The first 60 days: Papillary thyroid cancer
Papillary thyroid cancer is the commonest and most curable thyroid cancer. Most people are treated with surgery, some with radioactive iodine afterwards, and many small tumours can simply be watched. Only the rare tumours that stop taking up iodine need targeted drugs. Below, week by week, is what OnCo's record of Papillary thyroid cancer says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Papillary microcarcinoma, Iodine-refractory advanced disease.
- RadiologistNamed in the standard of care for: Papillary microcarcinoma.
- SurgeonNamed in the standard of care for: Papillary microcarcinoma, Low risk, Intermediate and high risk.
- Medical oncologistNamed in the standard of care for: Iodine-refractory advanced disease.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Intermediate and high risk.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
- 1.Low risk
Lobectomy or total thyroidectomy without radioactive iodine (ESTIMABL2, IoN); levothyroxine and thyroglobulin follow-up.
Total thyroidectomy with neck dissection where nodes are involved, radioactive iodine ablation, TSH suppression.
Active surveillance with ultrasound or lobectomy; surveillance is safe in most adults after the Kuma Hospital and Memorial Sloan Kettering series.
Lenvatinib (SELECT) or sorafenib (DECISION); selpercatinib for RET fusions, larotrectinib or entrectinib for NTRK fusions, dabrafenib plus trametinib for BRAF V600E.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Classic papillary, Follicular variant, Tall cell, columnar and hobnail variants.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Papillary microcarcinoma
- For my situation (papillary microcarcinoma), which of the standard options do you recommend and why?Guideline options include: Active surveillance with ultrasound or lobectomy; surveillance is safe in most adults after the Kuma Hospital and Memorial Sloan Kettering series.
Low risk
- For my situation (low risk), which of the standard options do you recommend and why?Guideline options include: Lobectomy or total thyroidectomy without radioactive iodine (ESTIMABL2, IoN); levothyroxine and thyroglobulin follow-up.
Intermediate and high risk
- For my situation (intermediate and high risk), which of the standard options do you recommend and why?Guideline options include: Total thyroidectomy with neck dissection where nodes are involved, radioactive iodine ablation, TSH suppression.
Iodine-refractory advanced disease
- For my situation (iodine-refractory advanced disease), which of the standard options do you recommend and why?Guideline options include: Lenvatinib (SELECT) or sorafenib (DECISION); selpercatinib for RET fusions, larotrectinib or entrectinib for NTRK fusions, dabrafenib plus trametinib for BRAF V600E.
- Am I a candidate for Lenvatinib, Sorafenib, Selpercatinib or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Dabrafenib, Selpercatinib, Larotrectinib?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Overdiagnosis and overtreatment of small tumours found by imaging”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Which intermediate-risk patients truly benefit from radioactive iodine”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Papillary thyroid cancer: the full pagePapillary thyroid cancer is the commonest and most curable thyroid cancer. Most people are treated with surgery, some with radioactive iodine afterwards, and many small tumours can simply be watched. Only the rare tumours that stop taking up iodine need targeted drugs.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Radioiodine-refractory (RAI-R) thyroid cancer: Thyroid cancer that no longer takes up radioactive iodine, or keeps growing despite it.
Every term links to the glossary.