In Part 1 of this series we explained that this series of articles is not meant to be medical advice, but a guide that may help you as a parent of a newly diagnosed child with cancer cope just a bit better.
Information is knowledge, and never more so than when you are dealing with childhood cancer!
These articles are meant to help you be the key part of your child’s treatment that you will need to be.
Take what works for you according to your situation and your child’s temperament, personality, fears, strengths, and how they deal with adversity, and leave what does not pertain to your situation.
Part 2 will deal with what happens when your child is diagnosed with cancer, what tests the doctors may conduct, what you should ask the doctor and the rest of the team dealing with your child’s treatment, etcetera.
When Your Child is Diagnosed with Cancer
A series of tests needs to be done to identify the specific type of cancer your child has, either at the same time as the diagnosis or later. This is called staging, and it determines how large the cancerous mass is and exactly where in the body it is located:
- In order to stage solid tumours, the doctor will look at the size of the tumour, which lymph nodes have been affected, if any, and where and how far the tumour has spread;
- In order to stage leukaemia, doctors will check the liver, spleen, bone marrow and lymph nodes around the areas where the leukaemia can hide.
Staging is necessary in order to determine the best treatment for your child’s cancer and may be done via various tests such as x-rays, CT or CAT scans, MRIs and more.
See Common Medical Procedures for full descriptions of various medical tests.
Refer to the particular cancer with which your child has been diagnosed under “Child Cancer Types” for more detailed information.
Once your child has been diagnosed with cancer, you will be faced with decisions as to where your child will be treated, by whom, and what the best treatment is. You may also want to ask for a second opinion, which is your right.
Once the staging has been done, the doctor or team that is treating your child will develop a plan of treatment that is tailor-made for your child. This plan will outline the exact type of treatment, how often the treatment will be administered, and for how long it will last.
Speaking to Your Child’s Doctor
It is important that you understand everything fully, which can be rather difficult under the circumstances as you will be in shock from the diagnosis. Do not be afraid to ask your doctor to explain things to you more than once if you do not understand something; do not let the doctor bully you into doing anything that you do not understand.
This will be a very difficult time for you, and although it will be difficult to take in all the information at once, it is important that you become part of the solution by partnering with your child’s treatment team. In order to do this you need to understand s much as possible.
Here are some tips for when speaking to your doctor:
- Get a notebook and write down all the questions you may have and anything that you are confused about, and take this with when going to speak to your doctor
- Write down the answers so that you can go over them later when you have more time to think about things and can possibly go online to do some research into what you have been told
- If possible, get hold of a tape-recorder or use your cell phone to tape what the doctor says so that you can listen to it again later and do some research on whatever you are not sure about
- Ask a relative or friend to go to the appointment with you, or even a counsellor, even if both parents are present – someone who is not directly affected will be better able to sit and take notes for you
Questions to Ask the Doctor and/or Treatment Team
Once again, when first getting information about your child’s cancer you probably will not be able to remember everything because of your state of mind; this is normal! You will be getting a lot of information and hear a lot of words and medical terms that you will neither know nor understand fully. Do not let this stress you out even more; Use the techniques mentioned above to help you to retain the information so that you can refer to it later when you are less emotional and stressed.
Make sure that you ask and get answers to the following questions:
About the Diagnosis
- Find out EXACTLY what type of cancer your child has
- Ask what the stage/extent of the cancer is
- Ask whether any more tests will need to be done, and if so, which tests; how they will be done, and whether they will hurt or not
About Treatment Choices
- Ask whether there are alternative treatments, what they are, and what the impact each will have on your child/the cancer.
- Ask your doctor which treatment he/she would recommend and why
- Ask what the prognosis is ( what the chances of recovery are) – the doctor may be reluctant to answer this question, and you may be scared to hear the answer, but remember, many children with cancer live to a ripe old age these days and forewarned is forearmed. The more you know about this disease that your child, you, your family and the treatment team are going to be fighting, the better it will be for everyone concerned
- Ask where the doctor feels is the best institution (hospital/clinic) for your child
- Ask whether the recommended institution has a permanent Paediatric Oncology team on staff
- Ask whether some or all of the treatment can be done in your own home-town
About the Treatment
- Ask how long the treatment will last
- As what the treatment schedule will be
- Ask who you need to /can speak to regarding financial matters
- Ask what effect the treatment will have on your child’s school schedule/work if your child is already in school
About Side Effects
- Ask what side-effects the treatment(s) will have, both immediately and later
- Ask what you can do for your child to help them cope with any side-effects
About the Treatment Location (Hospital/Clinic)
- Ask how long your child will be in hospital
- Ask whether any treatment will be done at home and if so whether you will need any special equipment for it
- Ask what arrangements can be made for you to stay over at the hospital when your child is undergoing treatment
About School and Other Activities
- Ask whether there is some sort of counsellor/therapist that can help make the hospital experience for your child less scary and possibly help to plan Schoolwork, play therapy or other activities
- Ask how soon after treatment your child will be able to return to school
- Ask whether there are any medical conditions/diseases that your child should not be around
- Ask whether they have any information that you can give to your child’s school regarding any special needs he or she might have during treatment
Once you have all the answers to the above questions you can go home and sit quietly and reflect on all that you have been told, and look at the notes or listen to the recording in a much calmer space.
Discuss everything with your spouse and/or close relative/friend, whoever is going to be supporting you through this.
Do some research on the internet, reach out to an organisation like Little Fighters Cancer Trust for a bit of support and information and/or access to resources that will help you find out more and make an informed decision regarding your child’s treatment.
Remember that you are not alone in this, there are many individuals out there able and willing to lend a hand, some support, or even just listen – do not be afraid to reach out for help!
Part III of this series will deal with “Talking with Your Child about Their Cancer”