There’s this funny discrepancy between literature and reality that is probably most noticeable in patients with head and neck cancer. If we see them more than 6 months after completing treatment (regardless of their combination of radiation therapy, chemotherapy, and surgery), they still have significant side effects.
Dry mouth is uncomfortable at night and makes it almost impossible to eat certain foods like French bread and steak. Your swallowing muscles are weak, especially if you have had major surgery or have spent time tube feeding, and you need to be very careful when eating; This makes it difficult to participate in many social activities. Depending on the location of the tumor, both the articulation and the tone of voice are often conspicuous.
Yet the quality of life data, which we have all rightly obsessed with for the past several years, show patients are only slightly below those of a comparable healthy cohort, not nearly as low as their clinical descriptions suggest. Their quality of life overall and with regard to key issues such as food are numerically only slightly below their pretreatment values.
For a beginning oncology student, this discrepancy can be quite daunting. We are told that doctor-reported quality of life measures massively underestimated issues, yet here we have clear evidence that patient data does too. How can we ever hope to understand the real situation?
I was fortunate to have an excellent guide when I first came across this secret. Experience since then has shown that it is completely correct. As is often the case with well-founded knowledge, the concept recently made the leap to a completely different topic and I understood that the wise advice of my friend Bob Amdur would help me in many areas of my life. “Kate,” he said, “all conditions are relative.”
I’ll get back to our cancer patients in a moment, but let me say a little on this other topic by way of illustration. I’ve longed for a project car since I was little, but had to be content with watching from a distance as the neighbor across the street replaces a CV joint or the young man downstairs polishes his Trans Am. A little girl at that time and place didn’t go in for automobiles.
But after working decades to build enough discretionary funds to be a little selfish, I recently bought a 1965 Ford Galaxie 500. I’m so in love with this car that it makes me feel like a generous margarita. I am also learning the joys of actually working to restore them. It was well cared for before it was mine, but 56 years of just being around is tough on paint, plastic, and metal, especially the versions we were able to make so long ago (here I resist the temptation to admit To talk to oneself about why advances in metallurgy in the last century may have been even more impressive and culture-changing than those in computer science).
Image courtesy Kate Hitchcock
No matter how hard I polish and condition and rust removal, however, the Sallie Ride will never be a new car. Polished to a high gloss, the chrome still bears the visible roots of the old oxidation. The underlying black core shows through its cheerful red steering wheel in the places where hands have slid around the circumference a thousand times. It’s easy to get discouraged, but the classic car people have decided to feel exactly the opposite: a car without traces of its past is considered boring and lifeless.
The most revered and sought-after classics are known as “survivors”, cars with almost exclusively original parts that are imperfect but still do the job they always did. Classic car people can talk for hours about how to slow down the decay and maximize the enjoyment of the machine as it is. You don’t waste time making the car look like it just came out of the dealership. To do so would mean disregarding reality and accumulating frustration without paying off.
The same can be said of excellent oncologists in my opinion. Our patients understandably mourn what they were before they got cancer. We save their lives, but without good guidance, many of them will waste the years we wrested from the jaws of death longing for what they can never be again.
While we are not psychologists, good oncologists can greatly hamper this process before it gets going and instead focus our patients’ minds on celebrating who they are now. I think efforts are best started before treatment by explaining at the first consultation that the rust will always be there, but the car will still go where it wants. Just like motorists, they have to choose to celebrate the new normal. The title “Survivor” is also the highest compliment we humans can give.
I don’t mean to sound indifferent. Not being able to eat without concentrating, having a profound change in the sound of your voice – these are perfectly reasonable motivations for annoying fate. But being sad about them won’t make them go away. After an appropriate, healthy period of mourning, it’s so important to get back to everyday life. And one of the crucial arts in oncology is helping patients do just that.
I think this is reflected in the patient-reported quality of life literature. We have a lot of really great oncologists, oncology nurses, therapists, and social workers out there. And so, 6 months after the end of the treatment, their patients learn to accept the machine they have now and report that they have joy in life again. It’s not that they don’t have symptoms, it’s that they learned to be whole again, including them.
Especially where we have a deep connection with a patient, it is so easy to let them drag you down into the swamp of anger in the world instead of dragging you back onto the bench of optimism with us. Perhaps you are considering getting a vintage car so that you will always be reminded to drive around happily with / despite defects instead of standing in your hot, dirty garage and crying about it.
What lessons have you learned outside of medicine that can help your patients survive?
Please join the discussion below, but if you’d like to communicate with me offline you can reach me at [email protected]
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About Dr. Kate Hitchcock
Kate Hitchcock, MD, PhD, is a radiation oncologist, biomedical scientist, and retired aircraft carrier who grew up a cowgirl in Wyoming. When she’s not in the hospital, find her with Carolyn, Mary, Tyler, Nick, Marlee and Colby the barking dog and enjoy the natural splendor of the great state of Florida. She thinks you should stop by and try to solve the mystery of why the natives pushed all the tourists to the House of the Mouse so carefully. Connect with her on Twitter: @hitchcock_kate