Life after treatment

After a cancer diagnosis, people are often kept busy with medical appointments and the demands of treatment. Coming to the end of treatment may be a time when you notice the impact cancer had on you, your family and friends. The challenges you may face will vary depending on the type of cancer and treatment you had, and your personal situation.

People may expect life to return to what it was like before their cancer diagnosis. For many people, though, it isn’t that simple. The reality is often more emotionally and physically complex.

It’s common for people to feel both excited and anxious when treatment ends, and may experience the following:

• Many say they need time to stop and reflect on what has happened before they can think about the future.
• Some people re-evaluate and change their values, goals, priorities and outlook on life.
• Many survivors feel a sense of loss for ‘the person I once was’, ‘the way things used to be’ and ‘the things I used to do’.
• Some feel they should be happy and full of wisdom because they survived but instead feel guilty that this isn’t the case.
• Some people feel as though they have been through a lot and need time to rest, while others want to return immediately to their previous life.

How you feel and cope will depend on the type of cancer and treatment you had, side-effects you experienced and what you’re like as a person.

The way your family and friends adjust to life after cancer may also impact how you come to terms with your new normal. They may act like your cancer experience is over, while you feel like it isn’t. Your family and friends care for you, but they may not fully understand what you’ve been through and might not realise that the cancer experience doesn’t necessarily stop when treatment ends. Allow yourself time to adjust to these changes and explain to your friends and family that you may continue to need their support during this period.

It’s natural to have many different—and sometimes conflicting—feelings after treatment ends.

There are a number of common emotions that you might experience:

• Relief. You might be relieved that the treatment has finished and seems to have been successful. You may feel happy to focus on your regular activities.
• Feeling disconnected. One of the most common feelings people have is a sense of being on their own.
• Anger. When you were diagnosed you may have focused on treatment, and now that it’s over you can let go of your emotions. You may feel relieved it’s over, but angry the cancer experience isn’t.
• Worry. After treatment has finished it is common to feel worried and uncertain.
• Fear of recurrence. The most common fear is wondering if the cancer will return.
• Frustration. Some people feel frustrated because they think their family and friends expect too much from them. Others feel frustrated because they can’t do the things they want to do.
• Anxiety about follow-ups. Many people feel anxious before follow-up appointments. Waiting for test results can also be a very anxious time.
• Uncertainty. Many survivors find planning for the future difficult because they feel uncertain about their health.
• Lack of confidence. You may feel differently about your body and health. Many people say they feel vulnerable and less confident.
• Feeling down or depressed. Feeling low or depressed after treatment finishes is common. Depression is more than feeling down for a few days. It may mean you feel in a low mood most of the time or your sadness lasts two weeks or more.

Acknowledging how you’re feeling may help you cope with your emotions. Most cancer survivors find they do feel better with time.

Not everyone will have difficulties after their treatment finishes but, for many people, their concerns and fears are ongoing. Some people feel they need more support than they did when they are diagnosed and during treatment.

If you find you need support at any stage of your cancer experience, call Cancer Council SA’s 13 11 20 to speak to an experienced cancer nurse.

After your treatment has finished you may need regular check-ups, either with your specialist or GP, to monitor your health and wellbeing.

The follow-up care you receive depends on the type of cancer and treatment you had; plus any side-effects you are experiencing. It is usually different for each person.

It’s a good idea to ask your specialist for a written summary of your cancer type, treatment and follow-up care. Share this summary with your GP or any new health care providers you see. It will provide medical guidance for your care when you’ve finished active treatment.

This plan should include the following information:

• type of cancer;
• date of diagnosis;
• diagnostic tests performed and the results;
• pathology results: stage, grade, hormonal status (usually for people with breast cancer), tumour marker information;
• treatment details (e.g. type of surgeries, sites and amounts of radiotherapy, names and doses of chemotherapy and all other drugs, results of scans and x-rays);
• list of symptoms to watch for and possible long-term side effects of treatment; and
• contact information for health professionals involved in your treatment and follow-up care.

During check-ups your doctor will:

• see how you’re recovering;
• ask how you’re feeling and coping with life after cancer;
• monitor and treat any ongoing side effects;
• look for any signs the cancer may be coming back;
• do a physical examination;
•  investigate any new symptoms;
• ask if you have any concerns; and
• discuss your general health and suggest things you can do to keep yourself healthy such as eating a healthy diet and exercising.

Blood tests and scans may be required depending on the cancer type and treatment.  It is important that you are honest with your doctors.

Tell your doctor if you have:

• trouble doing everyday activities;
• new symptoms;
• new aches or pains that seem unrelated to an injury, or familiar ones that have become worse;
• changes in appetite and/or weight;
• feelings of anxiety or depression;
• medicines you are taking and other complementary therapies you are using; and
•  other issues such as changes to your sex life, how cancer has affected your relationships or practical issues such as returning to work.

Many people like to have a family member or friend go with them, to take part in the discussion, take notes or simply listen. If you have several questions or concerns, ask for a longer appointment.

Many cancer survivors say they feel anxious before routine check-ups and may experience sleeping problems, poor appetite, mood swings and feeling more aches and pains in the lead-up to the appointment. Going back to hospital may bring back bad memories or you may fear you’ll be told the cancer has come back.

Finding ways to cope with your worries before check-ups may help.

You can:

• Try to see your check-ups as a preventive measure. Regular check-ups may increase the chance of any problems being picked up early when they may be easier to treat.
• Use it as an opportunity to have any new questions answered.
• Book the first appointment of the day so you don’t have time to dwell on the appointment.

Once you have had a few check-ups and all is okay, you may feel less anxious.

After treatment is over, your family and friends may also need time to adjust.

Your cancer diagnosis may make people around you question their own priorities and goals. And, like you, they may be concerned about the cancer coming back.

People close to you can have a range of reactions when your cancer treatment ends. They may feel happy and relieved, exhausted, confused or worried about what the future holds.

When treatment finishes your family and friends may expect you to act the same as before the cancer. If you have changed, people close to you may be disappointed, worried or frustrated.

Friends and family may say things like “but you look fine”, “your treatment has finished now” and “the cancer has gone, hasn’t it?” They may have difficulty accepting that some symptoms—like fatigue—can persist for a long time and that adjustments may need to be made. You may feel you’re expected to be grateful you’re still alive no matter the side effects.

It’s natural for family and friends to want the distress and disruption of cancer to be behind you. They care for you and want you to be well, but you may need to tell them that your recovery is ongoing and you need time to recover after what you’ve been through. You might not be able to just ‘get on with it’ as quickly as they might want you to.

It can be difficult to deal with any change in how your body looks, feels or functions, and it can take time to get over the side effects of treatment. Side effects vary depending on the type of cancer you had, its stage and the treatment you were given. The changes can be both physical and emotional.

Some problems resolve quickly; others can take weeks, months or even years to improve. Your body will cope with the treatment and recovery in its own way. It is best not to compare yourself to others.

For some people, there may be permanent or late side effects. Late effects are problems that develop a long time after treatment finishes, whereas permanent side effects may have been present since treatment finished and may never completely go away. If you are concerned about a new side effect talk to your doctor.

Other people may not understand how much these changes affect your day-to-day living, especially if it has been a few months or years since your treatment finished. This can be frustrating and make it harder to cope with the side effects.

Common side effects can include:

• feeling very tired (fatigue);
• sleeping difficulties;
• pain;
• loss of self-esteem and confidence/changed body image;
• changes in sexuality/intimacy;
• erectile dysfunction;
• sudden menopause;
• fertility problems;
• swelling in the limbs (lymphoedema);
• memory changes (sometimes called chemo brain);
• feeling down/depressed;
• problems with eating or drinking;
• weight gain or loss;
• changes in bladder and bowel function;
• nerve damage (peripheral neuropathy);
• heart problems; and
• hearing problems.

For practical tips on managing side effects download our ‘Living Well after Cancer booklet’.

Download booklet

Many cancer survivors choose to adopt a healthier lifestyle after their cancer experience to help reduce their risk of further cancer diagnosis.

There are a number of ways that you can improve your health and reduce your risk of cancer.

• Maintain a healthy body weight
• Eating a healthy diet
• Be physically active
• Protect yourself in the sun
• Quit smoking
• Limit or avoid alcohol

After any serious illness, people may have concerns about financial issues, insurance policies, superannuation and work.

Financial assistance

For many people, cancer treatment can be a financial strain. This may be caused by extra out-of-pocket costs for medicine or travel expenses, or from loss of income. These extra costs can cause you and your family a lot of stress, but support is available.

For more information, download our ‘Cancer and Finances’ booklet.
Download booklet

Insurance

Applying for new insurance (life, income protection or travel) may be harder because you have had cancer. You are generally required to provide your medical history, including your cancer diagnosis. It is a good idea to check exactly what is covered before purchasing a new insurance policy.

For more information about insurance, download a copy of the New Insurance Policies factsheet.

Download factsheet

Work is an important part of life for many people. Many people need to keep working to provide an income for themselves and their families.

Besides income, returning to work can provide satisfaction and a chance to socialise.

If you took time off for treatment, you may choose to return to work or find a new job when you have recovered.

The way that cancer affects your work and finances will depend on your
individual situation. You may work on a part-time, full-time or casual
basis, be self-employed, be looking for work, or work from home.

For more information, download our ‘Cancer, work and you’ booklet.

Download booklet

Getting back to a healthy lifestyle after cancer is important. Cancer Council SA’s Healthy Living after Cancer program can help you get active, eat better and feel better so that you are able to do more of the things you want to. Find out more – Healthy Living after Cancer.

Many people find they need support after treatment finishes. The availability of services may vary depending on where you live. Some, but not all, services are provided free of charge.

Education programs for cancer patients and survivors are available in some treatment facilities or community centres.

Self-management is an important part of survivorship. With the help of your health care team there are many steps you can take to manage your own wellness.

Cancer Council SA offers a range of information and support services to people looking to life beyond cancer treatment. To find out more, speak to our experienced cancer nurses on 13 11 20.