Awaiting Pathology: From Oncology Clinician to Oncology Patient

Abstract

In the field of oncology, anticipating test results, particularly pathology, can be distressing. This case discusses the personal experience of an oncology clinician who became an oncology patient and navigated the anxiety of awaiting pathology results during her melanoma diagnosis. By sharing these personal insights, this case can hopefully help patients manage the psychological stress of waiting for test results and help to inspire clinicians to make small practice changes, which may help decrease this stressful burden for patients.

When one has a diagnosis (or potential diagnosis) of cancer, anticipating results from scans, laboratory work, and/or a biopsy can be daunting. The American Cancer Society (2023) emphasizes that it is “normal” to have “strong emotions, such as anxiety, fear, anger, or sadness” while waiting for test results, yet research has shown that medical test-related emotional distress can be ongoing for people with cancer and so intense that some patients describe receiving bad or unfavorable results as preferable to enduring the wait (Lang et al., 2009; Mannion et al., 2023). This case discusses my own experience of waiting for oncology test results from the perspective of a patient who is also an oncology clinician.

THE CASE

My annual dermatology appointment fell on a rainy, cold day. A resident performed a thorough examination and marked an area on my right shoulder that she felt should be discussed with her attending physician. The attending physician agreed that the area showed some “central color change” and conducted a biopsy. Over the following days, I seldom thought about the biopsy, which had seemed routine. On the tenth day, I received an unexpected call from my dermatologist. Her tone was professional, kind, and compassionate. She explained, “I am glad that we did a biopsy because the pathology shows melanoma.” She immediately offered helpful reassurance: “Don't freak out. Let's talk about it. I already have a plan.” As an oncology nurse practitioner, I was familiar with the topics covered during our subsequent discussion, such as Breslow thickness, Clark's level, and staging. My dermatologist clarified the melanoma removal guidelines and scheduled a surgery date. The surgery went well. A week later, I was notified that it had been successful, as the site showed “clear margins.”

I had regular follow-up appointments and some subsequent biopsies over the next year; each time, my pathology results were provided within 7 to 10 days, consistent with national standards and expectations. At the 1-year follow-up of my melanoma diagnosis, my dermatologist noticed a mole that had changed color and recommended a biopsy. We discussed plans, pending the findings. This time, however, the days of waiting felt much different. Despite my professional role, as a patient I experienced significant anxiety, stress, insomnia, nausea, and fear that grew worse with each passing day. I frequently found myself focusing on negative “What ifs.” My anxiety level continued to rise when I received a notification that the clinic note had been posted. I read the differential diagnoses, which included melanoma, although this had been discussed with me at the visit. On day 13, my dermatologist called and informed me that the mole was concerning and should be removed immediately. However, despite this “bad news,” I felt a settling of my anxiety as soon as I heard her voice on the phone and knew that she had a plan.

DISCUSSION AND PRACTICE IMPLICATIONS

Numerous publications have discussed distress associated with waiting for medical test results, including pathology. For cancer survivors, uncertainty pertaining both to the disease and to potential new sites of malignancy can lead to chronic anxiety (Zhang, 2017). Research has shown that many patients find anticipating results more distressful than having a medical procedure (Conley & Lenton, 2012). As a clinician-patient, I am sharing the insights gained from my own experience of anticipating pathology results with the hopes of (1) helping others to cope with test-related anxiety, and (2) helping clinicians to better understand the coping needs of patients who are awaiting pathology results.

Patients

To my fellow patients: Please do not sit alone at home, reading obsessively about potential diagnoses and pathology. Avoid ruminating and indulging intrusive thoughts. Instead, try the following coping strategies, which I have found helpful.

1. Find your support: Share your concerns with trusted people who will validate your feelings and remind you that you are not alone on this journey.

2. Find and accept distractions: Enjoy pleasant activities with friends. If you are a parent, play with your kids. Go out for ice cream or your favorite treats. Seek ways to have fun.

3. Focus on positive thoughts and anticipate the success of your plan: Trust that your health-care team will implement an effective plan for an optimal outcome.

4. Advocate for yourself: If your test results are taking longer than expected, contact your provider. They may be able to provide insight about the delay as well as reassurance.

Clinicians

To my fellow oncology clinicians: The experience of being diagnosed with cancer has offered me the following perspectives about my practice and provision of care, which I share:

1. Writing the note: Pay careful attention to how a note is written and when it is signed, as it will likely post to most electronic medical records immediately. Consider signing notes during business hours so that if patients read them and have questions, they can message a request for clarification without having to wait overnight, or worse yet, over a weekend.

2. Delivering the news: I encourage health-care providers to consider contacting patients with results immediately, even at the end of the day. Some clinicians may feel reticent to give bad news before a weekend; however, research suggests that patients prefer hearing bad news with a plan over waiting for imminent results (Conley & Lenton, 2012). Studies have shown higher anxiety levels in anticipating bad news compared to those who receive it (Sweeny & Falkenstein, 2015); higher cortisol levels in men awaiting prostate biopsy results than in those whose results were returned, regardless of the results (Gustafsson et al., 1995); and significantly higher (less desirable) cortisol levels in women who underwent a breast biopsy and remained uncertain about their results on day 5 post biopsy (Lang et al., 2009). Additionally, it is important to utilize methods such as the SPIKES protocol to deliver bad news to ensure that patients are provided knowledge, emotional support, and clarity (Baile et al., 2000). Knowing the patient perspective is also important, as patients' needs help determine how the news should be delivered (Harris & Gilligan, 2022). In my case, my provider did an excellent job balancing information that she provided to me from both a patient and a health-care provider perspective.

3. Communicating a plan: When delivering news, remind the patient that you, their health-care provider, have a plan. Whether that plan entails discussing possible treatments or involves surgery or chemotherapy, hearing that a plan is in place supports confidence and positivity and provides reassurance to patients. As a clinician, it is important to recognize the need for further conversations. Portnoy (2010) showed that anticipating a test result could impair the recall of information related to the test and subsequent plan.

Oncology advanced practitioners are on the front line of patient care. We frequently deliver imaging and pathology results involving “bad news.” As an oncology provider who has experienced the unexpectedly intense distress of awaiting test results, I encourage providers to be aware of the strong psychological impact of anticipating test (laboratory, imaging, pathology) results. Even minor changes in practice, such as how and when we communicate results, can help patients cope more comfortably and confidently as they embark on a cancer journey.