Thoughts beforehand: I’m coughing and tired? Get DayQuil and some rest. Hacking harder and getting weaker? Get NyQuil and serious rest. Hey, I’m still vertical, so … no biggie.
Thoughts afterward: That vague ache and tickle in the throat? Yeah, it damn well could be … again. O-M-G.
In between: colon cancer.
Was I in denial before and hypochondriacal now?
“It’s denial but it’s also lack of awareness of the symptoms in the first place,” says oncologist Dr. Oscar Goodman Jr. of Comprehensive Cancer Centers of Nevada. “Everyone is so consumed by their daily lives that unless you’re completely incapacitated by the symptoms, you don’t think about it enough — but that’s the wrong approach.”
Wrong — and overwhelmingly popular. Released in December, a survey conducted by University College London researchers asked nearly 1,800 people aged 50 and older if they considered the possibility that symptoms they’ve experienced could signal cancer.
Reasonably, you might guess that two-thirds did. Or maybe half. At the very least, 25 percent.
Try 2 percent. That other 98 percent? People like me.
“Cancer has a special meaning, a fearsome diagnosis,” says Dr. John Ellerton, an oncologist in private practice who is also on the staff of University Medical Center. “There is an association with disability and death, much more strongly with the word ‘cancer’ than with other diseases that are significant — and equally as dangerous. We just don’t think we could have cancer.”
Consider it denial on an epic scale, given that the American Cancer Society estimates that 2015 will see nearly 1.7 million new cancer diagnoses (including 13,640 Nevadans). By the study’s percentages, 340,000 of those will be knowledgeable enough to deal with it early and maximize their chances for survival — and more than 1.6 million won’t.
In the survey appearing in the scientific journal Plos One, published by the Public Library of Science, 17 symptoms — including such cancer red flags as severe coughing, bleeding, extreme fatigue, unexplained weight loss, hoarseness, difficulty swallowing and changes in bowel and bladder activity — were nearly always attributed to other ailments.
Instead, respondents connected them to maladies including arthritis, infections, hemorrhoids, cysts and the downside of advanced age.
“Most people with potential warning symptoms don’t have cancer but some will,” said the study’s lead author, Dr. Katrina Walker, in a statement upon its release. “It’s worrying that even the more obvious warning symptoms, such as unexplained lumps or changes to the appearance of a mole, were rarely attributed to cancer, although they are often well-recognized in surveys that assess the public’s knowledge of the disease.”
Beyond the presence of symptoms, it’s their persistence — bodily abnormalities that won’t go back to normal — that should be the biggest, brightest warning sign.
EARLY SYMPTOMS SHRUGGED OFF
Constant coughing felt like my lungs were the latest Strip implosion. Fatigue became a daily hurdle as routine chores that once took 15 minutes now required an hour or more as I collapsed onto the couch, exhausted, after each one. Eventually, my taste buds abandoned me. Every meal was like eating a doorknob, later linked to tumor-triggered anemia.
Strangest of all? Chewing pebbles: The growing abdominal tumor caused pica, a disorder of eating “nonnutritional” substances in which, because I was iron-deficient, my body craved it without my being conscious of it. Had my brain been in on it, a drugstore run for iron tabs would have been easier on my teeth.
Unfortunately, cancer as the potential culprit never penetrated it. Just investigating the coughing and fatigue would have headed off the other, odder symptoms as my daily functioning now resembled a car with a faltering engine, sputtering to a crawl.
“There are three things — your work, your relationships at home and your social life — and when it affects those is when people look to get help,” says Marianne Tejada, a veteran oncology nurse and lecturer at the UNLV School of Nursing.
“There are so many numbers of cancers that can manifest so it can be really hard to tell, but a symptom that is very common to many cancers is the extreme fatigue. Maybe we think it’s because we don’t work out. The persistent cough, maybe we think it’s bronchitis and it will go away. Or unexplained achy muscle joints, maybe we think it’s just getting old. Fevers and the sweats, we think we have the flu. But we have to be aware of even the mildest changes.”
Complicating the reading of symptoms is that many cancers can mislead with referred pain — felt in a part of the body other than its actual source — as tumors press on nerves, bones and other organs. Few people would likely associate arm pain with lung cancer. Or shoulder pain with liver cancer. Or back pain with testicular cancer.
“It can be cryptic,” Goodman says. “There are uncommon ways for cancer to present, but if, say, you’re seeing something on your arm that is getting gradually worse, an aching, throbbing pain, and there’s no trauma to explain it, that needs to be followed up. Pain can present in a localizing or nonlocalizing way. You can have lung cancer without coughing. In fact, if you are coughing and it is lung cancer, that’s because it’s very advanced.”
Finally, I dragged myself to the practice where my doctor was on staff. Analyzing the individual symptoms, he prescribed medications. Another month passed as I waited for signs of improvement that never came, then dragged myself back on a day my doctor was absent. So I saw another. Unlike my own physician, she ordered a blood test.
Two days later, in an urgent phone call, I learned my hemoglobin level had plummeted to dangerously low levels because of slow-drip internal bleeding — I was seriously ill. Now an oncologist, gastroenterologist and surgeon joined the fray. X-rays and CT scans revealed a “mass” and a colonoscopy uncovered the “decently sized” tumor (or, as the gastroenterologist termed it, “a giant”) that penetrated the colon wall but hadn’t yet breached it to spread to other organs. Immediate surgery was scheduled.
Why didn’t I request a simple blood test — a staple of early diagnoses — that would have rung the alarm bell sooner in my initial visit? Should patients know to ask, especially if there are multiple symptoms that are lingering or worsening? If so, should they challenge their doctors?
“Of course they should, why shouldn’t they?” Ellerton says. “It’s not your fault that you don’t know. Doctors assemble the facts (about simultaneous symptoms) into some coherent package, then say, ‘We should check your blood.’ You never like to have multiple diagnoses, you like to take the patient’s symptoms and look at the whole.”
Though it wasn’t cancer-related, Tejada recalled her teenage brother-in-law, and the consequences of not pushing a doctor for further examination if you feel a nagging uncertainty about their evaluation. Worried about his swollen legs, he visited a hospital and was told he just needed to lose weight.
“I said, ‘Did you insist on blood tests?’ and he said, ‘No, because they said there’s nothing wrong with me,’ ” she says. “I told him to go back and insist. It turned out his kidneys were failing. Then he got a new kidney. So, no, you wouldn’t be out of line asking for a blood test.”
Adds Goodman: “That’s a great thing and I encourage patients to do that. Most doctors won’t feel offended. They’ll appreciate it.”
Three-plus years into remission — and aware that cancer survivors are statistically more susceptible to the disease again than those who haven’t been afflicted — I’ve grown acutely attuned to symptoms. Every unexplained bruise, every skin bump out of nowhere, every ache that greeted me two mornings in a row drove me straight to a Google search. Twice, it drove me back to the doctor.
Had my newfound hypervigilance tipped over into hypochondria? Does everyone’s?
“If you’ve had cancer, there is no real hypochondria,” Goodman says. “You have to report all your symptoms. Most oncologists, we encourage our patients to speak up regardless of how trivial they feel it is. You can feel it’s hypochondria, but how do you know it’s not the real thing? Better to err on the side of caution.”
Overall advice: Be proactive.
“Be your own best advocate,” Goodman says. “See your primary care physician, they are the key to making an early diagnosis of cancer, not the oncologists, we’re the ones that treat it. Be aware of your family medical history. Be up to date with all the guidelines. Do the screenings that are available for the common cancers.”
Many surviving cancer patients endure far worse than I did. Surgery excised the tumor cleanly, metastasis was thwarted, recovery was fairly swift and, though preventive chemotherapy was suggested, it wasn’t urgently recommended.
Steady testing and monitoring suffices. Yet it wouldn’t have reached crisis level had I not been among the 98-percenters.
Now I’m firmly and forever a 2-percenter.