ADVANCED KIDNEY CANCER Page 1/6 WHAT IS KIDNEY CANCER? Kidney cancer is a type of cancer that arises from the cells of the kidney. Another name for kidney cancer is “renal cell carcinoma”. The most common type of kidney cancer is “clear cell carcinoma”. Kidney cancer is caused by changes in DNA in cells within the kidney. Our bodies are always making new cells: for us to grow, to replace worn-out cells, or to heal damaged cells after injury. This process is controlled by certain parts of the DNA called “genes”, and all cancers are caused by changes to genes. Changes to genes that cause cancer usually happen during our lifetime, although a small number of people inherit these changes from a parent. The average age of people found to have kidney cancer is 55 years. Kidney cancer is rare in children. Like most cancers, kidney cancers begin small and can grow larger over time. Kidney cancers usually grow as a single mass but more than one tumour may occur in one or both kidneys. These lumps can be benign (not cancerous) or malignant (cancerous). Benign lumps do not spread to other parts of the body. If kidney cancer is treated in its early stages it is more likely to be cured. If kidney cancer cells spread, they may spread into surrounding tissue or to other parts of the body. When kidney cancer cells reach a new organ or bone they might continue to grow and form another tumour (a “metastasis”) at that site. • Primary cancer is a cancer that has formed in an organ (in this case the kidney) but has not spread elsewhere. Other words like “localised” or “early” apply if the cancer has not spread. • Secondary cancers or "metastases" or “metastatic” or “advanced” cancer is a cancer that has spread from somewhere else in the body. It is very rare for a cancer from another part of the body to spread to the kidney. WHAT ARE THE RISK FACTORS? Some factors that may increase the risk of developing kidney cancer include: • Age: Like most other cancers, kidney cancer most often arises in older people, usually seen in adults over 40. • Smoking: People who smoke have almost double the risk of developing kidney cancer than non-smokers. This additional risk reduces to zero over time, if the person stops smoking. Quitting at any time, at any age is a great idea. It’s never too late. • Gender: Men are at higher risk of developing kidney cancer than women. • Obesity: Being very overweight or obese appears to be associated with an increased risk of developing kidney cancer in both men and women. It is thought that excess body fat may cause changes in certain hormones, which can lead to kidney cancer. • High blood pressure (hypertension): High blood pressure has been found to be a risk factor for kidney cancer. Advanced Kidney Cancer Page 2/6 • Kidney stones: Having kidney stones is associated with a higher risk of developing kidney cancer in men. • Occupational exposure to toxic compounds: People regularly exposed to certain chemicals including asbestos, lead, cadmium, dry-cleaning solvents, herbicides, benzene or organic solvents, and petroleum products, as well as people who work in the iron and steel industries may have an increased risk of kidney cancer. • Long-term dialysis and acquired cystic disease: Being on dialysis treatment over a long period of time may cause kidney cysts. Kidney cancer may develop from the cells that line these cysts. • Family history of kidney cancer: People who have family members with kidney cancer, especially a sibling, are at increased risk. This can be due to genes that pass down from parent to child. Only 3-5% of kidney cancer is caused by inherited genes. Specific genetic and hereditary conditions: There are several genetic and hereditary conditions which, if inherited, may make it more likely for benign or malignant cells to develop. • WHAT ARE THE SYMPTOMS OF KIDNEY CANCER? Many kidney cancers do not cause symptoms; they are found incidentally during a scan, X-ray or ultrasound that was ordered for another problem. When kidney cancer does cause symptoms these can be non-specific, that is, many of the symptoms that kidney cancer might cause can be mistakenly attributed to other causes, like a urine infection or a muscle twinge. Most kidney cancers do not cause pain until advanced stages when they have started to spread. Many people with kidney cancer are not aware they have a tumour until they have a test for another health problem. However, always talk to your doctor if you are experiencing any of these signs or symptoms: • • • • • • blood in the urine or changes in urine colour to dark, rusty or brown (haematuria), lower back, abdominal or flank pain which is not linked related to an injury, weight loss, newly developed high blood pressure, constant tiredness, or fever or night sweats which are not linked with any other conditions. HOW IS KIDNEY CANCER DETECTED? Kidney cancer is most often detected by chance, but if you have some of the symptoms listed above, speak with your doctor. As with all cancers, early detection can improve the chance of successful treatment and long-term outcomes. Your doctor may use different approaches, tests and investigations to diagnose kidney cancer, depending on the symptoms you display. The most common tests that may be ordered include: • Ultrasound: A type of scan where a probe slides over the skin and where the x-ray team looks for irregularities in the kidney and other organs. • Scans: Computer tomography (CT) scans or magnetic resonance imaging (MRI) scans can be used to get detailed pictures of organs in the body. This can help characterise a lump in the kidney, if one is found. • Chest x-ray: An x-ray of organs and bones within the chest. • Urine test (urinalysis): The most common symptom and sign of a kidney tumour is blood in the urine. This test can also detect other irregularities in the urine such as protein. • Blood tests: Chemical tests of the blood can detect findings associated with kidney cancer. • Intravenous pyelogram (IVP): A dye is injected into a vein and x-rays are used to map its path through the kidneys and into the urine. Advanced Kidney Cancer Page 3/6 • Cytoscopy: A test that checks the bladder and urethra for cancers, using a telescope with a lens and a light which is placed into the bladder through the urethra. • Bone scan: A small amount of radioactive material is injected into a vein and travels through the bloodstream to the bones so that the scanner can detect if cancer has spread to the bones. DIFFERENT TYPES OF KIDNEY CANCER Kidney cancer can be subdivided into several different types based on the appearance of the cancer cells under a microscope and other genetic factors. The type of kidney cancer is not usually important for surgery, but can be very important if more treatment is needed. Different levels of aggressiveness of cancer can also be described within each type of kidney cancer. This helps understand the cancer and plan follow-up care. The main subtypes are: • Clear cell carcinoma: The most common form of renal cell carcinoma, accounting for about 75% of people with kidney cancer. When viewed under a microscope, the individual cells that make up clear cell renal cell carcinoma appear empty or clear. • Papillary cell carcinoma: About 10% to 15% of people have this form of kidney cancer. These cancers form little finger-like fronds called papillae (hence “papillary”). • Chromophobe carcinoma: Accounts for about 5% of cases. The cells of these cancers are large and pale, and have certain other distinctive features. • Translocation carcinoma: A type of kidney cancer that occurs more often in children and young adults. In some cases, these can occur in people with autoimmune disorders or those who have previously received chemotherapy for malignancy or bone marrow transplant preparation. • Sarcomatoid carcinoma: Several of the other subtypes of kidney cancer can turn into “sarcomatoid” kidney carcinoma. The appearance of the cancer cells under the microscope is more aggressive and disorganised. • Urothelial carcinoma: Also called transitional cell carcinoma (TCC) are cancers can form in the kidney from the lining of the drainage system of the kidney, rather than the cells of the kidney itself. These cancers are very similar to bladder cancers. DIFFERENT STAGES OF KIDNEY CANCER Once kidney cancer has been diagnosed by looking at the biopsy or at the cancer after it has been cut out of the body, the next step is to determine the “stage” of the cancer. The stage of a cancer describes the size of the cancer and whether or not it has spread. This helps to guide treatment and can help plan long-term follow-up care. When staging is based on clinical assessment alone, it is referred to as the clinical stage. Microscopic examination of the affected tissue determines the “pathologic” stage. A staging system is a standardised way in which the cancer care team describes the extent of the cancer. Your doctor will determine the "stage" of your kidney cancer based on: • the size of the tumour - “T-stage”, • spread of the cancer to the nearby lymph nodes - “N-stage”. (A lymph node is like a police station; it is a small round gland that makes up part of the immune system and houses white blood cells (the police officers) that remove bacteria, cancer cells and foreign particles from the body. Unfortunately cancer cells like to spread to lymph nodes) • if there are signs of the cancer having spread to other organs, i.e. metastasised to, for example, liver, lung, bone - “M-stage”. The four main stages of kidney cancer below are based on this TNM staging system, which is one of the methods for ‘staging’ kidney cancer in Australia. Advanced Kidney Cancer Page 4/6 Stage 1: The cancer is only within the kidney and has not spread. The cancer is less than 7cm in size. If the cancer can be removed, it is most likely to be cured with surgery. 9 out of 10 people will be alive and free of the cancer at five years after an operation. Stage 2: The cancer is larger than 7cm but is still confined to the kidney and has not spread outside of the kidney. Surgery is a good treatment option. The five year survival rate is still very high after surgery for stage 2 kidney cancer. Stage 3: The kidney cancer has moved nearby outside the kidney but has not spread to distant organs. For example, the cancer might have spread into the fat around the kidney, into the blood vessel coming out of the kidney, or into lymph nodes near the kidney. Surgery is often the right treatment. The chance of being cured by surgery is lower, but not zero. Stage 4: The kidney cancer has spread widely outside the kidney; to the abdominal cavity, to the adrenal glands, to distant lymph nodes or to other organs, such as the lungs, liver, bones, or brain. This stage of cancer is very unlikely to be cured, but various treatments can help. TREATMENT OF KIDNEY CANCER Your doctors will discuss treatment choices, the expected results, and will work with you, your family and supporters to develop a plan that fits your situation. Your treatment will depend on the type of kidney cancer, your general health and the stage of the cancer. All treatment has benefits and side effects, which need to be discussed with your cancer care team. For information relating to localised kidney cancer, please refer to our Localised Kidney Cancer fact sheet. TREATMENT OF ADVANCED KIDNEY CANCER In people with advanced kidney cancer, where the cancer has spread to distant organs, the cancer is usually not curable. The goal of treatment is therefore to make life as long and as normal as possible. Combinations of different treatments may be recommended by different doctors, including your urologist and other cancer specialists, such as medical oncologists, who prescribe anti-cancer medications, and radiation oncologists, who treat people with radiation. This team of specialists will work with your family doctor to help you control your symptoms and live as normal a life as possible. Treatments for advanced kidney cancer include: Observation: In some people in whom the kidney cancer has spread, the cancer might be growing so slowly that the right first option is to watch carefully. This is especially the case when the cancer has been discovered by accident. If the cancer starts to grow quickly or cause symptoms then active treatments will be recommended. A small percentage of patients might live without problems from the cancer for a very long time, so your doctor might advise you to observe for a short period of time, in case this applies to you. Clinical trial: A clinical trial is a way of testing new treatments or old treatments used in a new way. Clinical trials are not right for every person; not every person is right for a clinical trial. If a clinical trial is available, it can be an interesting opportunity to consider. One always hopes that the new treatment will improve on standard treatments, but sometimes it works no better than before. Talk to your doctor to find out about clinical trials or visit www.kidneycancer.org.au to find a list of Australian kidney cancer trials. Surgery: Surgery does not usually cure kidney cancer that has spread, but it may be recommended to prevent symptoms and problems from the cancer. However, if the kidney cancer has only spread to a few other spots, and your health is otherwise good, there is some evidence that removing the primary cancer in the kidney improves survival and helps other treatments work better. This “cytoreductive” nephrectomy would be performed by your urologist. In a very small number of people, the cancer spreads to only one or two places; if this is the case, it can be possible to try to cut out all the cancers (a “metastatecomy”). Advanced Kidney Cancer Page 5/6 Tablets that block blood vessels: Chemotherapy is not used in kidney cancer. The current medical treatment for kidney cancer is based on tablets that stop blood supply to the cancer, which slows or stops the growth of the tumour, and sometimes causes it to shrink. These tablets target specific signals within the cancer, and are also called “targeted therapies”. Other names for this group of drugs are “antiangiogenic therapies” and “tyrosine kinase inhibitors”. These tablets are not chemotherapy, but they do have side-effects. Tablets that block cancer’s growth: A second group of medicines for kidney cancer works by blocking a different signal (“mTOR inhibitors”), but because they are not as potent, they are used only if the tablets that block the blood supply have stopped working. In Australia, these tablet treatments are reimbursed by the PBS, but only for people with the “clear cell” variant of kidney cancer; treatment for the rare types of kidney cancer is more challenging. Immunotherapy: Your body's immune system is responsible for fighting viruses (like the common cold), bacteria, but can also attack cancer cells. Immunotherapy takes advantage of this and works by driving your immune system to fight these cancer cells. In the past, one kind of immunotherapy was used in a small number of people with kidney cancers. This treatment was high dose injections of interferon or interleukin, hormones which are naturally produced in your body. This kind of immunotherapy was dangerous, had many side-effects, only helped a small number of people and was expensive, so it is not used as a standard treatment in Australia. New kinds of immunotherapy have shown some promising results, but are still in the clinical trial phase, which means they are not freely available in Australia for the treatment of kidney cancer. If a clinical trial with these new immunotherapy drugs (PD1 or PDL1 antibodies) is available, talk to your doctor to find out if this trial is right for you. Radiation therapy: Uses high-energy radiation to kill cancer cells. Radiation can be very helpful if the cancer causes a lot of problems in one location, e.g. cancer in the bone causing pain, cancer in the kidney causing bleeding, cancer in the brain causing swelling. Radiation is predominantly used as a means of controlling symptoms. Palliative care: Palliation doesn’t mean the “end of the road” or that the cancer is terminal. Palliative care is all the treatments that your team recommend to improve your symptoms and improve your quality of life. Your family doctor, your medical oncologist and your other doctors will help you with this. Sometimes palliative care physicians and nurses are consulted, and they can often provide specialised advice. Palliative treatment can improve quality of life by alleviating symptoms associated with advanced cancer. ALTERNATIVE OR COMPLEMENTARY THERAPIES Alternative therapies might be proposed by well-intentioned friends, relatives or internet web-pages, but they are called “alternative” because they have not been scientifically proven to shrink cancers or help patients. Worse still, they may have been proven not to help or to even cause harm. Examples of unhelpful or harmful alternative treatments include mega-dose vitamins, herbal products or extreme diets. A good website to check if an alternative therapy has been debunked is www.quackwatch.org Some alternative therapies can interfere with medicines normally prescribed by a doctor, causing harm to the patient. So it’s important to inform your doctor or nurse if you are considering these therapies. On the other hand, complementary therapies can “complement” established medical treatments, improving quality of life and symptoms. These might include mindfulness meditation, relaxation techniques, homeopathy, remedial massage therapy, psychotherapy, prayer, yoga, acupressure and acupuncture. If there were any chance that the kidney cancer has spread to bones, chiropractic or osteopathy would not be a good idea. HOW WILL MY CANCER TREATMENT BE ORGANISED? Finding out that your cancer has spread raises many questions and challenges for patients and their families. You may need ongoing care with different doctors, nurses and allied health professionals. In some hospitals cancer care coordinators are available to help you with planning and treatment. Your Advanced Kidney Cancer Page 6/6 GP (General Practitioner) will also be invaluable to help manage symptoms, coordinate referrals and provide other assistance. You may find it useful to: • Take a family member or loved one with you when you see your health care team. They might remember questions that you forgot in the moment and can help you review the information after your appointment. • Before an appointment with your health professional, write down any questions you may have. Rank your questions in order of importance in case you run out of time during the consultation. • Consider recording discussions with your doctors so that you can replay and check their advice and plans. • Use a diary to plan appointments and record information; you can also keep copies of notes and results to show different health care team members. • Try using one of the smartphone applications (“apps”) to help you manage your cancer, such as the Cancer.Net app (available on iTunes or GooglePlay). SUPPORT SERVICES If you have questions about any aspect of kidney cancer, contact our Kidney Cancer Support Service – 1800 454 363 or email kidneycancer@kidney.org.au Kidney Health Australia also has a forum called Kidney Cancer Connect, where you can relate your stories, ask questions, share practical information and, most of all, support each other. You can access Kidney Cancer Connect at www.kidneycancer.org.au/forum WHO CAN I CONTACT FOR MORE INFORMATION? The Cancer Council Helpline (13 11 20) is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. The service also provides information regarding support groups and networks, education programs, practical assistance, and accommodation. Anyone can call Cancer Council Helpline – cancer patients, people living with cancer, their families, carers and friends, teachers, students and health professionals. Call 13 11 20 or visit www.cancer.org.au for more information. For more information about Kidney or Urinary health, please contact our free call Kidney Health Information Service (KHIS) on 1800 454 363. Alternatively, you may wish to email KHIS@kidney.org.au or visit our website www.kidney.org.au to access free health literature. This is intended as a general introduction to this topic and is not meant to substitute for your doctor's or Health Professional's advice. All care is taken to ensure that the information is relevant to the reader and applicable to each state in Australia. It should be noted that Kidney Health Australia recognises that each person's experience is individual and that variations do occur in treatment and management due to personal circumstances, the health professional and the state one lives in. Should you require further information always consult your doctor or health professional. Kidney Health Australia gratefully acknowledges the valuable contribution of Dr. Craig Gedye, Medical Oncologist, Calvary Mater Newcastle and University of Newcastle in reviewing this information. Revised March 2015 If you have a hearing or speech impairment, contact the National Relay Service on 1800 555 677 or www.relayservice.com.au. For all types of services ask for 1800 454 363.
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