There's this funny mismatch between the literature and reality that is probably most noticeable in head and neck cancer patients. When we see them 6-plus months following the completion of treatment (whatever their combination of radiotherapy, chemotherapy, and surgery), they still have significant side effects.
Dry mouth is uncomfortable at night and makes it nearly impossible to eat certain foods, like French bread and steak. Their swallowing muscles are weak, particularly if they had a big surgery or spent time with a g-tube, and they have to be very deliberate when they eat; that makes it hard to participate in many social activities. Depending on tumor site, both their articulation and tone of voice are often noticeably abnormal.
And yet the quality-of-life data, which we have all appropriately obsessed over in recent years, shows that patients have scores just a little below those of a comparable healthy cohort, not nearly so low as their descriptions in the clinic would suggest. Their quality of life overall and with respect to key issues like eating are numerically just a little below their pretreatment values.
To a beginning student of oncology, this mismatch can be quite disheartening. We're told that physician-reported quality-of-life measures grossly underreport problems, and yet here we have a clear demonstration that patient data do, too. How can we ever hope to understand the real situation?
I was lucky to have excellent guidance when I first encountered this mystery. Experience since that time has shown it to be entirely correct. As is so often the case with profound knowledge, the concept recently made the leap in my mind to a completely different topic, and I understood that the wise advice of my friend Bob Amdur was going to help me in many parts of my life. "Kate," he said, "all conditions are relative."
I'll circle back to our cancer patients in a moment, but by way of illustration let me tell you about that other topic. I have been pining for a project car since I was tiny but had to be content with watching from afar as the neighbor across the street replaced a CV joint, or the young man down the block buffed his Trans Am. A little girl at that time and in that place did not go inserting herself into matters automotive.
But after decades of working my tail off to build up enough discretionary funding to be a little selfish, I recently bought a 1965 Ford Galaxie 500. I am so in love with this car that just listening to the huge engine purr works on me like a generous margarita. I am also learning the pleasures of actually working to restore her. She was well maintained before she was mine, but 56 years of just existing is hard on paint, plastic, and metal, especially the versions that we were capable of making that long ago (here I resist the temptation to soliloquize on why advances in metallurgy in the last century may have been even more impressive and culture-changing than those in computing).
Image courtesy of Kate Hitchcock
No matter how hard I buff and condition and de-rust, though, Sallie Ride will never be a new car. Polished to a high glow, her chrome still bears the visible roots of old oxidation. The underlying black core shows through her cheerful red steering wheel in the places where hands have slid around its circumference thousands of times. It would be easy to become disheartened by this, but classic car people have chosen to feel exactly the opposite: A car without marks of its past is considered dull and lifeless.
The most revered, sought-after classics are called "survivors," cars with almost entirely original parts, imperfect but continuing to do the jobs they have always done. People skilled in the art of classic cars can talk for hours about how to slow decay and maximize the enjoyment of the machine as-is. They don't waste time trying to make the car look like it just came off the dealership floor. To do so would be to flout reality and heap up frustration with no payoff.
In my opinion, the same can be said of excellent oncologists. Our patients are, understandably, mourning the loss of who they were before the cancer. We save their lives, but without good guidance many of them will waste the years that we snatched from the jaws of death, pining for what they can never again be.
Although we are not psychologists, good oncologists can greatly hamper that process before it gains momentum, instead turning our patients' minds to celebration of what they are now. I think that effort is best started before treatment, by explaining at the first consultation that the rust will always be there, but the car will still drive wherever they want it to. Just like the car people, they have to choose to celebrate the new normal. The title of "survivor" is the highest compliment we can pay to people, too.
I don't mean to sound glib about this. Not being able to eat without concentration, having a profound change in the sound of one's voice — these are completely reasonable motivations to resent fate. But being sad about them won't make them go away. After an appropriate, healthy mourning period it's so important to get back on with the business of life. And one of the critical arts of oncology lies in helping patients do exactly that.
That's what I think we see reflected in the patient-reported quality-of-life literature. We have a lot of really amazing oncologists, oncology nurses, therapists, and social workers out there. And so 6 months after the end of treatment, their patients are learning to accept the machine they now have and are reporting that there is once again joy in their lives. It's not that they have no symptoms, it's that they've learned to be whole again including them.
Particularly where we connect deeply with a patient, it's so easy to let them pull us down into their quagmire of anger at the world, rather than pulling them back up onto the bank of optimism with us. You might consider getting yourself a classic car so that you can constantly be reminded about joyfully driving around with/in spite of defects, rather than standing in your hot, dirty garage and crying over them.
What lessons have you learned outside of medicine that can help your patients in survivorship?
Please join the discussion below, but if you need to communicate with me offline you can reach me at Medscape-Blogs@webmd.net.
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Cite this: Kathryn E. Hitchcock. Why Every Oncologist Should Own a Classic Car - Medscape - Sep 02, 2021.