Brain tumors Recurrence: What to Ask

This page is for adults whose brain tumor may have come back. It explains what a new spot on a scan can mean, the treatment routes, and what to ask your team.

Your team saw something new on the MRI. That is not yet proof the tumor is back.

The NCI summary for adult brain and spinal cord tumors is direct. Tumors that return inside the brain are rarely cured. The summary says people in this position should look at clinical trials early rather than last.

Rarely cured is not the same as nothing to do. The same summary lists four routes for a tumor that comes back. They are surgery, radiation, chemotherapy, and drugs that block new blood vessels.

Radiation can leave changes that glow on a scan much like a tumor does. Doctors call this radiation necrosis, which means tissue killed by radiation.

The NCI page says SPECT and PET scans may be useful in telling one from the other. It also calls biopsy confirmation of a suspected primary brain tumor critical, except when a tumor is clearly benign. Ask your team whether a biopsy is needed in your case, and what it would change.

The answer also depends on which tumor you have. Ask your neuro-oncologist to answer for your exact diagnosis rather than for brain tumors in general.

Ask which route your team plans to take. Ask how long the answer will take.

Taking out a returning tumor is an option for some people. NCI says most people do not qualify, because of a declining condition or a tumor that cannot be operated on safely.

Temozolomide, lomustine, and the PCV combination all appear in the NCI summary for tumors that come back. NCI says they are used in people who have not had the drugs before. NCI also says this approach has not been tested in controlled studies.

So write down what you have already taken, and how much. That list shapes the next choice.

Carmustine wafers placed during surgery have been studied here too. The NCI page notes that experts read the same trial in different ways.

Some centers give radiation again to a spot already treated. The NCI summary says the evidence is thin. It comes from small case series, not trials.

NCI says the decision must be made carefully because of the risk of thinking and memory problems and radiation necrosis.

• Is this regrowth, or could it be radiation change?
• Would a PET or SPECT scan answer that, or do I need a biopsy?
• Am I someone who could have an operation again?
• Which of these drugs have I already had?
• How much radiation has this part of my brain had?
• Should new tissue be tested for IDH, 1p/19q and MGMT?
• Which trial should I look at now, not later?

Ask for the plan in writing before you leave. Ask which decision is urgent and which can wait a week.

• Call 911 or go to the nearest emergency department if a seizure is the first one the person has ever had, or lasts more than 2 to 5 minutes. Do the same if the person does not wake up or return to normal behavior afterward, or if a second seizure starts before they have fully recovered. Do the same if anything about the seizure is different from their usual seizures (MedlinePlus).
• Call 911 right away for sudden numbness or weakness in the face, arm or leg, sudden trouble speaking or understanding speech, sudden trouble seeing, walking or keeping balance, or a sudden severe headache with no known cause (CDC). Call 911 for sudden confusion, or confusion for the first time with no known reason (MedlinePlus). Do not drive yourself.
• If you are on chemotherapy or have low white blood cells, call your care team right away, day or night, for a temperature of 100.4°F (38°C) or higher, chills, sore throat, mouth sores, burning when you urinate, or any other sign of infection, even without a fever. A normal temperature is not a reason to wait. NCI says infections during cancer treatment can be life threatening.
• Call your care team right away, at any hour, if your seizures are coming more often than before or have started again after a long quiet spell, or if doses of your anti-seizure medicine have been missed or cannot be kept down. Call right away, too, for new drowsiness or confusion that builds gradually. MedlinePlus says to contact your provider about more frequent seizures, and to check with them about any dose missed for more than a few hours (MedlinePlus).
• Call your care team the same day for a headache that is worst on waking and comes with vomiting, or for balance, vision or memory that has slipped over recent days. MedlinePlus lists new weakness, vision problems or balance problems as reasons to contact your provider.
• Call your care team within a day or two if you are having trouble taking your anti-seizure medicine as prescribed for other reasons, such as side effects. If doses are actually being missed, call right away instead, as above.

Cancer Staging and Biomarker Testing explain the terms that come up most when a brain tumor comes back. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor cover the decisions that follow a brain tumor recurrence.

These questions were drawn from current NCI guidance for brain tumor (adult glioma):

• NCI PDQ — Adult Central Nervous System Tumors Treatment (Health Professional Version)
• NCI PDQ — Adult Central Nervous System Tumors Treatment (Patient Version)
• American Cancer Society — Treating Brain and Spinal Cord Tumors in Adults
• MedlinePlus — Epilepsy or seizures, discharge
• CDC — Signs and Symptoms of Stroke
• NCI — Infection and Neutropenia During Cancer Treatment