Newly diagnosed glioblastoma: what to do in the first two weeks

Why the first two weeks matter

Glioblastoma treatment follows a fixed sequence: surgery, then a pause of about three to six weeks for healing, then six weeks of radiotherapy with daily temozolomide, then monthly temozolomide. The pause after surgery is the only point where decisions about adding a trial, a vaccine or a second opinion can be made without interrupting anything. Most families spend it waiting. It is better spent collecting documents and asking questions, because once radiotherapy starts the calendar is set for months.

Collect five documents

1. The operative report, stating how much of the tumor was removed (gross total, near total or partial resection). Extent of resection is one of the strongest prognostic factors.
2. The pathology report with the WHO 2021 diagnosis and the molecular results: IDH status, MGMT promoter methylation, and often EGFR, TERT, CDKN2A/B. If molecular tests are "pending", ask when they will be back and who will call you.
3. The post-operative MRI, done within 48 to 72 hours of surgery, with the images on disc and the radiologist's report. This is the baseline against which every later scan is compared.
4. The pre-operative MRI, for the same reason.
5. The discharge summary and medication list, including the steroid dose and any anti-seizure drug.

Ask for digital copies of everything. Hospitals must give them to you, and every second opinion, trial and foreign program will ask for the same five documents.

Make sure tumor tissue is stored

Pathology labs keep tumor tissue in paraffin blocks for years, and that is enough for sequencing-based tests and for most second opinions. Some treatments, including lysate-based dendritic-cell vaccines, need fresh tumor tissue frozen at the time of surgery; if it was not frozen, those treatments may not be possible later. Ask the pathology department two questions in writing: how much tissue is stored, and in what form. If a second operation is ever planned, ask beforehand that tissue be frozen as well as fixed.

Ask the team for the plan in writing

A good neuro-oncology team can give you a one-page calendar: when radiotherapy starts and ends, the temozolomide schedule, the dates of the first follow-up MRI, and who to call for seizures, headaches or steroid side effects. Ask whether tumor-treating fields (TTFields) will be offered after radiotherapy, since it is part of standard care in many countries but not offered everywhere. Ask what the team would do at the first sign of recurrence, so you know the options before you need them.

Get a second opinion, and look at what can be added

A second opinion from a dedicated neuro-oncology center is normal and does not offend your doctors. Many centers review records remotely within a week. Use the same week to look at two other things: clinical trials you might be eligible for, which usually require enrollment before or at the start of radiotherapy, and authorized programs abroad that add a treatment to standard care. Both have eligibility windows tied to the start of chemoradiation, which is why the question has to be asked now rather than after it.

If you are considering treatment abroad, send the five documents for a records review before deciding anything. A serious program will tell you in writing whether you qualify, what it would add to your standard treatment, when it would have to start, and what it costs. See our guide to questions to ask any provider abroad.

What not to do

• Do not stop or delay standard treatment to pursue an unproven option. Everything credible, including our own program, is added to standard care, not substituted for it.
• Do not rely on survival statistics from search results. They describe populations, not you, and most are a decade old. See how to read treatment numbers.
• Do not pay anyone before you have a written plan and a written estimate.

Questions families ask

Related guides

• Reading your pathology report: IDH, MGMT and the WHO 2021 classification
• Standard treatment for glioblastoma explained: surgery, radiotherapy, temozolomide and TTFields
• Twelve questions to ask before glioblastoma treatment abroad

Sources

1. NCCN Guidelines for Patients: Brain Cancer, Gliomas (2026) nccn.org
2. American Brain Tumor Association: Glioblastoma abta.org
3. Stupp R, et al. Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. NEJM 2005 doi.org