Starting, changing and stopping treatment
When someone is first diagnosed with a brain tumour, their healthcare team will use their clinical experience to develop a treatment plan they hope will be as effective as possible, while limiting the risks or side-effects. This is called first-line treatment.
The success of any first-line treatment will vary from person to person. Not only will different tumour types, grades and locations respond differently to different treatments, but a person’s age, unique genetic makeup and general health will also play a part in affecting how the treatment works.
Sometimes, first-line treatment may not be as effective at treating a brain tumour as hoped or cause such severe side-effects that the treatment will have to be stopped – it may even start working and then stop suddenly.
This is completely normal and just because one treatment hasn’t worked, it doesn’t mean others won’t.
Make the right choices for you
Our Step by Step interactive guide outlines what happens following a diagnosis, to answer your questions and help you to understand what to expect.
If first-line care isn’t effective, the healthcare team will explore different treatment options to develop second-line treatment which might include different medication, clinical trials and experimental treatments. The factors described above will also affect how well second-line treatment works and, if it isn’t effective either, third- and even fourth-line treatment may be offered.
Unfortunately, it may be that there isn’t an alternative treatment that’s suitable or you and the healthcare team may make the tough decision that trying another treatment simply isn’t in anybody’s best interests – for example, if the treatment has very unpleasant or serious side-effects and there is little chance of success.
At this point, end of life care will begin. This is part of palliative care and it focuses on treating and easing the symptoms, rather than treating the brain tumour itself. This is often an extremely difficult time for anybody affected by a brain tumour and you can find more information about how to manage a terminal diagnosis here.
- Talk about other options, including second opinion and alternative and emerging therapies. It can help you to come to terms with this news to consider any other options.
- Make sure you know who will be taking your care forward. This is often transferred to the community palliative care team, instead of your hospital medical team, so talk to your GP about who you should be in touch with if you are worried about any symptoms or have any questions.
- It can be daunting to consider the end of treatment so talk to your GP or consultant who can refer you for counselling, so that you can talk to someone about how you are feeling and get emotional support.
- Review, or create, your Advanced Care Plan with your palliative care team. You can make sure that it addresses the care or support that you want and need now. It should covers areas such as financial matters, medical decisions and personal preference.
- Can I get a second opinion? How do I do this and will getting a second opinion delay my treatment?
- Is this the right point to shift focus from trying to treat the tumour (curative treatment) to treating me (palliative treatment)?
- Who is leading on my care now? Who should I talk to about my care or how I’m feeling?
- What is an Advance Care Plan and who can help me with this?
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By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.