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
- Superior vena cava obstruction: A tumour or clot blocks the large vein that returns blood from the head and arms to the heart, so the face, neck and arms swell and the veins on the chest stand out.
- Immune-related adverse events (irAEs): Immune-related adverse events (irAEs) are the autoimmune side effects of checkpoint inhibitors: colitis, thyroid problems, rash, hepatitis, pneumonitis.
- Tumour mutational burden (TMB): How many mutations a tumour has.
- 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