Life’s a Beach

Last summer I was in terrible shape. I had not one, but two chest tubes to drain fluid from my left lung. My disease was progressing with each CT scan. I was contending with a newly discovered blood clot and bleeding issues from the corresponding medication. Also, a rapid heart rate required a brief stay in the ICU. The prognosis at that time was grim. In fact, if someone told me at the time that I’d still be here this summer—I wouldn’t have believed them.

However, after starting combination chemotherapy, my cancer regressed (still present, but smaller). Both chest tubes were eventually removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. An inferior vena cava (IVC) filter, a medical device, was implanted into my inferior vena cava to catch blood clots and stop them from moving up to the heart and lungs.

After finishing my ninth cycle/month of combination chemotherapy (carboplatin and paclitaxel), I decided to take a treatment break in March 2018 at the suggestion of my oncologist. With each passing day, my energy and appetite have improved. Today, I almost look and feel “normal” for the first time since beginning treatment back in early 2016.

But this coming week marks my periodic CT scan to see how my disease has behaved (or not) without any treatment during the past few months. Understandably stressful and causing me great anxiety (scanxiety), I’ve had four migraines in a little over one week. Uncharacteristic enough in frequency to warrant a trip to the emergency room, but an MRI of my head showed everything was fine. Or, “f.i.n.e.” as far as my brain goes! (A reference to rock band Aerosmith’s acronym “Fucked Up, Insecure, Neurotic, and Emotional”)

For me, distractions are key during periods of scanxiety. So, my youngest daughter, Megan, and I spent the day at the shore (Ocean Grove Beach, NJ) on Friday. We’re the only two members of our immediate (and very pale) family who truly enjoy going to the beach. It was my first trip there since before being diagnosed in 2015!

However, more fun than the sun, sand, and sea were the impromptu singing sessions in the car ride there and back. Since they were young, I’ve exposed both our daughters to a wide variety of music. I’m proud they still know the words and can sing along to diverse artists such as Johnny Cash, The Beatles, Guns N’ Roses, Van Halen, and many others. I cannot carry a tune in a bucket, but Meg has a decent singing voice.

The perfect ending to the day, I barbequed burgers for Lorie and me after arriving home late that afternoon. School is still in session, so she had worked a full day. It was quite a feast – fresh sweet corn, baked beans, and chips. Preparing a meal for her was nice for a change.

I’ve lost count of the fantastic times that I’ve experienced during my recent treatment break. But yesterday was one that will stand out for quite some time. It was a darn good day!

After this week’s CT scan and subsequent radiology report, I’ll post another blog update. So, stay tuned.

Suicide in Head and Neck Cancer Survivors

During a recent speaking engagement, there was an audible gasp from the crowd as I relayed a startling statistic from the 2018 Cancer Survivorship Symposium: The mortality rate due to suicide in head and neck cancer patients is more than double the suicide rate of the most common other cancers in the United States.[1] Only male pancreatic cancer survivors have a higher suicide ratio. (see Figure 1)

Figure 1: Click to enlarge. Adapted from – Osazuwa-Peters N, Simpson MC, Zhao L, et al: Suicide risk among cancer survivors: Head and neck versus other cancers. 2018 Cancer Survivorship Symposium. Abstract 146. Presented February 17, 2018.

In the general population, suicide is already one of the ten leading causes of death in the United States.[2] The recent deaths of fashion designer Kate Spade and chef Anthony Bourdain only heighten concerns of “suicide contagion” among mental health experts who fear that vulnerable youth are susceptible to the influence of reports and portrayals of suicide in the mass media.[3]

Following a period of nearly consistent decline from 1986 through 1999, suicide rates in the United States have increased almost steadily from 1999 through 2014.[4] The average annual percent increase in the age-adjusted suicide rate was about 1 percent per year from 1999 through 2006 but rose to 2 percent per year from 2006 through 2014.

Coincidentally, on January 9, 2007, Apple first introduced the iPhone[5] and the percentage of the United States population using any social media soared from 24 percent in 2008 to 67 percent in 2014.[6] In a study published in November 2017 in Clinical Psychological Science, Jean Twenge, a psychologist at San Diego State University, correlates the increasing use of social media, gaming and internet browsing with rising symptoms of depression and suicidal behaviors in teenagers.

One particular at-risk group are cancer survivors, who have nearly twice the incidence of suicide compared with the general population.[7] And patients with head and neck cancer have more than three times the prevalence of suicide compared with the general population.

Depression and hopelessness are the strongest predictors of a desire for death among terminally ill cancer patients.[8] Despite the impact of depression on people with cancer, available studies to assess the efficacy, tolerability, and acceptability of antidepressants for treating depressive symptoms in adults with cancer (any site and stage) are very few and of low quality.[9]

However, there are several other factors than depression that could drive a cancer survivor into suicide. This is especially true for head and neck cancer survivors who deal with unique physical, social, and emotional issues after their treatment.

Significant psychosocial distress in patients with head and neck cancer throughout their illness is well-documented. Depression, suicidality, posttraumatic stress disorder (PTSD), substance dependence/abuse, issues with body image, self-confidence, interpersonal relationships, social stigma, and loss of work and productivity almost universally afflict those with head and neck cancer in some combination.[10]

In one study, hypopharyngeal, laryngeal, and oral cavity and/or oropharyngeal cancers were associated with the highest rates of suicide.[11] Increased rates of tracheostomy dependence – a surgical procedure to create an opening in the neck for direct access to the trachea – and difficulty swallowing and/or feeding tube dependence in these patients may help explain the higher rate of suicide observed. The impact of newer technologies with reduced side-effects, such as transoral robotic surgery (TORS) and intensity-modulated radiation therapy (IMRT), have not yet been investigated.

More than 15 million individuals in the United States are currently living with a cancer diagnosis, 430,000 of whom are head and neck cancer survivors.[12] Many of these patients will experience distortions of voice, hearing, taste, chewing, swallowing, and breathing for decades after successful treatment. Although a relatively rare event, additional research and effort should be devoted to the psychological toll that cancer, treatments, and resulting morbidity have on patients to help prevent more suicides in the future.

References

[1] Osazuwa-Peters N, Simpson MC, Zhao L, et al: Suicide risk among cancer survivors: Head and neck versus other cancers. 2018 Cancer Survivorship Symposium. Abstract 146. Presented February 17, 2018.

[2] Heron M. Deaths: Leading causes for 2013. National vital statistics reports; vol 65 no 2. Hyattsville, MD: National Center for Health Statistics. 2016.

[3] Gould M, Jamieson P, Romer D. Media Contagion and Suicide Among the Young. American Behavioral Scientist, Vol. 46 No. 9, May 2003 1269-1284.

[4] Curtin SC, Warner M, Hedegaard H. Increase in suicide in the United States, 1999–2014. NCHS data brief, no 241. Hyattsville, MD: National Center for Health Statistics. 2016.

[5] Apple press release January 9, 2007. https://www.apple.com/newsroom/2007/01/09Apple-Reinvents-the-Phone-with-iPhone/

[6] Statista. Percentage of U.S. population who currently use any social media from 2008 to 2017. https://www.statista.com/statistics/273476/percentage-of-us-population-with-a-social-network-profile/

[7] Anguiano L, Mayer DK, PivenML, Rosenstein D. A literature review of suicide in cancer patients. Cancer Nurs. 2012;35(4):E14-E26.

[8] Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000;284(22):2907Y2911.

[9] Ostuzzi G, Matcham F, Dauchy S, Barbui C, Hotopf M. Antidepressants for the treatment of depression in people with cancer. Cochrane Database Syst Rev. 2018 Apr 23;4:CD011006.

[10] Smith JD, Shuman AG, Riba MB. Psychosocial Issues in Patients with Head and Neck Cancer: an Updated Review with a Focus on Clinical Interventions. Curr Psychiatry Rep. 2017 Sep;19(9):56.

[11] Kam D, Salib A, Gorgy G, Patel TD, Carniol ET, Eloy JA, Baredes S, Park RC. Incidence of Suicide in Patients With Head and Neck Cancer. JAMA Otolaryngol Head Neck Surg. 2015 Dec;141(12):1075-81.

[12] Osazuwa-Peters N, Arnold LD, Loux TM, Varvares MA, Schootman M. Factors associated with increased risk of suicide among survivors of head and neck cancer: A population-based analysis. Oral Oncol. 2018 Jun;81:29-34.

Quite Refreshing Indeed

In my March 21, 2018 blog post, I wrote about taking a break from cancer treatment. I had just finished my ninth cycle/month of combination chemotherapy (carboplatin and paclitaxel), which significantly reduced the size of tumors in my lungs and spleen since last summer.

Over the past few years, I received three separate cancer treatments with little reprieve from many of the associated toxicities. At the encouragement of my oncologist, Dr. David Pfister at MSKCC, and with my disease stable since January 19, 2018, it was an opportune time to try and heal – both physically and mentally.

I was nervous about what my cancer would do during the break. Actually, I’m still very apprehensive. But what I experienced during this period exceeded my wildest expectations. In fact, it was nice to feel “normal” for a change. Or at least normal for a Stage 4 cancer patient.

Beginning in April 2018, my energy slowly returned. Just in time for the arrival of beautiful spring weather. After a long winter, I was finally able to get outside and go for extended walks with Humphrey. Flowers bloomed and the landscape was green again. Hope and renewal filled the air.

Feeling more confident about my energy levels, I accepted an invitation to speak at the Global Cancer Clinical Research, Drug Development and Therapeutic Accessibility Workshop in Bethesda, MD on May 1, 2018. The session focused on access to clinical studies and cancer treatment from the patient’s perspective.

On May 3, 2018, I published the second edition of my book A Walk with Purpose. I wrote the first edition in three months, as I was gravely concerned at the time that my health would deteriorate, and the manuscript wouldn’t get finished. But now I was afforded much more time to carefully review, edit, and rewrite the story. I’m finally happy with the result.

Shortly thereafter, I spent a week-long vacation with my parents, grandmother, and aunt in Lake Louise, a hamlet in Banff National Park in the Canadian Rockies. The company, weather, food, and scenery were wonderful. For a whole week, I almost forgot about cancer – especially as my appetite returned. So did my eyebrows and eyelashes – thank goodness.

Having not satisfied my zeal to hike, upon my return home from Canada I took Humphrey for a 5.5-mile walk on the Appalachian Trail. The Delaware Water Gap National Recreation Area is home to 28 miles of the Appalachian Trail and is less than a 2-hour drive from where we live. The heat, humidity, and insects were a sharp contrast to hiking in Canada, but it was important for me to get back to another one of my favorite places.

Lorie and I attended a fabulous Memorial Day barbeque with friends. This only reinforced the sense of normalcy during the period, including imbibing a few adult beverages. Certainly not one of my healthier decisions, but for a brief moment, I wasn’t that terminal cancer guy. It was nice.

Just last week, I returned to my hometown of Chicago in connection with the year’s largest cancer confab – the American Society of Clinical Oncology (ASCO) annual meeting. I did a speaking event and second edition book signing for McKesson. In my 25-years working in the industry, I’ve never felt more welcomed as I did that night. It was truly humbling.

During the Chicago trip, I also had an opportunity to see many individuals for the first time in a while. This included Dr. James Gulley of the NIH, Brad Loncar, and many other longtime industry friends. Most importantly, I was able to reconnect with one of my younger cousins for the first time since Christmas 2012. It was exciting to hear about her husband’s brand new coffee business – Sandhill Coffee.

For the past two months, I’ve enjoyed being able to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy. It’s been amazing and definitely the “pause that refreshes” – just as I had hoped.

But there is still so much to be done with regard to education and awareness of the human papillomavirus (HPV), its link to many cancers, and the available prophylactic vaccine. Accordingly, I hope that my “walk with purpose” as an expert patient is far from finished.

Towards the end of June 2018, I’ll have my first CT scan since being off treatment to assess whether my disease is progressing, regressing, or continuing to remain stable. The results of which will profoundly shape my future plans.

Until then, I’m going to continue to maximize this break from treatment and continue to enjoy every moment I can. I’m especially looking forward to school being out soon, so I can spend more quality time with my wife and daughters!

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The Pause that Refreshes

For the past few years, I’ve received three separate cancer treatments with little reprieve from many of the associated toxicities. This month, I finished my ninth cycle of therapy – a combination of two chemotherapeutics (carboplatin and paclitaxel). The chemotherapy has significantly reduced the size of tumors in my lungs and spleen, but they have not entirely gone away.

This week, I had my periodic CT scan to assess whether the cancer is progressing, regressing, or continuing to remain stable. The positive results, which came today, show no new metastases (the spread of cancer) and unchanged disease in my spleen and lungs since my last CT scan from January 19, 2018.

Michael Becker’s CT scans from June and December 2006, which show the initial progression of disease in both lungs.

After a great deal of consideration, I have decided to take a well-deserved break from treatment. It will allow me to recharge, improve my quality of life, and even allow me to travel and hike. In a few months, I’ll have another CT scan to see how my cancer behaved during the break. I hope that it remains stable or perhaps progresses slightly, although anything is possible during this period. I still recall how quickly I went from “no evidence of disease” to the progression of disease in both lungs and spleen (see accompanying image).

I’m quite proud of everything that I’ve accomplished since my initial diagnosis back in December 2015. I wrote and published my memoir, significantly raised awareness for the human papillomavirus (HPV) and its link to six cancers through numerous articles, radio, and television interviews, authored more than 80 blog posts, vehemently opposed the Right to Try Act, and even published a collection of my photography work.

I believe that my current “walk with purpose” as a patient advocate is far from finished. But with spring and summer around the corner – I want to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy.

The title of this post reflects the 1929 slogan used in advertising for Coca-Cola. It takes on special meaning for me, as I hope that this pause in therapy helps me heal both physically and mentally.  And that would indeed be very refreshing.

Whirlwind

The past week is a blur. It started last Saturday with the airing of a national television segment on CBS during both their morning and evening broadcasts. Reported by Dr. Jon LaPook, Chief Medical Correspondent for CBS News, the show highlighted the recent rise in head/neck cancer in men due to “oral” human papillomavirus (HPV) and featured my story as an example. Special thanks to everyone who played a role in creating this important segment! A replay is available below:

On Monday, I traveled to Washington, DC via train to speak at the Rare Disease Legislative Advocates 2018 Legislative Conference in the session titled, “Right to Try – Is it a Solution?” I haven’t been shy about my cynical perspective on this pending legislation. You can learn more by reading my opinion article on the topic (click here) and listening to a replay of my interview with NPR’s Scott Simon (click here).

Panel session titled, “Right to Try – Is it a Solution?”

Tuesday morning marked the beginning of my ninth cycle of chemotherapy at Memorial Sloan-Kettering Cancer Center (MSKCC) in NYC, which will slow me down a bit. Recall that each chemotherapy cycle is four weeks, beginning with both carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. Towards the end of March, I’ll have another CT scan to determine if my disease is still stable or progressing. In this regard, I’m hoping March indeed goes out like a lamb!

Michael Becker receiving chemotherapy at MSKCC on 2/27/18

In the meantime, I’m participating in several additional media opportunities to help tell my story and create more awareness for HPV and its link to cancer in both men and women. Interestingly, the International Papillomavirus Society (IPVS) has declared this Sunday, March 4th as “International HPV Awareness Day” to promote awareness of and education around HPV infection, how it spreads, and how HPV infection and the cancers it causes can be prevented. Click here for more information.

Cervical Cancer and HPV

What a relief that the weather for yesterday’s periodic commute to New York for chemotherapy was much warmer than the bone-chilling, windy backdrop of the past several days. Even more pleasant was a punctual public transportation commute, which got me to my appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) on time. Work on the signals and tracks at NY Penn Station frequently delayed my trains in recent weeks, so I never know quite what to expect these days.

My blood counts were amenable to the scheduled dose of chemotherapy, which was infused as planned. My positive transportation karma continued, and I was back home resting in Pennsylvania by mid-afternoon. No more treatment until after my CT scan later this month for an update on my disease status (queue “scanxiety”).

Traveling alone, I took time during my commute to listen to music on my headphones and catch up on news events. Scrolling through my Twitter feed, I came across the fact that January is Cervical Cancer Awareness Month. It caught my eye, as cervical cancer and oropharyngeal cancer (tongue, throat, and tonsil – as in my particular diagnosis) collectively account for more than two-thirds of the cancer cases caused by high-risk human papillomavirus (HPV) infection. According to the CDC, more than 30,000 new cancers attributable to HPV infection are diagnosed each year.

HPV is the most common sexually transmitted infection in the United States. Nearly 80 million people — about one in four Americans — are currently infected, and about 14 million people become infected with HPV each year. Almost all sexually active people get infected with HPV at some point in their lives.

For most people exposed to HPV, the virus goes away on its own, but a small group of people will experience health problems — sometimes even 20 or 30 years after the initial contact — and go on to develop cancer. In these individuals, HPV can cause changes in the body that can lead to the development of:

  • Cervical, vaginal and vulvar cancer in women;
  • Penile cancer in men; and
  • Oropharyngeal (the tongue, tonsils, and back of the throat), anal, and rectal cancer in both women and men.

The good news is that HPV infections and the seven cancers attributed to them are highly preventable with available vaccines that protect against the high-risk HPV 16 and HPV 18 types responsible for 90 percent of HPV-related cancers. The bad news is that despite reliable data showing the safety and benefits of the vaccines, the rate of vaccination in both sexes is disappointing. Across America, only 49.5 percent of girls and 37.5 percent of boys were up to date with the recommended HPV vaccination series, according to a 2017 CDC report. Interestingly, around 80 percent of adolescents receive two other recommended vaccines—a vaccine to prevent meningococcus, which causes bloodstream infections and meningitis, and the Tdap vaccine to prevent tetanus, diphtheria, and pertussis.

So, with PLENTY of room for progress in vaccinating both girls and boys against HPV, please schedule a time to talk to your pediatrician now to eradicate this cancer-causing virus.

PS – There is undoubtedly a role for gender-specific cancer awareness activities, such as Cervical Cancer Awareness Month. From pink ribbons to professional sports apparel, breast cancer awareness advocates have done a fantastic job spreading the word that October is National Breast Cancer Awareness Month. But each September, during National Prostate Cancer Awareness Month, the color blue doesn’t consume the country with the same vigor. And reduced awareness correlates with less money*, as prostate cancer research receives less than half of the funding as breast cancer research from the American Cancer Society. On this note, perhaps it is time to at least consider “HPV-Related Cancer Awareness Month” or something gender neutral?

* Of course, correlation does not imply causation

New Study Highlights Importance of HPV Prevention

A new study published in the journal Cancer represents the largest population-based study of survival for human papillomavirus (HPV)-associated cancers in the United States, covering 59% of the population. The study covered 220,211 histologically-confirmed cases diagnosed during 2001 through 2011 (see Figure 1).

HPV is the most common sexually transmitted infection in the United States. Nearly 80 million people — about one in four Americans — are currently infected and about 14 million people become infected with HPV each year. Nearly all sexually active people get infected with HPV at some point in their lives.

For most people exposed to HPV, the virus goes away on its own, but a small group of people will experience health problems — sometimes even 20 or 30 years after the initial contact — and go on to develop cancer. In these people, HPV can cause changes in the body that can lead to the development of seven different types of cancer:

  • Cervical, vaginal and vulvar cancer in women;
  • Penile cancer in men; and
  • Oropharyngeal (the tongue, tonsils and back of the throat), anal, and rectal cancer in both women and men.

According to the new study, HPV-related oropharyngeal cancer surpassed the incidence of cervical cancer during the period (80,151 versus 79,425 patients, respectively). Of the 80,151 oropharyngeal patients, nearly 80 percent (63,457) were male. Collectively, these two cancers accounted for more than two-thirds of the cases in the study.

Figure 1 (adapted from Cancer Volume 124, Issue 1, January 1, 2018, Pages 203–211)

For women diagnosed with cervical cancer, the 5-year relative survival rate was high (64.2 percent), which may reflect the availability of screening tools and early detection. Patients diagnosed at the localized stage (only in the part of the body where it started) generally have a better prognosis compared with those diagnosed at regional or distant stages. In this regard, nearly one-half of cervical cancers in the study were detected at the localized stage.

The 5-year survival rate for patients with HPV-related oropharyngeal cancer (51.2 percent), was the second lowest among HPV-associated cancers. Study researchers observed that more than 60 percent of HPV-associated oropharyngeal cancers were diagnosed at the regional stage (spread to adjacent organs, structures, or regional lymph nodes) compared with less than 40 percent for other HPV-associated cancers. Only 15.9 percent of HPV-related oropharyngeal cancers were diagnosed at the localized stage.

The authors conclude that in the absence of routine screening, with the exception of cervical cancer, primary prevention through HPV vaccination is essential—especially for oropharyngeal cancer, which is expected to become the most common HPV-associated cancer by 2020. HPV vaccines are approved and recommended for use among both boys and girls.

Sadly, only 49.5 percent of girls and 37.5 percent of boys in the United States were up to date with the HPV vaccination series, according to a 2017 CDC report. In sharp contrast, around 80 percent of adolescents receive two other recommended vaccines—a vaccine to prevent meningococcus, which causes bloodstream infections and meningitis, and the Tdap vaccine to prevent tetanus, diphtheria, and pertussis.

Please talk to your pediatrician about vaccinating your 11-year-old boys and girls against HPV today to eradicate this cancer-causing virus.

Two Years Gone

You’ll know from the opening pages of my memoir A Walk with Purpose that it was the day before Thanksgiving in 2015 when I first discovered a large lump on the right side of my neck. The discovery catapulted me on a journey that I never could have imagined, full of twists and turns and changing the very fiber of my being—physically, emotionally and spiritually.

A lot has changed in the past two years—some good, some bad, some perhaps downright ugly. But Thanksgiving has always been one of my favorite holidays—a time of reflection and giving thanks for the goodness of the season past instead of complaining about what we don’t have.

Throughout the process of writing my memoir, I was constantly amazed to see how all the gifts and experiences of this world came together like tiny puzzle pieces to reveal the bigger purpose of my life. In particular, how an unlikely career path to the biotechnology industry would help forge key relationships, open new doors, and help me navigate a cancer diagnosis and treatment through the knowledge gained over decades of service and leadership. Most importantly, how I could use all of the aforementioned to help others facing head and neck cancer caused by the human papillomavirus (HPV).

In some ways, my revelation was reminiscent of the first time I saw the movie Signs written and directed by M. Night Shyamalan. In the movie, a father and former priest lives with his asthmatic son, his daughter who constantly leaves glasses of water sitting out around the house, and his younger brother, a failed minor league baseball player, on an isolated farm in Bucks County, Pennsylvania (coincidentally where we have lived for more than 15-years…). The father lost his faith and gave up his priesthood after his wife died in a local traffic accident. Towards the end of the movie, a crucial scene reveals the unlikely connection between asthma, glasses of water, and the mother’s final words to her husband instructing his brother to “swing away.” At the end of the movie, the father is shown returning to his priestly duties, apparently having regained his faith.

During 2017, I was fortunate to write and publish (then rewrite and republish…) my memoir. Since my diagnosis, I’ve also published a total of 70 posts (gulp!) on my patient blog. Supporting these efforts, I’ve worked with a publicist and conducted numerous interviews and penned guest editorials for various media outlets. All of these actions designed to: 1) help increase awareness of HPV and its link to six cancers in men and women; 2) underscore the need for additional prevention efforts for HPV-associated cancers, including efforts to increase vaccination coverage; 3) correct the misperception that HPV is mainly a disease affecting women; and, 4) highlight how HPV can be spread in the fluids of the mucosal membranes, which line the mouth, throat and genital tracts. Looking back at my efforts, I hope you’ll agree it has been a productive year.

I’m currently going through my third treatment regimen (chemotherapy) with the simple hope of buying more time. My body is weary from repeated assault with toxic chemicals aimed to keep the cancer at bay—hoping to see the day when a better treatment option becomes available. Fortunately, my current quality of life allows me to continue my walk with purpose. In fact, today I am doing a couple of media interviews and meeting with a head and neck cancer patient support group in Princeton, New Jersey.

My next CT scan has been scheduled for the last week of November. The results of which will inform whether or not my cancer continues to shrink, stays stable, or is progressing. Regardless of the outcome, I strive to simply live in the moment and take advantage of the Thanksgiving period to consider how we can spread more happiness around, to look back at all the great memories and good people who came into our lives.

May the good things of life be yours in abundance not only during November but throughout the coming year. Thank you to everyone with an interest in my story for your continued support and for keeping in touch!

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!