Appointment sheet
Thymoma (WHO types A, AB, B1, B2 and B3)
Prepared with OnCo (onco.cc/prep/thymoma/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
17 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example WHO histotype, Masaoka-Koga and TNM stage, Completeness of resection, Acetylcholine receptor antibodies, GTF2I L424H mutation), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis and staging
- 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Resectable (stage I to III)
- 6.For my situation (resectable (stage i to iii)), which of the standard options do you recommend and why?
After surgery
- 7.For my situation (after surgery), which of the standard options do you recommend and why?
Unresectable or bulky disease
- 8.For my situation (unresectable or bulky disease), which of the standard options do you recommend and why?
- 9.Am I a candidate for Cisplatin, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?
Recurrent or metastatic disease
- 10.For my situation (recurrent or metastatic disease), which of the standard options do you recommend and why?
- 11.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Everolimus, Sunitinib or related drugs, and what side effects should I expect?
- 12.How do the results of A Study of KC1036 in Patients with Advanced Thymic Tumors and Target-Selected CAR-NK Cells (CD30, CD5, or Mesothelin) for Relapsed/Refractory B2 Thymoma or Thymic Carcinoma apply to someone like me?
Any stage
- 13.Are there clinical trials I could join, for example of Everolimus, Sunitinib, Lenvatinib, A Study of KC1036 in Patients with Advanced Thymic Tumors?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “Randomised trials are almost absent; postoperative radiotherapy for stage II disease rests on registry data”. How does that affect my plan?
- 17.I read that “No systemic therapy is approved specifically for thymoma”. How does that affect my plan?
The words I may hear
- Disease-specific staging and risk systems (FIGO, Ann Arbor, IPI, R-ISS, ELN, IMDC): Beyond the generic TNM system, gynaecological cancers (FIGO), lymphoma (Ann Arbor, IPI), myeloma (R-ISS), AML (ELN), kidney cancer (IMDC), neuroblastoma (INRG) and CLL (Rai, Binet) each have their own system that combines stage, blood tests, genetics and fitness into risk groups.
- Immune-related adverse events (irAEs): Immune-related adverse events (irAEs) are the autoimmune side effects of checkpoint inhibitors: colitis, thyroid problems, rash, hepatitis, pneumonitis.
Tests and results to bring
Diagnosis and staging: Contrast CT of the chest, acetylcholine receptor antibodies and neurology review; no biopsy of a resectable encapsulated mass; MRI to separate thymoma from cysts and hyperplasia.
Biomarker results to ask for: WHO histotype, Masaoka-Koga and TNM stage, Completeness of resection (R0, R1, R2), Acetylcholine receptor antibodies (myasthenia screen before surgery), GTF2I L424H mutation (type A and AB), Octreotide scan or somatostatin receptor PET (somatostatin analogue eligibility).
Scans and tests linked to this cancer: CT (computed tomography), MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable (stage I to III): Complete thymectomy with the tumour, by sternotomy or minimally invasive or robotic approaches for smaller tumours; en bloc resection of involved pericardium, lung or vessels for stage III. (Robotic & minimally invasive surgery)
- After surgery: Postoperative radiotherapy for stage III or incomplete resection; considered for stage II B2 to B3 tumours; observation for completely resected stage I and II type A to B1. (IMRT / IGRT (modern external beam), Proton therapy)
- Unresectable or bulky disease: Induction chemotherapy with cisplatin, doxorubicin and cyclophosphamide (CAP) or a platinum doublet, then surgery or radiotherapy according to response. (Cisplatin, Doxorubicin, Cyclophosphamide, Carboplatin, Paclitaxel / nab-paclitaxel)
- Recurrent or metastatic disease: Repeat resection of pleural recurrences where feasible; chemotherapy rechallenge; octreotide with prednisone for octreotide-scan-positive tumours; everolimus, sunitinib or lenvatinib; PD-1 antibodies avoided or given only in trials because of severe immune toxicity. (Somatostatin analogues (octreotide, lanreotide), Everolimus, Sunitinib, Lenvatinib, Immune-related adverse events (irAEs), A Study of KC1036 in Patients with Advanced Thymic Tumors, Target-Selected CAR-NK Cells (CD30, CD5, or Mesothelin) for Relapsed/Refractory B2 Thymoma or Thymic Carcinoma)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call