The first 60 days: Medullary thyroid cancer
Medullary thyroid cancer comes from the calcitonin-making C cells, not the thyroid hormone cells, so radioactive iodine does not work. Surgery is the only cure, a quarter of cases run in families through the RET gene, and the RET-selective drug selpercatinib has transformed treatment of advanced disease. Below, week by week, is what OnCo's record of Medullary 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.
- SurgeonNamed in the standard of care for: Hereditary RET carriers, Localised disease.
- Medical oncologistNamed in the standard of care for: Advanced RET-mutant disease, Advanced RET-negative disease.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Advanced RET-negative disease.
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 compartment dissection, lateral dissection when nodes are involved; no radioactive iodine; levothyroxine replacement only.
Prophylactic total thyroidectomy in childhood, timed by the RET codon risk category (before age one in MEN2B).
Selpercatinib first line (LIBRETTO-531 beat cabozantinib and vandetanib); pralsetinib as an alternative.
Cabozantinib or vandetanib; external radiotherapy for local control; somatostatin analogues for diarrhoea from calcitonin.
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 Calcitonin and CEA, Germline RET testing in every patient, Somatic RET M918T, RAS mutations in RET-negative tumours), 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 Sporadic, Hereditary: MEN2A, Hereditary: MEN2B.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Hereditary RET carriers
- For my situation (hereditary ret carriers), which of the standard options do you recommend and why?Guideline options include: Prophylactic total thyroidectomy in childhood, timed by the RET codon risk category (before age one in MEN2B).
Localised disease
- For my situation (localised disease), which of the standard options do you recommend and why?Guideline options include: Total thyroidectomy with central compartment dissection, lateral dissection when nodes are involved; no radioactive iodine; levothyroxine replacement only.
Advanced RET-mutant disease
- For my situation (advanced ret-mutant disease), which of the standard options do you recommend and why?Guideline options include: Selpercatinib first line (LIBRETTO-531 beat cabozantinib and vandetanib); pralsetinib as an alternative.
- Am I a candidate for Selpercatinib, Pralsetinib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Advanced RET-negative disease
- For my situation (advanced ret-negative disease), which of the standard options do you recommend and why?Guideline options include: Cabozantinib or vandetanib; external radiotherapy for local control; somatostatin analogues for diarrhoea from calcitonin.
- Am I a candidate for Cabozantinib, Vandetanib, 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 Selpercatinib?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 “No cure once the disease has spread beyond the neck”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Resistance mutations to RET inhibitors (G810) are emerging”. 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.
- Medullary thyroid cancer: the full pageMedullary thyroid cancer comes from the calcitonin-making C cells, not the thyroid hormone cells, so radioactive iodine does not work. Surgery is the only cure, a quarter of cases run in families through the RET gene, and the RET-selective drug selpercatinib has transformed treatment of advanced disease.
- 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.