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.
Questions everyone should ask
- Am I in remission or cured?
- How often will I see you?
- Are telehealth follow up appointments possible?
- Who will book my appointments with you now?
- What follow up tests and scans do I need, and how often?
- If my side-effects don’t improve, what will the plan be?
- Are there any late side-effects I should look out for?
- If I have new symptoms or concerns about my health, who do I contact?
- What concerns or symptoms do I need to report to you, and when should I go to my GP?
- Is there an after-hours number if I have concerns at night or on weekends?
- What information does my GP need to know so that I get proper follow up care with them?
- When and how should I contact you?
- What are the chances of my lymphoma coming back?
- What are the signs and symptoms of a relapse?
- What will be the plans or treatment options if my lymphoma relapses?
- When will my immune system be back to normal?
- When can I travel locally, nationally or overseas?
- Are there any clinical trials for people in remission that I am eligible for?
- Is there a cancer wellness centre I can go to now I’ve finished treatment?
- What other supportive care is available to me?
Extra questions depending on your personal circumstances
- When can I start having unprotected sex again?
- How soon can I get (or get my partner) pregnant?
- When we’re ready to start trying to get pregnant, who can help with fertility counselling and who organises these appointments?
- When can I start playing contact sports again?
- I live far away; can I have follow-up appointments closer to home?
- How long until my hair grows back and can I dye it when it does?
- When can I get back to school or work and what precautions do I need to take?
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 at www.canteen.org.au.
Disclaimer: Lymphoma Australia has taken every precaution to make sure the information in this document 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.
