Learning about your lymphoma can be like learning a new language. It takes time and practice. Please keep this document handy so you can refer back to it as often as you need to. It will become easier to understand the more you read it.
Introduction
It can be very difficult to know what questions to ask your doctor when you first learn you have lymphoma or CLL. It can be overwhelming, and there are many things you will need to learn about. But if you don’t already know about them, how can you know what to ask?
To make things easier for you, we’ve developed some questions you may like to consider asking. Please feel free to print this page out to take with you to your appointment. Its also a good idea to take a notepad and pen with you to write any answers down. If you prefer, you could ask your doctor if they mind you recording their answers on your phone.
Questions to ask before you start treatment
- What tests have been done? What tests still need to be done before treatment?
- Do I have any genetic abnormalities in my blood or biopsies? If yes, can you explain these results to me including how it will affect my treatment and how I will respond to treatment
- What is my subtype of lymphoma called?
- What is the stage and grade of my lymphoma/CLL?
- Is my lymphoma indolent (slowgrowing) or aggressive (Fast-growing)?
- Why have you chosen this treatment for me? Are there any better ones available?
- Will I be cured after treatment? If not why not, and what happens when treatment ends?
- What are the main, and most severe side effects I might get?
- Who do I contact (and what are their contact details) if I am unwell, get side effects or symptoms, need help or have questions?
- Are there any other choices?
- Are there any clinical trials I can join? What would be the benefit of joining these?
- Will I need to have time off work during and after treatment? How much time?
- Will I be able to get pregnant, or get my partner pregnant during or after my treatment?
- Is there a social worker, and other support services available to me to help me organise finances, meals and housework during treatment?
- Is there anyone to help me make a plan for my health care decisions for the future? How can I contact them?
Additional Questions if you live in the rural and/or remote Australia
16. Can I have my appointment and treatment close to home?
17. Is telehealth an option for me?
18. How long will I need to be away from home for treatments?
19. How often will I need to come to the city (or be away from home)?
20. What support is available, and who can I contact for financial, travel and accommodation support?
Additional questions if you have lymphoma or CLL and have young children, or if you are the parent of child or teenager with lymphoma
21. What organisations are available to help my children cope with my cancer diagnosis?
22. Is there support available for my child, and their brothers and sisters while they go through treatment?
23. How much time, and how often will my child need time off school?
24. What tutoring services are available for my child with lymphoma, and my other children?
25. Will my child be able to have children when they grow up? Is there anything that can be done to improve their chances?
For information on caring for someone with lymphoma or CLL please scan the QR code here.
Resources and Support
Lymphoma Australia offers a wide range of resources and support for people living with lymphoma or CLL, and their carers. How to access our resources:
- Visit our website www.lymphoma.org.au for more information.
- Phone our Lymphoma Care Nurse Hotline on 1800 953 081.
- Email our Lymphoma Care Nurses nurse@lymphoma.org.au
- Booklet: Understanding Non-Hodgkin Lymphoma (NHL)
- Downloadable information: Visit our website, or give us a call if you would like some more information on a variety topics related to lymphoma
- Join our Facebook page Lymphoma Down Under (make sure you complete all the membership questions when you join).
Cancer Council offers a range of services, including free counselling, to support people affected by cancer, including patients, families and friends. Services may be different depending on where you live. You can contact them at www.cancer.org.au or by phone on 13 11 20.
Medicare Australia: Check with your GP if you are eligible for a Mental Health Treatment Plan (MHTP). This plan is funded by Medicare and can provide you with up to 10 sessions with a registered psychologist. More information can be found here.
WeCan is an Australian supportive care website to help find the information, resources and support services you may need following a diagnosis of cancer. You can visit their website at www.wecan.org.au.
Canteen provides support for young people aged 12-25 years who have cancer, or, who have a parent with cancer. Find out more at their website here www.canteen.org.au.
Health Translations: A collection of health related information collected by the Victorian Government with resources in different languages. You can visit their website at www.healthtranslations.vic.gov.au.
Useful Links
Caring for someone with Lymphoma or CLL
Disclaimer: Lymphoma Australia has taken every precaution to make sure the information in this factsheet is accurate and up-to-date. However, this information is intended for educational purposes only and does not substitute for medical advice. If you have any concerns about your health or wellbeing, please contact your treating team.
