Australian Survivorship Centre A Richard Pratt Legacy

Surviving cancer: information for consumers

Follow-up of survivors of

This fact sheet is for people who Potential issues • advice about preventing new have completed treatment for early and reducing your risk As a breast cancer survivor, you may of your cancer recurring. stage breast cancer. It explains have physical, emotional, social and why follow-up appointments are practical concerns after completing If cancer does come back, it tends to important and possible effects from treatment. Care from your health care happen within 5 years after diagnosis. team should address all of these issues. Sometimes, this can happen more than treatment. You may know that 20 years after the first diagnosis. when breast cancer is found and Your medical care should include: treated early, the outcome is often • good communication between Follow-up frequency very good. your cancer specialist and GP Everyone who has been treated for about your health needs In Australia: breast cancer should be followed up. • looking for any signs of cancer spread, • 5-year survival for women with breast Your doctor will use breast checks, recurrence or second primary cancers cancer is about 87.7%. This means that for mammography and possibly other a women treated for breast cancer, nearly • treating any side effects or late effects scans to look for signs of recurrence. 88 will still be cancer free 5 years later. from your cancer and treatment • 10-year survival is about 79.4%. This means that for every 100 women treated for breast cancer, nearly 80 will still be cancer free 10 years later. For some women treated for early stage breast cancer, there is a small chance the cancer could come back (recur). Your doctor will schedule regular follow-up appointments to check on your health and look for any signs of breast cancer recurrence. Your doctor will also talk to you about possible effects from your breast cancer or treatment. Australian Cancer Survivorship Centre A Richard Pratt Legacy

Surviving cancer: information for consumers

Example follow-up schedule for women treated for early breast cancer

Type of follow-up Years 1 and 2 Years 3–5 After 5 years History (talking about your health) Every 3–6 months Every 6–12 months Every 12 months and physical examination Mammography (if you had breast conserving therapy) Every 12 months Every 12 months Every 12 months Chest X-ray, bone scan, CT, PET or MRI scans, blood These tests may be ordered if your doctor suspects count, biochemistry and tumour markers recurrence but are not recommended routinely

Note: this schedule may vary, for example if your doctor suspects recurrence or if you have another illness.

When to contact your doctor Coordinating follow-up Possible long-term effects and Contact your doctor if you notice a It is very important that your follow-up late effects of treatment breast change or any other symptom is properly coordinated and you do not Not everyone will have long-term or late that concerns you. You don’t have to attend excessive appointments. effects. If you have had treatment for breast wait for your follow-up appointment. Your specialist and GP should consult cancer, this does not mean you will get all Contact your doctor if you notice: and decide on who will coordinate your or even any of the effects described here. follow-up. Long-term and late effects will vary depending • unexplained persistent changes in on the stage of your breast cancer as well as your general condition (such as loss of Ideally, this will be documents on a the treatment you had. Some effects from weight, loss of appetite, loss of energy) survivorship care plan. If you don’t have a treatment for breast cancer are more common • unexplained persistent or discomfort survivorship care plan, please ask your GP, than others. Some are rare. Some will become specialist or cancer nurse who should be less severe over time and disappear completely • any symptom that concerns you. able to provide this for you. whilst others may be permanent. Please speak to your doctor if you have any concerns about effects from your cancer treatment. Australian Cancer Survivorship Centre A Richard Pratt Legacy

Surviving cancer: information for consumers

Possible long-term effects and late effects of treatment Further information related All common cancer treatments (surgery, chemotherapy, hormone therapy, Trastuzumab to effects of treatment for (Herceptin®) or radiotherapy) can cause both long-term and late effects. Possible long-term breast cancer and late effects following treatment for breast cancer and their causes include: • Your doctor will tell you if there is a risk of heart problems due to chemotherapy. Your doctor will Long-term and late effects Cause recommend regular long-term checks of your heart and advise you about (extreme tiredness that May be associated with smoking, alcohol, exercise and diet. isn’t helped by sleep or rest) or depression • Lymphoedema may occur years after treatment. If your underarm lymph Can be caused by some chemotherapy drugs Heart problems nodes were removed during surgery and Trastuzumab (Herceptin®) or affected by radiotherapy, you need to take special care to avoid injury to Can occur when underarm lymph your hand and arm. Be alert for any Lymphoedema (persistent nodes are surgically removed or arm changes and report these. swelling in the limb) treated with radiotherapy • A small number of women have a genetic change called a ‘BRCA Due to chemotherapy, radiotherapy to ’. If this affects you and your Premature menopause ovaries or surgical removal of ovaries, family, your doctor will discuss referral tamoxifen or aromatase inhibitor drugs to a family cancer clinic for advice about prevention and screening. Endometrial cancer, stroke Rare complications of tamoxifen • You may have particular needs if or blood clots your fertility has been affected, if you require contraception or find it Pain Surgery or radiotherapy difficult in dealing with changes in sexuality. Your doctor may suggest Premature menopause or vaginal that you see a fertility or menopause dryness from treatment specialist or sexual counsellor. Sexual problems Cancer treatment can affect a person’s • Depression, anaemia, pain and an libido, self-image and sexual confidence underactive thyroid can all contribute to fatigue and can be treated. Due to chemotherapy, radiotherapy to • If you are at risk of low bone density Fertility problems ovaries or surgical removal of ovaries, your doctor may suggest having tamoxifen or aromatase inhibitor drugs regular bone scans. Your doctor may also discuss prevention strategies such Due to chemotherapy, high dose as weight-bearing exercise, giving Bone density problems, steroids, radiotherapy to ovaries or up smoking, and treatment with increased risk of fractures surgical removal of ovaries, tamoxifen calcium and vitamin D supplements. or aromatase inhibitor drugs Some people may be prescribed bisphosphonate drugs (medications ‘Chemo brain’ or ‘Chemo It is common in people who have had that prevent loss of bone density). fog’, which may include poor chemotherapy but is not well understood • You may begin or continue to have concentration and forgetfulness fears about the future. You may be feeling worried, sad or unable to get Unhappiness with changes Mastectomy (with or without through the day. Many of these feelings in appearance reconstruction) or other breast surgery are normal when adjusting to life after a cancer diagnosis and usually lessen May occur rarely due to A second primary cancer with time. You may find it helpful to radiotherapy or chemotherapy attend a support group and/or speak with a fellow survivor. If you feel low in mood or depressed for long periods, it is very important that you speak to your doctor and get treatment. Australian Cancer Survivorship Centre A Richard Pratt Legacy

Surviving cancer: information for consumers

Getting help and support Further information Any change in how your body looks, feels or functions can be very hard to deal Lymphoedema Association of Victoria The information on this site is divided into four sections: Health Professionals, with. Certain late or long-term effects may The Lymphoedema Association of Victoria is a non-profit organisation working Survivors, Family & Friends and be annoying but manageable. However Research. There are links to useful others can be more severe and have towards increased awareness, education, research and support for those with information and reliable websites. a big effect on your quality of life. lymphoedema. Phone: 1300 852 850 www.petermac.org/cancersurvivorship There are things that can be done to help www.lav.org.au control or treat many long-term and late Breast Cancer Network Australia effects from treatment for breast cancer. Cancer Australia The role of this website is to ‘empower, It is important you find the right support In July 2011, National Breast and Ovarian inform, represent and link together’ to help you manage and cope with any Cancer Centre (NBOCC) and Cancer Australians personally affected by breast cancer. BCNA work to ensure side-effects you have or may develop. Australia amalgamated to form a single national agency to provide leadership in that Australians diagnosed with breast For you and your partner, there may be cancer control and improve outcomes for cancer and their families receive the very relationship effects, including issues about Australians affected by cancer. They provide best information, treatment, care and changed roles, fear of recurrence of breast comprehensive, easy to read information to support possible, no matter who they are cancer and fear of ‘being a burden’. help women with breast or ovarian cancers or where they live. Freecall: 1800 500 258 understand their diagnosis, treatment and www.bcna.org.au Survivors who go through and beyond support options. Freecall: 1800 624 973 cancer treatment without partners www.canceraustralia.gov.au Cancer Council or close family and friends may Contact the Cancer Council Helpline experience great loneliness. The Australian Cancer Survivorship on 13 11 20 for information about side Centre – A Richard Pratt Legacy effects from treatment, or any other Speak with your doctor or specialist nurse questions you have about cancer about how you are feeling. Support The Australian Cancer Survivorship Centre – A Richard Pratt Legacy is a web-based and surviving cancer. Cancer Council groups and/or contact with a fellow centre. It is funded by Peter MacCallum booklets include ‘Living well after survivor through a service such as Cancer Cancer Centre, The Pratt Foundation and cancer: a guide for cancer survivors, Connect may be helpful. Contact via the the Victorian Department of Health. The their families and friends’. Call the Cancer Council Helpline (13 11 20). Australian Cancer Survivorship Centre aims Cancer Council to find out about Life to help improve services and care for cancer after Cancer forums. Through the Staying well survivors in Australia as well as focusing on Cancer Council Helpline you can speak increased awareness, especially about issues with a cancer nurse: ask about Family Having cancer and treatment often makes that affect survivors after their treatment ends. Cancer Connect and support groups people think about their health in different and other support services that may ways. Some people decide they want to live help you. Cancer Connect is a free phone peer support service that puts a healthier lifestyle than they did before Screening people in touch with others who’ve getting cancer. Some people look for had a similar cancer experience. ways to reduce the chance of their cancer It’s important to have screening www.cancer.org.au coming back and preventing a new cancer for other cancers. developing. It’s a great time to make some • Have regular Pap tests. All of these services may be changes and commit to staying healthy. accessed through their websites • If you are over 50 years, talk to your This includes: doctor about screening for bowel cancer. • having a healthy diet • If you are at increased risk of , your doctor may refer • maintaining a healthy weight you to a family cancer clinic. • stopping smoking You will have mammography as part Australian Cancer Survivorship Centre • increasing physical activity (most of your follow-up. You do not need to A Richard Pratt Legacy people need to do at least 30 minutes respond to invitations from BreastScreen. of moderate-intensity physical activity on most, preferably all, days). In addition: Australian Cancer Survivorship Centre These simple measures may help to • Have your usual cholesterol, blood Mailing address – Locked Bag 1, prevent secondary, recurrent or a pressure and blood glucose checks. A’Beckett Street, Melbourne VIC 8006 new primary breast cancer. They may • Have regular dental examinations. Phone: 03 9656 5207 also reduce many of the physical and Email: [email protected] • Take care to protect your skin from emotional effects of cancer treatment. the sun. www.petermac.org/cancersurvivorship