How do you value Facebook? For my part, it’s helping me get through cancer. And for me, that’s invaluable.
Connecting with patients, caregivers, doctors and advocates from across the world, I’ve received support and knowledge, discovered more options and have become an advocate. It can benefit you too!
In the winter of 2010, I was diagnosed with prostate cancer at the age of 35. It hit me like a ton of bricks. None of my doctors at the time offered suggestions for either in-person or online support groups to join.
Those three words, “You have cancer,” sent me into a tailspin. I was overwhelmed with questions about dying, could it be treated, how should it be treated and were there others like me? Sleepless nights ensued, and a lack of focus on my days at work. I could only think about my cancer.
At the time of my diagnosis, I was running a marketing company. Each of my clients was looking for the best ways to make Facebook a part of their strategy to grow their business. We tinkered and sought ways to leverage Facebook to develop and foster community, which would attract new customers as well as retain current customers.
When I shared my diagnosis on the wall of my personal Facebook page, much support and many questions appeared as postings. At the time, I was not ready to seek an in-person support group, and I hadn’t found any prostate cancer Facebook support group pages that shared experiences of patients, caregivers and doctors. So I decided to start a Facebook page entitled Journey with Prostate Cancer. I also launched a non-profit to fight prostate cancer, Blue Cure.
I’d already seen top doctors in Houston and New York City, and eventually would visit doctors in other parts of the country. I received different perspectives on how to approach my cancer, and I felt it was important to share my journey, personal experiences and knowledge, especially how diet, lifestyle and stress management can be keys to preventing cancer and its recurrence. I also wanted to post news from around the world.
Much as I’d do with my clients by scanning headlines, I’d do with this Facebook page. But its true success came from connecting with others and reposting their experiences. What mattered wasn’t just the number of “likes” the page was getting, but the engagement it generated as a forum for support.
A distraught wife would post a comment about her husband not reacting well to treatment, and we’d get 10, 15 or 20 comments of support. And it continued to grow. People would post their thoughts and feelings — their journey — and others were there to offer encouragement.
- “I cannot imagine being on my ‘journey with prostate cancer’ without the support, news, friendship, information and inspiration that this wonderful page provides us.” wrote James Korzec.
- “Everything I know about prostate cancer I learned from this page! I have also met amazing people and the support me and my family receive is just unbelievable!” wrote Nicolene Eagar.
- “It helps to know there are others that know what we are going through. Thank you,” wrote Jodi Swihart Latronica.
For some, in-person support groups aren’t an option due to time, lack of proximity and comfort level. In the case of prostate cancer and other men’s health issues, men just aren’t as emotive and open about their health. But Facebook overcomes such walls and makes it much easier. Eventually it may lead some to seek in-person support, but for others, online support has been what they needed.
If you’ve been diagnosed with cancer, or if you’re a caregiver or have a loved one with a diagnosis, I encourage you to seek related Facebook pages. Of if you’re a survivor of a cancer, then join a page so we can learn from your experiences.
Some suggestions:
- Check out a few cancer Facebook pages, and definitely join at least one that’s specific to the type of cancer you have — usually associated with a nonprofit.
- Join a Facebook page that not only pushes out news, but reposts experiences and encourages engagement.
- For cancer nonprofits that only post news or events, ask if they have a Facebook support group page where patients, survivors and doctors interact.
Dr. Lorenzo Cohen, professor and director of the Integrative Medicine Program at the MD Anderson Cancer Center in Houston, Texas, says:
Receiving and providing social support is important in the cancer journey. We know in-person support groups like UsTOO (for men with prostate cancer) are very helpful for patients and caregivers. Getting this same type of informational support and strategies to cope with challenges online through Facebook or other avenues is also helpful. Because these sources of information are not “monitored,” it is important to speak with a health care professional before making medical decisions.
Social media gets criticism for the harm it can do, but social media can be a source for good. One way Facebook is being harnessed for the greater good is by providing support and education for the cancer community.
As a cancer survivor or caregiver, are you connected to a cancer community on Facebook? If so, please list the group and the Facebook URL below and tell us how you’re benefiting. And if what you face is prostate cancer, please feel free to join us at Journey With Prostate Cancer and Men’s Health Network
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