

You need doctors that practice evidence-based health care. This means their advice is based on the best medical research. It means they have a system for reviewing old and new medical studies. Your doctor needs to understand what the evidence means and how it relates to your breast cancer. This is a very important part of your doctor's job. New medical research is always giving us new information. So keeping up with the evidence is an ongoing job.

While a doctor's experience is an important part of decision making, it is no substitute for information we've learned from well-designed research. Not all doctors are experts on evidence. Some rely more on anecdotal evidence, old information, or their personal experiences. Listen carefully to your doctors. Are they talking about evidence that comes from two or more well-designed research studies? Or are they telling stories? Their stories could be about what worked once for one of their patients. If you can't tell if their advice is based on tradition, opinion, or evidence, ask.

You may hear the term "community standards." That is simply the treatment most people are getting in a certain region. It may or may not be based on evidence. For example, in some parts of the country, doctors routinely advise mastectomy for some patients. Somewhere else, doctors might advise a lumpectomy with radiation for those same patients. The reason for this difference may not be evidence-based, but rather due to access issues. For example, if the nearest radiation treatment facility is hundreds of miles away it may be difficult for someone to receive daily treatment. It is important to learn about the scientific evidence in support of treatments, and not just whether it is commonly done.

Learn about breast cancer clinical practice guidelines.

There are many guidelines for how to treat breast cancer. These are called "breast cancer clinical practice guidelines."

Some guidelines are much better than others. Some are created by a diverse team of experts who really study all the evidence. Other guidelines are created by companies or organizations that will profit from recommending one treatment over another. Good national breast cancer guidelines are based on scientific evidence. Panels of experts from across the country write the guidelines. They rely on and identify the research studies that support their recommendations.

Keep in mind that clinical practice guidelines are just that--guidelines. Guidelines will not tell you exactly what your care should be. But they will give you a good idea of your choices. They are written for large groups of people. You may have other health issues that affect your doctor's advice or your choice. But you should understand what the standard of care is.

Doctors do not always follow breast cancer treatment guidelines. This may be because your doctor is unaware of them or disagrees with them. Or it may be because there are conflicting guidelines. If your doctor recommends care that doesn't follow national guidelines, ask why.

Medical research is not all the same.

Some studies are better than others. A good study gives results you can trust. "Validity" and "reliability" refer to how much you can trust a study's results. A study's validity and reliability depend on:

  • how well the study was designed,
  • what questions were asked,
  • how big the study was, and
  • if the same results were found more than once, or are backed up by other research.

Also, different types of studies offer different levels (strengths) of evidence. For example, controlled studies give stronger evidence than uncontrolled studies or case series.

In a controlled study, one group of patients gets the new treatment. This group is called the investigational group. Another group of patients does not get the new treatment. This second group gets a standard treatment for the same disease. This group is called the control group. The investigational group and the control group are then compared.

There are different types of uncontrolled studies. One type looks at the effects of a new treatment by looking at the same patients before and after they get the treatment. These studies don't use a separate comparison group of patients.

The randomized controlled clinical trial gives the highest level of evidence. This type of trial is the "gold standard" of medical research. In it, the patients are assigned by chance to get the new treatment or not. (This makes the study "randomized.")

What if there is little or no evidence?

There are many questions about breast cancer care that have no right answers. And sometimes doctors can't agree if one treatment is better than another. For example, there may be two different treatments, but no one knows if one of them works better.

What if there is little or no evidence to support a treatment for you?

What if the evidence conflicts? Try to join a clinical trial. This is the only way we'll get the answers we so badly need.(investigational treatments. These treatments have not been proven. So a new investigational therapy may not work as well as the standard therapy. Or the new therapy may work the same or better than the standard therapy. We don't know the answers to these questions until we conduct a well-designed clinical trial.

With advanced breast cancer, most patients get more than one type of treatment. They may get many different treatments over a long time. So doctors may not be sure which drug works better when it is given first, second, third, and so on. Sometimes, past research guides this decision. Other times there is no research to guide us.

Good doctors combine up-to-date evidence with their best judgment. They base their advice on your treatment history and pathology report. And, of course, they look at how you are feeling and what you want. Doctors should share their reasons for advising certain treatments.

Different doctors have different approaches to their breast cancer patients. This is especially true with advanced breast cancer. The guidelines for treatment are less clear than they are with early breast cancer. So different doctors will recommend different choices when it's a "judgment call."

  • Some doctors propose strong combinations of drugs for metastatic breast cancer patients. Their goal is to try to control symptoms and get a remission.
  • Other doctors believe in giving fewer or less powerful drugs to women with metastatic breast cancer. Their goal is to keep the disease under control without using up treatment options too quickly. (Some treatments shouldn't be given to breast cancer patients more than once.) And they want to pay attention to your quality of life.

Remember, no matter what stage or type of breast cancer you have, the decision is always in your hands. A good oncologist should have a real sense of what you need and want.

Gather your own information.

The Internet offers a lot of information. But be careful, because you can't trust a lot of it. Remember to always weigh the information you gather. Compare sources and think about the evidence carefully. By comparing different sources, you'll see where they all agree. Differences may tell you where doctors disagree or where there is a current lack of evidence.

Learn the difference between risk reduction and prevention.

In medicine, the goal is to reduce the risk of, prevent, or cure illness or disease. The amount of risk reduction can be measured in terms of absolute risk reduction or in terms of relative risk reduction.

If these concepts are confusing to you, don't worry. Just ask the following questions when your doctor offers you a treatment:

  1. What is my risk of getting breast cancer again if I do take the treatment? And what is the risk if I do not take the treatment?
  2. What is my risk of dying from breast cancer in the next five years or 10 years if I do take the treatment? And what is the risk if I do not take the treatment?
  3. What are the risks of bad side effects if I take the treatment?

These questions will help you decide if you think the treatment is worthwhile.

Also, know the difference between "prevention" and "risk reduction." For most of us, "prevention" means something that will stop us from ever getting a disease. But the word "prevention" is often used to describe what is really "risk reduction." Whenever you see the word "prevention," be sure to ask these questions:

  • Is it really prevention or is it risk reduction?
  • And if it is risk reduction, is it absolute or relative risk reduction?

It is helpful to know both.

You can still ask questions, even if you don't feel like you know these terms. Keep asking your doctors to explain what they are saying until you understand it.

Keep track of your health care information.

Keeping track of all the professional care, advice, and information you get is a big and important job. Here are some ideas to help you stay organized:

  • It is always good to have a family member or friend go to appointments with you. They can help you ask questions and take notes.
  • Before your appointment, write down your questions. Leave space for filling in the answers you get from your doctors and nurses.
  • If you track your own care, buy a notebook and be your own best secretary. Write down the dates of meetings, advice, and treatments.
  • Ask to tape-record meetings with your doctor so that you can listen to them at home. Some doctors now tell patients to do this. They know it's hard for patients to understand all the information they get in a short time.
  • Ask for copies of your medical records and reports.
  • Ask for written instructions about your breast cancer care and medicines.

Are you having trouble getting your medical records? If so, learn about the health laws in your state by contacting the Health Privacy Project.