The Role of Social Media in Cancer Care

Possibly due to my early days of computer programming and/or work creating one of the first brokerage firm websites, I recognized very early on the power of the Internet to connect people. When I first started my cancer patient blog in December 2015, it was mainly an efficient tool for me to keep family and friends updated on my health. However, I quickly realized that social media (e.g., Twitter, Facebook, Instagram, blogging) also afforded me the opportunity to provide unprecedented access to my personal experience as a terminal cancer patient. In doing so, I felt that my insight could be beneficial to others dealing with a head/neck cancer diagnosis and the effects of treatment. Importantly, I hoped that sharing my story could also help create awareness for the cause of my cancer (human papillomavirus, or HPV) and how today’s vaccines can prevent it.

Writing about my cancer experience is cathartic and that alone made all of the blog posts, Tweets, Instagram images, and Facebook entries seem worthwhile. What I didn’t expect was how my social media activities actually helped me deal with my own cancer diagnosis. Accordingly, the purpose of this blog post is to highlight some of these interactions with the hope that other cancer survivors find similar ways to derive benefits from social media.

For example, some people have a talent for making new friends. Unfortunately, not everyone is born with the gift—including me (yes, it’s true). Some side-effects associated with cancer and its treatment make this situation even more difficult. Being fatigued and depressed can lead to a lot of time being secluded in one’s own home—not working and feeling isolated and alone. The ability to meet new people and establish relationships can be enhanced through social media and other Internet activities.

In this regard, I’ve been fortunate to have met several Twitter acquaintances during their visits to the East Coast from as far as Buenos Aires, Argentina (@BursatilBiotech), the Pacific Northwest (@SheffStation), and Lenexa, Kansas (@bradloncar). Meeting individuals in person was an unexpected yet pleasant surprise in view of today’s digital communication era. Of course, it doesn’t hurt that our family’s latest animal addition, a golden retriever puppy named Humphrey, has attracted his own cult following on social media.

Lorie and Michael Becker – click to enlarge (photograph by Paul Reitano)

In late September 2017, I received an unsolicited email from fellow head/neck cancer survivor Paul Reitano. His surgical oncologist had posted a story about me on Facebook that led him to both my book and blog. Beyond our shared cancer background, we both enjoy photography and Paul wanted to include me in his personal project regarding portraits of cancer survivors. We set a date for early October when he was in town and spent the better part of a beautiful autumn day talking about common interests as he clicked the shutter on his camera. By late afternoon, we were like old friends even though we had just met. Among many excellent captures, Paul took a beautiful photo of me and my wife, Lorie, that we treasure. Aside from an array of gorgeous photos, Paul and I keep in touch and it has been great to have another head/neck cancer survivor in my life.

More recently, I had the pleasure of connecting with another head/neck cancer survivor, Jason Mendelsohn, through social media. Jason was recently the subject of a NBC news segment reporting on the silent epidemic of HPV-related cancers among men. Like me, Jason is determined to help others by sharing his story and experience through his blog.

Another unexpected benefit from social media is the support from reporters and related contacts I’ve developed throughout my career or who have recently covered my cancer story. One of the more memorable experiences was when @adamfeuerstein dedicated his 2017 Pan-Mass Challenge (PMC) ride to me as a token of his support over the summer. PMC raises money for life-saving cancer research and treatment at Dana-Farber Cancer Institute through an annual bike-a-thon that crosses the Commonwealth of Massachusetts. Through social media, I’ve also been fortunate to make several new media connections, such as @BiotechSusan, editor of BioCentury, and @JohnCendpts, co-founder of Endpoints News, among many others.

Social media can also be a means for health education and public messaging. Through Tweets and sharing articles, I’ve enjoyed being able to help correct the popular misconception that HPV vaccination is only for girls and cervical cancer. Creating awareness about HPV’s link to six different cancers and the proven safety/benefits of HPV vaccination for both boys and girls is one of my personal goals, which has been enhanced through my participation in social media.

The role for social media in cancer care is embryonic and evolving, but my experience thus far suggests that there are many potential benefits. There are, of course, certain challenges, not the least of which includes the potential for sharing inaccurate medical information and the lack of privacy and confidentiality when discussing deeply personal situations.

As an example of both, one need look no further than Michael Douglas’ revelation in 2013 that his cancer may have been caused by performing oral sex has and the resulting embarrassment caused to his wife, Catherine Zeta-Jones. In fact, only a few studies have looked at how people get oral HPV, and some show conflicting results. Some studies suggest that oral HPV may be passed on during oral sex (from mouth-to-genital or mouth-to-anus contact) or open-mouthed kissing; others do not. The likelihood of getting HPV from kissing or having oral sex with someone who has HPV is not known. According to the Centers for Disease Control and Prevention (CDC), more research is needed to understand exactly how people get and give oral HPV infections.

Perhaps the world just wasn’t ready to hear about the links between oral sex, HPV and head/neck cancer at the time, but fast forward to today and Michael Douglas’ story may have helped create greater awareness and a sense of urgency to better treat and prevent what is becoming the one type of oral cancer whose numbers are climbing, especially among men in the prime of their lives. The world could use more support from celebrities affected by HPV and cancer to further increase awareness and/or raise research funds for new treatments and diagnostics.

In view of growing use, researching and defining the role for social media in cancer care represents an important area of unmet need. Certainly, this is a subject that merits further investigation and could be an interesting workshop at an upcoming major medical conference, such as the American Society of Clinical Oncology (ASCO) annual meeting. In the meantime, thank you to ALL of my social media connections who help make the world seem a bit smaller and a whole lot brighter!

Meeting a Fan

A couple of weeks ago, I received an unsolicited message on LinkedIn from a young woman we’ll call “Mary” for the sake of anonymity. Like me, Mary is extremely passionate about the biotechnology industry and she works as a scientist in the lab at a local company.

In her message, Mary stated that she recently read my memoir and found the story to be moving. She offered to meet for coffee and expressed an interest in hearing more about my career path. Knowing that I’m going through chemotherapy, she completely understood if I wasn’t up for meeting, but stated that she “couldn’t pass up the opportunity to ask, as she was so inspired by my work.”

How do you say “no” to that? It isn’t every day that a fan reaches out to me requesting to meet (in fact, this was a first), so I was quite flattered. We settled on a date and time to meet for coffee in downtown Yardley, PA that worked for our respective schedules.

I informed my family about the upcoming meeting with Mary and they reacted as one would expect. Who is this person? Why does she want to meet? She could be a homicidal maniac, etc. Obviously, they were just being protective and looking out for my best interests. After all, I’ll admit that my mind wandered ever so briefly to Stephen King’s 1987 novel Misery about a psychotic fan who holds an author captive and forces him to write her stories.

I arrived at the coffee shop first and attempted the daunting task of identifying Mary solely on the basis of her LinkedIn profile picture. Instead, she instantly recognized me (not too difficult given my recent “bald head and bold eyeglass” look) and came over to say hello. I admit to a certain sense of relief that she looked nothing like Kathy Bates who played the psychopathic Annie Wilkes in the film version of Misery.

We ordered drinks and sat at a quiet table in the back of the shop. What ensued was a lovely conversation about my background and our mutual interest in the exciting biotechnology industry. It was clear that we were both bitten by the biotechnology bug and it was nice to exchange thoughts and perspectives about the field.

When asked, Mary shared that she was introduced to my memoir by a college professor at a prestigious university where she is participating in an online degree program. Apparently, the professor suggested the book to his class and others were reading it as well.

My ego sufficiently bloated, I asked Mary to provide me with the professor’s contact information so that I could at least thank him for recommending my book, which she did. I sent out the note without even making the connection that the professor and I had several prior exchanges on social media and that he was also a research scientist at the National Institutes of Health (NIH). He promptly responded and reminded me of the connection. What a small world after all…

The meeting with Mary at the coffeehouse lasted an hour and a half, but it went by quickly and felt much shorter. However, the high from interacting with a “fan” lasted a lot longer and inspired me to get out more often and meet with others who have an interest in my story. This could be via book signings, meeting with book groups, speaking at events, etc.

When I wrote A Walk with Purpose: Memoir of a Bioentrepreneur, it was with a historical perspective of my life’s journey. But I’m continually amazed to see that my walk and purpose are not yet complete. For example, at first I was humbled every time I learned that my book inspired a parent to reconsider vaccinating their child against human papillomavirus (HPV). Now, through my brief exchange with Mary, I have also witnessed how the book can ignite and/or reinforce one’s interest in the exciting field of biotechnology.

So, thank you Mary…and all of the others who have taken the time to share how my book has positively influenced them. Each of you inspire me to continue my walk with purpose!