Appointment sheet
Thymoma and thymic carcinoma
Prepared with OnCo (onco.cc/prep/thymic-epithelial/). 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
16 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 and Masaoka-Koga / TNM stage, Completeness of resection, Acetylcholine-receptor antibodies, GTF2I L424H, KIT 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?
Resectable (stage I-III)
- 5.For my situation (resectable (stage i-iii)), which of the standard options do you recommend and why?
Locally advanced unresectable
- 6.For my situation (locally advanced unresectable), which of the standard options do you recommend and why?
- 7.Am I a candidate for Cisplatin, Doxorubicin, Cyclophosphamide or related drugs, and what side effects should I expect?
Recurrent thymoma
- 8.For my situation (recurrent thymoma), which of the standard options do you recommend and why?
- 9.Am I a candidate for Somatostatin analogues (octreotide, lanreotide), Everolimus, and what side effects should I expect?
Recurrent thymic carcinoma
- 10.For my situation (recurrent thymic carcinoma), which of the standard options do you recommend and why?
- 11.Am I a candidate for Sunitinib, Lenvatinib, Pembrolizumab or related drugs, and what side effects should I expect?
Any stage
- 12.Are there clinical trials I could join, for example of Lenvatinib, Sunitinib, Pembrolizumab, KC1036?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “No randomised trials have ever been completed in thymic epithelial tumours”. How does that affect my plan?
- 16.I read that “Immunotherapy safety in a tumour that disturbs central tolerance”. How does that affect my plan?
The words I may hear
- Tumour mutational burden (TMB): How many mutations a tumour has.
- Immune-related adverse events (irAEs): Immune-related adverse events (irAEs) are the autoimmune side effects of checkpoint inhibitors: colitis, thyroid problems, rash, hepatitis, pneumonitis.
- Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.
Tests and results to bring
Biomarker results to ask for: WHO histotype and Masaoka-Koga / TNM stage, Completeness of resection (R0), Acetylcholine-receptor antibodies (myasthenia screening before surgery), GTF2I L424H (type A/AB thymoma), KIT mutation (thymic carcinoma subset), Octreotide scan positivity (somatostatin therapy).
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-III): Complete thymectomy (minimally invasive for small tumours) after myasthenia control; post-operative radiotherapy for stage III, R1/R2, or thymic carcinoma. (Robotic & minimally invasive surgery, IMRT / IGRT (modern external beam))
- Locally advanced unresectable: Induction chemotherapy (CAP or carboplatin-paclitaxel) then surgery if resectable, otherwise definitive radiotherapy ± chemotherapy. (Cisplatin, Doxorubicin, Cyclophosphamide, Carboplatin, Paclitaxel / nab-paclitaxel, IMRT / IGRT (modern external beam))
- Recurrent thymoma: Re-resection of pleural or local recurrence; chemotherapy; octreotide + prednisone if octreoscan-positive; everolimus. (Somatostatin analogues (octreotide, lanreotide), Everolimus)
- Recurrent thymic carcinoma: Sunitinib or lenvatinib (REMORA); pembrolizumab (with strict cardiac monitoring, not in thymoma); everolimus; KIT inhibitors for KIT-mutant disease. (Sunitinib, Lenvatinib, Pembrolizumab, Everolimus, Imatinib)
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