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 there is this freaky chance I could go at any time, I’ve been told. 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 which 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, it was my responsibility to read them.
So how is it I could be misdiagnosed by four different 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 a 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 receiving a diagnosis of an advance 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 diagnosed 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 reconstructed tongue and pharynx, a permanent tracheotomy; 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.
Let’s go back to the beginning of my ordeal. In the winter of 2013, I noticed that when I coughed I felt discomfort on 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 it 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 my right side of my head began to mess with my sleep. I used a heating pad and popping Ibuprofin to get me through each night. The sensation in my throat was a bit like having 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, used it a couple of nights, but still no relief to 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 at 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 harder, 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.
“Can this be cancer?”
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 went back to the same ENT, now presenting high fevers my 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 speedy workflow.
“I’d like to set you up for a CT scan.”
The CT scan in October did show 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 simply didn’t? Actor Michael Douglas also had been misdiagnosed three time 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 are without 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 to 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.”
And one UCLA researcher noted at a West Hollywood seminar on HPV cancers noted there is very little data available on the prognosis for HIV-positive people with a HPV-16 co-infection. So doctors are in the dark when treating people with HIV.
Symptoms of HPV-related oral cancer are – 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 it fails, too. If I do, 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 had spent two decades being one of the most active video journalists in our community.
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 a 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 would prefer to die on my own terms, not drugged out on morphine, unrecognizable to my loved ones, waiting to drown on 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 of the symptoms described above, please see your doctor or dentist if they last more than three weeks.
The pamphlets and news reports are helpful, but you must advocate for your own health with the medical community. That’s what I’ve learned the hard way.
Mike Skiff (photo, top left) is a documentary filmmaker and video journalist. His feature documentary, Kink Crusaders, looked at the International Mr. Leather competition while Folsom Forever examined the history behind San Francisco’s Folsom Street Fair. He reports that he is in wonderful seventeen-year relationship with LA news anchor Tony McEwing (photo, top right).