Dreadlock

This has been quite an emotional rollercoaster.

When Doctor W told me over the phone that my CT scan indicated a suspected malignancy, my first thought was of course, "I'm going to die." My next thought was, "How does one live without a tongue?" Followed immediately by fear of leaving my two young daughters and Wonderful Wife.

That initial fear was bewildering and, at first, overwhelming.

Then we had the possibility of infection mentioned by Doctor B after his exam. Followed by the disappointment when antibiotics had no effect.

During this time I was intentionally avoiding looking up information on tongue cancer. Most cancer types have multiple sub-types that can have widely varying prognoses; I didn't need to go read about the scary ones, or get my hopes up that I had a more curable one only to get worse news later.

One day I was curious what kind of instrument is used for the tongue biopsy. I was curious because Doctor B had told me that I wouldn't require any sutures and would only be sore for a few days. I couldn't envision how one could collect enough tissue, especially from the interior of the growth, with that little injury.

While I was looking that up I accidentally clicked through to this NIH page on oral cancer, where I read this in the Prognosis section:

Approximately half of people with oral cancer will live more than 5 years after they are diagnosed and treated. If the cancer is found early, before it has spread to other tissues, the cure rate is nearly 90%. However, more than half of oral cancers have already spread when the cancer is detected. Most have spread to the throat or neck.

About 1 in 4 persons with oral cancer die because of delayed diagnosis and treatment.

Yikes. 5-year survival is the measurement of the "curability" of a cancer type and 50% 5-year survival is not so good. And I've got Lumpy the Lymph Node threatening to be an indication of spread. I did not need to read that.

Doctor B had made two remarks to me, one after the initial consult and another after the biopsy, that he expected this to turn out to be squamous cell carcinoma. I allowed myself to go read about that specific type. I was interested to read the risk factors:

• Smoking or heavy alcohol use
• Chronic irritation (such as from rough teeth, dentures, or fillings)
• Human papilloma virus (HPV) infection
• Taking medications that weaken the immune system (immunosuppressants)
• Poor dental and oral hygiene

By process of elimination I have only one of those risk factors: possible HPV infection. I told Friend Britt that fact in one of our emails.

The next day Friend Britt told me she had found an interesting article and asked if she should forward it to me. The article is from UpToDate, "the clinical decision support resource" available to health care professionals, and discusses HPV-associated head and neck cancer. Here are some highlights:

...many patients with oropharyngeal squamous cell carcinomas, particularly those arising in the base of the tongue and in the tonsillar region, do not have any of these risk factors. Epidemiologic and molecular studies have identified the HPV-16 genotype of human papillomavirus (HPV) as a causative agent in these patients...

...Multiple clinical studies have demonstrated that the prognosis for patients with HPV associated oropharyngeal cancer is significantly better than that with HPV negative cancer of a comparable stage...

...Overall survival was significantly better in patients with HPV positive tumors compared with those that were HPV negative (three-year survival rate 82 versus 57 percent)...

In [one randomized trial], patients were treated with radiation therapy plus concurrent cisplatin, with or without the radiosensitizer tirapazamine [16]. HPV status was assessed in 172 of the 465 patients with oropharyngeal cancer. Using p16 positivity as a surrogate for HPV positivity, two-year overall survival was significantly improved (91 versus 74 percent, HR 0.36), as was the failure-free survival (87 versus 72 percent, HR 0.39). Patients with p16 positive tumors had lower T stage (T1-T2) and more extensive nodal disease (N2-N3) compared with those with p16 negative tumors (37 versus 15 percent and 86 versus 65 percent).

There's a fair bit of jargon in there. Let's start by letting the National Cancer Institute (NCI) summarize the relationship between HPV and cancer:

• Virtually all cervical cancers are caused by HPV infections, with just two HPV types, 16 and 18, responsible for about 70 percent of all cases. HPV also causes anal cancer, with about 85 percent of all cases caused by HPV-16. HPV types 16 and 18 have also been found to cause close to half of vaginal, vulvar, and penile cancers.
• Most recently, HPV infections have been found to cause cancer of the oropharynx, which is the middle part of the throat including the soft palate, the base of the tongue, and the tonsils. In the United States, more than half of the cancers diagnosed in the oropharynx are linked to HPV-16.
• The incidence of HPV-associated oropharyngeal cancer has increased during the past 20 years, especially among men. It has been estimated that, by 2020, HPV will cause more oropharyngeal cancers than cervical cancers in the United States.

So the UpToDate article focuses on HPV-16 because that is one of the high-risk strains, and specifically the one most associated with oral cancers in men. And assuming mine is HPV+, the UpToDate article says that the prognosis is much better than the HPV- type, even if discovered in an advanced stage. That's good news.

We wandered a little far there but this relates back to the emotional path Wonderful Wife and I have been travelling. This information provided a little boost.

Who would have ever thought I would hope to have a sexually transmitted disease‽

But then it was back to waiting. I can surmise all I want that it is squamous cell carcinoma and that if so it is likely to be HPV+, but it's really only guessing until we get our hands on those all-important pathology results.