In contrast to severe symptoms, minor discomforts don't cry out for relief and are easier to hide or ignore. That puts long-term survivors in complete control over when to involve anyone. A mental tug-of-war often plays out between the desire to avoid sounding the alarm for something that just needs more time to resolve and the desire to have the symptom checked out, in case it signals something more serious.
Theoretically, the patient's job is simple—i.e., report the symptom—and the burden falls on clinicians to decide about the need for evaluation. Theoretically, reporting symptoms should be easier as long-term survivors, since they know their body inside and out. In reality, deciding what to do can be complicated and stressful, as I was reminded recently when a flare-up of localized discomfort persisted unusually long. I knew my reporting it would likely trigger an evaluation, as well it should, given my cancer history and risk of late effects. Consequently, the onus was on me to determine whether my discomfort was significant.
Many long-term survivors wonder if their mind is playing tricks, having in the past experienced, say, dyspnea after learning they had a small lung nodule or resolution of a backache immediately after learning their scans were normal. That's why, with no sense of urgency and not wanting to worry my husband, I devised a little test: Ignore it for a week and see what happened. No problem there. I'd learned to dissociate from the chronic aches and periodic symptom flares due to body parts that would never again work quite right, the legacy of past tumors and treatments. Like other long-term survivors whose happiness depended on healthy denial, I got good at it.
After going about my business for a week, the discomfort was the same. Just because I could ignore it indefinitely didn't mean I should. Minor symptoms due to benign issues may be indistinguishable from those due to early recurrence or serious late effects. My little drop of anxiety became a steady trickle, because I knew long-term survivors who ignore minor symptoms risk missing an opportunity to improve the outcome. The specter of late recurrences or new late effects was more than academic. I enjoyed rich friendships with co-survivors, a handful of whom had developed recurrence, second (or more) cancers, or serious late effects decades after their last treatment. The memory of one friend in particular pushed my button: “Okay, time to act.”
That decision triggered memories of false alarms, which immediately cast self-doubt. I didn't want to waste my physician's time with nothing. Picturing an exam room unleashed my primal desire to delay opening the door to pokes and prods and the possibility of unwanted news.
While weighing the option of waiting another week, I asked myself, “What should I do to get good care and help my physicians deliver that care?” A new mantra was born: If I'm unsure whether I need a symptom checked, I need it checked. Dialing my doctors' office, I repeated in my mind what they'd made clear at every visit:
* You help us when you report symptoms, no matter how minor.
* Evaluations end needless worry and enable you to benefit from treatment, if needed.
* A price of survival is the hassle of undergoing evaluations sooner than if you'd never had cancer.
* More than you want to avoid a false alarm, you want to avoid missing the chance to improve the outcome.
Plenty of other long-term survivors also want to get good care and make it easy for their physicians. Sadly, they're using a different calculus because their circumstances are different. Maybe they're risking their job if they take time to see you, or they're choosing between paying their rent or their office visit co-pay. For them, false alarms and treatment of early disease feel like unaffordable luxuries. Maybe they've picked up signals (mistakenly or not) from overworked physicians to not report minor symptoms. Maybe they tried discussing their symptom with a PCP untrained in survivorship who responded, “After what you've been through...it happens.” Whatever the reason, the question that guides their actions isn't about good care; it runs more along the lines of “How long can I let this symptom go on without risking my life?”
For still other long-term survivors, the struggle has nothing to do with money or physician encounters. Rather, their anxiety drives them online, where they occupy themselves with reassuring, if misguided, postings until their anxiety passes. Alternatively, the weariness of ongoing medical issues makes them under-anxious about minor symptoms.
Whatever the circumstances, an undercurrent of fear can make it difficult for long-term survivors to pursue what they know to be the best course of action. That urge to increase the ibuprofen instead of calling a doctor about a new pain is no different than the urge to turn up the car radio instead of calling a car dealership about a new tapping noise under the hood. It's human nature for long-term survivors to want to avoid the medical scene, especially if a symptom isn't bothering them much.
Minor symptoms in long-term survivors are no small matter. They require the same expertise, compassion, and dedication as you bring to the problem of cancer. By talking with your staff about the challenges, you can brainstorm potential solutions that fit with your particular practice. Your efforts will serve your mission to cure as often as possible and to comfort always.Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
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