How Do You Find Accurate Information About Metastatic Breast Cancer?

It’s good to have a skeptical eye when researching breast cancer.

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When you’ve gotten a serious diagnosis like metastatic breast cancer, your first instinct may be to find out everything you can about your prognosis, treatments, possible cures, and resources for support. With all the information available at your fingertips, how can you be sure of who you can trust for the best information?

“It is important to do your research about your condition and treatment options,” says Paula Klein, MD, hematologist and oncologist at Mount Sinai Health System’s Dubin Breast Center. “Because it can improve your confidence and empower you to make informed decisions—but there is a lot of misinformation online.”

How To Find The Best Information About Your Breast Cancer Diagnosis—From A Doctor

You’ll want to start with people whose sole job it is to research, perform scientific studies, and disseminate public health information.

Here are our top 3 generally good sources for learning about your diagnoses:

  1. U.S. government agencies like the Centers for Disease Control and Prevention (CDC), the Food & Drug Administration (FDA), the National Cancer Institute, and the U.S. Department of Health and Human Services)
  2. Professional organization websites like the American Society of Clinical Oncology
  3. Reliably supported non-profit research organizations like the American Cancer Society, Breast Cancer Research Foundation, Metavivor, and MBCAlliance

The takeaway: If you want to read more about your diagnosis online, look for .org and .gov resources.

And Where to Be Careful

To comb through the weeds of unhelpful fodder, you’ll want to avoid any unprofessional opinions (no matter how well intended they seem). Same goes for entertainment television that parades as news, movies, and social media.

Listening to the news or watching documentaries can be good starting points for your own research or line of inquiry for your doctor. Try not to take simple headlines at face value. Journalists do their best to digest complicated news studies for you. But you can also take a look at the sources and studies the writer cites.

Rules of thumb to recognize a good source:

  1. If the website offers a miracle cure, or an “easy” solution with a price tag—it’s not reliable. Be cautious with websites that pretend to have all the answers, promise amazing results, or offer products for sale.
  2. Check if the information is outdated. Science is based on trial and error, hypothesizing, and updating previously held assumptions. Studies don’t intentionally mislead—but if they’re more than a few years old, there’s likely a new study to debunk an older one.
  3. Avoid sources that ask you for your personal information first, because your privacy can be compromised and you can be targeted in the future by the figurative snake oil salesmen.
  4. Always discuss your findings with your doctor. They know you and your history and are your first line of defense and source for personalized information.

Interpreting Advice from Loved Ones

Well-intentioned friends may want to give you advice, but everyone’s cancer experience is different. At best, their advice might not be relevant to you, and at worst, it could be harmful or dangerous.

If you find your friends are telling you a lot of stories they have heard in an attempt to relate to or comfort you, take them with a grain or salt. You could also ask your loved ones to simply support and listen to you.

Talking to Your Doctor About Your Breast Cancer

“At the end of the day, bring it to the office. You should definitely have a care team that's approachable and available to talk about all of this,” says Dr. Klein. “We like it when patients read, of course we do, but they have to be reading the right stuff.”

It’s always a good idea to talk with your doctor if you find anything that interests or concerns you online. It may not pertain to you, and it may cause you stress for no reason. Your doctor can help explain things to you and put things into context. Plus, they can only continue to treat you better when you’re fully honest.