Metastatic breast cancer with secondary tumours: advice for patients and relatives Metastatic breast cancer means that cancer cells from the original cancer in the breast spreads to other parts of the body, where they form secondary, or metastatic, tumours. These new tumours most often occur in the skeleton, liver or lungs. Metastatic breast cancer is sometimes called recurrent or chronic cancer. Localized or regional recurrence Breast cancer that recurs in the same breast is called a localized recurrence. If the cancer has spread to the lymph nodes close to the breast, this is called a regional recurrence. These require renewed treatment, but are not the same as metastatic breast cancer. Metastatic breast cancer Metastatic breast cancer can be treated by means of several different methods. The goal is to reduce the metastatic tumours, inhibit tumour development, and prolong life. There are also treatments that reduce pain, nausea and other symptoms of illness. There are women who have lived more than 20 years and enjoyed good quality of life, despite their breast cancer having metastasized. Psychological reactions Living with metastatic breast cancer often leads to worry, stress and anxiety. These are completely natural reactions to a serious illness. Worry can express itself in many ways. You can become sensitive, easily annoyed, or experience insomnia. You may think about how things will be in the future, and easily get into gloomy thoughts about your children, partner, relatives or friends. Don’t hesitate to seek help. Things will feel easier if you can talk about your thoughts and feelings. 2 (5) Certain hospitals, as well as local patient associations, offer group discussion sessions for women with metastatic breast cancer. The social worker/counsellor at your hospital has additional information and can serve as a support. A meeting with a psychologist can give you tools to deal with your life situation. The Swedish Breast Cancer Organisation (BRO) has local chapters with trained representatives who can provide you with support and valuable advice. It can be beneficial to talk about how you’re feeling with someone other than a friend or family member. And if you’re living alone, it can feel secure just to have someone to talk with. There are also representatives who speak languages other than Swedish. Many patients suffer from depression. Signs of this include feeling down much of the day, a sense of hopelessness, and loss of interest in everyday activities. Some people lose all their energy. As depression is caused by a chemical imbalance in the brain, it does not help to try to "pull yourself together.” You need help, and that’s why it’s important to speak to others about how you’re feeling. Your doctor can prescribe antidepressant medications that help to correct the chemical imbalance in your brain. Cognitive behavioural therapy is also effective in the treatment of depression. This therapy helps you understand your feelings and behaviour in order to achieve a better balance in life. Interpreters Persons who have difficulty speaking or understanding Swedish are entitled to an interpreter free of charge in their contacts with the healthcare system. The interpreter has a duty of confidentiality, as do all employees of the healthcare system. Contact nurse You have a right to a personal contact nurse who will be your primary contact person with the healthcare system. The contact nurse is required to ensure that you can participate and influence your treatment, and inform you of what can Bröstcancerföreningarnas Riksorganisation 2012-08-20 English – Engelska 3 (5) be expected in your treatment, as well as actively keep track of all appointments for referrals, and test results, doctor’s appointments, etc. The contact nurse will also ensure that you receive a treatment plan in writing, and provides guidance in cases where you need rehabilitation or psychological or social support, so you can live as good a life as possible. The assistance provided may include conversational therapy, physiotherapy, stress management, yoga, and practical support with devices or transportation services. Written treatment plan You have a right to an individual treatment plan in writing, which describes the treatment planned. Medication that affects the tumour Many women with metastatic breast cancer live a good life for many years, while undergoing many different treatments. There are different medications used to inhibit the illness. These medications can also be given in different combinations. • Cytostatics – often called chemotherapy. There are many varieties of cytostatics, and they can be administered both as infusions (IV) and as pills. Sometimes, several cytostatics are combined to maximize the effect. Sometimes these are known as cell toxins. • Hormone treatment – pills or injections for the treatment of women with hormone-positive tumours (about 8 of 10 women have hormonepositive tumours). Sometimes, this is also known as endocrine treatment. • mTOR-inhibitors – the latest addition in the treatment of solid metastatic hormone-positive breast cancer, these are administered as pills in combination with hormonal treatment. This medication blocks a protein (mTOR) that is needed for the growth of cancer cells. • Antibodies – belongs to the new generation of cancer medications, and is administered as infusions (IV) or through injections to certain patients. They are used most often for the treatment of a specific type of breast cancer, HER2-positive breast cancer, and are often combined with cytostatics. Bröstcancerföreningarnas Riksorganisation 2012-08-20 English – Engelska 4 (5) Try new treatments – referral to studies at other hospitals For many cancer patients, the opportunity to participate in studies in which new treatments are tested can mean new hope. These studies can relate to completely new medications, or assess the effectiveness of various combinations of medications. Patients that participate in studies are always monitored extra carefully through tests, additional hospital visits, and other forms of monitoring. Although it can be difficult to obtain information on which studies for the treatment of metastatic breast cancer are currently being conducted in Sweden, the best thing is to ask your doctor. If you satisfy the criteria to participate in a given study, you can request to visit the hospital that is conducting that study. Your doctor will then write a referral. Other treatment In addition to the medication directed to the tumours, women with metastatic breast cancer can also undergo other types of treatments: • Bisphosphonates – used for skeletal metastatic tumours to strengthen the skeleton and reduce pain. • Nausea and vomiting were previously common side effects of cytostatic treatments. There is now excellent medication for nausea, so tell your contact nurse or doctor how you’re feeling. • Morphine preparations are the basis of pain reduction in cancer. Morphine is very effective for most people. • Constipation affects almost everyone who is being treated with morphine. Because of this, morphine is always combined with a laxative. • Radiation therapy is administered primarily to prevent relapses in earlystage breast cancer, but is also administered in metastatic breast cancer in order to achieve fast pain relief in patients with skeletal metastatic tumours. • Surgery is always part of the treatment of early stage breast cancer, but can also be used when the tumours have spread to the skeleton. The purpose is then to stabilize the skeleton and attempt to prevent fractures. Bröstcancerföreningarnas Riksorganisation 2012-08-20 English – Engelska 5 (5) A new medical assessment – second opinion If you feel uncertain about whether you are getting the best treatment, of if you are dissatisfied with your treatment, you can request that a different doctor make a medical assessment, called a second opinion. This right is guaranteed by law. A medical decision can mean a great deal for your quality of life. If you wish to have a new medical assessment, speak with your doctor or contact nurse, or if you feel that this is difficult, contact the hospital social worker. In order to get a second opinion from a doctor in a different county council area, you need a specialist care referral; otherwise, you will have to pay for the costs. Bröstcancerföreningarnas Riksorganisation – www.bro.se Bröstcancerföreningarnas Riksorganisation 2012-08-20 English – Engelska