Using Social Media for Breast Cancer Support

You’ve been connected to Facebook friends for years now and keep up with your favorite team or charitable cause on Twitter. Maybe you blog about your life—or read bloggers whose writing interests you.

Social media puts your world in your hand (literally!). Turning to these tools after receiving a breast cancer diagnosisinfo-icon makes sense as you look for information and support.

Yet using social media to connect about your concerns is different than reading educational content on a website. Social media tools and platforms enable you to communicate with networks of hundreds or thousands of people. That can be good, but there’s reason to proceed cautiously.

Benefits of Social Media for Young Women

You may have felt alone after receiving your breast cancer diagnosisinfo-icon. If you knew women affected by the disease, they may have been a generation or two older than you.

Social media can put you in touch with other young women who have had similar experiences. By connecting through Facebook, Twitter or blogs, you may gain positive psychosocialinfo-icon benefits as you

  • share stories
  • ask questions
  • receive or give answers
  • learn about treatments and research
  • hear about providers
  • blog your opinions
  • get to know other young women affected by breast cancer
  • offer support

All of these can help you feel more informed and emotionally strengthened. (Community discussion boards on organization websites provide some of these benefits as well, often to a smaller circle of women.)

On social media, you also can follow news from your doctor or another trusted health source, post your comments and read what others have posted.

Evaluating What You See on Social Media

Individuals, groups, providers, institutions, nonprofit organizations and businesses create social media messages.

You may be more inclined to trust information simply because it comes from someone within your social media network. That trust might not always be deserved.

Anyone can post a tweet, comment or blog. A wrong or misleading message may take only a few seconds to create but can live on for months as it gets passed through networks of contacts.

A recent study evaluated the accuracy of online health information posts about breast cancer. It found:

  • Accuracy was lower for blog posts and messages in discussion forums.
  • Anonymous posts were common but less likely to be accurate.

To evaluate what you read or see on social media:

  • Look for a link to where the information came from originally.
  • Check the purpose of the group or business generating the message.
  • Be wary of medical information or advice createdby individuals.
  • If a research studyinfo-icon is mentioned, look it uponline to verify.
  • Read profile information on bloggers.
  • Determine if content is reviewed by medical orresearch experts.
  • If identity is anonymous or affiliation information is missing, be very skeptical of the message.
  • Consider whether a social media message from a business is intended to sell something or collect your personal information.

Trustworthy health information sources include major hospitals, cancer centers, universities, government agencies and nonprofit organizations that fully detail their purpose and have medical review of content. 

Information Privacy Concerns

By federal law (called HIPAA*), your doctors, healthcare providers, hospitals and insurers have to protect your health information and maintain the privacy of your medical records.

Yet many women readily disclose that same personal health information on social media because they feel as if they are communicating with close friends. Some women post messages that include details of their breast cancer pathology reports, treatments and recurrences or metastases.

When your health information appears on social media, it is seen by many people, beyond those you have chosen to tell, and can be passed along to others in their networks. You lose control of the privacy of your medical history and may risk

  • loss of career advancement
  • job discrimination when looking for work
  • being turned down for loans, credit or insurance
  • having your diagnosisinfo-icon known to people you date,or want to date, before you are ready to talk about it with them
  • identity theft, as your messages are matched to other personal information online
  • use of your information to market products or services to you

These risks can happen even if you use a fictitious name or post on social networks for those with medical conditions. Be sure to:

  • Read and fully understand the privacy controls of any social media you use.
  • Find out how your personal information will be used, if it is requested.
  • Post only the information you are willing to have publicly known.

The Isolation of Social Media

The support and interaction found on social media can be helpful, but sometimes it may consume too much time, becoming a barrier to personal relationships and trustworthy medical care. Stay connected with friends and family. Talk with an oncologyinfo-icon social workerinfo-icon or a member of your healthcare team about your concerns.

*Health Insurance Portability and Accountability Actinfo-icon of 1996

This article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

October 30, 2013