“So if I hear what you’re telling me, Doc, I need surgery then 6 months of chemo. Well, it’s November now. Let’s get this show on the road. I intend to be done with this whole thing by next summer,” says Sylvia*, my recently diagnosed, indefatigable patient with endometrial cancer.
“All right. I’m with you. But maybe we best leave a little wiggle room and expect the unexpected,” I reply.
Each day, oncologists balance the promise of hope against the specter of death. After initial diagnosis, we outline our treatment plan forward. The roadmap from darkness to deliverance. We spend considerable and valuable time with each patient and their family describing the disease, its treatment, and the inherent risks and benefits. And when we are at the top of our game, we clearly define the goals of treatment: cure or palliation. Life or death.
“I think I’d like a second opinion,” Sylvia requests.
“Great idea. These are big decisions and it never hurts to have somebody else lay another set of eyes on the case. In the meantime, let’s get a PET scan to confirm our ultrasound findings.”
The second opinion affirms the brilliance of your plan. Then the PET scan refutes it. Liver metastasis. Damn. This next phone call will be tough. So you call the patient and her husband to let her know the concerning PET scan findings and recommend a confirmatory liver biopsy.
“I didn’t expect this,” Sylvia exhales, dejected.
“Nor did I. But I’m glad we know. We’ll need a plan B. So let’s go ahead with the liver biopsy. I expect it will confirm the PET findings. If that’s the case, we’ll flip the order of treatment and start with chemo first, then surgery. Okay?”
“I guess," she mumbles. “It’s so hard to stay positive.”
“This is tough. Let’s get the biopsy first. Right now, we’re just looking at shadows.”
Biopsy completed. No problems. One week later, the final pathology report reads “benign hemangioma.” Seriously? That can’t be right. But all five core biopsies concur. Damn. Well, at least this next phone call will be better. But before you have a chance to call, Sylvia is in the emergency department with right upper quadrant abdominal pain. Better check another CT scan to make sure she’s not bleeding from the biopsy site. With images completed, her pain is likely just constipation from the pelvic mass compressing the bowel. And although there is no bleed, several new lesions are identified within the liver suspicious, but not diagnostic, for metastasis. Damn. Damn!
Another long discussion. Back to plan A.
Surgery proceeds uneventfully. However, laparotomy confirms definitive liver metastasis. Damn! Damn!! Damn!!! Plan C, surgery followed by a more aggressive chemo course. And barely out of the gate.
In my experience, cancer treatment plans rarely progress linearly. They zig and they zag. They twist and turn, meandering into places that nobody, especially the patient, ever anticipated. Each unexpected misstep promises countless frightening possibilities. Much like Robert Frost’s “The Road Not Taken,” each way leads on to way, driving us more deeply into the yellow wood. In literature, the beauty and wildness and surprise of the journey make all the difference. In medicine, data points and clinical trials and experience guide choices in the road to be taken, not simply curiosity of what may be awaiting us beyond the next bend. But the further we veer from the anticipated course, the more wrong and dark and sinister it feels. We are soon lost. And although clinging to plan A might feign comfort, its veil of simplicity shrouds the complex decision-making required to navigate successfully a tricky case.
And as challenging as it is for clinicians to traverse the impenetrable medical forest, others, with far more skin in the game, careen wildly from one unchosen path to the next. Patients and their families look upon us to see the hidden dangers and guide them safely beyond. For it is indeed their journey. We are mere guides. Guides through treacherous, unmapped landscapes. Guides through the valley of the shadow of death.
Researchers find key elements of resilience, or the ability to thrive in the face of adversity, in all aspects of the cancer care continuum. Although some aspects of resiliency are intrinsic (hopefulness, motivation, preexisting social support), others can be coached (stress management, coping skills, goal setting, and practicing gratitude).1 Oncologists serve as primary care physicians within the spectrum of cancer care. Our professional obligations begin with designing effective and safe cancer treatment plans individualized to each patient, her goals, her physiology, and the biological aspects of her cancer. But we must also manage the symptoms of the disease, its treatment, and the myriad of psychosocial, spiritual, and physical distresses accompanying a cancer diagnosis. This care can be referred to appropriate professionals to be addressed only by them. But I believe it is our moral obligation, defined within the doctor/patient relationship, to stay involved in assessing and managing the host of afflictions that cancer causes. We have the best vantage point of the disease process and the patient’s adaptation to it. We can often predict the next twist and how to avoid upcoming pitfalls. We can see when patients’ resilience is failing and coach coping skills and mindfulness.
Along the cancer journey, roads travelled often diverge. Way leads on to way, taxing the resiliency of the patient and her health care team alike. In cases like Sylvia’s, practicing and coaching techniques of mindfulness fosters resilience and can improve her overall quality of life during this difficult journey. But for those practitioners fortunate enough to care for patients truly gifted with unbridled resilience, stand back and observe a thing of true beauty and power. Use these cases as patient-to-doctor teaching moments, demonstrating the core concepts of resiliency. Watch how hopefulness and practicing gratitude combine with appropriate goal setting to deliver patients from the wilderness. Then model and teach these techniques to those less able. That will make all the difference.
*Name and identifying details changed to protect privacy.
- Molina Y, Yi C, Martinez-Gutierrez J, et al. Resilience among patients across the cancer continuum: diverse perspectives. Clin J Oncol Nurs. 2014;18:93-101.
Elizabeth Glosik, BS
Jan, 23 2018 12:28 PM
As a patient advocate, I am always looking to find ways to get the patient's and doctor's perspective to mesh. Thank you for addressing the resiliency aspect of disease management, and the importance of coaching the elements that are not innate in many patients. That being said, patients need to be offered the resources for those elements so they can really capitalize on their benefits, and this is where the disconnect often happens.