The first 60 days: Follicular thyroid cancer
Follicular thyroid cancer looks like a benign nodule on a needle biopsy, so the diagnosis is usually made only after surgery. It spreads through the bloodstream rather than to neck nodes, is treated like papillary cancer with surgery and radioactive iodine, and has a good outlook when caught early. Below, week by week, is what OnCo's record of Follicular 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: Indeterminate follicular nodule.
- SurgeonNamed in the standard of care for: Indeterminate follicular nodule, Minimally invasive, Widely invasive or metastatic.
- Medical oncologistNamed in the standard of care for: Widely invasive or metastatic, Iodine-refractory.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Widely invasive or metastatic.
- Palliative and supportive care teamNamed in the standard of care for: Widely invasive or metastatic.
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.
Molecular testing of the aspirate; diagnostic lobectomy when suspicious.
Lobectomy alone in most cases; completion surgery and iodine only for high-risk features.
Total thyroidectomy, radioactive iodine, TSH suppression; bone metastases may need surgery or radiotherapy.
Lenvatinib or sorafenib; clinical trials of redifferentiation.
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 RAS mutations, PAX8-PPARG fusion, TERT promoter mutation, Molecular tests on indeterminate aspirates, Thyroglobulin), 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 Minimally invasive, Encapsulated angioinvasive, Widely invasive.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Indeterminate follicular nodule
- For my situation (indeterminate follicular nodule), which of the standard options do you recommend and why?Guideline options include: Molecular testing of the aspirate; diagnostic lobectomy when suspicious.
Minimally invasive
- For my situation (minimally invasive), which of the standard options do you recommend and why?Guideline options include: Lobectomy alone in most cases; completion surgery and iodine only for high-risk features.
Widely invasive or metastatic
- For my situation (widely invasive or metastatic), which of the standard options do you recommend and why?Guideline options include: Total thyroidectomy, radioactive iodine, TSH suppression; bone metastases may need surgery or radiotherapy.
Iodine-refractory
- For my situation (iodine-refractory), which of the standard options do you recommend and why?Guideline options include: Lenvatinib or sorafenib; clinical trials of redifferentiation.
- Am I a candidate for Lenvatinib, Sorafenib, 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, Lenvatinib?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 “Telling adenoma from carcinoma without surgery”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Bone metastases respond poorly to 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.
- Follicular thyroid cancer: the full pageFollicular thyroid cancer looks like a benign nodule on a needle biopsy, so the diagnosis is usually made only after surgery. It spreads through the bloodstream rather than to neck nodes, is treated like papillary cancer with surgery and radioactive iodine, and has a good outlook when caught early.
- 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.