The first 60 days: Thyroid cancer
Thyroid cancer is usually curable with surgery and radioactive iodine, the original theranostic. Rare aggressive forms respond to RET and BRAF inhibitors. Below, week by week, is what OnCo's record of 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.
Ultrasound with TI-RADS; FNA only for nodules meeting size/appearance thresholds; Bethesda reporting; molecular classifier (Afirma, ThyroSeq) for indeterminate results.
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: Nodule work-up, Medullary, localised.
- RadiologistNamed in the standard of care for: Nodule work-up.
- SurgeonNamed in the standard of care for: Differentiated, Papillary microcarcinoma (≤1 cm, no spread), Low-risk differentiated (pT1-T2 N0), Intermediate/high-risk differentiated and 3 more.
- Medical oncologistNamed in the standard of care for: Advanced/refractory, Intermediate/high-risk differentiated, Radioiodine-refractory, progressive, Medullary, advanced progressive RET-mutant and 2 more.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Differentiated, Intermediate/high-risk differentiated, Anaplastic, BRAF V600E, Anaplastic, BRAF wild-type.
- Palliative and supportive care teamNamed in the standard of care for: Papillary microcarcinoma (≤1 cm, no spread), Anaplastic, BRAF wild-type.
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.
Total thyroidectomy with central neck dissection; prophylactic thyroidectomy in RET germline carriers by codon-based age; calcitonin surveillance.
Total thyroidectomy with therapeutic node dissection; radioiodine (1.1-3.7 GBq adjuvant; higher for known metastases) after recombinant TSH; TSH suppression.
Thyroidectomy ± radioactive iodine; TSH suppression.
Active surveillance or lobectomy; total thyroidectomy and radioiodine not indicated.
Lobectomy or total thyroidectomy; no radioiodine ablation (ESTIMABL2, IoN); modest TSH suppression then normal-range TSH.
Selpercatinib first line (LIBRETTO-531); cabozantinib or vandetanib if RET-selective therapy unavailable or failed.
Rapid BRAF testing; dabrafenib-trametinib (ROAR), often with pembrolizumab, then surgery and radiation if rendered resectable.
Multimodal chemoradiation (paclitaxel-based) if feasible; lenvatinib; immunotherapy for PD-L1-high or TMB-high; NTRK/RET/ALK agents if fusion-positive; early palliative care.
Lenvatinib; selpercatinib (RET); BRAF/MEK (anaplastic).
Genotype first: selpercatinib (RET fusion), larotrectinib/entrectinib (NTRK), dabrafenib-trametinib (BRAF V600E); otherwise lenvatinib (or sorafenib); consider MAPK-inhibitor redifferentiation to restore iodine uptake.
- 11.Survivorship
Lifelong levothyroxine with risk-adapted TSH targets; calcium/PTH monitoring after surgery; salivary care after radioiodine; low-risk patients can be discharged to primary care.
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 fusion/mutation, NTRK, RAS, TERT), 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 Papillary, Follicular, Oncocytic.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Differentiated
- For my situation (differentiated), which of the standard options do you recommend and why?Guideline options include: Thyroidectomy ± radioactive iodine; TSH suppression.
Advanced/refractory
- For my situation (advanced/refractory), which of the standard options do you recommend and why?Guideline options include: Lenvatinib; selpercatinib (RET); BRAF/MEK (anaplastic).
- Am I a candidate for Selpercatinib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Nodule work-up
- For my situation (nodule work-up), which of the standard options do you recommend and why?Guideline options include: Ultrasound with TI-RADS; FNA only for nodules meeting size/appearance thresholds; Bethesda reporting; molecular classifier (Afirma, ThyroSeq) for indeterminate results.
Papillary microcarcinoma (≤1 cm, no spread)
- For my situation (papillary microcarcinoma (≤1 cm, no spread)), which of the standard options do you recommend and why?Guideline options include: Active surveillance or lobectomy; total thyroidectomy and radioiodine not indicated.
Low-risk differentiated (pT1-T2 N0)
- For my situation (low-risk differentiated (pt1-t2 n0)), which of the standard options do you recommend and why?Guideline options include: Lobectomy or total thyroidectomy; no radioiodine ablation (ESTIMABL2, IoN); modest TSH suppression then normal-range TSH.
- How do the results of ESTIMABL2 and IoN apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Intermediate/high-risk differentiated
- For my situation (intermediate/high-risk differentiated), which of the standard options do you recommend and why?Guideline options include: Total thyroidectomy with therapeutic node dissection; radioiodine (1.1-3.7 GBq adjuvant; higher for known metastases) after recombinant TSH; TSH suppression.
- Am I a candidate for Radioactive iodine (I-131), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of HiLo apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Radioiodine-refractory, progressive
- For my situation (radioiodine-refractory, progressive), which of the standard options do you recommend and why?Guideline options include: Genotype first: selpercatinib (RET fusion), larotrectinib/entrectinib (NTRK), dabrafenib-trametinib (BRAF V600E); otherwise lenvatinib (or sorafenib); consider MAPK-inhibitor redifferentiation to restore iodine uptake.
- Am I a candidate for Selpercatinib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of SELECT and DECISION apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Medullary, localised
- For my situation (medullary, localised), which of the standard options do you recommend and why?Guideline options include: Total thyroidectomy with central neck dissection; prophylactic thyroidectomy in RET germline carriers by codon-based age; calcitonin surveillance.
Medullary, advanced progressive RET-mutant
- For my situation (medullary, advanced progressive ret-mutant), which of the standard options do you recommend and why?Guideline options include: Selpercatinib first line (LIBRETTO-531); cabozantinib or vandetanib if RET-selective therapy unavailable or failed.
- Am I a candidate for Selpercatinib, Vandetanib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of LIBRETTO-531 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Anaplastic, BRAF V600E
- For my situation (anaplastic, braf v600e), which of the standard options do you recommend and why?Guideline options include: Rapid BRAF testing; dabrafenib-trametinib (ROAR), often with pembrolizumab, then surgery and radiation if rendered resectable.
- Am I a candidate for Dabrafenib + trametinib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of ROAR (anaplastic thyroid cancer cohort) apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Anaplastic, BRAF wild-type
- For my situation (anaplastic, braf wild-type), which of the standard options do you recommend and why?Guideline options include: Multimodal chemoradiation (paclitaxel-based) if feasible; lenvatinib; immunotherapy for PD-L1-high or TMB-high; NTRK/RET/ALK agents if fusion-positive; early palliative care.
- Am I a candidate for Pembrolizumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Survivorship
- For my situation (survivorship), which of the standard options do you recommend and why?Guideline options include: Lifelong levothyroxine with risk-adapted TSH targets; calcium/PTH monitoring after surgery; salivary care after radioiodine; low-risk patients can be discharged to primary care.
Any stage
- Are there clinical trials I could join, for example of Selpercatinib, AL2846, JK08, BRAF/MEK plus PD-1 blockade as standard for BRAF-mutant anaplastic thyroid cancer?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 of microcarcinoma”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Anaplastic thyroid cancer: BRAF V600E cases now respond to dabrafenib-trametinib, often enough to allow surgery; the 60% without the mutation still have few options”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
- A Study of AL2846 Capsule Versus Placebo in the Treatment of Advanced Radioiodine-Refractory Differentiated Thyroid CarcinomaPhase 3 · recruiting · NCT06860971A Randomized, Double-Blind, Multicenter Phase III Clinical Trial Evaluating AL2846 Capsule Versus Placebo in Patients With Locally Advanced or Metastatic Radioiodine-Refractory Differentiated Thyroid Carcinoma Who Failed Prior VEGFR-Targeted Therapy
- A Study of Cabozantinib Compared With Placebo in Subjects With Radioiodine-refractory Differentiated Thyroid Cancer Who Have Progressed After Prior VaPhase 3 · active · NCT03690388A Phase 3, Randomized, Double-Blind, Placebo-Controlled Study of Cabozantinib (XL184) in Subjects With Radioiodine-Refractory Differentiated Thyroid Cancer Who Have Progressed After Prior Vascular Endothelial Growth Factor Receptor (VEGFR) -Targeted Therapy
- Study of Efficacy and Safety of Dabrafenib in Combination With Trametinib in Previously Treated Patients With Metastatic, Radio-active Iodine RefractoPhase 3 · active · NCT04940052A Randomized, Double-blind, Placebo-controlled Phase III Study to Evaluate the Efficacy and Safety of Dabrafenib Plus Trametinib in Previously Treated Patients With Locally Advanced or Metastatic, Radio-active Iodine Refractory BRAFV600E Mutation-positive Differentiated Thyroid Cancer (DTC)
- A Study of Selpercatinib (LY3527723) in Participants With Advanced Solid Tumors Including RET Fusion-positive Solid Tumors, Medullary Thyroid Cancer aPhase 2 · active · NCT04280081A Phase 2 Study of Oral Selpercatinib (LOXO-292) in Patients With Advanced Solid Tumors, Including Rearranged in Transfection (RET) Fusion-Positive Solid Tumors, Medullary Thyroid Cancer and Other Tumors With RET Activation
- APL-101 Study of Subjects With NSCLC With c-Met EXON 14 Skip Mutations and c-Met Dysregulation Advanced Solid TumorsPhase 2 · recruiting · NCT03175224Phase 1 / 2 Multicenter Study of the Safety, Pharmacokinetics, and Preliminary Efficacy of APL-101 in Subjects With Non-Small Cell Lung Cancer With c-Met EXON 14 Skip Mutations and c-Met Dysregulation Advanced Solid Tumors
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Thyroid cancer: the full pageThyroid cancer is usually curable with surgery and radioactive iodine, the original theranostic. Rare aggressive forms respond to RET and BRAF inhibitors.
- 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.
- Low-risk differentiated thyroid cancer (ATA risk): Small thyroid cancers confined to the gland with no spread.
- Radioiodine therapy (I-131): Swallowing a capsule of radioactive iodine after thyroid surgery: thyroid cells (including cancer cells) are the only ones that soak up iodine, so the radiation destroys leftover thyroid tissue and metastases while sparing everything else.
- Bethesda category (thyroid cytology): The Bethesda category is a six-step scale, from 'not enough cells' to 'cancer', that pathologists use to report a thyroid needle biopsy.
- Thyroidectomy: Removing all (total) or half (hemi-) of the thyroid gland, after which thyroid hormone tablets replace its function.
- TSH suppression: Giving slightly more thyroid hormone than the body needs after thyroid cancer surgery, to switch off the pituitary signal that could feed leftover cancer cells.
- Theranostics: Using the same targeting molecule for a diagnostic scan and a therapy, so you treat exactly what you can see.
- Radioiodine-refractory (RAI-R) thyroid cancer: Thyroid cancer that no longer takes up radioactive iodine, or keeps growing despite it.
- Tumour differentiation (well / moderately / poorly differentiated): How much the cancer cells still resemble the normal tissue they came from.
- Active surveillance and observation: Deliberately not treating a cancer yet, but checking it regularly with blood tests, scans or biopsies and treating only if it shows signs of progressing.
- TERT promoter mutation: A mutation that keeps the cell's immortality enzyme switched on.
Every term links to the glossary.