FAQs (BTAA Committee Discussion & Comments Page)

Questions posted by BTAA Committee Members are presented as Comments on the left, with responses, or Answers, presented as Replies. To add an FAQs question simply make a comment at the bottom of the page. To reply to either a comment or to a reply use the Reply button alongside the applicable response.


43 Comments

  1. Stephen

    What are my options if I do not want to have surgery?

    Reply
    • Denis

      It depends on what type of brain tumour you have. For many newly diagnosed patients the answer might be “No surgery might mean a poor prognosis”. Or, “If a resection is not available because of the location of the brain tumour a biopsy is desirable so that the type of brain tumour can be determined”.

      Reply
  2. Stephen

    Where can I find a support group in my area?

    Reply
    • Steve

      BTAA provides a comprehensive directory of support groups across Australia. If you can’t find one close to you, contact BTAA and we may be able to help you.

      Reply
  3. Julia

    What are common symptoms?

    Reply
    • Steve

      Symptoms can also include Vertigo, slowness of speech, difficulty holding things, and lack of sleep.

      Reply
    • Denis

      They can vary but can include seizures and deficits which involve speech, expression and mobility.

      Reply
  4. Julia

    What should I expect after surgery?

    Reply
    • Denis

      Depending on the type of brain tumour you have, it might involve radiation therapy and/or chemotherapy but for some brain tumours this approach is unsuitable.

      Reply
    • Steve

      You should receive an intense period of physiotherapy, speech therapy and occupational therapy to assist you recover as fully as you can. You may, for a period of time, have difficulty walking and talking.

      Reply
      • denis

        Steve – some of these allied health forms of assistance are simply not provided in many centres.

        Reply
  5. Julia

    What are the common side effects of Dexemethezone ?

    Reply
    • Denis

      Dexemethezone is regarded as a “necessary evil”. It helps to reduce brain swelling but high doses and continued use can lead to steroid-induced diabetes, psychosis, weight gain, excessive hunger, and unusual euphoria. Some medical professionals will not warn you in advance about the adverse side-effects but will wait until you ask questions. BTAA believes it is wise to be prepared but not alarmed.

      Reply
  6. Julia

    What if my tumour is benign ?

    Reply
    • Denis

      I prefer to use the terms malignant and non-malignant.

      Reply
    • Steve

      A benign tumour still needs to be taken very seriously. Whether your tumour is benign or malignant should be addressed only once you have resolved your surgical options.

      Reply
  7. Julia

    How do I tell my children/parents/friends?

    Reply
    • Steve

      The best approach is to just tell your friends and family the truth. Tell them about the journey you are undertaking. People will make up their own minds about your journey anyway, so the best thing to do is to just tell them the truth.

      Reply
      • denis

        One has to be careful in what to tell your children. You need to consider their age, maturity, comprehension, school support, etc. BTAA has several publications that may assist children in understanding the illness that their mother or father, sibling or friend, is suffering

        Reply
  8. Julia

    Where can I find phone apps to help me manage?

    Reply
    • Steve

      BTAA is currently developing an application called Patient Perspective that we hope will provide patients with a greater voice and a place for them to get helpful information, provided by patients and carers in their situation.

      Reply
      • denis

        Steve – it may be worth checking out Rare Cancers’ phone app – CAN.RECALL. See: https://www.rarecancers.org.au/page/1086/can-recall-app to see where it is at. I asked if it was useful for a brain tumour patient but I am not sure they answered the question.

        Reply
  9. Julia

    Can I get help with transport to treatments?

    Reply
    • Steve

      Your local council might be able to help. Most councils have community buses that may be able to take you to appointments.

      Reply
      • denis

        You could add: Bear in mind that your appointment might not be when it was scheduled and your treating health professional might be late. It is therefore advisable to seek a flexible arrangement such as a taxi or friend. This is one activity that friends or relatives can be involved in and they will often be happy to be of service to you, should you make your needs known. When someone contacts you and says “How can I be of help?” suggest they transport you to and from appointments, either regularly or as part of a roster.

        Reply
  10. Tricia

    What financial support – eg parking fees at medical appointments, cost of medication, doctor costs, hospital costs, in-house support – can I get?

    Reply
    • denis

      Some of the costs will depend on whether or not you are being treated as a public or a private patient. However, hospital parking concessional fees might be available to both categories. Medication costs may depend on whether or not they are subsidised under the Pharmaceutical Benefits Scheme (PBS). In-house support may depend on a prior assessment under the ACAT scheme. Some non-government cancer charities (unfortunately BTAA is not in a position to do so) will provide one-off financial assistance for necessities such as bill payments for electricity etc.

      Reply
  11. Tricia

    How can I get assistance to understand my doctor – I am not an English speaker.

    Reply
    • denis

      It might be difficult trying to use the three-way, telephone-facilitated, interpreter services and you might not be able to easily access an interpreter with the specialised knowledge of the medical aspects of brain tumours. Your doctor might also wish to know your situation regarding intimate medical conditions e.g. whether the prescribed dexamethasone has generated thrush, or whether you might have a urinary tract infection (UTI). Consider taking with you a close friend or relative who has good English-speaking skills and can translate for you, as well as accompanying you on the journey and building up an accumulation of knowledge about your condition.

      Reply
  12. Steve

    How do I access the NDIS? (Test question)

    Reply
    • Catherine

      Apply at Centrelink (Test Answer)

      Reply
      • Denis

        Add: You will be required to develop a plan. BTAA knows of some people with a brain tumour who have successfully obtained goods and services from the NDIS but a basic principle is that the NDIS will not supply anything that can already be obtained via existing (State or Federal) schemes. The scheme is limited to people under 65 years of age.

        Reply
  13. Steve

    Is there a cure for brain tumours?

    Reply
    • Steve

      There is no cure but a number of new approaches show promise. New research is targeting the biological processes that cause normal cells to multiply abnormally. Other basic and clinical research is investigating angiogenesis inhibitors, differentiating agents, gene therapy, immunotherapy and invasion inhibitors. Existing approaches to treating brain tumours are being refined, including new surgical techniques, stereotactic radiosurgery and new drug delivery systems. (from the Canadian brain tumour site) https://www.braintumour.ca/16/faq

      Reply
  14. Steve

    What are the different types of brain tumours?

    Reply
    • Denis

      There are at least 156 different types of brain tumour and some of them can have radically different characteristics and different treatments compared with another. BTAA distributes a free handbook from the USA which attempts to deal with the main types of adult brain tumours. It also distributes free copies of a Canadian handbook which concentrates on paediatric brain tumours. Some of the most challenging are – Adults: glioblastoma multiforme Grade 4 (GBM); paediatric: brain stem glioma (BSG), Diffuse intrinsic pontine glioma (DIPG), medulloblastoma. Meningioma brain tumours are very common but are not as lethal as a GBM or an anaplastic astrocytoma (AA).

      Reply
  15. Steve

    Is there much research going into finding a cure and developing treatments for brain tumours?

    Reply
    • Steve

      The Federal Government, in 2017, announced a $100M commitment into finding a cure for brain cancer. The Federal Government also, in 2017, announced funding to build a Proton Beam Therapy Centre in Adelaide that will cost $68M. More information on these projects can be found on our website.

      Reply
      • Denis

        There is something dodgy about the PBT Centre in Adelaide. The Australian newspaper has been running a campaign against it, possibly because it supports a rival alternative. I think it is a few years off being a reality so probably best not to mention it.

        Reply
      • Denis

        You could add into the answer: “Most of the research is taking place in North America and Europe, although …”

        Reply
  16. Steve

    Is stereotactic radiotherapy a viable alternative to surgery? What’s the difference between that and normal radiotherapy?

    Reply
  17. Stephen Newman

    Are there any new experimental treatments or clinical trials that might help me?

    Reply
  18. Stephen Newman

    Who can I talk to if I receive conflicting information or advice?

    Reply

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