The first 60 days: Vestibular schwannoma (acoustic neuroma)
A vestibular schwannoma is a benign growth on the balance and hearing nerve, deep in the skull. It is rarely dangerous, so many are simply watched with scans; growing tumours are treated with either an operation or a single precisely focused dose of radiation, and people with the inherited condition NF2, who develop tumours on both sides, can be helped by the drug bevacizumab. Below, week by week, is what OnCo's record of Vestibular schwannoma (acoustic neuroma) 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: Small tumour, stable or good hearing.
- RadiologistNamed in the standard of care for: Small tumour, stable or good hearing, Large tumour with brainstem compression or hydrocephalus.
- SurgeonNamed in the standard of care for: Small tumour, stable or good hearing, Large tumour with brainstem compression or hydrocephalus, NF2-related schwannomatosis, progressive tumour or falling hearing.
- Medical oncologistNamed in the standard of care for: Growing small or medium tumour, NF2-related schwannomatosis, progressive tumour or falling hearing.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Growing small or medium tumour, Large tumour with brainstem compression or hydrocephalus.
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.
Observation with MRI and audiometry, typically yearly; treatment on documented growth or hearing decline.
Stereotactic radiosurgery (Gamma Knife, CyberKnife or linac) at about 12 to 13 Gy, or fractionated stereotactic radiotherapy; microsurgery in younger patients or by preference.
- 3.Large tumour with brainstem compression or hydrocephalusNCCN Guidelines: Central Nervous System Cancers
Microsurgical resection with facial nerve monitoring, sometimes deliberately subtotal followed by radiosurgery to the remnant; shunting for hydrocephalus.
Bevacizumab (off label, phase 2 evidence) to shrink tumours and improve hearing; brigatinib on INTUITT-NF2 evidence; hearing rehabilitation with cochlear or auditory brainstem implants; surgery and radiosurgery used selectively.
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 Tumour size and growth on serial MRI, Pure-tone audiometry and word recognition, Germline NF2 testing when bilateral, young or with other schwannomas or meningiomas, Facial nerve functionbefore and after treatment), 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 unilateral vestibular schwannoma, NF2-related schwannomatosis with bilateral vestibular schwannoma, Intracanalicular schwannoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Small tumour, stable or good hearing
- For my situation (small tumour, stable or good hearing), which of the standard options do you recommend and why?Guideline options include: Observation with MRI and audiometry, typically yearly; treatment on documented growth or hearing decline.
Growing small or medium tumour
- For my situation (growing small or medium tumour), which of the standard options do you recommend and why?Guideline options include: Stereotactic radiosurgery (Gamma Knife, CyberKnife or linac) at about 12 to 13 Gy, or fractionated stereotactic radiotherapy; microsurgery in younger patients or by preference.
Large tumour with brainstem compression or hydrocephalus
- For my situation (large tumour with brainstem compression or hydrocephalus), which of the standard options do you recommend and why?Guideline options include: Microsurgical resection with facial nerve monitoring, sometimes deliberately subtotal followed by radiosurgery to the remnant; shunting for hydrocephalus.
NF2-related schwannomatosis, progressive tumour or falling hearing
- For my situation (nf2-related schwannomatosis, progressive tumour or falling hearing), which of the standard options do you recommend and why?Guideline options include: Bevacizumab (off label, phase 2 evidence) to shrink tumours and improve hearing; brigatinib on INTUITT-NF2 evidence; hearing rehabilitation with cochlear or auditory brainstem implants; surgery and radiosurgery used selectively.
- Am I a candidate for Bevacizumab, Brigatinib, 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 Brigatinib, Bevacizumab, Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS)?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 approved drug for NF2-related schwannomatosis; bevacizumab is off label and its effect wanes”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Predicting which small tumours will grow, so that the rest can be left alone”. 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.
- Vestibular schwannoma (acoustic neuroma): the full pageA vestibular schwannoma is a benign growth on the balance and hearing nerve, deep in the skull. It is rarely dangerous, so many are simply watched with scans; growing tumours are treated with either an operation or a single precisely focused dose of radiation, and people with the inherited condition NF2, who develop tumours on both sides, can be helped by the drug bevacizumab.
- 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.
- Stereotactic radiosurgery (SRS): A single high dose of radiation delivered to a brain tumour or metastasis by beams converging from all sides, so the target gets a destructive dose while the surrounding brain gets little; no scalpel is involved despite the name.
Every term links to the glossary.