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Primary CNS LymphomaClinical Notes for Practicing Oncologists

From HDMTX-based induction (R-MPV, MATRix) and RANO-PCNSL response assessment through ASCT vs WBRT consolidation, salvage strategies including TEDDI-R and ibrutinib, and primary vitreoretinal lymphoma.

NCCN 1.2026 IELSG IELSG32 · RANO-PCNSLLast reviewed: May 2026

MATRix CR Rate

~49%

IELSG32 induction

ASCT 2-yr OS

~85%

IELSG32 consolidation

Ibrutinib ORR (R/R)

50-70%

Single-agent

Concurrent Ocular

15-25%

At diagnosis

How is Primary CNS Lymphoma diagnosed, worked up, and staged before committing to HDMTX-based therapy?

Primary CNS Lymphoma (PCNSL) is an extranodal non-Hodgkin lymphoma confined at diagnosis to the brain, leptomeninges, spinal cord, or eyes, without evidence of systemic disease. Over 90% are diffuse large B-cell lymphoma (DLBCL), non-germinal centre B-cell (non-GCB) subtype by Hans algorithm.

Incidence

~5%

of primary CNS tumours

Median Age

65 yrs

Rising incidence in elderly

DLBCL, non-GCB

>90%

MYD88 L265P / CD79B mutated

Immunocompromised

~2-4%

HIV, transplant — often EBV+

FeatureDetail
Cell of originPost-germinal centre B-cell, non-GCB (Hans algorithm), CD20+, BCL6 variable, MUM1/IRF4 positive
Recurrent mutationsMYD88 L265P (~50-85%), CD79B (~60-80%) — activates NF-κB and BTK signalling, rationale for ibrutinib
Immune privilegeCNS lacks classic lymphatics; PD-L1 upregulation and immune evasion contribute to aggressive biology despite low proliferative fraction on imaging
EBV associationNearly universal in HIV-related PCNSL and post-transplant lymphoproliferative disease; rare in immunocompetent PCNSL
Steroid trap: Corticosteroids cause dramatic, rapid tumour lysis in PCNSL ("ghost tumour" or vanishing lesion on repeat MRI) and can render stereotactic biopsy non-diagnostic. Whenever possible, hold steroids until after biopsy unless the patient has impending herniation or severe mass effect.

Because PCNSL is defined by the absence of systemic disease, a complete staging workup is mandatory before labelling a lesion "primary" — occult systemic or testicular lymphoma must be excluded.

InvestigationPurposeKey Point
Contrast-enhanced brain MRILesion characterisationTypically periventricular, homogeneously enhancing, restricted diffusion; multifocal in ~30-40%
Stereotactic biopsyHistologic diagnosisPreferred over resection — surgery does not improve survival and delays systemic therapy; biopsy the enhancing rim, not necrotic core
CSF analysis (cytology + flow cytometry)Occult leptomeningeal diseasePositive in ~15-20%; lumbar puncture only if safe (no significant mass effect)
Slit-lamp ophthalmologic examOccult vitreoretinal lymphomaConcurrent ocular involvement in 15-25% at diagnosis — mandatory even if asymptomatic
Testicular ultrasound (males >60)Occult testicular DLBCLTestis is a classic occult primary site that can seed CNS relapse
Whole-body CT or PET-CTExclude systemic lymphomaRequired to confirm truly "primary" CNS disease
Bone marrow biopsyExclude marrow involvementLow yield but standard staging requirement
HIV testingImmunocompromised PCNSLChanges biology (EBV-driven) and treatment tolerance

Avoid empirical steroids before biopsy

Even a short steroid course can dissolve the tumour on imaging, delay diagnosis by weeks, and force a repeat biopsy once the lesion re-accumulates. Reserve steroids for genuine neurological emergencies and coordinate urgent biopsy first wherever feasible.

Viva Questions & Clinical Pearls

Q: Why is stereotactic biopsy preferred over resection in PCNSL?

A: Randomised and retrospective data show no survival benefit from resection, which also risks neurological deficit and delays systemic chemotherapy start; biopsy alone provides adequate tissue for diagnosis.

Q: Name three sites that must be assessed to confirm a lesion is truly "primary" CNS lymphoma.

A: Eyes (slit-lamp exam), CSF (cytology/flow), and systemic sites via whole-body CT/PET and bone marrow biopsy; testes in older males.

Q: What happens to the MRI appearance of PCNSL after steroids?

A: Rapid, often dramatic regression or complete disappearance of the enhancing lesion ("ghost tumour"), which can render subsequent biopsy non-diagnostic.

Clinical reference only. These notes are intended to support, not replace, clinical judgment. Treatment decisions should be individualised based on patient-specific factors, local protocols, and multidisciplinary team input. Always apply clinical judgment and consult local institutional guidelines where applicable.