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When the Continuum of Cancer Care Hits Close to Home

Laura Cannon, PharmD MPH
Clinical Assistant Professor and Oncology Pharmacist
The University of Texas at Austin College of Pharmacy and Dell Medical School Livestrong Cancer Institutes
Austin, TX

A young adult male presents with sudden-onset symptoms of constipation, abdominal pain, cramping, abdominal distention, and decreased appetite. What is the diagnosis? Gastroesophageal reflux disease, severe constipation, infectious colitis, and idiopathic gastroparesis. These were all diagnoses my 30-year-old husband, Tom, received over the span of a few months while we visited three emergency departments. He received more tests than I can count, and the final diagnosis was a mild, early case of Crohn’s disease. After that, we spent much of our time researching this new diagnosis and meeting with physicians to discuss management options. We had an overwhelming amount of information to process, but we were thankful to finally have an explanation for his symptoms. We were also thankful that the diagnosis didn’t include one word—cancer, the word we were most afraid of.

Four months later, Tom’s symptoms began to return. We attributed this to a change in his medications and what we thought was just life with Crohn’s disease. How could it be anything else? He was young and healthy, he had no family medical history that caused us concern, and we had seen so many doctors and run so many tests. His symptoms progressively worsened to the point that he was febrile with a pain so intense he was unable to stand up straight. He was a teacher, so he had probably just caught the stomach bug that was going around school, and it was nothing to worry about, we thought. We made our fourth visit to the emergency room that night. A new CT scan showed an 18-by 22-centimeter mass in his abdomen. Where did this come from? How long had it been there? How was that possible? We had done everything right.

Tom was admitted to the surgical service, and we gave an extensive history from the onset of his symptoms and including the diagnosis of Crohn’s disease. We were told that the mass could also represent an infection stemming from his recent colonoscopies and might be just an abscess. We were thinking about only one word, though—cancer—but that word was still not being discussed, at least not with us. The team started antibiotics for a possible abscess while we waited for the scheduling of a biopsy. As a postgraduate year-1 pharmacy resident interested in becoming an oncology pharmacist, I knew that biopsy was the gold standard for diagnosis of the word that we feared.

We waited…and waited…and waited, until about 5 days later, when Tom was finally taken to interventional radiology for a biopsy. When he came out of the procedure, he told us that the radiologist had asked what had happened because the appearance of the mass had changed significantly. The next few minutes of that day are very much a blur. I remember being excited—maybe it was just an abscess! That excitement was quickly stifled when the surgeon rushed in to say that my husband’s intestines had perforated during the wait for the biopsy, which explained why the imaging looked different. The excitement turned to panic, which amplified as we rushed to the operating room. Tom underwent an exploratory laparotomy, leaving him with an ileostomy, a surgical drain, and a ticket to the intensive care unit. We got the biopsy but not in the way it was originally planned.

About a week after surgery, we started hearing the dreaded C-word. Tom was finally diagnosed with cancer, what we had feared all along. Because this is not an article about treatment decisions, I will refrain from using details related to his specific diagnosis. However, I will say that his diagnosis was not straightforward. He received his chemotherapy treatment as an inpatient, and despite being very disheartened at the thought of spending so much time in the hospital, he tolerated the treatment with minimal issues. We even started to attempt to go back to our normal lives, what we craved the most.

Tom’s scans throughout treatment looked great and showed significant disease response. However, about 1 week before the appointment to review his final scan, he started showing clinical signs of disease progression. After yet another trip to the emergency room and a long discussion between the surgeon and the oncologist to determine whether the scan resembled postsurgical changes or disease burden, it was confirmed that Tom had progressive disease. His next-best treatment option was to participate in a clinical trial.

I do not know the behind-the-scenes proceedings of finding a clinical trial for Tom, but I do know about this process from my own clinical experience. It is not clearly established who owns the role of finding a clinical trial. The patient? The physician? An advocacy organization? A friend’s friend who heard that this place has a new drug they are studying? If the patient is lucky enough to find a clinical trial, getting the trial institution the correct information and managing a smooth transition is an entirely separate issue. Although significant travel was required, we were so thankful when we learned that there was an available trial for Tom. We showed up to our appointments, signed the consent forms, and did all the things we were instructed to do, but it still wasn’t enough.

On our second day of trial appointments, we received word in a phone call that Tom’s exact pathology did not match the inclusion criteria, and he could no longer be enrolled. After going to multiple trial appointments and traveling all this way, he was no longer a candidate. The difficulty of clinical trials goes far beyond the issue of finding the trial. It includes strict inclusion and exclusion criteria and protocol requirements, and unless you are lucky enough to have a local trial available, participation requires extensive patient travel and the need for sharing of records between institutions. This highlights an important issue for oncology patients: effective communication and record sharing. Cancer patients and their loved ones are already struggling to process the information they are receiving about their diagnosis and prognosis and to manage their day-to-day lives. Unfortunately, they also serve as their own medical record for disease-related information. Lack of communication and issues related to transferring medical records between institutions should not be a barrier to receiving timely cancer care, but they unfortunately are things that patients, including Tom, deal with routinely.

Because of his ineligibility for the clinical trial, we were now stuck—in a new city, with no promise of hope from a trial, but still with a rapidly progressing disease. We stayed and got a second opinion that did not differ much from the first. We tried a few more rounds of chemotherapy and attempted to get access to off-label medications without success. In my eyes, there were not many things left to try. In the physician’s eyes, Tom was young and had plenty of options; this was a perspective I came to see as a common barrier to care.

Sometimes in the healthcare setting we avoid difficult conversations, which ultimately can prevent patients from receiving the necessary information to make end-of-life decisions. Seeing my husband told that he had plenty of options when I knew that he didn’t was more than I could handle, because I knew that this burden would now fall on me, his wife. Just as the conversations about the initial diagnosis and treatment are important, so are the conversations about treatment goals and end-of-life wishes. Although I do not think it is within my scope as a pharmacist to have these conversations, I can serve as a reminder of their importance to the physicians I work with each day. I will carry this lesson with me as an oncology pharmacist forever.

Shortly after returning home and following an appropriate discussion about his goals, Tom transitioned to hospice care. He passed away about 6 weeks later, only 9 months after his initial diagnosis. Those 9 months spent as a caregiver, along with my experience as an oncology pharmacist, have illustrated a few of the barriers and roadblocks that cancer patients may encounter at the time of their diagnosis and throughout their treatment.

The first barrier is related to common frustrations with the healthcare system and the difficulty of scheduling appointments with specialists. For us this meant being told about an 18-by-22-centimeter mass while we were standing in the middle of the emergency room because there was not a room available. It meant our having to repeat Tom's medical history, including all his tests and emergency room visits, to multiple teams of physicians and hoping we remembered the important details. It meant Tom’s waiting in the hospital for a biopsy and subsequently developing a perforation that resulted in emergency  surgery. All of these are examples from my own experience, but we see similar situations so frequently in our healthcare systems. For patients and loved ones dealing with the thought of the C-word, nothing will ever happen in a timely enough manner—but sometimes delays can lead to more than just worsening anxiety.

The second barrier is the common assumption that because a patient is young or healthy, the diagnosis isn’t cancer. Looking back, I can see the avoidance of the word and the diagnosis. From the medical perspective, the diagnosis may not have been deemed worth discussing until it had been confirmed, but it was always crossing our minds.

The third barrier, though uncontrollable, is related to cancer itself. Sometimes you do everything right: you seek medical care for symptoms, you receive the appropriate tests, you are being closely followed by physicians you trust—and it is not enough. The cancer is too smart, too sneaky. That was the case with Tom.

In Tom’s story we had many things to be thankful for: we lived in close proximity to a cancer center, he had a family member with oncology knowledge, he had insurance coverage, we speak English as our first language, and the list could go on. However, we also ran into some of the most common and formidable barriers that arise in cancer care.

The purpose of this article is not to complain about Tom’s care or our circumstances, but to provide—from the viewpoint of both a caregiver and an oncology pharmacist—even the smallest insight into the issues that so many patients diagnosed with cancer encounter. It is my hope that, by sharing Tom’s story, I can raise awareness, spark empathy, and increase understanding of the day-to-day challenges that many cancer patients and their loved ones face.

Disclaimer: The account in this article is based on my memory of events as they occurred. It is meant in no way to criticize or discount the wonderful care my husband received from his healthcare team but to highlight the general need for improvement in areas surrounding cancer care.