College student thought it was a UTI — later diagnosed with stage IV ALK+ T-cell lymphoma

Lead

In June 2024 a 21-year-old college student began what she and clinicians first took to be a urinary tract infection while attending a graduation in Milwaukee. Over the following weeks fevers, severe fatigue and growing pain led to imaging, a biopsy and an unexpected diagnosis of stage IV ALK+ anaplastic large cell lymphoma. After initial treatments failed she was transferred to the Cleveland Clinic, given an experimental targeted drug, entered remission, and later underwent a bone marrow transplant on Nov. 8, 2024. Today she is in recovery, back in school and pursuing graduate training while continuing regular follow-up care.

Key takeaways

  • Patient profile: Emma Operacz, a 21-year-old Eastern Michigan University student, first noted symptoms in June 2024 and was formally diagnosed after a biopsy in July 2024.
  • Diagnosis: Pathology identified stage IV T-cell lymphoma, specified as ALK+ anaplastic large cell lymphoma, a subtype affecting about 15% of non-Hodgkin lymphoma patients.
  • Treatment timeline: After transfer to the Cleveland Clinic on July 12, 2024, she began off-label alectinib on Aug. 20, 2024, achieved remission by September 2024, and received a bone marrow transplant on Nov. 8, 2024.
  • Support and donor match: Her older sister Sara was a full match and served as the bone marrow donor for the transplant performed one day after the patient turned 22.
  • Recovery and outlook: The patient spent roughly 70 days in isolation post-transplant, graduated in December 2025, began graduate social work studies in January, and will remain under long-term surveillance to monitor relapse risk.

Background

Non-Hodgkin lymphomas are a heterogeneous group of blood cancers that arise in lymphocytes. T-cell lymphomas represent a smaller fraction of cases compared with B-cell types; within that subset, ALK+ anaplastic large cell lymphoma (ALCL) is known to occur more often in younger patients. Because early symptoms can be nonspecific — fever, fatigue, localized pain or swollen lymph nodes — early presentations are sometimes mistaken for infections such as UTIs or pelvic inflammatory processes. Clinicians typically rely on imaging, laboratory testing and ultimately tissue biopsy to distinguish infection from malignancy, but diagnostic delays can occur when initial studies are unrevealing.

The need to treat disease that has spread to the central nervous system complicates management, since many anticancer drugs do not cross the blood-brain barrier effectively. Small studies and case reports have explored targeted agents for ALK-driven malignancies because some drugs designed for other ALK-positive cancers demonstrate central-nervous-system penetration. For patients who achieve remission, high-dose chemotherapy followed by an autologous or allogeneic stem cell transplant can reduce relapse risk by eradicating microscopic residual disease and reconstituting the immune system.

Main event

The patient first self-treated with over-the-counter remedies and later received antibiotics after symptoms persisted, but her condition deteriorated with escalating fevers and severe fatigue that left her bedridden for two weeks. Initial CT imaging ruled out kidney stones and appendicitis; an ultrasound and pelvic exam noted enlarged groin lymph nodes and clinicians escalated evaluation to the emergency department. A biopsy performed during a hospital stay returned a diagnosis of stage IV ALK+ T-cell lymphoma within hours of the procedure, a result that rapidly altered the course of care.

Despite stabilization and brief discharge, she experienced acute pain and rapidly enlarging nodes that prompted ambulance transport and immediate chemotherapy at a local hospital. New scans revealed central nervous system involvement and her regional hospital arranged transfer to the Cleveland Clinic on July 12, 2024, where multidisciplinary teams reviewed options. Given progression despite initial regimens, the treating oncologist sought insurance approval to try alectinib, a lung cancer drug with evidence of CNS activity in small pediatric series for ALK-driven disease.

Alectinib therapy began on Aug. 20, 2024, and clinicians observed marked clinical improvement within days to weeks; by September the patient had achieved remission sufficient to proceed to consolidation with a bone marrow transplant. Her sister donated matching stem cells and the transplant was performed on Nov. 8, 2024. The patient required prolonged isolation and supportive care for approximately 70 days as her immune system recovered after the high-dose conditioning regimen.

Analysis & implications

This case highlights several intersecting issues in modern oncology: the challenge of differentiating common infectious syndromes from early cancer symptoms, the potential role of targeted therapies used off-label, and the logistics of securing timely access to experimental or nonstandard treatments. Diagnostic anchors, such as assuming a urinary infection in a young patient, can delay biopsy and definitive diagnosis; yet indiscriminate testing also carries costs and risks. Improving clinician awareness about warning signs that warrant earlier specialist referral may shorten time to diagnosis for a subset of patients.

The successful use of alectinib here illustrates how drugs developed for one ALK-driven tumor type can be repurposed when molecular drivers are shared across cancers. Because alectinib crosses the blood-brain barrier, it offered a potential advantage for disease that had reached the CNS. However this relies on small-scale evidence and case reports; systematic trials in adult ALK+ ALCL are limited. Insurance authorization, compassionate-use pathways and coordinated multidisciplinary care were essential to access this option in a timely manner.

Bone marrow transplantation remains a cornerstone for many patients who achieve remission but face high relapse risk. Transplant carries acute risks, extended recovery and psychological burdens, particularly for young adults confronting interrupted education, social isolation and caretaking needs. Long-term surveillance protocols typically look for reduced relapse rates at two years and long-term cure probabilities at five years after allogeneic transplant, but individual outcomes depend on disease biology and response to prior therapy.

Comparison & data

Key date Event
June 2024 Initial symptoms at a graduation in Milwaukee; presumed UTI
July 12, 2024 Transfer to Cleveland Clinic for advanced care
Aug. 20, 2024 Alectinib initiated (off-label)
Sept. 2024 Clinical remission documented
Nov. 8, 2024 Bone marrow transplant (one day after patient turned 22)
~70 days post-transplant Isolation and immune recovery period
Dec. 2025 College graduation

This timeline condenses diagnostic and treatment milestones that shaped the clinical course. It shows a rapid progression from nonspecific symptoms to advanced disease over roughly six weeks, followed by an intensive period of targeted therapy and transplant spanning late summer to winter 2024. Such timelines are not universal; some patients have slower, more indolent courses, while others present even later in advanced stages.

Reactions & quotes

‘I was like, I’m not OK. Something’s not right,’ the patient recalled during the early days when symptoms outpaced expectations for a simple infection.

Patient

This comment captured the turning point when the patient recognized the severity of her condition and sought more definitive care.

‘I watched my sister disappear in front of me,’ her sister said, describing the rapid physical decline that followed the diagnosis and the caretaking responsibilities that ensued.

Family member

Her sister later served as the bone marrow donor and described the decision to donate as immediate and resolute.

‘ALK+ anaplastic large cell lymphoma is uncommon but more likely in younger patients; targeted agents that reach the CNS can be lifesaving in select cases,’ an oncologist involved in care summarized when explaining the rationale for off-label alectinib use.

Oncologist (clinical director, adult lymphoma program)

Unconfirmed

  • The degree to which small pediatric studies of alectinib predict adult outcomes for ALK+ ALCL remains uncertain and is not established by randomized trials.
  • Long-term relapse risk for this patient will depend on multiple factors; definitive cure assessments are typically made at five years and remain pending.

Bottom line

This case underscores that seemingly routine symptoms in young adults can, rarely, signal aggressive malignancy and that persistent or worsening symptoms merit prompt reevaluation and potential specialist input. Molecularly targeted drugs repurposed from other cancers can provide critical bridges to remission when standard therapies fail, especially for disease involving the central nervous system.

Comprehensive care required rapid diagnostic workup, multidisciplinary decision making, timely insurance authorization for off-label therapy, and family support including a matched donor. For clinicians and health systems, the lessons include the importance of balancing early diagnostic vigilance with judicious testing, fostering pathways to access targeted agents when biologic rationale exists, and planning for the prolonged psychosocial and rehabilitative needs of young cancer survivors.

Sources

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