Cancer as a Symbol, Not as a Word

Cancer is a scary word. Also known as the ‘C-Word’ or the ‘Big C’, cancer is not just a word, it’s also a symbol. The Merriam-Webster dictionary defines cancer as “a serious disease caused by cells that are not normal and that can spread to one or many parts of the body” or “something bad or dangerous that causes other bad things to happen”, for example, “the cancer of hidden resentment — Irish Digest” (also from Merriam-Webster). The latter definition of cancer, according to Merriam-Webster, recursively defines the former in a reflective way, giving way to a third definition which is fear. Surely, a serious disease that is also something bad or dangerous, or that causes other bad things to happen, is fearful. But, fear of what? It is fear of the unknown, fear of loss of control, fear of a deadly disease that spreads silently until it is too many times too late to reverse. Its causes are many and its outcome uncertain and too frequently deadly. It is hard to prevent since its primary cause can be lifestyle-related, diet-related, genetics-related, or environment-related. It affects different organs and has multiple manifestations and multiple types. Yet, we call it by a single name, cancer, a catch-all term for a disease process gone rogue. I remember hearing about someone being so sick that “they opened him up and he was filled with cancer, so they closed him right back up.” Cancer has become a word better understood by its significs than by its semantics. In other words, cancer is more significant as a sign of fear than as a word in the strict dictionary sense of its meaning.

My personal encounter with cancer dates back to when my late wife was diagnosed with it, about twenty years ago. It started with a routine surgical biopsy. The results that came back from pathology were wrapped in the dreaded C-Word. Shock, denial, and anger gave way to fear, holding us hostage at the time. Surgery took away two small cancerous lesions, along with a breast. “We got it all”, the surgeon said, as there was no evidence of spread. Thankful that it was caught early, we opted for a follow-on round of prophylactic chemo for three unpleasant months, but it reassured us and afterwards gave us back our normal lives. However, the cancer hung around somewhere in her body - small, silent and hidden. It set up shop and silently grew and spread for four years, undetectable until a nagging shoulder pain led us back to her primary care doctor. It was most likely referred pain from her upper abdomen, the doctor thought, presumably gall bladder-related. But, an ultrasound scan revealed two tumors in the liver instead, an indication that primary cancer had spread. The cancer returned suddenly in our lives, in a way more shocking and more fearful than the first time around. The cancer had never left, it had ‘spread’, which became the next detestable word as a symbol. However, there was also hope during the additional five years of treatments. The treatments mixed the hope of a cure, like experimental high-dose chemo with stem cell transplantation, with stop-gap treatments that tried to stamp out the cancer as it spread like a wildfire. There was radiation therapy for bone lesions, emergency brain surgery to remove a small tumor, and brain radiosurgery. All of the treatments were life-extending, but eventually the slow spread continued and the treatment options became fewer. After the five years of treatment, she had to weigh in the balance the choice of adding two to three months of life while trying out some new chemotherapy regime, versus having a better quality of life for any remaining months of life. She chose the latter and time ran out eventually. Fear left peace in its place for all of us, wrapped in sadness and grief.

A large part of the fear of cancer is its ability to spread to other organs. It seems to me that many people don’t understand the dynamics of cancer and its stages (add ‘Stage IV’ to the list of fear words), nor do they understand that cancer also has an individual character. Cancer of the breast is not the same as cancer of the esophagus. But for most people, cancer is just cancer. One word, one meaning, one fear. When cancer spreads, it retains the character of its primary source. Breast cancer that spreads to the liver is still breast cancer. I have heard it said that a person has liver cancer, when it is really breast cancer that spread to the liver. Cancer is defined by its primary source organ (breast, colon, prostate, etc.). When it spreads it is still breast, colon or prostate cancer, even though it might show up in other organs. Cell biology can prove it by showing differences between cancer types, even when it spreads to other organs.

That is what I thought until recently when I was surprised to read a recent article by G.R. Varadhachary in the New England Journal of Medicine (Aug. 21, 2014) on ‘Cancer of Unknown Primary Site’. In other words, there is a group of related cancers where the anatomical site of origin is a mystery. This type of cancer has an occult primary origin. Cancer has done it again. Although cloaked in mystery, improvement in diagnostic methods is helping to assign some putative primary sites, but researchers have also been investigating it for the past four decades without resolution. Unknown primary cancer is treated as if it were a single entity (it is cancer isn’t it, after all?), and it is treated accordingly with platinum-based combo chemotherapies. Maybe the patient who was filled with cancer wasn’t a story after all. If fear of the unknown is a rational feeling, then this group of cancers gives us even more to fear about the ‘C-Word”. Imagine if you told someone that you were diagnosed with cancer. They say that they are sorry to hear about the diagnosis. Acting interested and maybe helpful, they ask what kind. You say ‘Unknown’. Where does one go from there?

In thinking about the semantics of cancer, there is another fearful word related to ‘Stage IV’, and that is ‘terminal’. An article by S. Perkins in the August issue of Medical Decision Making addresses the understandings and misunderstandings of the term, terminal cancer. Dr. Perkins references an article by Lee in 2013 which says, “Their survey suggests how variably Koreans understand the term ’terminal cancer’: Of all their respondents, 46% understood it to mean primarily that the patient has at most 6 months to live; 21%, that the cancer is refractory to treatment; 19%, that it has recurred or metastasized; and 2.5%, that it is merely advancing locally”. No meaningful deviations from these overall percentages occurred among the respondent subgroups of cancer patients, family caregivers, oncologists, or the general public”. His point is that understandings vary and cause confusion. Yes, and confusion leads to fear.

So, good things are happening: cancer awareness has increased, screening programs are growing, people are modifying their lifestyles, and treatment options continue to expand. Early intervention is driving down mortality rates for some cancers, but there is no cure for fear - fear of the unknown.