A family guide after a brain tumour diagnosis

If you are reading this, you have probably heard news that has changed your family’s world. Fear, confusion and even numbness are normal in these days. You do not have to understand or decide everything today. This page only wants to light the way a little.

First: “tumour” does not always mean the same thing

A brain tumour is a lump of cells that have grown more than they should. Tumours are graded: grades 1 and 2 are usually benign and slow growing, and grades 3 and 4 are malignant. Some tumours start in the brain itself and some have reached the brain from elsewhere in the body.

The type and grade of a tumour can usually be stated with confidence only after a sample has been examined and a pathologist has given an opinion. Until then, guessing and searching the internet bring more fear than answers. It is better to keep your questions for the surgeon and the treatment team.

What do we do in the first days?

• Keep the reports and images. Keep the MRI and CT discs or films, the radiology report and the hospital file in one folder and take them with you.
• Choose one person to be in touch with the treatment team. When several people call every day, information gets lost. The rest of the family can get news from that person.
• Write the questions down. At a visit, fear makes us forget. A notebook or a note on a phone is enough.
• Go to the visit with the patient. Two people hear better. You can ask the surgeon to repeat the explanation simply or to write it down.
• Do not rush, but know the emergency signs. They are further down this page.

Questions you can ask the surgeon

About the diagnosis:

• What type of tumour is it? Is a biopsy needed to be sure?
• What other tests or scans are needed? When will the result be known?

About treatment:

• What are the treatment options? Does treatment need to start straight away, or can we watch for now? (Some slow-growing benign tumours are followed only with check-ups.)
• If an operation is suggested: what is its aim? How much of the tumour will be removed? What are the risks? Which abilities (speech, movement, vision, memory) are at risk?
• Is radiotherapy or chemotherapy needed? What are their side effects?
• What documents do we need to get a second opinion?

About daily life:

• What help will the patient need at home? Is it a problem for them to be alone?
• What about driving, work and physical activity?
• Which symptoms should we report at once? To which number?
• What follow-up and scans are needed after treatment?
• Could rehabilitation, speech therapy, occupational therapy or counselling help?

If you did not understand an answer, say “Could you explain that more simply?”. It is your right.

What we do not say

On this page we give no figures or percentages about survival or success. The outlook also depends on age, type of tumour, its place, the effect of treatment and general health, and is hard to predict for each patient. General figures about large groups say nothing exact about your patient. It is better to raise this with the surgeon and the treatment team, and ask what you want to know and when.

How do we be there for the patient?

• Listen. You do not have to have an answer every time. Sometimes it is enough for someone to sit beside them.
• Do not hide your own fear, but do not put its weight on the patient. Talk to the rest of the family, a friend or a counsellor.
• Make decisions with the patient, not for them, as far as they are able.
• Keep the daily routine simple and calm. Heavy tiredness is among the possible effects. Resting as much as needed is fine.
• Do not take changes of mood or behaviour personally. Changes in mood and personality can be symptoms of a tumour or effects of treatment. If you see them, tell the team; the patient is not to blame.
• Safety at home: if the patient has seizures or poor balance, ask the treatment team what precautions are needed.

Looking after yourself

Caring for a patient is long and hard. Do not forget your own sleep, food and rest. Share the shifts between several people and ask for help. If you feel sad, anxious or hopeless, say so. Psychological counselling is among the support available after treatment. Ask the treatment team what support and counselling are available, for the patient and for you.

After the operation

After an operation there may be headache, numbness around the wound, tiredness, and trouble concentrating or remembering. Recovery takes time and follow-up is needed (for a benign tumour, at least several years). Read the page “The first days after brain surgery”.

Signs that cannot wait

Call 115 or go to an emergency department (115 is Iran’s emergency number) if the patient:

• has a sudden, very severe headache
• is having their first seizure, or a seizure that is longer than usual or has lasted more than 5 minutes
• was seriously hurt in a seizure
• has passed out and is not waking, or is finding it hard to breathe
• has sudden weakness on one side of the body, a drooping face or slurred speech

Contact the treatment team the same day if headaches are getting worse or constant, nausea or drowsiness will not go, their vision changes, or they have had vomiting for more than two days. After an operation: a worsening headache, a stiff neck, discharge from the wound or a fever. If you cannot reach the team, call 115. If, after an operation, there is new weakness, new trouble speaking, a seizure or fainting (if they have not had one before) or marked drowsiness, call 115 at once. The full list is in “When should I call urgently?”.

Where does the support team help?

In the support form of Dr. Allahyari, the patient support team lists services that can help with transport, coordinating scans and tests, care after surgery, home nursing and physiotherapy, and psychological counselling. Each has its own conditions; the list and contact numbers are on the “Support” page. To get in touch, the support number for patients in Iran is 09302272111, and for patients abroad it is +989302272111.

This team does not make medical decisions. Its job is to make the path easier, not to take the place of the surgeon.