Your Brain Tumour Team

Your Brain Tumour Team

A checklist to help you in these first few days and weeks after diagnosis:

Your GP: You will need to have a professional central to your situation who can monitor your progress and refer you to the different professionals who will help you on your journey. These may be one or two, or all, of the following:

A Neurosurgeon will be referred by your GP or your hospital if you are to have surgery.

A Neurologist: You may find you have seizures/convulsions*, or headaches. A neurologist will help you with both. You may also need help with anxiety, insomnia, swelling, or anaemia.  There are many kinds of seizures [epilepsy] and multiple medications to treat them. It may take time and experimentation to find a medication ideally suited to you and your type of seizures & condition.

Do note down any medication you are prescribed [purpose, dosage, & dates prescribed]. It is also advisable, if you have seizures, to wear a medical alert bracelet or necklet so that helpers/professionals can immediately know what is happening.

Taking notes during appointments can be a help. You can take someone else with you to make notes and even consider using a tape-recorder, as long as the professionals know you are recording them.  You may be weary and you may be confused by all the new information coming your way. This will help.

An Oncologist may be needed to describe for you the nature of your tumour, and to advise you on the best treatment plan going forward.

A Pathologist will have played a role in determining the nature and type of your tumour.

A Radiation/Radiotherapy Oncologist will be referred, possibly by your oncologist in the event that you are recommended to have radiation therapy.

A Brain Tumour Care Coordinator: If you are fortunate you may meet a specialist, or be at a hospital, where there is a specialist nurse in the ‘neuro team’ to help you along the tumour path. Do ask about this as it is not always mentioned.

Make sure you have contact details for all the above and know to whom you can refer questions so you can be sure your questions will be heard and answered.

Complementary Specialists/Allied Health Professionals: these can all help you with optimising your ongoing mental and physical health after a brain tumour diagnosis:

A Psychotherapist/ Psychologist: You will be taking in a lot of new information and your life has turned a big corner. You may want to chat to a professional to help ease you through the hard times.

It is vital that you do not face everything alone. Call on family and friends for help if you need it…they will be keen to help but will not know how.  They can perhaps help with preparing meals, school runs, shopping, laundry etc

A Social Worker may also be available if you stay in hospital; or your GP may help you find one.

An Exercise Physiologist, Physiotherapist, Occupational Or Speech Therapist:
To help you plan to be the strongest and fittest you can be as you may need help getting back on your feet after surgery.

Tips to aid communication with your Medical Team

The management of low-grade gliomas requires access to a medical team consisting of doctors, neuro-oncology nurses, nutritionists and physiotherapists amongst others.  This team may change as your needs change, and will include professionals with the combined expertise and experience to give you the best treatment.

Taking an active role in your health care requires good communication in order to get the best possible care.  You are the most knowledgeable member of your medical team when it comes to your body, and you can avoid potential complications by keeping your team informed of harmful side effects and neurological symptoms you may experience.  Every encounter you have with your health providers has an impact on your care – for better or worse.  The following tips may prove useful to aid communication:

Write down any questions, thoughts or queries you may have In advance.  Do not be shy about voicing any concerns or neurological symptoms you wish to discuss.Don’t wait until the end of the visit to address the most important issues.

Keep your medical team informed of any changes to your health and tell your doctor about any other medication you are taking including prescriptions, over-the-counter medicines and dietary supplements such as vitamins and herbs or of any other complementary treatments you may be receiving.

Think about whether you want to take a “leave no stone unturned” approach or do you want to avoid rigorous brain cancer treatment to preserve quality of life? Do not assume your doctors know your goals and preferences.

If you don’t understand anything, ask for clarification…without the medical jargon. Ask for written information if there is that option.

Questions to ask yourself: Do you understand your condition? Do you need more information about possible risks and benefits of proposed treatments.  Do you understand the full range of treatment options?  What exactly are your doctors planning to do and how?  What side effects or neurological symptoms, if any, are you likely to have?