Appointment sheet
Thyroid cancer
Prepared with OnCo (onco.cc/prep/thyroid/). 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
32 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 fusion/mutation, NTRK, RAS, TERT), 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?
Differentiated
- 5.For my situation (differentiated), which of the standard options do you recommend and why?
Advanced/refractory
- 6.For my situation (advanced/refractory), which of the standard options do you recommend and why?
- 7.Am I a candidate for Selpercatinib, and what side effects should I expect?
Nodule work-up
- 8.For my situation (nodule work-up), which of the standard options do you recommend and why?
Papillary microcarcinoma (≤1 cm, no spread)
- 9.For my situation (papillary microcarcinoma (≤1 cm, no spread)), which of the standard options do you recommend and why?
Low-risk differentiated (pT1-T2 N0)
- 10.For my situation (low-risk differentiated (pt1-t2 n0)), which of the standard options do you recommend and why?
- 11.How do the results of ESTIMABL2 and IoN apply to someone like me?
Intermediate/high-risk differentiated
- 12.For my situation (intermediate/high-risk differentiated), which of the standard options do you recommend and why?
- 13.Am I a candidate for Radioactive iodine (I-131), and what side effects should I expect?
- 14.How do the results of HiLo apply to someone like me?
Radioiodine-refractory, progressive
- 15.For my situation (radioiodine-refractory, progressive), which of the standard options do you recommend and why?
- 16.Am I a candidate for Selpercatinib, and what side effects should I expect?
- 17.How do the results of SELECT and DECISION apply to someone like me?
Medullary, localised
- 18.For my situation (medullary, localised), which of the standard options do you recommend and why?
Medullary, advanced progressive RET-mutant
- 19.For my situation (medullary, advanced progressive ret-mutant), which of the standard options do you recommend and why?
- 20.Am I a candidate for Selpercatinib, Vandetanib, and what side effects should I expect?
- 21.How do the results of LIBRETTO-531 apply to someone like me?
Anaplastic, BRAF V600E
- 22.For my situation (anaplastic, braf v600e), which of the standard options do you recommend and why?
- 23.Am I a candidate for Dabrafenib + trametinib, and what side effects should I expect?
- 24.How do the results of ROAR (anaplastic thyroid cancer cohort) apply to someone like me?
Anaplastic, BRAF wild-type
- 25.For my situation (anaplastic, braf wild-type), which of the standard options do you recommend and why?
- 26.Am I a candidate for Pembrolizumab, and what side effects should I expect?
Survivorship
- 27.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
- 28.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?
- 29.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 30.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 31.I read that “Overdiagnosis of microcarcinoma”. How does that affect my plan?
- 32.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?
The words I may hear
- 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.
Tests and results to bring
Nodule work-up: Ultrasound with TI-RADS; FNA only for nodules meeting size/appearance thresholds; Bethesda reporting; molecular classifier (Afirma, ThyroSeq) for indeterminate results.
Biomarker results to ask for: BRAF V600E, RET fusion/mutation, NTRK, RAS, TERT, Thyroglobulin and anti-Tg antibodies (surveillance of differentiated cancer), Calcitonin and CEA (medullary), Germline RET (MEN2 screening, prophylactic thyroidectomy), Somatic RET fusion/mutation (selpercatinib), BRAF V600E (prognosis; anaplastic targeted therapy; redifferentiation), TERT promoter (aggressiveness), NTRK, ALK fusions (tumour-agnostic drugs), Bethesda cytology category and molecular classifier result, Radioiodine avidity on diagnostic scan.
Scans and tests linked to this cancer: Comprehensive genomic profiling, Germline (hereditary) testing, Serum tumour markers: proper use and misuse, SPECT/CT, Thyroglobulin, calcitonin and CEA in thyroid cancer follow-up, Thyroid nodule FNA, Bethesda cytology & molecular classifiers.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Medullary, localised: Total thyroidectomy with central neck dissection; prophylactic thyroidectomy in RET germline carriers by codon-based age; calcitonin surveillance. (RET, Germline (hereditary) testing)
- Intermediate/high-risk differentiated: Total thyroidectomy with therapeutic node dissection; radioiodine (1.1-3.7 GBq adjuvant; higher for known metastases) after recombinant TSH; TSH suppression. (Radioactive iodine (I-131), Radioiodine therapy and whole-body iodine scanning, HiLo)
- Differentiated: Thyroidectomy ± radioactive iodine; TSH suppression. (Radioligand therapy (beta emitters))
- Papillary microcarcinoma (≤1 cm, no spread): Active surveillance or lobectomy; total thyroidectomy and radioiodine not indicated. (Active surveillance of papillary microcarcinoma, Ultrasound restraint and surveillance to reverse thyroid cancer overdiagnosis)
- Low-risk differentiated (pT1-T2 N0): Lobectomy or total thyroidectomy; no radioiodine ablation (ESTIMABL2, IoN); modest TSH suppression then normal-range TSH. (ESTIMABL2, IoN, Low-risk differentiated thyroid cancer (ATA risk), TSH suppression)
- Medullary, advanced progressive RET-mutant: Selpercatinib first line (LIBRETTO-531); cabozantinib or vandetanib if RET-selective therapy unavailable or failed. (LIBRETTO-531, Selpercatinib, Vandetanib)
- Anaplastic, BRAF V600E: Rapid BRAF testing; dabrafenib-trametinib (ROAR), often with pembrolizumab, then surgery and radiation if rendered resectable. (ROAR (anaplastic thyroid cancer cohort), Dabrafenib + trametinib, BRAF/MEK inhibition → surgery in anaplastic thyroid cancer, BRAF/MEK plus PD-1 blockade as standard for BRAF-mutant anaplastic thyroid cancer)
- Anaplastic, BRAF wild-type: 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. (IMRT / IGRT (modern external beam), Pembrolizumab)
- Advanced/refractory: Lenvatinib; selpercatinib (RET); BRAF/MEK (anaplastic). (Selpercatinib)
- Radioiodine-refractory, progressive: Genotype first: selpercatinib (RET fusion), larotrectinib/entrectinib (NTRK), dabrafenib-trametinib (BRAF V600E); otherwise lenvatinib (or sorafenib); consider MAPK-inhibitor redifferentiation to restore iodine uptake. (SELECT, DECISION, Selpercatinib, MAPK inhibitor redifferentiation → radioiodine, Radioiodine-refractory (RAI-R) thyroid cancer)
- 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. (TSH suppression, Supportive Care & Survivorship)
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