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 cold 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 catchup on news events. Scrolling through my Twitter feed, I came across the fact that January is Cervical Cancer Awareness Month. This 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. 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 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 strong 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 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 an amazing 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 verve. 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.

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!

No Such Thing as “Risk-Free”

In a recent guest editorial that I penned for BioCentury, I referenced that a parent’s choice whether or not to vaccinate their child against the human papillomavirus (HPV) isn’t a “risk-free” choice. Every drug has risks – consider the following statement by the U.S. Food and Drug Administration (FDA): “although medicines can make you feel better and help you get well, it’s important to know that all medicines, both prescription and over-the-counter, have risks as well as benefits.” I would also point out that there are risks in forgoing a medication.

Let’s take a look at the HPV vaccine’s side-effects according to the prescribing information for Gardasil® 9 (Human Papillomavirus 9-valent Vaccine, Recombinant). The most common side effects include pain, swelling, redness, itching, bruising, bleeding, and a lump where your child got the shot, headache, fever, nausea, dizziness, tiredness, diarrhea, abdominal pain, and sore throat. These are adverse events disclosed by the sponsor (Merck & Co., Inc.) to the FDA from completed clinical trials of Gardasil 9. Since licensure in 2006, over 270 million doses of HPV vaccines have been distributed and the sponsors are obligated to report any new side effects to the FDA.

What’s that you say? You don’t trust the pharmaceutical industry? The Global Advisory Committee on Vaccine Safety (GACVS), an independent expert clinical and scientific advisory body that provides the World Health Organization (WHO) with scientifically rigorous advice on vaccine safety issues of potential global importance, first reviewed the safety data for HPV vaccines in 2007 and subsequently in 2008, 2009, 2013, 2014, 2015, and 2017. In each period, the GACVS examined various vaccine specific safety issues, such as links to Guillain-Barré syndrome (GBS) and other autoimmune safety issues. No other adverse reactions have been identified and GACVS considers HPV vaccines to be extremely safe. According to the WHO, there are now accumulated safety studies that include several million persons and which compare the risks for a wide range of health outcomes in vaccinated and unvaccinated subjects.

Early on, the GACVS was presented with signals related to anaphylaxis and syncope related to the HPV vaccines. According to the GACVS, the risk of anaphylaxis from HPV vaccines has been characterized as less than 2 cases per 1,000,000 doses, and syncope was established as a common anxiety or stress- related reaction to the injection. Anaphylaxis is a severe allergic reaction that needs to be treated right away with an epinephrine (adrenaline) shot. Anaphylaxis is rare, and most people recover from it. Syncope, also known as fainting, is a loss of consciousness and muscle strength characterized by a fast onset, short duration, and spontaneous recovery. It is caused by a decrease in blood flow to the brain, usually from low blood pressure. For these reasons, the prescribing information for Gardasil 9 recommends observation of the individual for 15 minutes after administration.

Next, let’s consider the risks of not getting vaccinated against HPV. Again, according to the prescribing information for Gardasil 9, the vaccine helps protect girls and women ages 9 to 26 against cervical, vaginal, vulvar, and anal cancers and genital warts caused by 9 types of HPV. Gardasil 9 also helps protect boys and men ages 9 to 26 against anal cancer and genital warts caused by those same HPV types. Accordingly, individuals who do not get vaccinated against HPV are at risk for the aforementioned cancers and genital warts.

In addition, the 9 types of HPV that infect the genital areas can also infect the mouth and throat (called oropharyngeal cancers). HPV is thought to cause 70% of oropharyngeal cancers in the United States, with HPV type 16 causing 60% of all oropharyngeal cancers. The HPV vaccine was originally developed to prevent cervical and other less-common genital cancers and has been shown in clinical studies to prevent cervical and other precancers. However, HPV vaccines could also prevent oropharyngeal cancers because the vaccines prevent infection with HPV types that can cause oropharyngeal cancers.

HPV vaccines were not available until I was age 38, which is well-beyond the upper age limit of 26 when the vaccines are considered effective. In late 2015, I was diagnosed with poorly differentiated, oropharyngeal squamous cell carcinoma, HPV type 16 related. My three treatment regimens thus far have included: chemoradiation, immunotherapy and currently chemotherapy.

Side-effects that Michael Becker has experienced from cancer and its treatment (click image to enlarge)

My diagnosis is terminal, so “death” would be the primary side effect from the disease that I would gladly forgo in favor of any of the aforementioned HPV vaccine side effects. Setting my grim humor aside for the moment, there are more than a dozen other side-effects that I have personally experienced to date from either cancer or its treatment (see accompanying image for details). And these side-effects don’t include others that I haven’t personally experienced, such as kidney damage.

I’m an advocate of HPV vaccination and strongly encourage parents to speak with a physician when it comes to deciding whether or not to vaccinate a child. The purpose of this blog post is to underscore that deciding not to vaccinate against HPV isn’t a risk-free decision. In my experience, the diagnosis of any one of the six cancers resulting from HPV infection is associated with plenty of important risks for parents to also consider.

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The Space Between

The purpose of my blog and entries is multifaceted. Some are designed to entertain, while others focus on education and enlightenment for those suffering from cancer and the people who surround them. Others are simply updates on my disease for family and friends.

I don’t consider myself an optimist or pessimist, but rather a realist. Accordingly, I prefer to let the facts in my blog speak for themselves and let you, the reader, decide if the glass is half full or half empty.

For me, life is usually viewed in absolutes. Things are either black or white; rarely, if ever, shades of gray. And I like it this way…nice and neat. This is probably why uncertainty, which falls into the shades of gray zone, doesn’t sit well with me. Unfortunately, living with a terminal cancer diagnosis introduces a fair amount of uncertainty – almost from day one.

It starts with waiting for the initial diagnosis. Is it cancer or not? Usually this is a black or white analysis. The diagnosis of cancer then leads to a myriad of uncertainties. The patient wants to know details about the treatment options, their side effects and quality of life, and whether the potential for cure exists. Lots of gray zone issues suddenly appear.

Although clearly outside of my comfort zone, I’ve been able to successfully navigate the sea of uncertainties for the past two years with one notable exception: how much time do I have remaining? Or at the very least, how much time remaining where my quality of life allows me to function as a productive member of society?

Right now, life isn’t horrible. Sure, I suffer side effects from weekly chemotherapy treatment, such as loss of appetite and fatigue. And I lost my hair but save a ton of money on haircuts and shampoo. Nevertheless, I’m able to enjoy time with family and friends and keep busy with my mission to help raise awareness of the human papillomavirus (HPV), six cancers that are directly linked to HPV, and the available vaccines that could prevent such cancers for others in the future.

Enduring weekly chemotherapy is made easier given the fact that my tumors decreased in size according to my last imaging procedure. Exactly what the tumor regression means in terms of extending my life is unknown. Reality check – published scientific literature still favors that celebrating the New Year isn’t a likely event for me.

However, every patient is different – and there is one absolute truth in life: no one knows exactly when or how they will die. While perhaps the exception versus the norm, we’ve all heard dramatic stories about people living longer than originally expected. My realist nature makes me reject such anecdotes, but it does allow me to consider the fact that progress in treating cancer is advancing at a rapid pace and perhaps my existing treatments will buy me just enough time to receive some new exciting approach that keeps my disease in check.

In the interim, my greatest challenge is what to do with the “space between.” I’m talking about the period between now and when I eventually die, which could be measured in as little as one, two, or three months or as many as several years. No one knows for sure.

For example, I could start to write a new book. Although having recently gone through that process, it is a tremendous investment of time and focus away from spending quality time with family and friends. While it could be a worthwhile sacrifice, I just couldn’t bear the thought of embarking down that road again without knowing that I had sufficient time to finish it.

My other passion, photography, is made challenging since I really don’t know how much energy or how I’m going to be feeling on any given day. This makes scheduling photo sessions weeks in advance to allow adequate preparation time a risky proposition at best. For example, I never could have predicted ending up in the hospital on three separate occasions in July/August (including a trip to the intensive care unit). While life has been quite calm as of late (thank goodness…) there is always the chance that something else is lurking around the corner.

Besides, I was already able to complete two significant bucket-list items this year with the publication of both my memoir A Walk with Purpose and large format, high-quality, coffee table photography book, Strength, Confidence, & Beauty. In the near future, could I really top what I’ve already accomplished in each area?

Equally important to projects that produce legacy materials of a life well-lived, there is that pesky task of providing income to help support my family. I haven’t quite found an appropriate place on my resume for “terminal cancer patient” and I suspect few employers would find that an attractive attribute. On the flip side, freelance work or part-time positions might be workable solutions.

Don’t get me wrong, I’m not laying on the couch every day pondering the “space between” and wallowing in depression. I’ve been keeping plenty busy promoting my books and taking advantage of the plethora of amazing media outlets that express an interest in helping me with my HPV awareness mission. Perhaps that is simply how I’m meant to fill the space between?

At first, I thought if I could simply touch one person’s life through my efforts then I made a difference. But I’ve been inundated with messages from family, friends, and complete strangers who share personal stories about having their children vaccinated for HPV as a direct result of my efforts. Is there anything else I could do that would be as gratifying?

If you or a loved one is affected by cancer, I’d love to hear how you deal with the space between. Rather than messaging me directly, please feel free to comment on this post so that others can benefit from your shared experience.