The short guide to a suspected brain tumour: Treatment and diagnosis

When someone is suspected of having a brain or spinal cord tumour, it can be very difficult. We’ve put together a guide to help you navigate through this tough journey.

What to expect in the lead up to a diagnosis

It is common for brain tumours to be diagnosed by accident. They often show up on scans being carried out to diagnose other problems and may come as a great shock to all involved. Others may receive a diagnosis because they have been suffering from the common symptoms associated with a brain tumour and may have been referred by their GP for investigation.

Whatever way you are to find out, the process will usually be the same:

1. Most people will have a scan, quite often a CT or MRI scan which will show the tumour. Blood tests can also tell doctors that there is cancer in your body, and they might have to do a series of scans, including X-rays, to try and find the source of it.
2. It is up to a neurologist (doctor specialising in the brain) to identify a cancer. Oncologists (or neuro-oncology specialists) assist with further diagnosis and treatment;
3. Some people may have a biopsy (a sample of abnormal tissue is removed to help diagnose the type and grade of tumour you have) of the tumour taken, but this is not always possible depending on where the tumour is. It may take a couple of hours to perform and require a stay in hospital.
4. Once the doctors know that it is a cancerous tumour, they will try to grade it. Grading will tell them how advanced the cancer is, how quickly it is growing or spreading, and if you have any other tumours elsewhere in the body. The grading of your tumour will then influence what treatment you should receive and when. However, sometimes the grades can look very similar and make it difficult to confirm the stage and growth rate.

Getting the most from medical appointments

The journey to brain tumour diagnosis can be very difficult. Here are some tips to help manage your stresses when you are undergoing investigations:

1. Take someone with you to appointments, so that they can support and comfort you;
2. Take a pen and paper so that you can write down what you are told. You will be given a lot of information by the doctors and nurses, so you might not be able to remember it all when you get home;
3. Ask any questions that you have and be frank about your concerns with your doctors. If these aren’t discussed in the appointment you are given, don’t be afraid to ask for another appointment;
4. Seek out support from other people who have been through the process. The hospital may have their own groups who can help you, or you can contact Brain Tumour Support

Seek out support from other people who have been through the process. The hospital may have their own groups who can help you, or you can contact Brain Tumour Support.

Delayed diagnosis

There are many reasons why it might take a long time for a tumour to be diagnosed. This does not mean that the doctors looking after you have not done their job properly. Usually they will have done everything they should, but sometimes mistakes can happen.

The most frequent errors for which a patient, or their families, may be entitled to compensation are:

1. Delays in GP’s referring patients with a suspected tumour. If your doctor cannot explain your problem but has not sent you to hospital, you need to ask them why. You are entitled to a second opinion if you are not happy;
2. Doctors sometimes miss evidence of tumours on scans. This can mean that people are diagnosed months or years after they should have been when someone else happens to look at the images. This can sometimes lead to the condition becoming worse.
3. There can sometimes be delays in arranging treatment. Once a cancerous tumour has been diagnosed, doctors have a set timeframe to start treatment. If there is a delay of weeks, months or years, this could have an impact on whether you can be cured.
4. It is very rare, but sometimes the wrong chemotherapy or dose can be given to patients.

It is important to remember that treatment of brain tumours can be very difficult, and procedure can be high risk. Your doctor should explain these fully to you before you agree to any treatment, but a poor outcome does not necessarily mean that there has been a mistake.

Support when going through brain tumour treatment

There are lots of different ways to treat a brain tumour. Finding the right treatment for you may depend on how bad the tumour is, where it is in the brain and whether you have any tumours in other parts of the body. Doctors will also think about your other health conditions and the impact your treatment may have on other aspects of your life.

Whatever treatment you undergo, whatever level of support you receive, here are some suggestions that may help you get through:

1. Whether you are undergoing chemotherapy or cranioplasty, you will probably feel more tired than normal. You may experience cognitive difficulties, which is a common side effect of certain treatments. Going to bed earlier and getting up later can help, so try not to pack too much into your day. If you need a later appointment, just ask and don’t be afraid to say no to things you don’t want to do.
2. Patients undergoing chemotherapy or radiotherapy must take extra care to look after their heads. You will probably be told to keep your head out of direct sunlight. So buy some nice hats and scarves for all occasions. You might also be told to wash your hair less often, and to use milder shampoos.
3. It’s not just doctors and nurses that can support you. Social workers, district nurses and hospices may be on hand to support you. They may be able to help with sorting out your finances, arranging transport or be there to talk about your experience.
4. Diet like never before. Some people might lose their appetite, experience a change in weight or have abnormal blood sugars. It’s important that your diet meets your bodies needs as they change. A dietician may be able to provide supplements or other specialist diet products to help you stay healthy.

Speak to a brain tumour specialist free of charge

We are the only law firm affiliated with Brain Tumour Support; recognised for our expertise in brain tumour and other cancer related claims. If you are worried that diagnosis or treatment of your brain tumour has been affected by negligence or mistake, our team of experts may be able to assist. We can investigate misdiagnosis, delays or failure to diagnose and other negligent treatment to see whether or not you and your family may be entitled to support and compensation.

We can also support you with any other legal issues that might arise from your diagnosis, including employment advice, your finances – like putting a Will in place; or dealing with the impact on your relationships.

At Clarke Willmott we know that negligence cases are as much about getting answers and obtaining non-financial support as they are about recovering any financial losses. We will focus on what you wish to achieve from the case, what your priorities are and what our relationships with other experts in the care, therapy and support sectors could do to help.

If you would like to find out more about how our specialist team can support you, please see our brochure on claims related to brain tumours. Alternatively, you can contact our team directly or by calling 0800 316 8892.