During my time as a nuclear medicine nurse, I had the privilege of caring for many wonderful and memorable patients. I coordinated certain scans and therapies, including iodone-123 (123I) – metaiodobenzylguanidine (MIBG) scans and iodine-131 (131I) – MIBG therapy. MIBG is chemically similar to norepinephrine.
When bonded with radioactive iodine and used as a tracer in molecular imaging, MIBG has a high specificity in confirming the presence of neuroendocrine tumors (NETs), such as pheochromocytomas and paragangliomas. 123I-MIBG therapy is a systemic cancer treatment for patients with MIBG avid nonsurgical NETs. The scan and therapy coordination required direct nurse involvement, because each entailed in-depth clinical review and patient teaching. Insurance authorizations also required detailed clinical information from a nurse or physician for approvals.
After some time, I became known as the “MIBG lady” and received calls from all over the country. My experiences led me to a greater understanding of cancer care within radiology, and I apply many lessons from those nuclear medicine days in my current role as a thoracic oncology nurse navigator.
One day, I received an MIBG scan order for a patient whom I’ll never forget. Let’s call him Bob. This was an internal referral from a hypertension specialist who frequently ordered this scan for her patients. Bob had uncontrolled hypertension, as well as high catecholamine levels in his urine, indicating he may have an adrenal NET. I reviewed Bob’s chart, noting his height, weight, medications, and insurance. The authorization request was submitted.
Bob was given my office number, and he called several times over the next 2 weeks. I recall being taken aback by his direct nature and at first a little confused about his concerns. His first questions were, “Are the techs nice to patients, and do they act professionally?” I answered affirmatively, but he pressed on, asking how he would be treated during his scan and stating that he would not tolerate being mistreated. I assured him every which way that the staff was not only professional and kind but also technically proficient — he was coming to a great place for radiology care.
I asked if he had experienced unprofessional conduct at my organization or elsewhere. He said yes, elsewhere. He explained that he had acromegaly and once required magnetic resonance imaging (MRI). When he called to schedule his appointment, he gave his height and weight and explained his condition. Bob went in for the scan, and the technologist acted annoyed and overwhelmed by his size and proportions. Bob didn’t fit on the table, and the technologist couldn’t figure out how to position him to include the entire area of interest in the exam. Bob explained that he was bullied a lot as a kid and made to feel like a “freak.”
The MRI experience was horrible, Bob said, and he feared a repeat during the MIBG scan. I assured him that our department would treat him with the utmost respect.
Bob’s next concern was about fitting on our scanning table. He did not want to receive the MIBG injection if he could not complete the test due to his size. I asked for his height and weight; Bob was 5 ft 11 in and weighed 195 lb. I confirmed that he did not exceed the scanner’s limits, but Bob was not satisfied. He insisted that while his numbers seemed typical, the width of his shoulders and size of his rib cage might still be too large for the gantry — the opening of the computed tomography scanner through which the patient passes during the test. I agreed to obtain its measurements.
Bob proceeded to provide his suit measurements, shoulder width, neck circumference, and leg length. All were within the parameters for the scanning table and gantry circumference, yet Bob was not satisfied. I consulted the manager for ideas on how to allay the patient’s fears. She suggested having him step through a hula hoop with his arms above his head. If he could fit through the hoop, then he could undergo the MIBG scan in full.
I called Bob back and asked, “Do you have a hula hoop?” (I’ve asked patients stranger questions.) He said no, but he’d be willing to get one. I thought our dilemma was solved.
I proceeded to describe how Bob needed to stand in the hula hoop with his arms raised like a diver’s, while another person lifted the hoop to the tip of his fingers. Bob began to cry. “I have no one,” he said, explaining that he had no family or even a close friend he felt comfortable asking for help. I wondered if he could ask a coworker. He said, “Not a chance.” It seemed he didn’t like anyone at his work.
He sobbed at times during our next few calls and confided in me about how lonely he was — but then he’d follow with how annoyed he was by most people. I felt as though I had opened a Pandora’s box of deep childhood wounds mixed with depression, apathy, and general disdain for the world. All I could think about was how terrible this would be if Bob had a NET, too.
The insurance approval came through, and the manager and I decided to schedule Bob for a dry run of the scan at the end of a workday. I enlisted one of our kindest technologists to assist in the dry run and actual scan. The technologist and I were a bit perplexed when Bob walked in. We would have never known that he had acromegaly had he not been so forthcoming. Luckily, he made it through the dry run successfully. The CT gantry accommodated Bob without any issues, and we all were relieved. The technologist spent a good hour walking him through the entire scan portion, and he was happy that he had agreed to the extra visit.
Thankfully, Bob’s MIBG scan was negative, and we ruled out a NET. He called me twice the following week to thank me again and share his good news.
This story stands out as an example of how a single bad experience in healthcare can prevent patients from addressing their medical concerns. Due to Bob’s negative interaction with radiology, he was ready to avoid a critical test that could evaluate the presence of cancer.
Bob was a challenging patient who forced us to get creative and go the extra mile, but I’m sure glad that we did. I hope this positive experience in nuclear medicine softened his view of healthcare providers, if only just a little.
Katie Fanslau, MS, BSN, RN earned a bachelor’s degree in nursing from Wilkes University in 2001. She has worked at Penn Medicine, in Philadelphia, since 2008, first as the nuclear medicine therapy nurse, then transitioning to oncology nurse navigation, focusing on patients with lung cancer, in 2016. She is working toward her doctors of nursing practice at Capella University.