Cancer survivors worry about recurrence, but seldom think about their risk for new primaries.
Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.
In 2018, more than 1.7 million new cases of cancer will be diagnosed, according to the American Cancer Society. Of those, the National Cancer Institute says that 20 percent will be new primaries diagnosed in people who have already survived at least one previous bout with cancer. This year, I am apparently one of those 347,000 people.
I had a number of goals after my diagnosis with inflammatory breast cancer (IBC) in 2009. One was to get rid of the cancer I had; another was to prevent a recurrence. I changed my diet and improved my nutrition. I got rid of my plastic storage containers and bought glass. I lost weight. I began a modest, but regular, exercise program. And I devoted a lot of time and attention in the years that followed to understanding breast cancer – and to a certain extent, all cancer – better. If the IBC came back, I was going to be loaded for bear and ready to rumble!
With all of this preparation to fight a recurrence, I was not prepared when, a few years ago, a tiny spot on my nose was diagnosed as an actinic keratosis – a pre-cancerous skin lesion. It had never seriously occurred to me that the IBC might not come back, but maybe something else would appear.
Oh, sure, I've known from the beginning that some of the chemo I had could cause a new primary, but the chances of that were remote (or so the literature reassured me). I was told that the heavy radiation therapy I had was likely to "fry" my thyroid gland, but I figured that a few decades of taking artificial thyroid hormone was an acceptable trade-off for life.
Despite this understanding, the diagnosis of a new type of cancer hit me hard, even if it was just a pre-cancer. If I had done all these things to improve my lifestyle and my body hadn't been able to throw off just a little pre-cancer, what was the point? I was pretty discouraged. (Of course, the corollary to that is, perhaps the reason it was only a little pre-cancer was precisely because my body did such a good job of trying to throw off something worse. But that thought didn't occur to me until later.)
Then, a couple of months ago, I glanced at myself in the bathroom mirror one morning and thought my throat looked a little puffy, something more than the emerging "turkey wattle" to which older women are so prone. I found a small, somewhat mobile nodule sitting where my Adam's apple would be (if I were male). Multiple inquiries of doctors and others whose professions make them familiar with human anatomy assured me that this little nodule was nothing.
I'd feel it, from time to time, to see if it was still there, but I tended to leave it alone. When I palpated it, my throat would start hurting in the area near the nodule, and it could take a day or two to settle down. I told myself that the bouts with a stiff neck, the occasional earaches, the nodule, the cough, and the aching throat were nothing but signs of my preternaturally aging, chemo-assaulted body.
But one day, I had to admit that the nodule felt like it was getting bigger. I'd thought I had a recurrence – but hadn’t – so many times in the years immediately after my IBC diagnosis that in the last few years, I'd become a bit reluctant to check out odd symptoms. I'd wait longer before reporting anything, assuming that it would be nothing, like usual, and I'd feel foolish for making an issue of it. Or assuming that it would just go away, which it often did. Eventually.
The nodule, however, had been something that all of my reading about breast cancer recurrence hadn't prepared me to evaluate as a cancer threat. So, I'd asked about it and had some medical types look at it. They'd said it was fine. End of story. Right? Except that this nodule was not only not going away, it was getting bigger.
Finally, one day when I wasn't feeling very well anyway, I'd had enough. I called my oncology nurse navigator and unloaded.
"Nobody's paying attention!" I wailed. "I have this nodule on my neck. They say it's a normal structure, but I think it's growing. And nobody is paying attention to it!"
Within a week I was seeing an ENT oncology surgeon, someone who knows the normal structures of the neck and throat very well. By this time, I was beginning to feel a bit foolish for making a scene about a symptom again. He put his hands on my neck and gently felt around my larynx.
"I see what you mean," he said. Then he got out his ultrasound. As he pressed the wand into the little knot on my throat, I rasped, "It's a normal structure, right?"
"No," he said. "It's not."
And that was it. He took biopsies from the nodule and from the nearby thyroid gland, which ultrasound showed is also full of nodules – a situation not uncommon in women my age. We both knew what the biopsies of the throat nodule would show: cancer.
As it turns out, that nodule is full of metastatic cancer, but they aren't sure from where. The samples taken from the thyroid itself indicate that there's only at best a 15 percent chance that it is cancerous. They're digging my old IBC slides out of the freezer to compare with the current throat nodule slides. But the tentative diagnosis, despite the thyroid cytology results, is locally metastatic thyroid cancer. The tentative type: follicular or follicular with papillary features.
I find that I've entered once again into that old, familiar state of the newly diagnosed: a little numb; a little dissociated. A whole lot "inside myself." I have cancer. Again. Maybe it's "just" thyroid cancer. But it's cancer.
It's funny. You'd think having been through this once, the second time around would be easier. I guess in some ways it is. But you'd be surprised at how much it's not.