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PubMed This is a summary of 22 peer-reviewed journal articles Updated
Hematology

Building Your Care Team & First Visit Prep

At a Glance

For Castleman disease, building a multidisciplinary care team with a hematologist and specialized hematopathologist is essential. When visiting a specialist, always bring your physical pathology slides, tissue blocks, and imaging on discs to ensure an accurate review and diagnosis.

Castleman disease (CD) is complex and rare, which means the “standard” doctor-patient relationship often isn’t enough. To get the best care, you need a multidisciplinary team—a group of specialists from different fields working together to ensure your diagnosis is correct and your treatment is precise [1][2][3].

Assembling Your “Dream Team”

Because CD affects the immune system, lymph nodes, and often multiple organs, your care team should include:

  • Hematologist/Oncologist: The “quarterback” of your team. They manage systemic treatments like chemotherapy or monoclonal antibodies (e.g., siltuximab) [4][5].
  • Hematopathologist: A specialized doctor who looks at blood and lymph node tissue under a microscope. Their role is critical because CD is notoriously easy to mistake for lymphoma [6][7].
  • Surgeon: Primarily for those with Unicentric Castleman Disease (UCD), where complete surgical removal is the goal [8][9].
  • Radiologist: An expert in reading scans (CT, MRI, PET/CT) to track where the disease is located and how it responds to treatment [10][11].

Finding a CD Specialist

Most local doctors may only see one case of Castleman disease in their entire career. It is highly recommended to connect with a specialist who has dedicated experience in this specific field.

  • The CDCN Network: The Castleman Disease Collaborative Network (CDCN) maintains a global community of experts. They can help you find “CD-friendly” physicians who stay current on the latest research and international consensus guidelines [12][1].
  • Patient Navigation: Utilizing patient advocacy resources can help bridge the gap between a rare diagnosis and specialized centers of excellence [13][14].

First Visit Checklist: What to Bring

For a rare disease, a printed summary is not enough. You must bring the physical evidence of your disease so the specialist can review it themselves.

  • [ ] Pathology Materials: Request the actual glass slides and tissue blocks from the hospital where your biopsy was performed. A new expert review of the “architecture” of your lymph node is the single most important part of a second opinion [6][15].
  • [ ] Imaging on Disc: Get your CT, MRI, and PET/CT scans burned onto CD-ROMs in DICOM format. Do not rely on just the printed report [10][16].
  • [ ] Complete Lab History: A chronological list of your blood work, specifically looking for trends in CRP, hemoglobin, albumin, and creatinine [17][18].
  • [ ] Biopsy Report: Ensure you have the full, unabridged pathology report (not a summary) from your excisional biopsy [19][20].

Vetting Your Doctor

It is okay—and encouraged—to “interview” your doctor to ensure they have the expertise you need. CD mimics many cancers, so you want to ensure they aren’t treating you with a “one-size-fits-all” lymphoma approach [21][22]. A doctor who is comfortable with rare diseases will welcome your questions and the involvement of the CDCN [12][1].

Common questions in this guide

What kind of doctor treats Castleman disease?
A hematologist or oncologist typically leads the care team for Castleman disease. Because it is a rare condition affecting the lymph nodes and immune system, a multidisciplinary team including a hematopathologist, surgeon, and radiologist is highly recommended.
What should I bring to my first Castleman disease specialist appointment?
You must bring the physical pathology materials, including the actual glass slides and tissue blocks from your biopsy. You should also bring your imaging scans on a CD-ROM, your complete lab history, and your full, unabridged biopsy report.
Why do I need a hematopathologist on my care team?
A hematopathologist specializes in examining blood and lymph node tissue under a microscope. Their expertise is crucial because Castleman disease is notoriously easy to mistake for lymphoma, and an expert review of the lymph node's architecture is essential for a correct diagnosis.
How can I find a doctor who specializes in Castleman disease?
The Castleman Disease Collaborative Network (CDCN) maintains a global community of medical experts. You can use their patient resources to connect with specialized, CD-friendly physicians who stay current on the latest research and treatment guidelines.
What questions should I ask a new doctor about Castleman disease?
You should ask how many Castleman disease patients they have personally treated in the past year and if they are familiar with the latest CDCN consensus guidelines. It is also helpful to ask if your case will be reviewed by a multidisciplinary tumor board.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with Castleman disease (not just lymphoma) have you personally treated in the last year?
  2. 2.Are you familiar with the most recent CDCN diagnostic and treatment consensus guidelines?
  3. 3.Do you have a specific hematopathologist you work with who is an expert in reading lymph node architecture for rare diseases?
  4. 4.Will my case be discussed in a multidisciplinary 'tumor board' or similar collaborative meeting?
  5. 5.If my disease is idiopathic multicentric (iMCD), do you have experience managing anti-IL-6 therapies like siltuximab?

Questions For You

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References

References (22)
  1. 1

    The application of a multidisciplinary approach in the diagnosis of Castleman disease and Castleman-like lymphadenopathies: A 20-year retrospective analysis of clinical and pathological features.

    Pelliccia S, Rogges E, Cardoni A, et al.

    British journal of haematology 2024; (204(2)):534-547 doi:10.1111/bjh.19171.

    PMID: 37953489
  2. 2

    Development and implementation of the International AIDA Network Castleman's disease registry.

    Vitale A, Sbalchiero J, Caggiano V, et al.

    Frontiers in medicine 2025; (12()):1579182 doi:10.3389/fmed.2025.1579182.

    PMID: 40969814
  3. 3

    Castleman Disease in a Child: A Rare Cause of Persistent Cervical Lymphadenopathy.

    Dutta A, Sarma D, Medhi P, et al.

    Cureus 2025; (17(11)):e96352 doi:10.7759/cureus.96352.

    PMID: 41367475
  4. 4

    Updates on the diagnosis and management of multicentric Castleman disease.

    Wu YJ, Su KY

    Tzu chi medical journal 2021; (33(1)):22-28 doi:10.4103/tcmj.tcmj_15_20.

    PMID: 33505874
  5. 5

    Castleman disease of the renal hilum: A rare case report.

    Yaynishet YA, Abera MT, Reta BK, et al.

    Radiology case reports 2024; (19(8)):3130-3135 doi:10.1016/j.radcr.2024.04.053.

    PMID: 38774652
  6. 6

    Castleman disease-type histopathological patterns of lymph nodes in patients with plasma cell neoplasia and POEMS syndrome.

    Rodriguez-Merino L, Montes-Moreno S

    Annals of diagnostic pathology 2025; (74()):152414 doi:10.1016/j.anndiagpath.2024.152414.

    PMID: 39608292
  7. 7

    The morphological spectrum of Castleman disease and related disorders: a report from the Lymphoma Workshop of the 22nd Meeting of the European Association of Hematopathology.

    Gasljevic G, Bonometti A, Anagnostopoulos I, et al.

    Virchows Archiv : an international journal of pathology 2025; (487(2)):253-273 doi:10.1007/s00428-025-04171-w.

    PMID: 40646240
  8. 8

    Pelvic unicentric Castleman's disease mimicking accessory spleen: A rare presentation of Castleman's disease, a case report and literature report.

    Emiru ZA, Getahun AM, Kassie YG, et al.

    International journal of surgery case reports 2025; (129()):111177 doi:10.1016/j.ijscr.2025.111177.

    PMID: 40106952
  9. 9

    Complete resection of unicentric Castleman disease in the superior mediastinum: A case report.

    Haro A, Kuramitsu E, Fukuyama Y

    International journal of surgery case reports 2016; (25()):44-7.

    PMID: 27318017
  10. 10

    Imaging and clinical features of Castleman Disease.

    Zhao S, Wan Y, Huang Z, et al.

    Cancer imaging : the official publication of the International Cancer Imaging Society 2019; (19(1)):53 doi:10.1186/s40644-019-0238-0.

    PMID: 31345268
  11. 11

    Multicentric Castleman's disease: Report of three cases.

    Guazzaroni M, Bocchinfuso F, Vasili E, et al.

    Radiology case reports 2019; (14(3)):328-332 doi:10.1016/j.radcr.2018.10.005.

    PMID: 30581518
  12. 12

    Taking Control of Castleman Disease: Leveraging Precision Medicine Technologies to Accelerate Rare Disease Research.

    Newman SK, Jayanthan RK, Mitchell GW, et al.

    The Yale journal of biology and medicine 2015; (88(4)):383-8.

    PMID: 26604862
  13. 13

    Medicaid coverage and access to obstetrics and gynecology subspecialists: findings from a national mystery caller study in the United States.

    Corbisiero MF, Tolbert B, Sanches M, et al.

    American journal of obstetrics and gynecology 2023; (228(6)):722.e1-722.e9 doi:10.1016/j.ajog.2023.03.004.

    PMID: 36907536
  14. 14

    Linking young men who have sex with men (YMSM) to STI physicians: a nationwide cross-sectional survey in China.

    Cao B, Zhao P, Bien C, et al.

    BMC infectious diseases 2018; (18(1)):228 doi:10.1186/s12879-018-3145-2.

    PMID: 29776395
  15. 15

    Coexistence of disseminated Kaposi sarcoma and multicentric Castleman disease in an HIV-infected patient under viral suppression.

    Lin IF, Lin JN, Tsai TH, et al.

    International journal of STD & AIDS 2021; (32(3)):286-289 doi:10.1177/0956462420968385.

    PMID: 33555231
  16. 16

    Castleman Disease of the Thorax: Clinical, Radiologic, and Pathologic Correlation: From the Radiologic Pathology Archives.

    Kligerman SJ, Auerbach A, Franks TJ, Galvin JR

    Radiographics : a review publication of the Radiological Society of North America, Inc 2016; (36(5)):1309-32 doi:10.1148/rg.2016160076.

    PMID: 27618318
  17. 17

    Diagnostic and therapeutic challenges in hyaline-vascular idiopathic multicentric Castleman disease: A case report.

    Lu C, Ma X, Liu B, et al.

    The Journal of international medical research 2025; (53(10)):3000605251381574 doi:10.1177/03000605251381574.

    PMID: 41126405
  18. 18

    Castleman disease and TAFRO syndrome.

    Masaki Y, Arita K, Sakai T, et al.

    Annals of hematology 2022; (101(3)):485-490 doi:10.1007/s00277-022-04762-6.

    PMID: 35044513
  19. 19

    Expert consensus on the integrated diagnosis of idiopathic multicentric Castleman disease.

    Montes-Moreno S, Climent F, Fraga M, et al.

    Revista espanola de patologia : publicacion oficial de la Sociedad Espanola de Anatomia Patologica y de la Sociedad Espanola de Citologia 2023; (56(3)):158-167 doi:10.1016/j.patol.2022.12.003.

    PMID: 37419554
  20. 20

    Castleman disease versus lymphoma in neck lymph nodes: a comparative study using contrast-enhanced CT.

    Li J, Wang J, Yang Z, et al.

    Cancer imaging : the official publication of the International Cancer Imaging Society 2018; (18(1)):28 doi:10.1186/s40644-018-0163-7.

    PMID: 30115111
  21. 21

    Treatment and Outcome of Castleman Disease: A Retrospective Report of 31 Patients.

    Tang D, Guo Y, Tang Y, Wang H

    Therapeutics and clinical risk management 2022; (18()):499-509 doi:10.2147/TCRM.S354130.

    PMID: 35502435
  22. 22

    Pathology of Castleman Disease.

    Wu D, Lim MS, Jaffe ES

    Hematology/oncology clinics of North America 2018; (32(1)):37-52 doi:10.1016/j.hoc.2017.09.004.

    PMID: 29157618

This page provides educational information on building a care team and preparing for medical visits for Castleman disease. It is not a substitute for professional medical advice, diagnosis, or treatment.

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