Questions to ask
Youth Cancer Service
Here are some questions you might want to ask your treatment team.
There might be a million questions you want to ask your treatment team or you might not be sure where to start. Here are some questions that other young cancer patients have found helpful to ask on topics from diagnosis to treatment through to COVID-19, fertility and relationships.
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Title
COVID-19
Description
- Am I at greater risk of infection as a result of my cancer treatment?
- Is there anything else I should be doing as a cancer patient to reduce my risk of infection beyond the general advice everyone is getting?
- Should I be completely self-isolating or can people visit me?
- Should I continue going to school, uni or work? What about other people in my household?
- Will my appointments and treatment continue as planned?
- Is there any information yet about how well young cancer patients cope if they do get coronavirus?
- Are there additional or online support services I can access?
Title
Diagnosis
Description
- What kind of cancer do I have?
- Where is the cancer at the moment? Has it spread to other parts of my body?
- How common is my cancer?
Title
Tests
Description
- Are there any further tests that I need to have?
- What will they tell us? Will they confirm my diagnosis?
- What will I experience when having the test/s?
- Are the tests performed here?
- What is genetic testing? What will it tell me?
- What does it mean to have a gene mutation?
Title
What’s going to happen?
Description
- How serious is this cancer?
- What is this cancer going to mean for me?
- What symptoms will the cancer cause?
- Will the treatment cure the cancer or just control it and manage symptoms?
- What is likely to happen with treatment?
- What is the expected survival for people with my type of cancer?
- Is the treatment going to improve my chance of survival?
- How likely is it that the treatment will improve my symptoms? Is it worth going through?
- How long do I have to wait before I know whether my cancer has been cured?
Title
Treatment Options
Description
- Is it necessary to have treatment right now?
- If so, do I have a choice of treatments?
- Do I have a choice about where I receive my treatment? Can I be treated close to home?
- What are the pros and cons of each treatment option?
- What can I expect if I decide not to have treatment?
- How much time do I have to think about this? Do you need my decision today?
- What is your opinion about the best treatment for me?
- Will I need a bone marrow transplant?
- Will I need to have surgery?
- Will I need to stay in hospital? How long will I have to stay?
- Can my parents/caregiver/partner stay in hospital with me?
Title
Treatment Plan
Description
- What exactly will be done during the treatment and how will it affect me? When are these effects likely to happen?
- What is the treatment schedule, e.g. how many treatments will I have, how often, and for how long will I have treatment?
- Where will I have the treatment?
- Are there any advantages/disadvantages of the private versus public health system?
- Who will be giving me the treatment? (e.g. you, a nurse, a surgeon etc.)
- Will I have the chance to meet the people treating me before the procedure begins?
- Is there anything I can do before or after to help with my recovery?
Title
Preparing for Treatment
Description
- Is there anything that I can do before or after my treatment that might make it more effective, e.g.
- diet, work, exercise?
- What are the do’s and don’ts while having treatment?
- What problems should I look out for and who do I contact if they occur?
- What are the side effects? Will I lose my hair?
- Are there long-term side effects from the treatment?
- Will I need any additional treatment after this? If so, what might that be?
- What is my long-term follow up plan?
Title
Caring for myself during treatment
Description
- Should I change my eating habits during or after treatment?
- Should I exercise during or after treatment?
- Is there anyone who can help me to manager my diet and exercise?
- How can I look after my mental health during treatment?
- Is there anywhere I can go to get support if I don’t want to see a psychologist or social worker here?
Title
Costs
Description
- What will be the costs throughout my treatment, e.g. medication, chemotherapy, etc?
- Are there any other things I might have to pay for? E.g. parking,
- Am I eligible for any benefits?
- Can someone help me apply for any benefits I’m eligible for?
- Are my parents/caregivers eligible for any benefits?
Title
Optimal Care
Description
- Do you specialise in treating my type of cancer?
- How well established is the treatment you are recommending?
- Are there guidelines on how to treat my cancer?
- Is there another specialist who treats this type of cancer that you recommend for a second opinion?
- Do you specialise in treating young people with cancer?
Title
My treating team
Description
- Do you work in a multi-disciplinary team and what does this mean?
- Can you explain the advantages of a team approach?
- How do you all communicate with each other and me?
- Who will be in charge of my care?
- What do I do if I get conflicting information?
- Who is part of the team?
- What are the Youth Cancer Services?
- What are the pros and cons of being cared for by the YCS? What will they do?
- Can I be referred to the youth cancer services?
- Are you part of the YCS team?
- Who else is part of the YCS team?
- Can I be cared for by the YCS team anywhere? Can YCS look after me closer to home?
Title
Work and education
Description
- Will I be able to continue to work/go to school/uni while I have treatment?
- Can someone help me talk to work/school/uni about what’s happening?
- Can I get help to keep up to date with my studies while I’m in hospital?
- Is there any way for me to stay connected with my friends while I’m in hospital?
- Can I access any benefits if I have to stop working?
Title
Fertility
Description
- Will the cancer or treatment impact my ability to have children in the future?
- What is fertility preservation?
- What are my different fertility preservation options?
- Should I consider fertility preservation?
- What will happen if I don’t do anything to preserve my fertility?
- What does fertility preservation cost?
- How do I access fertility preservation services?
- Could my children be more at risk of cancer because of my diagnosis?
- Will having children be different for me than the average person (e.g. will I need reproductive assistance / invitro fertilisation / IVF to have a child)?
Title
Sexual Health
Description
- Will the cancer or treatment impact my sex life?
- How do I talk to my partner about this now or in the future?
- Should I avoid having sex?
Title
Family, friends and relationships
Description
- How do I talk to my friends about my cancer and what’s happening to me? Is there anyone that can help?
- Is my cancer one that could be passed on between family members? Should anyone in my family be tested?
Title
Support
Description
- How do I access additional support if I need it (e.g. a social worker, counsellor or psychologist)?
- What support options are available here in the hospital?
- What support options are available in the community?
- What support options are available online?
- Is there any way I can meet or speak of other young people like me?
- What do support services cost?
- How do I access them? Do I need a referral?
- What information is available about my cancer and its treatment, e.g. books, videos, websites, etc?
- Are there any complementary therapies that you believe may be helpful or that are known to be bad for me?
- Is there someone I can talk to who has been through this treatment?
- Are there services/support groups that can help me and my family deal with this illness?
Title
My GP / Family Doctor
Description
- Will my GP be part of my care? Should I see them regularly
- Will you tell my GP what is going on?
- I don’t have a regular GP – should I get one? How do I do that?
- When should I go back to seeing my GP instead of you?
Title
Life beyond cancer
Description
- Will I be able to go back to work/uni/school?
- Will you / the team still look after me after I finish treatment? How long will you look after me for?
- Is there any information or programs I can access on life after cancer?
- How do I get back to a normal life after treatment?
- What things will I be able to do after treatment? What things won’t be the same after treatment?
- Is there a chance my cancer will come back? How likely is it?
- Is there anything I can do to stop my cancer coming back in the future?
- Is there anything I should look out for that might suggest the cancer is coming back?
Title
Clinical trials
Description
- What is the usual (standard) treatment for my condition?
- What’s the difference between normal treatment and a clinical trial?
- What are the usual costs of being in a trial and how does this differ from standard treatment?
- Will you still look after me if I go on this trial? Who will if not you?
- How do I find a suitable clinical trial?
- Who can join?
- How do I take part?
- How will my confidentiality be protected?
- How can I learn more about the trial which interests me?
- What benefits could I get by joining a trial?
- If I join a trial, how might others benefit?
- How can I find out more information about clinical trials? Are there resources I should look at?
- What are the general risks of being in a trial?
- If I get a side effect or injury because of being in the trial, will I get compensation?
- There are a lot of terms I don’t understand – can you help me decode them?
- What types of clinical trials are there?
- What do the different phases mean?
- What does randomisation mean?
- What does blinding mean?
- Do I have time to think about whether to go on a trial (a day or two, or a week?)
- If I join the trial, but later change my mind, how can I stop?
- Will I be penalised in any way?
- How will I be informed of the results of a trial?
- How are the results measured?
- How do I join a trial? Do I need a referral?
- What will happen after I decide to join a trial?
- Will I have to sign any documents? Who will help me understand them?
- Who can I speak to if I have more questions about the trial?
- Do my parents have to agree as well?
- Who can my parents speak to if they have questions?
Looking for the Cancer Answer app?
The Cancer Answer app is no longer available, but you can use the question lists above to get answers to the cancer questions that matter to you. You can also use your phone to record the conversation (just let them know you’re recording) so you can listen back to the answers later.