Patient #1: 'Is my cancer back or am I just getting sick?'

When you are a stage IV cancer patient, and you are on clinical trial #2 AND you start developing flu-like symptoms, inevitably the conversation turns from “How are you feeling?” to “Do you think we need to call the oncologist?”

Getting ill –benign, “I feel awful” flu-like ill – is a normal occurrence for most families. Drink plenty of fluids, get some rest, watch a little daytime TV and you’re back to normal in a day or two.  But for cancer survivors, any blip in health may be the trigger for a larger concern. A basic symptom can make even the most confident of patients worry that it masks a deeper health problem, or, at worst, a return of cancer.

This time, though, my ailment was self-induced.  In a ten day stretch at the beginning of March, I attended three research/patient conferences, flying from Fort Lauderdale to Philadelphia just in time to watch the mercury plummet about 50 degrees in 36 hours.  Squeeze in a family visit between conferences and it was an overloaded schedule before I even got on the first plane.

Sleeping in six different places over those ten days – and waking up at 5 a.m. to catch a flight home in time for an afternoon infusion – I set myself up for a weakened immune system.  I know better. 

Yet when I could barely get out of bed on Saturday morning, my wife Jen took one look at me —flashing back to 2012 — and said, “The last time I saw you like this you were…”  She didn't need to finish that sentence.

Fortunately, this isn't cancer.  It’s a middle-age man thinking he can burn the candle at both ends, forgetting his body can no longer rebound so effortlessly.  Pair a lack of nutrition and sleep with an overactive schedule, add in a couple of plane rides and climate changes, and top it off with a dose of pembrolizumab, and it’s no surprise I was drained days later.

Ironically, the best perspective came when my friend Dave, a recent Stage III melanoma survivor, asked me to review a draft of his new book that same weekend. “The Hypochondriac’s Guide to Beating Cancer” was a very appropriate read. I was stuck by how easily it was for me to logically dismiss so many of his worries – and, believe me, there were no shortage of them.  Then I thought about the last 48 hours - the concerned look of pained recognition on Jen’s face; the mysterious, unknown effects of messing with my body at the molecular level every 21 days.  I thought about the numerous times I’ve felt a pain and dismissed it as “nothing to worry about”, when in the back of my mind, there was the “What if…?” voice.  Suddenly, the hypochondriac sounded like the sane one, and the guy trying to set the anti-PD-1 infusion record seemed somewhat reckless.

There will always be that small fear, lurking, that a fever or illness is the first sign of a recurrence.  I don't, and won't, live my life in fear of my cancer coming back, but I would be lying if I said that possibility never crossed my mind. But when these moments happen, I do my best to “positive” them away, but I also know that melanoma has as good a chance as anything to be listed in my “cause of death” box one day. 

Which makes every ailment a greater cause for concern – is that a stomach bug or the early signs of another mesentery tumor?  Are those headaches simply a lack of sleep or do I need to worry about a brain metastasis?  Do I feel under the weather because my cancer has returned or just because I’m getting old?

Learning to be a good patient – by getting myself checked out for even the slightest health abnormality – was among the many challenges I faced as a clinical trial participant.  Being able to balance the need for vigilance with the desire to remain sensible about these abnormalities remains a constant challenge.  Almost all of the time, it’s nothing. But for cancer patients, at least one time in the past, it WAS something, and that something can return quickly.  Finding the balance between diligence and over-anxiousness is the new challenge we navigate with every minor sniffle.  After all, an ounce of prevention – or in this case, early detection – is certainly worth a pound of cure.

T.J. Sharpe shares his fight as Patient #1 against Stage 4 Melanoma in the Diagnosis: Cancer blog. Read more »