The first 60 days: Nasal cavity and paranasal sinus cancers (including esthesioneuroblastoma)
Cancers of the nose and sinuses are a mixed group, from squamous carcinoma to the nerve-derived esthesioneuroblastoma and the aggressive undifferentiated carcinoma SNUC. Surgery through the nose with an endoscope followed by precise radiotherapy has replaced disfiguring open operations, and giving chemotherapy first to see who responds now guides how SNUC is treated. Below, week by week, is what OnCo's record of Nasal cavity and paranasal sinus cancers (including esthesioneuroblastoma) 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: Unresectable or metastatic.
- SurgeonNamed in the standard of care for: Resectable squamous carcinoma, adenocarcinoma, esthesioneuroblastoma, Sinonasal undifferentiated carcinoma.
- Medical oncologistNamed in the standard of care for: Resectable squamous carcinoma, adenocarcinoma, esthesioneuroblastoma, Sinonasal undifferentiated carcinoma, Unresectable or metastatic.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Resectable squamous carcinoma, adenocarcinoma, esthesioneuroblastoma, Sinonasal undifferentiated carcinoma.
- Transplant and cell therapy teamNamed in the standard of care for: Sinonasal undifferentiated carcinoma.
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.Resectable squamous carcinoma, adenocarcinoma, esthesioneuroblastomaNCCN category Category 2A, NCCN Head and Neck Cancers (ethmoid and maxillary sinus tumours)
Endoscopic or cranioendoscopic resection with negative margins followed by IMRT or proton therapy for advanced stage, high grade or close margins; concurrent cisplatin for positive margins or nodal disease.
Platinum-based chemotherapy, and pembrolizumab or nivolumab per head and neck squamous indications for squamous histology; trials for IDH2-mutant SNUC (enasidenib) and SWI/SNF-deficient carcinoma.
Induction platinum-etoposide; responders proceed to definitive chemoradiotherapy, non-responders to surgery plus radiotherapy (response-adapted approach, JAMA Oncol 2019).
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 Histological subtype and Hyams grade, IDH2 R172 mutation, SMARCB1/SMARCA4 loss, NUT immunohistochemistry to exclude NUT carcinoma, HPV status), 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 Sinonasal squamous cell carcinoma, Intestinal-type adenocarcinoma, Esthesioneuroblastoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Resectable squamous carcinoma, adenocarcinoma, esthesioneuroblastoma
- For my situation (resectable squamous carcinoma, adenocarcinoma, esthesioneuroblastoma), which of the standard options do you recommend and why?Guideline options include: Endoscopic or cranioendoscopic resection with negative margins followed by IMRT or proton therapy for advanced stage, high grade or close margins; concurrent cisplatin for positive margins or nodal disease.
- Am I a candidate for Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Sinonasal undifferentiated carcinoma
- For my situation (sinonasal undifferentiated carcinoma), which of the standard options do you recommend and why?Guideline options include: Induction platinum-etoposide; responders proceed to definitive chemoradiotherapy, non-responders to surgery plus radiotherapy (response-adapted approach, JAMA Oncol 2019).
- Am I a candidate for Cisplatin, Etoposide, Platinum + etoposide (EP / CE), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Unresectable or metastatic
- For my situation (unresectable or metastatic), which of the standard options do you recommend and why?Guideline options include: Platinum-based chemotherapy, and pembrolizumab or nivolumab per head and neck squamous indications for squamous histology; trials for IDH2-mutant SNUC (enasidenib) and SWI/SNF-deficient carcinoma.
- Am I a candidate for Pembrolizumab, Nivolumab, Enasidenib, 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 Proton therapy, Enasidenib, Pembrolizumab?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 “Late presentation: most tumours are locally advanced at diagnosis; awareness in ENT clinics and imaging AI are the response”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “No randomised trials exist for any sinonasal histology; international consortia are pooling cases”. 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.
- Nasal cavity and paranasal sinus cancers (including esthesioneuroblastoma): the full pageCancers of the nose and sinuses are a mixed group, from squamous carcinoma to the nerve-derived esthesioneuroblastoma and the aggressive undifferentiated carcinoma SNUC. Surgery through the nose with an endoscope followed by precise radiotherapy has replaced disfiguring open operations, and giving chemotherapy first to see who responds now guides how SNUC is treated.
- 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.
- Head and neck subsites (oral cavity, oropharynx, larynx): Head and neck cancer is really several cancers named by exact location: mouth (oral cavity), back of the throat (oropharynx, where HPV cancers arise), voice box (larynx), lower throat (hypopharynx) and behind the nose (nasopharynx).
- HPV status (HPV-positive / HPV-negative): Whether a cancer is caused by human papillomavirus.
- Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.
Every term links to the glossary.