I have a cautionary tale to tell. I’m writing this from the hospital because of the tumor hemorrhaging blood down my throat. My husband and I have told doctors not to intubate me, so I’ve been told there is this freaky chance I could go at any time. This is my story.
Not-for-profit organizations such as the American Cancer Society spend a lot of money to get out messages about health care through pamphlets and news releases that work their way to the public. Then it ends up stacked on a rack in a wellness center, never to be seen again.
Growing up during the AIDS crisis and being HIV-positive myself, I was responsible for reading them.
So how could I be misdiagnosed by four doctors – two of them gay – for stage lV HPV-related oral cancer, a type of cancer affecting more people each year?
The answer is a mixed bag of no FDA-approved screening tools, limited research, and physician ignorance.
I’m no Michael Douglas. But I’m sharing my experience in the hopes I can help prevent others from receiving a diagnosis of an advanced HPV-related oral cancer being caught at a late stage when the prospects for survival have diminished to 60%.
For god knows…I asked all the right questions of my doctors throughout 2013 before receiving a correct diagnosis, and I still fight for my life.
HPV strain 16 causes most cases of oral and oropharyngeal cancers in America. (It also can cause anal cancer.) The virus is picked up during oral sex – mouth to penis, vagina or ass. Someone can pick it up in their 20s and have it go unnoticed for forty years until it’s caused lesions in the mouth. Oncologists also are treating more people in their 30s. Those who survive are left debilitated with a reconstructed tongue and pharynx, a permanent tracheotomy, and no longer able to speak or swallow. Yet, if caught in an early stage, it is a highly treatable cancer.
Doctors believe being co-infected with HIV complicates the ultimate prognosis for the patient – though researchers have yet to do the studies to back that theory up.
The onset of symptoms
Let’s go back to the beginning of my ordeal. In the winter of 2013, I noticed that when I coughed, I felt discomfort in a specific spot of my throat. It didn’t go away after three weeks, only becoming more persistent. I also started having mild earaches in my right ear. But I didn’t think much of it.
But, I did bring up the symptoms to my HIV specialist in March.
“Could this be cancer?” I asked. “I know being HIV positive, I’m at a higher risk for certain types of cancer.”
“I doubt it,” he replied. “You’re young and healthy.”
Then he gave me an STD check-up, which came back negative.
By May, the earaches on the right side of my head began to mess with my sleep. I used a heating pad and popped Ibuprofen to get me through each night. My throat felt like it had a tortilla chip caught in it.
I went to my gay dentist (these are doctors in Los Angeles, mind you) for a regular cleaning. Again, I told him about my symptoms existing only on the right side of my head and how they’d been getting worse.
Then I asked, “I have risk factors. Could it be cancer?”
“Nah! It’s TMJ. Temporomandibular Joint Disorder. You’re grinding your teeth at night. Let me fit you for an (nearly $1000 dollar) mouth guard.” He reassured me: “I have it too.”
I knew what TMJ was, and I knew I didn’t have TMJ. Still, I got the mouth guard and used it a couple of nights, but still no relief from the excruciating pain.
By July, I went to an ears, nose, and throat specialist I found in ZocDoc. In his office, I gave him the same rundown of symptoms, pointing out my HIV status and higher risk for cancer.
“Acid reflux,” he declared.
I’ve had acid reflux, and my problem was not acid reflux. I left his office disheartened.
In September, I was hardly able to sleep. When I could, I’d snore fierce enough for my husband to start kicking me to stop. And he was the one with the sleep apnea machine on this nightstand. Swallowing food got more challenging; the right side of my tongue felt like it was thickening, and my voice had started to change.
I tried another ENT in Beverly Hills I found on ZocDoc. On my first appointment, he said what a blessing ZocDoc had been to his practice, but I noticed how frazzled he seemed running from patient to patient.
Again, I listed the growing litany of symptoms, how long they’d been going for, and my risk factors.
I was sent home with an antibiotic prescription for a saliva gland infection and told to suck hard lemon candies to help dislodge any salivary cyst that might be present. I did as I was told, yet things kept getting worse.
Later that month, I returned to the same ENT, now presenting high fevers and other ailments.
He looked back over his notes. “So this all started in July.”
“No, in January.” Nine months earlier.
“Oh, I’d thought you said July.”
Damn, ZocDoc has a speedy workflow. (Not.)
“I’d like to set you up for a CT scan.”
The diagnosis and treatment
The October CT scan showed a mass at the base of the right side of my tongue. Then he did a biopsy where he found advanced cancer that had spread to my lymph nodes on the right side of my neck.
It was in December of ’13 that I began treatment with a combination of chemotherapy and radiation.
I was filled with rage. Not that I had cancer. That was no surprise. But how could it be that I understood that I was a high-risk person for HPV-related oral cancer when my doctors didn’t? Actor Michael Douglas was also misdiagnosed three times before his docs discovered his stage lV HPV oral cancer.
The answer is complex as to why HPV oral cancer gets diagnosed so frequently at an advanced stage.
Physicians and dentists need a screening tool. Currently, there is no FDA-approved test to diagnose HPV in the mouth or throat.
But doctors may also be unfamiliar with the symptoms of HPV-related oral cancer. Or they may be complacent. One of my doctors told me not enough is being done to educate medical and dental students about the rise of this cancer.
Another doctor told me, “If this can happen to you or Michael Douglas in major metropolitan communities, I shudder to think what’s happening in some place like Bakersfield.”
One UCLA researcher at a West Hollywood seminar on HPV cancers noted there’s very little data available on the prognosis for HIV-positive people with an HPV-16 co-infection. So doctors are in the dark when treating people with HIV.
HPV-related oral cancer symptoms include a persistent sore throat, earaches, hoarseness, enlarged lymph nodes, pain when swallowing, and unexplained weight loss. Oral HPV is three times more common in men than in women, according to the CDC.
These days, I continue to fight for my life. I have persistent cancer, meaning neither chemotherapy, radiation, or surgery would bring it into remission. I’m in my second clinical trial— the Hail Mary passes for cancer — without hope if the trial fails. If it does, I will proceed with California’s new End of Life Option Act rather than let the cancer rot me away.
In 2013, I was six foot and a healthy 210 pounds. I had directed two successful documentaries and spent two decades as one of our community’s most active video journalists.
Now, I’m a tad over 150 pounds. I’ve retired from camera work and documentary filmmaking, too weak to carry a video camera. When I speak, it sounds like I suffered a stroke, so I can’t conduct interviews (or carry on a conversation in a noisy space). I no longer eat because of swallowing difficulties. All my liquid food is taken through a tube in my stomach – I no longer go out to eat with friends.
I want to live. This is all tearing up my husband as he watches me slipping away. I pray the experimental drug Opdivo starts shrinking my tumor. Yet, I also have to plan for the reality of it not working and how I wish to spend my remaining days. I prefer to die on my own terms, not drugged out on morphine, unrecognizable to my loved ones, waiting to drown in fluid build-up caused by pneumonia.
I’d rather not share all the gory details of how devastating this is. I hope my experience can help others. If you have any symptoms described above, please see your doctor or dentist if they last more than three weeks. Pamphlets and news reports are helpful, but you must advocate for your health with the medical community. That’s what I’ve learned the hard way.
Edit: Sadly, Mike Skiff passed away on November 22, 2016 only a few months after authoring this article. We’ve left the article as he wrote it in his memory and edited only for context. Rest in peace, Mike!
Mike Skiff was a documentary filmmaker and video journalist. His feature documentary, Kink Crusaders, premiered at the International Mr. Leather competition while Folsom Forever examined the history behind San Francisco’s Folsom Street Fair. He was in wonderful seventeen-year relationship with LA news anchor Tony McEwing.
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Gay Twitter™ in shambles over misleading academic article linking oral sex to “throat cancer epidemic”
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