What Next?

Those who have gone through intense cancer treatment find that getting back to normal life can be challenging.

You have mixed feelings, relieved to be finished with the demands of treatment and are ready to move forward, yet you may still feel worried and concerned about whether the cancer will come back and what you should do now to stay healthy.

You are redefining your life beyond cancer, so it is important to think of yourself as a cancer survivor – using the term “survivor” helps many people to think positively about themselves moving forward. It can take time to recover so don’t expect too much from yourself. You may have permanent scars on your body, or you may not be able to do some things you could do easily in the past. You may even have emotional scars from going through so much. Your new “normal” may include making changes in the way you eat, the things you do, your work or career and your sources of support.

Coping with these issues can be a challenge; however, getting involved in decisions about your medical care and lifestyle is a good way to regain some of the control you felt you lost during cancer treatment. Your experience and what you have learned along the way can help you become an ‘expert patient’.

Research has shown people who feel more in control of their health, feel and function better than those who do not. Being an active partner with your doctor and getting help from other members of your health care team is the first step.

WHAT IS FOLLOW UP CARE?

All cancer survivors should have follow-up care. Once you have finished your cancer treatment, you will work out with your oncologist a follow-up cancer care plan which may recommend seeing a range of health professionals. Follow-up care includes visiting your GP for regular medical checkups. If you do not have a family GP it is wise to find one close to home who you feel comfortable with, as it is important to be able to talk openly with your doctor.

Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes, and important decisions. Some common questions you may like to ask are:

  • How long will it take for me to recover and feel more like myself?
  • What can be done to relieve pain, fatigue, or other problems after treatment?
  • Is there anything I can or should be doing to keep cancer from coming back?
  • Are there any support groups I can go to?
  • When will I be ready to return to work, should I consider a change of career, lighter duties and flexitime.

In general, cancer survivors usually return to their specialist every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that. At these visits, your doctor will look for side effects from treatment and will check to ensure you cancer has not returned (recurred) or spread (metastasized) to another part of your body.

At these visits, your doctor will:

  • review your medical history and give you a physical exam
  • may run follow-up blood tests, order an MRI or CT scans or an endoscopy

MEDICAL RECORDS AND FOLLOW UP TREATMENT PLAN

Be sure to ask your oncologist for a written summary of your treatment which will suggest what aspects of your health need follow up. This treatment summary should be copied and kept close at hand should you need to go to hospital suddenly. This summary, medication list and other notes should be shared with any health professional you see.

Many people keep copies of their medical records in a folder which ensures that you keep key facts about your cancer treatment in the one place and should include:

  • the date you were diagnosed and the type of cancer you were treated for
  • pathology report(s) that describe the type and stage of cancer
  • places and dates of specific treatment, such as:
    • details of all surgeries
    • the sites and total amounts of any radiation therapy
    • the names and doses of chemotherapy and all other drugs taken during treatment
    • the results of key lab reports, x-ray reports, CT scans, and MRI reports
    • details of any other treatment and medications prescribed
  • a list of signs to watch for and possible long-term effects of treatment
  • a current list of drugs that you have been prescribed for your use post treatment, their names, dosage amounts and purpose
  • contact information for all health professionals involved in your treatment and follow-up care
  • details of any problems that may have occurred during or after your treatment.
  • information about supportive care you received (such as emotional support)

Both you and your doctor need information to manage your care. Be sure to tell your doctor if you are having trouble doing everyday activities or any health issues you are having, such as:

  • new symptoms
  • pain that troubles you
  • physical problems that get in the way of your daily life or that bother you, such as fatigue, trouble sleeping, sexual problems, or weight gain or loss
  • other health problems you have, such as heart disease, diabetes, or arthritis
  • medicines, vitamins, or herbs you are taking and other treatments you are using
  • emotional problems such as anxiety or depression, that you may have now or had in the past
  • changes in your family’s medical history, such as relatives with cancer
  • things you want to know more about, such as new research or side effects

PALLIATIVE CARE

Palliative care usually supports people who have advanced kidney cancer and need help to live without pain and distress and is not just for people who are about to die. This type of treatment is particularly important for people with advanced cancer as it helps improve people’s quality of life by alleviating symptoms of cancer, without trying to cure the disease. Often treatment is concerned with pain relief and stopping the spread of cancer, but it can also involve the management of other physical and emotional problems.

SUPPORT SERVICES TO THINK ABOUT

Sometimes you may find that your friends and family may have trouble dealing with their feelings and may feel so uncomfortable that they avoid you. This can make you feel very lonely. Try reaching out to close members of your family, or make contact with a good friend and talk with them about how you are feeling.

During your recovery, there could be services available through local councils. There are also organisations and groups that can provide you with information and support.

Talk to your health team, contact your nearest community health centre, or talk with your doctor, to help you locate any of these services if you need some extra help:

Home support and services: if you need help, some home care services and support can be obtained through local government agencies or your local council e.g. a local district nurse or physiotherapist may be able to come to your home. You can also arrange with your local pharmacy to deliver your medications when you are unwell. You may be able to get help with housework or to tidy up your garden whilst you are unwell.

Pain Clinics (also called pain and palliative care services): offer access to health professionals from many different fields, specially trained in helping people get relief from pain.

Oncology Social Worker: are trained to counsel you about ways to cope with treatment issues related to your cancer and can connect you with services in your area.

Survivor Wellness Programs: are for people who have finished their cancer treatment and are interested in redefining their life beyond cancer.

Family Support Program: your whole family may be involved in the healing process and may wish to take part in therapy sessions with trained specialists who can help you talk about problems, learn about each others needs, and find answers.

Physiotherapist: can teach you about proper exercises and body motions that can help you gain strength and move better after treatment. They can also advise you about proper postures that help prevent injuries.

Individual counselling: trained mental health specialists can help you deal with your feelings, such as anger, sadness, and concern for your future.

Couples counselling: you and your partner can work with trained specialists who can help you talk about problems, learn about each others needs and find ways to cope. Counselling may include issues related to sex and intimacy.

Genetic counselling: trained specialists can advise you on whether to have genetic testing for cancer and how to deal with the results. It can be helpful for you and for family members who have concerns about their own health.

Vocational Rehabilitation Specialist: if you have disabilities or other special needs, these specialists can help you find suitable jobs. They offer services such as counselling, education and skills training and help in obtaining and using assistive technology and tools.

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Kidney Cancer Support Service – 1800 454 363or email kidneycancer@kidney.org.au if you have questions about kidney cancer

You may wish to refer to and download our summary Kidney Cancer Fact Sheet or other Kidney Health Education Resources

Updated 12 December 2013