DCIS: coping in the first few weeks

It’s very normal to experience a wide range of emotions when you are told you have DCIS. A diagnosis of DCIS – ductal carcinoma in situ – is different for everyone.

DCIS is not invasive breast cancer, but you may need some of the same treatments.

It can be reassuring to know that most people who have treatment never have DCIS again. And most never develop invasive breast cancer.

We have strategies to help you cope with the fear and anxiety around diagnosis, and to find support when you need it.

What’s normal after diagnosis?

Many people feel a sense of shock. As DCIS often has no symptoms, people do not expect their diagnosis.

You have probably had weeks of uncertainty while you waited for tests and results. Then, along with the diagnosis, you may be given a lot of new information. It can be hard to make sense of your feelings and what is happening.

People often experience this confusion and chaos before starting to feel they have some control over what's happening to them. That sense of control helps them manage the emotional and practical issues that come with DCIS.

10 tips to help you cope

There are no rules for how to cope with a diagnosis. But these tips are from people who have been through this experience, to help you find your way and feel more in control.

1. Understand what your diagnosis means

Generally, it helps to be well informed. It’s much easier to cope when you know what to expect. Most people find they cope better when they understand their diagnosis and what it means for them.

Learn About DCIS and find out about Treatment for DCIS.

2. Ask questions

When you know what treatment your doctors recommend, ask as many questions as you need.

Before you go to an appointment, write down the questions you want to ask. Put your most important questions at the top in case you don’t have time to ask them all.

3. Find a team that will work for you and with you

It’s important that you can trust the people in your treating team and they make you feel cared for. Ask for a second opinion if you think it would be helpful.

Read more about DCIS and your treating team.

4. Take your time

Most decisions about your treatment don’t need to be made in a great hurry. Take time to think about what you want.
You may feel pressure from people close to you, but your needs are the most important.

If you need more time to decide about treatment, ask your treating team.

Ask questions if there are things you don’t understand or talk over the decisions with your family or support network. This won’t affect the outcome of your treatment but it can make a big difference to how prepared and in control you feel.

Read How DCIS treatment is decided for further information.

5. Understand the out of pocket costs

Before you begin tests or treatment, it’s important to know:

• what the costs will be
• how much is covered by Medicare and/or private health insurance
• what the ‘gap’ is – what you will need to pay out of pocket.

Your treatment will extend over a period of time so costs can add up, especially if you’re being treated in the private health system.

Talk to your doctor/s and your private health insurer if you have one, before you make a final decision about treatment. You can ask for a second opinion on costs if you need to.

Find out about financial support during treatment.

6. Keep records

If you can, take a family member or friend to your doctors’ appointments. They can help you record and keep track of the information you receive.

Keeping a record of your bills and any Medicare or private health fund rebates you receive will help you stay on top of your expenses. Store your medical or financial records in one secure place.

7. Talk about your emotions

Talking about your emotions can help you process how you’re feeling. Sometimes talking to friends or family members can help. Other times, someone outside your close circle will be most helpful. This could be:

• your GP
• one of your specialist doctors
• your breast care nurse
• a social worker, counsellor or psychologist.

They can listen to your fears and concerns and support you through this challenging time.

Professional help can also help you with strategies for talking to family members, including children, and work colleagues and friends. Find out ways to access Psychology and counselling support.

8. Put yourself first

If it helps, allow family members to screen your phone calls and messages. Choose who you want to see and when. You may wish to start a blog or group email to keep your family and friends up-to-date so you don't have to tell everyone individually. 

Spend time with the people who make you feel good.

Take time out. Try to do things you enjoy and say no to activities you don’t feel up to doing.

9. Look after your physical and emotional health

A good night’s sleep helps you to cope better both physically and emotionally. In the first few days or weeks after diagnosis your brain may be so busy you find it hard to sleep. This can make it difficult to think clearly and make good decisions.

For ways get a good night’s sleep, go to Sleep problems.

Exercise when you can. Regular exercise has been found to have enormous benefits in health and wellbeing. It can also help to make you feel less anxious, stressed or depressed.

Try relaxation or meditation to help keep your emotions in balance.

10. Create a support network

Allow others to help and support you and your family. Don't be afraid to ask for help or to accept help when it's offered.

Our Online Network is a safe and supportive place to connect with others affected by DCIS.

BCNA’s Helpline is also available on 1800 500 258 for information, support, resources and for a referral to the services you need.