Appointment sheet
Papillary thyroid cancer
Prepared with OnCo (onco.cc/prep/papillary-thyroid-cancer/). 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
14 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 BRAF V600E, RET and NTRK fusions, TERT promoter mutation, Thyroglobulin after surgery, ATA risk category), 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?
Papillary microcarcinoma
- 5.For my situation (papillary microcarcinoma), which of the standard options do you recommend and why?
Low risk
- 6.For my situation (low risk), which of the standard options do you recommend and why?
Intermediate and high risk
- 7.For my situation (intermediate and high risk), which of the standard options do you recommend and why?
Iodine-refractory advanced disease
- 8.For my situation (iodine-refractory advanced disease), which of the standard options do you recommend and why?
- 9.Am I a candidate for Lenvatinib, Sorafenib, Selpercatinib or related drugs, and what side effects should I expect?
Any stage
- 10.Are there clinical trials I could join, for example of Dabrafenib, Selpercatinib, Larotrectinib?
- 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 13.I read that “Overdiagnosis and overtreatment of small tumours found by imaging”. How does that affect my plan?
- 14.I read that “Which intermediate-risk patients truly benefit from radioactive iodine”. How does that affect my plan?
The words I may hear
- Radioiodine-refractory (RAI-R) thyroid cancer: Thyroid cancer that no longer takes up radioactive iodine, or keeps growing despite it.
Tests and results to bring
Biomarker results to ask for: BRAF V600E (about 60 percent), RET and NTRK fusions, TERT promoter mutation (worse outlook, especially with BRAF), Thyroglobulin after surgery, ATA risk category (low, intermediate, high).
Scans and tests linked to this cancer: Active surveillance, Comprehensive genomic profiling, Thyroglobulin, calcitonin and CEA in thyroid cancer follow-up.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Low risk: Lobectomy or total thyroidectomy without radioactive iodine (ESTIMABL2, IoN); levothyroxine and thyroglobulin follow-up. (Thyroid cancer)
- Intermediate and high risk: Total thyroidectomy with neck dissection where nodes are involved, radioactive iodine ablation, TSH suppression. (Radioiodine therapy and whole-body iodine scanning, TSH receptor (TSHR))
- Papillary microcarcinoma: Active surveillance with ultrasound or lobectomy; surveillance is safe in most adults after the Kuma Hospital and Memorial Sloan Kettering series. (Active surveillance)
- Iodine-refractory advanced disease: Lenvatinib (SELECT) or sorafenib (DECISION); selpercatinib for RET fusions, larotrectinib or entrectinib for NTRK fusions, dabrafenib plus trametinib for BRAF V600E. (Lenvatinib, Sorafenib, Selpercatinib, Larotrectinib, Entrectinib, Dabrafenib, Trametinib, Radioiodine-refractory (RAI-R) thyroid cancer)
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