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!

SaveSave

Second Edition

In January 2017, I first started writing A Walk with Purpose. It was quite an undertaking. To make the endeavor more challenging, I was gravely concerned at the time that my health would deteriorate, and the manuscript wouldn’t get finished. With great urgency, I completed and published the first edition by the end of April 2017.

In October 2017, I released a slightly updated version. Since then, however, a lot has changed. Quite a lot, actually. Aside from my cancer journey, I’ve grown both as a writer and as an individual.

So, I recently dusted off my keyboard and began writing the second edition. My pup Humphrey was not amused that I spent many, many days locked in my home office writing again. But, I’m pleased to report that the “new” paperback and Amazon Kindle versions are available as of today (click here). Coincidentally, published almost precisely a year after the original release.

The second edition of A Walk with Purpose is mostly a rewrite. The ending reflects my situation as of the current day. Some text was removed to make room for newer information. Spelling and grammar checked (and rechecked). And much more.

I’m very proud of the second edition. It’s finally the story that I wanted to tell.

SaveSave

Metaphors of Spring

One thing cancer has taught me is to seize even small moments to enjoy being alive. Today’s beautiful spring weather made it irresistible to take our Golden Retriever, Humphrey, for a walk at nearby Tyler State Park. I had plenty of other things to do, but surely they could wait. Cooler temperatures and rain were forecast for the coming days.

I witnessed so many metaphors for life, death, rebirth, and hope during the walk. And while I’ve been to the park numerous times, it was refreshing to view the landscape through a very different lens.

I came across a pair of mallards wait patiently for eggs to hatch. I looked at barren trees wondering if they were dead or alive in the absence of greenery. Bright yellow and purple colors appeared out of nowhere among a sea of dead grass and branches. I saw the pure happiness of our pup, who was excited just to be outside and experience the scents of the season.

While it’s been a long, cold winter, the arrival of spring signals relief. Flowers bloom, leaves grow, and nature comes alive again. Similarly, after much cold and suffering, my body and mind are starting to come back to life during a recent reprieve from toxic treatment.

And although the flowers start to bloom again, there are still chilly mornings and evenings that serve as a stark reminder that winter only recently passed. Summer is yet to come, but we’re not there yet. Today was just a glimpse.

Cancer survivors often worry about things to come. Nature, however, appears immune to this concern. The budding leaves and flowers don’t seem worried they won’t make it to blossom. The pair of ducks didn’t look panicked that they will find ample food and successfully raise their young. Nature didn’t appear to have a “plan B” if things didn’t work out this time. Nor do I.

Yes, today I appreciated spring’s arrival, and it brought me great happiness. More importantly, it made me anticipate the days ahead. The chance to explore new ideas and opportunities. An opportunity to start over and reinvent once again.

Uneventful Streak Ends

It started with a runny nose and sneezing last weekend. Then came a cough and a mild fever that never went above 99.7 Fahrenheit – that is until the following Wednesday. A brief telephone discussion with the doctor on call late that evening confirmed that a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility was in order.

Following my latest round of chemotherapy, a fever of 100.4 Fahrenheit or higher is disconcerting. It could signal that I’m neutropenic – running dangerously low on a type of white blood cell (neutrophils) that serve as the body’s primary defense against acute bacterial and certain fungal infections. The chemotherapy I’ve been receiving can reduce the number of neutrophils circulating in the blood. Alternatively, a fever could be associated with the flu, which is particularly dangerous this season and breaking records.

Lorie and I started packing for an overnight stay at the MSKCC “bed and breakfast” as we like to call it. Before heading out, I hugged each of our dogs – just in case. Unfortunately, that simple action set into motion a rush of feelings and steady stream of tears down my cheeks. I was a total mess by the time Lorie backed the car out from the garage. Our daughters weren’t home at the time, which in retrospect was probably best.

At first, I failed to appreciate why Lorie attempted to set a new land speed record for shortest travel time between Bucks County, PA and New York City. Then, I remembered how I narrowly missed having a tachycardia event (abnormally fast heart rate) on the New Jersey Turnpike during our last trip to MSKCC’s urgent care facility in August 2017 when I ended up in the ICU.

Upon arrival at urgent care just before midnight, a series of tests were ordered – blood work, urine, chest x-ray, and nasal swab to test for influenza. The blood work came back first and my absolute neutrophil count (ANC) was 800 cells per microliter of blood. With an ANC below 1,000 cells per microliter of blood, the risk of infection increases. Combined with my fever, the medical team informed me that I was going to be admitted to the hospital and given a broad spectrum, intravenous antibiotic Zosyn® (piperacillin and tazobactam).

One by one, the other test results came back normal – that is until the nasal swab revealed I was positive for Influenza B. Influenza A and B are the two main types that routinely spread in humans and cause seasonal flu epidemics. Fortunately, I had received a flu shot this season, as this can help reduce the severity of the virus.

Alas, being hospitalized ended the longest “uneventful” streak of my cancer experience. But for six glorious months, living with cancer was relatively dull and boring. And it was wonderful.

With the source of my fever identified as the flu, I was prescribed Tamiflu® (oseltamivir phosphate) and the general plan was to release me from the hospital as soon as my ANC returned to 1,000 or higher. My prior chemotherapy was given on January 30th, so its adverse effect on my blood counts should be diminishing. Patients often have their lowest number (called a nadir) and highest risk of infection around 7 to 10 days after the start of chemotherapy.

However, my next ANC count was 400. When ANC falls below 500 cells per microliter (severe neutropenia), the risk of infection increases significantly. Accordingly, my stay at the bed and breakfast was extended.

Michael and Lorie Becker at MSKCC

By Friday, my ANC rebounded slightly to 700. Heading in the right direction, but still below the 1,000-level needed for my release home. I felt much better than when I was admitted, which was frustrating. In fact, the fever went away as did a runny nose, sneezing, and coughing.

A repeat blood test was scheduled for very early Saturday morning, with the expectation that my ANC would finally rise above 1,000 and we’d be sent home. Or so I hoped. But the test results showed a slight decrease from the prior day to 600.

I was then given a shot of Neupogen® (filgrastim), which works like a natural protein in your body to promote the growth of new white blood cells. Interestingly, Neupogen was among the very first biotechnology products that I learned about during my introduction to the sector in the late 1990s. It was approved by the Food and Drug Administration (FDA) back in 1991.

My blood counts will continue to be monitored until the ANC improves, but sometimes it can take 24-hours to see the effect of Neupogen. And so, we wait.

Never Thought I’d Do It Again

Despite the hectic backdrop of late, I’ve been busy researching treatment options for patients like me with incurable squamous cell carcinoma of the head and neck (SCCHN). My first inclination was to pursue another immunotherapy, as there are a lot of clinical trials with novel immunotherapies and combinations currently recruiting. With my disease progressing, however, I felt that perhaps a more aggressive approach backed by data was warranted.

For example, one viable option is the chemotherapy-based “EXTREME” regimen with 5-fluorouracil (5-FU), cisplatin or carboplatin, and the monoclonal antibody Erbitux® (cetuximab). Initially, I discounted this option because 5-FU-based regimens can be associated with significant toxicities. Nonetheless, a multicenter phase III trial in SCCHN demonstrated a 36% longer median overall survival using the EXTREME regimen versus chemotherapy alone (10.1 months vs. 7.4 months, respectively). It was the kind of data-based treatment I was seeking, but I was really against receiving 5-FU.

One of the many nasty side effects from 5-FU is palmar-plantar erythrodysesthesia (PPE), also known as hand-foot syndrome (HFS). There are currently no treatments or preventions for HFS, which is characterized by tingling in the palms, fingers and soles of feet and by erythema, which may progress to burning pain with dryness, cracking, desquamation, ulceration and oedema.

I learned a lot about HFS while serving as CEO of VioQuest Pharmaceuticals. The company was developing a 1% uracil topical formulation to prevent HFS. Uracil is a naturally occurring substrate that directly competes with 5-FU for the enzymes that metabolize 5-FU to its toxic metabolites. When applied topically, the concentration of uracil in the skin greatly exceeds the concentrations of 5-FU, thus blocking the formation of 5-FU’s toxic metabolites. Unfortunately, there haven’t been any updates on the product’s development status since April 2010 according to ClinicalTrials.gov.

When we arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) late Sunday evening, I had already decided that if it came down to the EXTREME regimen as my best option – I would simply forgo further treatment, contact hospice, and let things progress naturally.

Fortunately, my medical oncologist at MSKCC, Dr. David Pfister, suggested replacing 5-FU with weekly paclitaxel, resulting in a chemotherapy regimen known as PCC (paclitaxel, carboplatin, and cetuximab), that has been found to be efficacious and well-tolerated in patients with SCCHN when used as induction chemotherapy. As a result, 5-FU and paclitaxel can be viewed as somewhat interchangeable, but paclitaxel offers a more favorable toxicity profile.

Unlike the two chemotherapeutics, cetuximab is a chimeric human-murine monoclonal antibody (mAb). MAb therapy, the most widely used form of cancer immunotherapy today, is a form of “passive” immunotherapy that often does not require the patient’s immune system to take an active role in fighting the cancer.

Cetuximab targets and binds to epidermal growth factor receptors (EGFR) that are found on the surface of many normal cells and cancer cells. Doing so stops the cell from continuing the signaling pathway that promotes cell division and growth, effectively stopping the cancer by stopping the cancerous cells from growing and multiplying.

I’m a big believer in the power of immunotherapy and believe that my recent treatment with the experimental M7824 (first-in-class, bispecific fusion protein of an avelumab-like antibody linked to two molecules of TGF-beta trap) had a positive effect on my disease. More importantly, there may even be synergy between what M7824 has done so far in combination with the PCC regimen. Even if the PCC regimen only shrinks my lung tumors, the reduction in disease burden could help future immunotherapy treatments be more efficacious.

Starting treatment with the two chemotherapeutics (paclitaxel and carboplatin) on 7/18/17 at MSKCC

Having plenty of time to weigh the future treatment options while the bleeding issue with my chest tube was being addressed, I decided that Dr. Pfister’s proposed PCC regimen made a lot of sense. Much to my surprise, I was able to start treatment with the two chemotherapeutics (paclitaxel and carboplatin) on Tuesday and return home that evening. Next Tuesday I will receive my first loading dose of cetuximab.

Regarding the bloody drainage from my chest tube referenced in my prior post, I had a liter of fluid drained using a vacuum-like device connected to my catheter and the drainage returned to a healthier apple juice color. I was started on Lovenox again while continually monitoring the fluid output through the tube looking for the color to change back to bloody. Fortunately, the color remained the same and it looks like Lovenox wasn’t the likely culprit. I’m back on Lovenox and so far, so good.

I never thought I’d say the phrase “I’m back on chemotherapy.” But here I am, continuing the fight. Why? Because Lorie slept at a hotel on our second night in NYC to get some much-needed rest and my mind went drifting down memory lane as I sat alone in the patient room at MSKCC. I thought about all the good times we shared, the family we raised, and how much we love each other. I cried and cried. Suddenly, I knew that if chemotherapy could give me even just one more day with her, it would be worth the drug’s side effects.

And yes, there is still the hope of doing better and living longer than expected. The chances are remote, but not zero. More updates soon…

Damned If I Do, Damned If I Don’t

As discussed in my prior blog post, the recent CT scan at the National Institutes of Health (NIH) didn’t turn out as we had hoped. Not only did the cancer show signs of progressing, but a blot clot was also found in my left iliac artery near my pelvis.

Blood clot illustration

I had been on Lovenox (enoxaparin) for just under one week, when I noticed that the daily drainage from my chest tube looked much more like blood than the usual straw color. Equally disconcerting, the volume of drainage was greater than usual.

At the suggestion of my treating physicians, we stopped at the emergency room at a local hospital in Bucks County (which will remain nameless) on Sunday morning around 10am simply to have a complete set of blood work done. The concern being that the loss of so much blood via the chest tube could necessitate a transfusion.

Fortunately, my hemoglobin levels were okay (low hemoglobin count may indicate you have anemia) and a transfusion wasn’t needed. However, a big problem remained – finding the cause of bleeding coming from my pleural effusion and how to stop it.

One thing was almost certain – the anticoagulant Lovenox likely played a role. Discontinuing Lovenox could help reverse the bleeding, but I would be left with an untreated blood clot that could cause major problems if it moved from its current location. Damned if i do, damned if i don’t.

Quite the conundrum and not one to take lightly. As such, after waiting around the local hospital until early evening with no solutions, nurses, or physicians in sight, Lorie took control and requested that I be immediately discharged. Shortly thereafter she drove us to New York City to visit Memorial Sloan-Kettering Cancer Center (MSKCC). I already had an appointment scheduled with my medical oncologist (Dr. David Pfister) for Tuesday to discuss possible next-steps for treatment, such as chemotherapy, and the drive to NYC is shorter than going to the NIH in Bethesda, MD.

We arrived after midnight, but the urgent care team at MSKCC promptly assessed my condition. More blood work was drawn along with a chest x-ray and CT scan. Simply looking at the chest x-ray, I could tell that the pleural effusion was quite large. This shouldn’t be the case, as I drain it daily.

For now, stopping the internal bleeding is more important than addressing the blood clot – although both issues require immediate attention. I’ve already discontinued the Lovenox and the MSKCC team will assess various options to access and drain the large amount of fluid still trapped in my left lung. The impact of the fluid is not insignificant, as I am short of breath walking short distances or up/down stairs. Coughing also has gotten worse and leads to feeling light-headed or dizzy.

Assuming the pleural effusion can be controlled, the next step would be to deal with the blood clot. One solution is to place a filtering device in the Inferior Vena Cava (IVC, a large vein in the abdomen that returns blood from the lower body to the heart) that could help prevent a pulmonary embolism, which is fatal in one-third of patients who suffer from it. The filter essentially traps blood clots and prevents them from reaching the lungs or heart.

Of course, aside from the aforementioned, I am interested in exploring potential new treatment options and look forward to upcoming physician appointments. Until then, I’ve been admitted to MSKCC for at least a day or two and will provide any meaningful updates via Twitter, etc.

Thankful for Cancer?

In recent blog posts, I discussed my interest in trying new things, such as transcendental meditation, acupuncture, sound therapy, etc. I connected with other terminal cancer patients and found that some of them were pursuing similar avenues.

Through these interactions, I was introduced and started reading The Tibetan Book of Living and Dying by Sogyal Rinpoche, Patrick D. Gaffney, and Andrew Harvey (thank you @StacieChevrier). I haven’t read much of the book yet, but so far it is chock full of valuable insights and memorable quotes. For example:

“Tibetan Buddhists believe that illnesses like cancer can be a warning, to remind us that we have been neglecting deep aspects of our being, such as our spiritual needs. If we take this warning seriously and change fundamentally the direction of our lives, there is a very real hope for healing not only our body, but our whole being.”

The quote implies that cancer could actually be a good thing. Similarly, in the past I’ve come across posts from other cancer survivors talking about the various ways they were actually “thankful” for getting cancer. I must admit, at the time I found such notions absolutely ludicrous. I certainly wasn’t thankful for having cancer. F@ck cancer!

However, I am starting to perhaps better understand and appreciate the nature of such remarks. For example, as stated in the quote above “…cancer can be a warning, to remind us that we have been neglecting deep aspects of our being.”

In the past, I was very skeptical of meditation, acupuncture, and other spiritual needs. Cancer opened my eyes to at least try new techniques, and now I am a believer and realize the void that they can fill.

By writing and publishing my memoir A Walk with Purpose along with my photography book Strength, Confidence & Beauty: A Collection of Female Portraits, I learned a lot about myself and my life’s journey. Tackling these activities were always in the back of my mind, but somehow there was never enough time to focus on them. Cancer provided both the motivation and a sense of urgency.

Left to right: Michael, Sheff, Brad (and, of course, Humphrey). Click to enlarge.

Through my cancer diagnosis, I also started connecting with amazing individuals and received overwhelming support from mere acquaintances to complete strangers. Just yesterday, a few of my Twitter buddies (@bradloncar and @SheffStation) made the long trip to rural Pennsylvania just to spend some quality time together. To be fair, it’s completely possible they just came to see our new adorable puppy Humphrey – but, hey, I’ll still take it. (In all seriousness, many thanks to Brad, Sheff, and others that have visited in recent weeks and months!)

I learned to “live in the moment,” appreciate the little things, and slow my life down a bit. Of course, some of this didn’t come by choice, but rather the diminished energy and fatigue of battling cancer.

Before cancer, I was wandering aimlessly with no real goal in life other than a desire for material wealth. Now, I am on a mission – to raise awareness of the human papillomavirus (HPV) and its link to six different cancers with the hope of getting more children vaccinated so they don’t suffer my same fate. I am someone with a deep motivation, a purpose in life, a definite direction, and an overpowering conviction that there will be a reward at the end of it all.

And so, I asked myself: “Am I thankful for getting cancer?” At this point, the fears and future uncertainties prevent me from answering with a resounding “yes.” But, I am warming up to the idea that cancer has changed me for the better, and for that – it is hard not to be thankful.

Help Eradicate Six Cancers Caused by HPV

As a sexually transmitted disease, discussions surrounding human papillomavirus (HPV) can understandably be uncomfortable and/or embarrassing. Interestingly, according to the Centers for Disease Control and Prevention (CDC), HPV is so common that nearly ALL sexually active men and women get the virus at some point in their lives. About 79 million Americans (~25% of the U.S. population) are currently infected with some type of HPV. About 14 million people in the United States become newly infected each year. Accordingly, I thought that a more detailed blog post on the subject was warranted.

HPV is a virus with the ability to infect skin and mucous membranes, or mucosa, that lines various cavities in the body and surrounds internal organs. It can cause normal cells in infected areas to turn abnormal. Most of the time, you cannot see or feel these cell changes. In the majority of cases, the body fights off the HPV infection naturally and infected cells then go back to normal.

There are approximately 179 distinct HPV genotypes, which can be divided into “low risk” and “high risk” groups based on their capacity to drive cancer transformation. Most people with HPV never develop symptoms or health problems; 9 out of 10 HPV infections go away by themselves within two years. Sometimes HPV infections will last longer and can cause certain cancers, warts, and other diseases. There is currently no test to find out a person’s “HPV status.”

The “high risk” HPV subtypes most clearly implicated in cancer are HPV16, 18, 31, 33, 35, 45, 51, 52, and 56, which are capable of causing cancers of the cervix, head and neck, anus, vagina, vulva, and penis. Every year in the United States, HPV causes 30,700 such cancers in men and women.

Most of the time, people get HPV from having vaginal and/or anal sex with an infected partner. In fact, “genital HPV” is the most common sexually transmitted infection (STI) in the U.S.

However, the same types of HPV that infect the genital areas can also infect the mouth and throat. HPV found in the mouth and throat is called “oral HPV.” Only a few studies have looked at how people get oral HPV, and some of these studies 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 simply open-mouthed (“French”) kissing, others have not. The likelihood of getting HPV from kissing or having oral sex with someone who has HPV is not known. According to the CDC, more research is needed to understand exactly how people get and give oral HPV infections.

Oral HPV is about three times more common in men than in women. Overall, HPV types 2, 4, 6, 11, 13 and 32 have been associated with benign oral lesions while HPV types 16 and 18 have been associated with malignant lesions, especially in cancers of the tonsils and elsewhere in the oropharynx. The most commonly implicated subtype in oropharyngeal cancer is HPV16, accounting for over 80% of HPV positive cases. Not surprisingly, my initial biopsy results showed that tumor cells were positive for HPV16.

Patients with oral HPV cancer present at a younger age and are less likely to partake in excess alcohol consumption or heavy tobacco use that are associated with corresponding HPV-negative cancers. Additionally, HPV-related tumors more frequently arise in the oropharynx – the part of the throat at the back of the mouth behind the oral cavity. It includes the back third of the tongue, the soft palate, the side and back walls of the throat, and the tonsils (where my cancer started). Smoking-related tumors arise more commonly in the oral cavity, larynx, or hypopharynx.

Oral HPV tumors are more likely to be smaller and poorly differentiated, with a higher incidence of advanced lymph node metastases in comparison to HPV negative tumors. Despite a more aggressive clinical presentation, HPV status is the best independent predictor of survival in these patients.

Signs and symptoms of oral HPV may include persistent sore throat, earaches, hoarseness, enlarged lymph nodes, pain when swallowing, and unexplained weight loss. In my case, the first sign of disease in November 2015 was an enlarged (3-4cm) lymph node on the right side of my neck where the cancer had spread from my right tonsil. Some people have no signs or symptoms.

While there is currently no cure for the virus, there are commercially available prophylactic vaccines against HPV available today: the bivalent (HPV16 and 18) Cervarix®, the tetravalent (HPV6, 11, 16 and 18) Gardasil®, and newer Gardasil 9 (HPV6, 11, 16, 18, 31, 33, 45, 52, 58). Since the HPV subtype 16 was included in each of these vaccines, and this subtype was found in my tumor cells, it is very likely that my cancer could have been prevented had such vaccines been available to me when I was younger.

The HPV vaccine was initially developed to prevent cervical and other less common genital cancers, which raised questions regarding the ability to also prevent oral cancers. In one of the first large studies to explore the possible impact of HPV vaccination on oral HPV infections, researchers found it may confer a high degree of protection. The study of young adults in the U.S. showed that the prevalence of high-risk HPV infection was 88% lower among those who reported getting at least one vaccine dose than among those who were not vaccinated. Researchers reported the results at the recent American Society of Clinical Oncology (ASCO) 2017 annual meeting.

To be an effective preventive strategy, HPV vaccination should start before “sexual puberty.” The CDC recommends routine HPV vaccination for girls and boys at age 11 or 12 (two doses six months apart, a 2016 revision of guidelines that previously recommended three doses). People who get vaccinated later (up to age 26 for young women and up to age 21 for young men) will need three.

The same research reported at ASCO 2017 found that from 2011 through 2014 fewer than 1 in 5 (18.3%) young adults in the U.S. reported receiving at least one dose of the HPV vaccine before age 26. The vaccination rate was much lower among men than women (6.9% vs. 29.2%) at this time.

“The HPV vaccine has the potential to be one of the most significant cancer prevention tools ever developed, and it’s already reducing the world’s burden of cervical cancers,” said ASCO President-Elect Bruce E. Johnson, MD, FASCO. “The hope is that vaccination will also curb rising rates of HPV-related oral and genital cancers, which are hard to treat. This study confirms that the HPV vaccine can prevent oral HPV infections, but we know it only works if it’s used.”

More research is needed to understand exactly how people get and give oral HPV infections that resulted in my oropharyngeal cancer. Recent studies confirm that the HPV vaccine can prevent such oral HPV infections, but only when they are used – and vaccination rates are extremely low. This is disappointing, as vaccination is widely considered one of the greatest medical achievements of modern civilization. Childhood diseases that were commonplace less than a generation ago are now increasingly rare because of vaccines (although the measles are making a comeback since elimination was first documented in the U.S. in 2000). In order to be effective at eliminating communicable diseases, vaccines must be administered to sufficient levels of persons in the community.

If you have a son or daughter, please talk to your doctor about the HPV vaccine. HPV has become a recognized driver of six cancers affecting more than 30,000 people each year, yet there are available vaccines to prevent the majority (about 28,000) of these cases from ever occurring.

 

Sources:

American Cancer Society. Cancer Facts & Figures 2017. Atlanta: American Cancer Society; 2017.

From HPV-positive towards HPV-driven oropharyngeal squamous cell carcinomas. Cancer Treat Rev. 2015 Oct 31.

Centers for Disease Control and Prevention: Human Papillomavirus (HPV) Statistics

J Clin Oncol 35, 2017 (suppl; abstr 6003)