Using Social Media to Navigate a Diagnosis of Cancer

Using Social Media to Navigate a Diagnosis of Cancer

how to use Social Media to Navigate a Diagnosis of Cancer

No ifs, ands or buts about it… cancer sucks!  A diagnosis of cancer is life altering.  And for many, it is devastating – emotionally, physically, financially and socially.  Navigating a treatment plan and finding, much less making sense of, the information & existing resources that help cancer patients and caregivers is as challenging and confusing as the disease itself.  So what’s a person to do?


The more educated patients are about their disease, the better decisions they can make about their options.  Scouring the Internet for information on a specific type of cancer is relatively simple, although searchers must be cautious to visit reliable, trustworthy medical sites.*  In 2009-2010, I did tons of searching and researching while we were battling my husband’s cancer.  For me, the more I read, the more I learned, the smarter my Google searches became, and the more resources, information and treatment options I found.


My Paradigm Shift:

Today, I still search daily for information and resources that help patients and caregivers navigate their way through a diagnosis of cancer.  However, I rarely research using just Google anymore; instead much of my research is prompted by my interactions on Twitter and Facebook and from reading other people’s blogs.  It’s ironic that I say this because I’m the person who used to think that social media was a waste of time.  I had never even heard of a blog before 2010 and I thought Facebook and Twitter were simply another way for people to over-share their life using status updates.


I now see firsthand how social media enables patients, caregivers or anyone touched by cancer to make sense of their diagnosis by connecting them to the people, perspectives and resources they need when they need them.   Social media not only empowers people to share their stories and make friends (and to over-share life’s moments at times), but it is also a gateway to information they may not find from their doctor or via Google.  It’s how I find many of the things I write about on


Facebook: The Great Connector

Facebook is most people’s go-to social media sharing site with over 1.06 billion active monthly users.  It’s the social media app that spans the largest age demographics- heck, both my 13 year old daughter and my 74 year old mother now have Facebooks.  As a result, Facebook is probably the easiest way to connect with a large group of family and friends; to keep them informed of what’s going on; to receive support and encouragement; and to gather information.


In his article “Using Facebook in the War On Cancer”Gabe Canales (aka @GabeCanales), prostate cancer survivor & founder of Blue Cure Foundation, writes that the instant connections made of Facebook can provide support, education and hope.  He says, “Such instant connections are a way to know immediately about new treatments and clinical trials and to share experiences about drugs, doctors, hospitals, treatments and other elements of the cancer journey.”  Knowledge is power… and Facebook makes it easy for knowledge to be shared.


Blogging Communities:  An Opportunity to Learn from Others

Blogs can be more than just personal diaries. They are websites that provide readers an opportunity to learn, ask questions and make comments regarding the author’s articles or posts.  Blogging communities and social networking sites such as:

  • Treatment Diaries
  • What Next
  • ColonTown
  • My BC Team
  •  IHadCancer
  • Inspire 

    also connect those touched by cancer with others facing a similar diagnosis.  Real life experiences, practical tips, lessons learned & treatment insights are easily shared in these forums.  Reading blogs also offers those who are shy or are embarrassed by their questions and concerns to learn without having to put their name or face out there.  Blogs are where I find some of the most in-depth, consistent coverage of what it’s like to live with and how to survive a diagnosis of cancer.


Twitter:   Where Questions Get Asked & Answered in Minutes

A little tweet goes a long way.  Twitter is where questions are asked and answered quickly in 140 characters or less.  In addition to learning about new treatments and clinical trials, Twitter also enables patients and caregivers to connect with others outside their immediate circle for support and information.  It’s where Stef Woods (aka @citygirlblogs), breast cancer survivor and advocate extraordinaire, went to connect with other young adult cancer survivors who understood what she was going through during her cancer treatments and beyond.  The tremendous support she received from her twitter followers helped her get through each day.


Twitter is where I go to connect with thousands of cancer patients, survivors, caregivers and patient advocates on a daily basis.  It’s where I met Stef and Gabe.  It’s where I find many of the different resources and information that I write about on  I learn about things that I would never have been able to find via Google in part because Twitter makes it easy to search for keywords or terms using hashtags (#).  My search results often lead to instant patient and resource connections.  BTW, next time you’re on Twitter, check out tweets using my favorite hashtag #cancersucks ;-).


The Bottom Line:  Social media enables people- regardless of who they are,  where they live and whether you knew them previously or not- to connect with one another in incredible ways.  Knowledge and experience get shared; encouragement and support are offered; questions get answered; strangers become friends; treatment options and types of assistance are uncovered; hope can be found.  So if you’re feeling up to it, check out Twitter or Facebook or someone’s blog and see what new connections you make.  I’d love to hear about it if you do so please either comment below or email me at  xoxoxxox

* For more information on finding credible information on the Internet, visit and And for more information about the wide variety of programs and organizations available to cancer patients, visit cancer support services.


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5 thoughts on “Using Social Media to Navigate a Diagnosis of Cancer

  1. Elizabeth Lowney

    This is very true. My 4 year old son was diagnosed with brain cancer in Aug 2012. The type of cancer he has is called medulloblastoma and there are less than 500 new cases a year. I started out searching google for info and found it so confusing to read articles on cellular biology. I really didn’t know where to turn for help. Once we got him into a clinical trial, I was able to connect on Facebook with a parent support group called “Parents of kids with medulloblastoma” and it was such a blessing to find other people who were dealing with all the same issues as us. We shared our son’s cancer journey in many ways including exchange of treatment info, side effects during treatment and long-term side effects. Most of all, I found stories from survivors that were inspirational. Today my son is 5 years past diagnosis and cancer free, but I still look for new information to help him by using social media. Thank you for creating this blog to share the resources you have found.

  2. Jenn Hart

    This article is so true. I was diagnosed in sept of 2012 and I couldn’t imagine getting the information in and out without facebook, wordpress and twitter!

  3. Dr G

    This is such an awesome post and very informative. Social media is truly a new platform for educating not only sharing and connecting with friends but a means to educate patients, patients connecting with patients and healthcare providers building communities with caregivers, patients and fellow professionals.

    CareCareNovateMag [] is an online platform, a go-to resource that provides caregiving information, social health and medication literacy content to our core audience: family caregivers, patients, consumers, seniors and most of all WOMEN.

    Thru social media, we educate patients and caregivers on caregiving resources, we educate and connect with healthcare professionals via our weekly Twitter chats #Carerx (we’ve actually did one with Treatmentdiaries, tweeted about medication literacy and tolls for caregivers.)

    1. Robyn Post author

      Hi Dr. G,
      Thanks so much for your comment on Social Media & cancer… and thank you for telling me about your site. I will definitely check it out. It sounds like a fantastic resource for anyone diagnosed with cancer and their caregivers.
      Many thanks & healthy wishes…. Best, Robyn


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