Childhood Cancer is very diverse, and diagnosis is further complicated because many signs and symptoms—like fever, bruising and headaches—are normal in healthy children. This can lead to confusion for parents, and even for some medical professionals who are not familiar with childhood cancer.
Paediatricians are skilled at distinguishing the usual bumps and pains from those that should cause concern, and can generally sense which symptoms truly need evaluation and will order tests based on the character, duration and severity of symptoms in order to properly diagnose children.
Most paediatricians are also very instinctual, and will send a child to a specialist if they suspect cancer. Diagnosis can only be done after several tests, which could include X-Rays, Scans, Blood Tests, or a Biopsy. This process may take several days; that time is sometimes necessary to arrive at an accurate diagnosis. A multi-disciplinary team of Paediatric specialists, including an oncologist, surgeon, radiation oncologist, pathologist and radiologist, will evaluate the test results, make a final diagnosis and design a treatment plan.
When a child is diagnosed with cancer, the parents and the child are usually in shock over the diagnosis, and this can make them feel totally lost and a sea because the general Jane or Joe Public does not really know that much about cancer, especially Childhood Cancer.
Their lives and all that they thought they knew has changed within a mere moment – they have to digest the bad news and the fact their lives are about to be taken over by this disease that can devastate whole families in so many ways.
Apart from the emotional, physical and financial stress, one also has to learn and deal with a lot of new medical terminology and scary and unfamiliar tests.
Questions a Parent Should Ask
For you as apparent to understand everything, it is important that you ask as many questions as necessary in order to understand exactly what is going on with your child and what the way forward is.
Your child’s doctor and the treatment team will give you a lot of details about the type of cancer and possible treatments. Ask your doctor to explain the treatment choices to you. It is important for you to become a partner with your treatment team in fighting your child’s cancer.
You may find it hard to concentrate on what the doctor says, remember everything you want to ask, or remember the answers to your questions. Here are some tips for talking with your doctor about childhood cancer:
- Write your questions in a notebook and take it to the appointment with you. Record the answers to your questions and other important information.
- Record your conversations with your child’s health care providers.
- Ask a friend or relative to come with you to the appointment. The friend or relative can help you ask questions and remember the answers.
- Why is the test/procedure being done?
- How will the results influence treatment?
- What will your child experience during the test/procedure?
- What can you do to help prepare your child?
- What if any medicines could reduce pain during the test/procedure?
- Are there risks to performing the test/procedure?
Regarding the Diagnosis
- What kind of cancer does my child have?
- What is the stage, or extent, of the disease?
- Will any more tests be needed? Will they be painful? How often will they be done?
- What is the cause of “x” and are there any genetic associations (i.e. implications for siblings and future children)?
- What could they have done differently to prevent “X”?
Regarding Treatment Choices
- What are the treatment choices? Which do you recommend for my child? Why?
- Would a clinical trial be right for my child? Why?
- Have you treated other children with this type of cancer? How many?
- What are the chances that the treatment will work?
- Where is the best place for my child to receive treatment? Are there specialists – such as surgeons, radiologists, nurses, anaesthesiologists, and others – trained in paediatrics? Can my child have some or all of the treatment in our home town?
- What is the difference between standard of care treatment and participation on a clinical trial?
Regarding the Treatment
- How long will the treatment last?
- What will be the treatment schedule?
- Whom should we ask about the details of financial matters?
- Will the treatment disrupt my child’s school schedule?
- When is it ok to use alternative medications or treatments?
Regarding Side Effects
- What possible side effects of the treatment can occur, both right away and later?
- What can be done to help if side effects occur?
Regarding the Treatment Location
- How long will my child be in the hospital?
- Can any treatment be done at home? Will we need any special equipment?
- Does the hospital have a place where I can stay overnight during my child’s treatment?
Regarding School and Other Activities
- Is there a child-life worker specialist (a professional who is responsible for making the hospital and treatment experience less scary for the child) to plan play therapy, schoolwork, and other activities?
- When can my child go back to school?
- Are there certain diseases my child cannot be around? Should I have my child and his or her siblings immunised against any diseases?
- Will my child need tutoring?
- What does treatment mean as far as scheduling work and clinic appointments for the parents and/or caretakers?
- Is information available to give to the school system about my child’s needs as he or she receives treatment?
- What are the support networks available for the family, patient and siblings?
While it is important to know as much as possible about your child’s cancer and there is tons of information available online, please make sure that you only get information from RELIABLE and VERIFIED sources such as Paediatric Oncological Hospitals, Government websites or non-profit Children’s Cancer Organisations, as there are many sites online that either give out incorrect information or biased information (they are affiliated to or being paid by a certain company, often a pharmaceutical company, or an individual trying to sell a certain product or treatment regimen)