Coping with a rare or less common cancer diagnosis

A cancer diagnosis usually brings uncertainty, but for people with an RLC cancer, that uncertainty and feeling of isolation may be harder. You may also feel distress and a range of strong emotions, such as shock, disbelief, fear, anger, sadness and anxiety.

Below are some ways that may help you manage how you are feeling. 

Find out more information

Not knowing what to expect can be tough. There’s a lot you can’t predict or control – when you will get a confirmed diagnosis, what treatment you will have and how long it will take. It may help to find out as much information as you can. Ask your doctor questions as well as where you can find more reliable information. Make a list of things to ask at your appointments. You may be able to email follow-up questions or talk to a cancer care coordinator or nurse.

Stay connected

If you have to travel away from home for treatment, you may feel lonely without the usual support of your family, friends or community. Or people may not be able to visit you because you need to avoid infections. You may stop work, and miss your co-workers and usual routine. Use email, social media or a blog to stay in touch with family and friends.

Try complementary therapies

Complementary therapies, such as massage and meditation, are therapies used alongside conventional medical treatments. They may help people cope with symptoms or side effects and lower stress and anxiety. Talk to your doctor about any therapies you may want to use, to ensure they are safe.

Join a support group

Talking to people who have the same type of cancer can make you feel less alone. You can join the Cancer Council Online Community to connect with others in a similar situation. Call Cancer Connect on 13 11 20 to find a support group that suits you.

Rare Cancers Australia runs support programs and a community for people diagnosed with a rare or less common cancer. Call 1800 257 600 or visit Rare Cancers Australia.

Get help with work and money

Cancer can be expensive and may mean that you cannot do your usual work. This can make you feel more stressed. If you need legal or financial advice, Cancer Council may be able to connect you with professionals who can help. Call Cancer Connect on 13 11 20.

Talk about how you are feeling

It is natural to feel overwhelmed by the diagnosis. Your cancer team can be an important source of support. The social worker at the treatment centre or hospital can also help. It is important to let your doctors know how you are feeling. They can refer you to a counsellor, psychologist, psychiatrist or another health professional trained to help. They may also be able to put you in touch with other people who are going through similar treatment.

Watch for feelings of sadness

If you regularly feel sad, have trouble getting up in the morning or lose motivation to do what used to make you happy, you may be depressed. This is common for people who have cancer. Talk to your GP, as counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. For information on depression and anxiety, call Beyond Blue on 1300 22 4636. For 24-hour crisis support, call Lifeline on 13 11 14.