MDT3 (Ask an expert)

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Do you have a question for our panel of experts?

Take a look at some recent questions below. If you would like to ask a question, you can submit it at the bottom of this page.

(Please note: We are unable to answer questions about your child's specific diagnosis and treatment. If you have a question, please speak to your child's hospital team.)

How do I know that my child is getting the best treatment for their cancer?

"When your consultant gives you the news of your child's diagnosis they should explain what this means and what treatment is recommended. Sometimes this happens straightaway, at other times the results of further tests may need to be available before the final recommendations for treatment can be made.

It is difficult to remember everything from those meetings as there is so much information and you may find it hard to concentrate in what can be a very stressful situation. You should have a key worker who is usually a specialist nurse. If she or he can sit in on the conversation with the consultant they can go over things again with you later.

Ideally, your consultant should copy you into the correspondence to your GP or write specifically to you summarising your conversation. If you still have questions, you should ask for another meeting with your consultant to go through those.

Questions you might want to make sure have been answered are:

  • What is the exact diagnosis?
  • Has the disease spread anywhere else?
  • What is the proposed treatment?
  • How long will it take?
  • Where will it take place?
  • When can my son/daughter go back to nursery/school?
  • Are there any other treatments available?
  • Are there any clinical trials of treatment available in our centre or elsewhere?
  • How successful is treatment likely to be?"

Dr Martin English
Consultant Paediatric Oncologist, Birmingham Children's Hospital, UK

How can I get a second opinion about my child's cancer treatment?

"Your child's diagnosis should be discussed at the multi-disciplinary (MDT) meeting in the main hospital where you are diagnosed. In most cases, there will be other consultants on the team as well and you could ask to see one of them as well.

If you would like your child's case discussed in another hospital, you should ask your consultant to refer you for a second opinion to another principal treatment centre. Most consultants in other hospitals will want to review your child's scans and sometimes the biopsies themselves in their own MDT meeting before seeing you for a second opinion themselves. These would be referrals within the NHS and should not incur any charges for you.

Sometimes families want to seek second opinions from teams in other countries. It is more likely that your consultant will ask you to make those contacts yourself, but you can ask for a summary of your child's case and ask for copies of scans. The hospital may charge you for the cost of scans copied for yourself. You may find that some hospitals abroad make charges for opinions and for treatment.

Your consultant themselves may ask the MDT in another main hospital or sometimes colleagues abroad for their opinion in some cases. They should, of course, ask your permission to do this, but there would be no costs to you for this."

Dr Martin English
Consulant Paediatric Oncologist, Birmingham Children's Hospital, UK
CCLG member and Contact magazine's Medical Adviser

My child has been diagnosed with cancer. What is the risk of my other children getting it?

"There are a small number of very rare genetic syndromes that are associated with increased risk of developing childhood cancer. However, these account for fewer than 1 in 20 of all new childhood cancers diagnosed. For most children the cause is not clear and it is extremely rare for more than one child to be diagnosed within the same family."

Dr Richard McNally
Research Academic, Royal Victoria Infirmary, Newcastle Upon Tyne, UK
CCLG member and Chair of CCLG's Epidemiology Group

I have been told that my son should be going to school whilst he is having his chemotherapy treatment. I am concerned that this will expose him to additional risks such as infection and would prefer for him to be educated at home. How can I arrange for this?

"It can be difficult to get the balance right between letting your child mix with their friends and worrying that they might pick up an infection. Most infections that children on cancer treatment pick up are not from other people or children but from their own body.

For most children on cancer treatment returning to school is recommended, even when their immune system is low. It is important that they carry on with as normal a routine as possible. Keeping your child at home may mean they have less chance for social growth and development.

At your child’s treatment centre, a nurse specialist or social worker will be able to discuss the risks and benefits of attending school further with you. They will also be able to arrange for a meeting to take place at your child’s school to discuss and make them aware of their diagnosis, treatment and the implications of this. They will be able to work with you, your child and their school to develop a plan of care that will address their medical and support needs in school, and provide advice about minimising the risk of infection."

David Thomas
Children's Oncology Macmillan Nurse Specialist, Leeds General Infirmary, UK
CCLG member and member of CCLG's Publications Committee

I have been told that my child must have a central line to have chemotherapy. Why can't he have his chemo through his veins in his hands and arms?

"Some chemotherapy drugs can be irritant to the veins and if they are given through an ordinary drip in to the veins in the hands and arms these quite quickly become scarred and it can be difficult to get drips in which can be painful and distressing.

Also some of the drugs that are given can cause chemical burns to the tissues and skin if they leak in to the tissues from the veins. It is likely that blood samples may need to be drawn, and antibiotics and blood transfusions given in between chemotherapy treatments and it is much less distressing for your child if these can be given through a central line or portacath."

Dr Martin English
Consultant Paediatric Oncologist, Birmingham Children's Hospital
CCLG member and Contact magazine's Medical Adviser

We live near to some power lines. Could this have caused my child's cancer?

"There is some limited evidence to suggest an association between exposure to high strength magnetic fields and increased risk of childhood leukaemia. However, very few homes in the UK are exposed to these sorts of levels of magnetic fields from power lines. So, it is very unlikely that the possible exposures from the nearby power lines would have caused the child's cancer."

Dr Richard McNally
Research Academic, Royal Victoria Infirmary, Newcastle Upon Tyne, UK
CCLG member and Chair of CCLG's Epidemiology Group

I have been told my child needs to have proton radiotherapy and that we must travel to US to have this. Why can she not have this in the UK and do I need to raise money for this?

"Proton therapy is a type of radiation treatment that uses protons to treat tumours rather than standard X-rays. There is no difference in cure rates but can reduce the amount of radiotherapy delivered to normal surrounding tissues. This can help to reduce some side effects of treatment, in particular those which occur a long time after radiotherapy (so called late effects) which are very important in children.

In recent years doctors have recognised this potential benefit of protons in selected cases and while protons are not standard therapy anywhere in the world, there are increasing numbers of children who are receiving the radiotherapy aspect of their treatment as protons rather than X-rays. There are currently a relatively small number of hospital proton facilities around the world.

Two proton centres are due to open in the UK in 2018 based at the Christie Hospital in Manchester and University College Hospital London. In the meantime, the NHS has arrangements with 2 centres in the USA (in Jacksonville, Florida and Oklahoma City) who accept children with a range of tumours from the UK funded by the NHS for proton therapy. Once the UK centres are up and running children will no longer have to travel abroad for proton beam therapy.

If your child's proton therapy has been approved for NHS funding, the NHS will pay for the proton therapy and any other aspects of treatment associated with your child's diagnosis such as chemotherapy and standard tests. The NHS pays for return flights for the child and two carers and travel to and from the proton centre while in the USA.

Standard accommodation, ESTA visa waiver forms, and travel insurance is also paid for. The NHS does not pay for living expenses that would also arise at home such as food and cannot reimburse for loss of earnings. Some families choose to fundraise to cover the additional costs incurred as a result of being away from home for up to 3 months. Charities such as Kids N Cancer may also assist with selected additional costs."

Dr Nicky Thorp
Clinical Oncologist, Clatterbridge Centre, Liverpool, UK
CCLG member and Chair of CCLG's Neuro-Oncology Group

Following treatment for a brain tumour four years ago (aged 7), my son is struggling to cope academically. We were told he would experience problems due to his radiotherapy treatment. I am trying to get extra help at school. Where can I find information to support my case that his needs are related to his illness/treatment, and that without intervention his problems will worsen?

"You are quite correct in suggesting that your son’s difficulties at school are likely to be due to his previous diagnosis of a brain tumour and his treatment with radiotherapy.

The best way of seeking further help at school is to seek the advice and support of the paediatric oncology team who treated him, especially the paediatric oncology consultant and the psychologist who may suggest doing a formal assessment to demonstrate the exact nature of his difficulties.

They will probably also be able to provide medical evidence to support the fact that these difficulties often lead to the need for extra help at school."

Prof Rod Skinner Consultant in Paediatric and Adolescent Oncology / BMT, CCLG member and Chair of CCLG's Late Effects Group

February 2016

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