Patient Information English 4 Muscle-invasive bladder cancer The underlined terms are listed in the glossary. What is muscle-invasive bladder cancer? The most common type of bladder cancer is non muscle-invasive, confined to the bladder lining (stages Ta and Tis) or the connective tissue just under the lining (stage T1; tumour stages are described in Leaflet 02, Diagnosis). In most cases, these tumours are benign and rarely spread to other organs, so they are usually not lethal. About a quarter of patients diagnosed with bladder cancer have a muscle-invasive form that has grown into the bladder wall (stages T2 T4). This type of cancer has a higher chance of spreading to other parts of the body (metastatic) and is harder to treat. Muscle-invasive bladder cancer needs to be treated aggressively because it can be fatal if untreated. Additional diagnostics Computed tomography (CT scan) is particularly important for diagnosing muscle-invasive bladder cancer. With a whole-body CT scan, done in less than 10 minutes, the physician can tell if the cancer has al- ready grown out of the bladder and into the surrounding fat tissue or adjacent organs and if there are signs of metastases. Enlarged lymph nodes can also be detected, indicating advanced disease and possibly changing treatment decisions. By adding intravenous contrast agent, which is excreted into the urine by the kidneys, the urinary tract above the bladder can be visualized and searched for tumour growth. Prior to treatment, it is essential to evaluate whether the cancer has spread to other organs. If the CT scan indicates that the cancer has spread to your soft (visceral) organs or your bones, additional magnetic resonance imaging (MRI scans) or bone scans can be performed. CT and MRI are used to detect lung and liver metastases. Bone and brain metastases are rare at the time that muscle-invasive bladder cancer is diagnosed. Your doctor will not usually indicate a bone scan or additional brain imaging unless you have specific symptoms that suggest bone or brain metastases. A combination of positron emission tomography (PET scan; uses a radioactive tracer) and CT scan (PET/ CT) is increasingly being used in European centres, although it is not generally available in all countries. PET/CT may improve the ability to detect distant metastases. It is not recommended for staging the blad- page 1 / 11
der tumours because urinary processing of the radioactive tracer makes tumour staging very difficult. Prognosis and risk stratification have (diabetes, heart disease, high blood pressure) are also important. Patients older than 80 years of age have more problems recovering from such an operation. Physicians use special indexed scores to assess the risk of patients undergoing this stressful operation. The long-term prognosis for patients with muscle-invasive bladder cancer is determined by the extent of tumour growth (stage) and aggressiveness (grade, determined by the pathologist). Staging and grading are described in detail in Leaflet 02, Diagnosis. The mainstay of treatment for muscle-invasive bladder cancer is surgical removal of the urinary bladder. To find out if you are eligible for surgical removal of the bladder, work with your physician to consult a multidisciplinary team (for example, surgeon, anaesthesiologist, nurse practitioner, general practitioner, cardiologist). Prior abdominal surgery or radiotherapy makes surgery more difficult but is rarely a reason not to have surgery. Being overweight does not influence survival after surgery but does influence the risk of complications from wound healing. Other factors like your biological age (your body s performance as it ages, measured as performance status or life expectancy) and other diseases that you The terms your doctor may use: Urothelial carcinoma High grade Low grade This term refers to cancer that typically occurs in the urinary system (kidney, bladder, urinary tract) and indicates the type of cancer, which affects urothelial cells as opposed to other types of cells in the urothelial tract. Most bladder cancer is urothelial carcinoma (also called transitional cell carcinoma). Tissue is greatly altered in appearance, indicating aggressive tumour growth. Tissue is mildly altered in appearance, indicating less aggressive tumour growth. page 2 / 11
Treatment options Removal of the urinary bladder The mainstay of treatment for muscle-invasive bladder cancer is the surgical removal of the urinary bladder (radical cystectomy). Before undergoing this procedure, your biological age (performance status), other diseases, and eligibility for chemotherapy before surgery should be assessed. Your doctor has several reasons for recommending removal of the whole bladder: Presence of a muscle-invasive tumour Presence of a tumour that grows aggressively (high grade), that has multiple cancerous areas (multifocal), or that is superficial but recurs after chemotherapy or immunotherapy Failure of or recurrence after a bladder-sparing approach (chemoradiation) or the occurrence of major side effects Symptoms like bleeding or pain in patients whose tumours cannot be removed Removal of the urinary bladder includes removal of the bladder, the endings of the ureters, the pelvic lymph nodes, and adjacent gender-specific organs (the prostate and seminal vesicles in men; the entire urethra, adjacent vagina, and uterus in women). Men should be aware that prostate cancer is sometimes found in removed prostates but does not affect longterm survival or treatment. Chemotherapy before removal of the bladder Chemotherapy is administered before bladder removal to potentially shrink the tumour and kill cells that have already entered the blood or lymph nodes. Chemotherapy before the operation is currently recommended for all patients with a muscle-invasive disease. It is also necessary if tumours are large (>3 cm) or if signs indicate that cancer has spread to the lymph nodes (metastatic disease) and the goal is treatment of the disease (versus reducing symptoms for comfort). Whether chemotherapy before an operation is advisable for you needs to be considered by a multidisciplinary board (including an oncologist, a urologist, and a radiologist). Adequate kidney function is necessary. This treatment may have side effects, which are usually well managed by an oncologist. A good response to chemotherapy improves survival but does not change the need for surgery. At present, physicians are unable to identify who will definitely benefit from chemotherapy before removal of the bladder. If necessary, additional chemotherapy may be used after the operation for certain patients with high risk or recurrence, despite the administration of chemotherapy before the operation. Chemotherapy after removal of the urinary bladder If a tumour is large (>3 cm) or if cancer has spread to the lymph nodes (determined by the pathologist), chemotherapy after removal of the bladder is recommended. Cancer that has spread to the lymph nodes indicates systemic disease and must be treated systemically (with chemotherapy). Bladder-sparing treatments A bladder-sparing approach is currently used in a minority of cases worldwide but deserves consideration. Bladder preservation can be achieved at the cost of multiple therapies, including their side effects. With transurethral resection of bladder tumour (TURBT) and radiation, the local tumour should be controlled or treated. With chemotherapy, the cancer cells that might already have spread within in the body (systemic disease) should be eliminated. The goal should be preserving the bladder as well as the quality of life without compromising the outcome for the cancer. Studies have shown good results for bladder-sparing approaches, but you will need to comply with requirements for treatment and follow-up. About a third of page 3 / 11
patients undergo bladder removal after failure of a bladder-sparing treatment. Chemoradiation Radiation therapy combined with sensitizing chemotherapy is a reasonable alternative for certain patients like those who refuse or are not candidates for bladder removal. Evaluation for this approach will consider general fitness (life expectancy), kidney function, prior radiation, prior abdominal operations, and history of other cancers. A consultation with a radiation oncologist is advisable prior to deciding on this treatment. Transurethral resection of bladder tumour If you cannot undergo extended surgery, TURBT is possible if the tumour invades only the inner muscle layer of the bladder. With high recurrence and progression rates, this treatment cannot be considered a good option for controlling the disease long term. Radiotherapy Radiation therapy is an option for preserving the bladder in patients who are not candidates for surgery or who do not want surgery. Results from radiotherapy alone are worse than those from complete removal of the bladder, but if combined with chemotherapy (chemoradiation), acceptable results can be achieved. Side effects include mild to strong irritation of the bladder and digestive tract as well as incontinence, increased risk of infections, and fistulas (abnormal passages that develop between organs). are removed, and then another way to store and regulate the flow of urine must be created. This is called a urinary diversion. The standard operation is performed as an open procedure. It can be done as a minimally invasive operation (laparoscopically) at centres that treat a lot of patients and that have experienced and specialised surgeons, but this approach is considered experimental for bladder removal. It should be performed only in very special cases because it is not currently the standard operation. Ask your doctor if you are interested in more information about laparoscopic bladder removal and its availability in your country. How do I prepare for the procedure? You are admitted to the urology ward 1 day prior to the operation. A nurse or a doctor (this may vary between countries) will talk you through the operation, how to prepare for surgery (pre-surgery) and aftercare (post-surgery). Part of your intestines will be used to create the urinary diversion. It is important that you prepare your gastrointestinal tract and make sure your entire intestine is clean before surgery. Your doctor will advise you in detail about how to prepare for the procedure. You must not eat, drink, or smoke for 6 hours before surgery to prepare for anaesthesia. If you are taking any medications, discuss them with your doctor. You may need to stop taking medications for several days before surgery. Chemotherapy Chemotherapy alone has only limited results and is not recommended as a sole treatment. Chemoradiation may be used as a bladder-preserving treatment or if you are unable to undergo surgery. How is bladder removal performed? Removal of the urinary bladder is performed through an incision in the abdomen (open) with the patient under general anaesthesia (combination of intravenous drugs and inhaled gasses; you are asleep ). The bladder, the endings of the ureters, the pelvic lymph nodes, and adjacent gender-specific organs What happens after the procedure? You will recover for 24 hours in the intensive care unit, where you will be closely monitored. Usually, you will be transferred back to the urology ward the next day. For the first few days after surgery, your blood pressure and temperature will be checked regularly. After approximately 7 days, your urologist will discuss the results from the tissue research with you. During hospitalisation, you will learn how to manage the urostomy or neobladder. Once you have learned how to use and empty the urostomy or internal urine pouch, a date for your discharge will be set. page 4 / 11
Urinary diversion: continent or incontinent It is important to understand the two-step approach to bladder removal. First, the urinary bladder and lymph nodes are removed. Second, the urinary path needs to be diverted. This can be achieved with several techniques. In general we distinguish between diversions that are continent (urine stored in the body) and incontinent (urine collected outside the body). In addition to biological age and other illnesses, quality of life is crucial when deciding on bladder substitution or urinary diversion. To determine which option best suits your situation, you should understand the limitations and side effects of each option. In addition to your personal preference, the ability to physically and mentally handle the diversion is important, as is your social and family support. Incontinent diversion Rerouting ureters through the skin (ureterocutaneostomy) By moving the ureters either together or individually to empty through a new opening in the skin (stoma) at the side of abdomen (Fig. 1), urine can simply exit the body into a stoma bag. This diversion is the most simple. Although it is rarely used, it is safe and feasible for patients who have medically complicated situations (prior operations, palliative care) or who cannot care for themselves after the operation. Major complications are rare, but recurrent infections and tightening of the orifice (stenosis) are common and might require treatment. kidney ureter stoma bladder removed Fig. 1 Ureterocutaneostomy page 5 / 11
Placing a piece of small intestine between the ureters and the skin (ileal conduit) An ileal conduit can be created by placing a piece of small intestine between the ureters and the skin (Fig. 2). This enteric stoma creates more distance between the kidneys and the skin and reduces the risk of infections, which usually enter the body from outside. Another advantage for patients is that this stoma is easier to use and has less narrowing than smaller stomas. Recurring infections remain a complication, along with long-term complications like tightening of the opening, leakage, and formation of stones in the urinary tract (urolithiasis). kidney ureter section of small intestine stoma small intestine rejoined bladder removed Fig. 2 Ileal conduit Continent diversion Creating a pouch or reservoir inside the body (cutaneous urinary diversion) By using small intestine or large intestine and sometimes the appendix, a reservoir is created in the abdominal cavity and then connected to the skin with a valve mechanism. With this low-pressure pouch, urine can be stored within the body. The goal of this procedure is to avoid urine leaking from the body (incontinence) or flowing back to the kidneys (reflux). Voiding happens through intermittent catheterization of the pouch with a small plastic catheter every 2 6 hours. The opening can be anywhere on the lower abdomen or through the navel (umbilicus). If you choose this diversion, your eye hand coordination must be sufficient to catheterize and drain the pouch regularly by yourself. Liver and kidney function must be adequate because reabsorption of urinary components (salts, uric acid, water) by the intestinal lining of the pouch causes extra stress on these organs. Complications include infections, incontinence, hernia, reflux, tightening of the opening, and leakage as well as metabolic and electrolyte imbalances. page 6 / 11
kidney pouch made from small intestine ureter section of small intestine stoma catheter small intestine rejoined bladder removed Fig. 3 Cutaneous urinary diversion Attaching the ureters to the rectum (ureterocolonic diversion) When the ureters are attached to the rectum, the urine is held by the rectal pouch (Fig. 4). The anus and pelvic floor become the organ of continence and must function well. This diversion leads to faecal matter mixing with the urine, so voiding and defecation happen simultaneously. This technique has a high rate of infections, so it is used only under certain circumstances. Short-term complications include recurring infections (including inflammation of the abdominal wall and the kidneys), tightening of the opening to the rectum, and leakage. Long-term complications include incontinence from having to void urgently, bowel irritation, and associated colon cancer. kidney ureter large intestine rectum bladder removed anal sphincter Fig. 4 Ureterocolonic diversion page 7 / 11
Forming a bladder from small intestine (orthotopic neobladder) A new bladder can be constructed from loops of small intestine that are isolated from the digestive tract (Fig. 5). A ball-shaped reservoir is placed in the small pelvis as a substitute for the bladder. The ureters are attached on both sides, and the lower end is connected to the pelvic floor (including the urinary sphincter). This diversion results in a continent reservoir that can hold approximately 250 400 ml (the same as a healthy adult bladder). You will not feel the bladder getting full or the need to void with the orthotopic neobladder, so voiding must be initiated every 2 4 hours around the clock. The neobladder is emptied by relaxing the pelvic floor muscles and contracting the abdomen (Valsalva manoeuvre). Pressing the abdomen with both hands or using an intermittent catheter might help with complete emptying of the neobladder. This diversion requires you to have a good understanding of its requirements and to comply with them. Acceptable renal and liver function, relatively long life expectancy, good mental fitness, and a functional pelvic floor are necessary for this urinary diversion. If you have had prior extensive abdominal surgery or radiotherapy, you should not have this type of diversion. kidney ureter pouch made from small intesttine bladder removed Fig. 5 Orthotopic neobladder page 8 / 11
Support Preparing for a consultation Preparing for a consultation can be very useful. It will help you and your doctor to better address your questions and concerns. It can also help you prepare for treatment and the possible side effects. Here are some ways to prepare: Support after surgery In the first days or weeks after surgery, you may need help with everyday activities. If you can, ask family, friends, or neighbours to help you with things like buying and carrying home food, cooking, cleaning, and gardening. You can also ask your health care team for information about professional home care. Write down the questions you would like to ask the doctor. This will help you remember things that you want to ask. Writing down questions can also help organize your thoughts. If you can, take someone with you to the visit. It is good to have someone to discuss what the doctor said, and you ll probably remember different things. Ask for information about your specific type of bladder cancer. If the doctor uses words you do not understand, ask for an explanation. Tell your doctor what medicines you take, including any nonprescription medicine and supplements. Some of these medicines can affect your treatment. After the consultation: Search the Internet or go to the library for more information about your type of cancer. Be aware that not all information online is of good quality. Your doctor or health care team can point you to reliable websites. Patient organizations can offer support and information. Discuss the possible financial consequences of your treatment with your health care team. They might be able to direct you to people or places where you can get advice about your economic situation or even financial help. If you would like a second opinion from another specialist, you can ask your health care team for a referral. After surgery, it is common to experience fatigue. You might feel more tired than usual, be out of energy, and have trouble concentrating, and it does not get better after you sleep. Most people experience fatigue for 1 2 months after surgery. The following strategies can help you deal with fatigue: Write down things that give you energy and give them priority during the day or week. Get help with household tasks like cooking, cleaning, or gardening. Take short naps several times during the day. Try to be as active as you can. A short walk every day is better than a long walk once a week. When planning social activities like a trip or a visit, keep in mind that you may need time to rest during the day. Discuss this with your family, friends, or caregiver so that you can plan ahead. It is important to tell them when you are feeling tired. Dealing with the side effects of treatment Men suffering from erectile dysfunction after removal of the prostate Women may experience changes in their sex life due to a shortened or narrowed vagina Lifestyle advice It is important to maintain a healthy lifestyle during and after treatment. Find an activity that you enjoy doing. If you have questions about what types of physical activity you can do, ask your doctor to refer you to a physiotherapist. page 9 / 11
Try to eat a balanced diet with a mix of vegetables, some fruit, and dairy. Also include starchy food like bread and potatoes, rice or pasta, and protein-rich food like meat, fish, eggs, or legumes. Try to eat less sugar, salt, and fatty food. If you have any questions, ask your doctor to refer you to a dietician. If you smoke, try to stop. It may help you recover faster after treatment. Psychological support After surgery, you may worry about your prognosis, postoperative voiding, sexual activity, relationships with family and friends, and the impact of cancer on your social or financial situation. It is common to worry about the cancer coming back. Most people who have been diagnosed with cancer, or their loved ones, will probably have these worries and thoughts. If you feel worried, contact your doctor and find out the risk of cancer recurrence. You can also ask the doctor about psychological support if you would like to talk with someone. A patient organization can also offer support. Discuss the possible financial consequences of your treatment with your health care team. They might be able to direct you to people or places where you can get advice about your economic situation or even financial help. A cancer diagnosis can make you look at life in a different way and you may realise you now have different priorities. This can affect your work or relationships and can make you feel disoriented and uncertain. Talk to family and friends and take all the time you need for this process. If you do not feel comfortable addressing these issues with those close to you, you can ask your health care team for a referral to a psychologist. The psychologist can give you the tools to deal with these feelings and help you to realise the changes you want or need. Support for family and friends A cancer diagnosis affects not only the patient but also the people around them. As a loved one, you can offer support in many different ways. Sometimes you can help with practical things like laundry, gardening, or grocery shopping. Cancer treatment can affect your sexuality. Feelings of depression and fatigue can also have a negative effect on your sex life. If you feel the need to have someone to talk to, you can ask your doctor for a referral to a psychologist. If you have a partner, it is important to talk with them about your feelings. There are many ways in which you can be intimate. If it is difficult for you to be sexually active, be near each other, touch each other, give and take hugs, and just sit or lay down close to each other. The side effects of treatment can make it difficult to fully participate in social and economic life. Changes in your daily life as a result of the disease or the treatment can lead to isolation. Talk to your doctor or nurse. They can help you find the support and treatment you need. During treatment, you will be away from your work. Talk to your boss about the best way for you to get back to work. Perhaps you could work part time or in a different function. It might be helpful to go to the doctor together. You could offer to drive to the visit or help formulate questions to ask during consultation. Being there for the consultation can also be supportive. You may remember different things or focus on other details that you can later discuss together. You could also ask the doctor how the treatment may affect your lives in terms of caregiving and psychological effects. The diagnosis and treatment of cancer can be very emotional for everybody involved. Cancer treatment is intense, and your life may change suddenly. Questions about prognosis, effects of treatment, and death will come up. As a friend or a loved one, you can be there and listen. You don t need to have the answers. If you feel you need somebody to talk to, approach your family doctor or the medical team to get support and referrals. Patient organizations also offer support for family members or friends of people who have been diagnosed with cancer. page 10 / 11
Support for partners A cancer diagnosis can put pressure on your relationship. Often talking to each other becomes more difficult because of the time and energy spent on treatment. You may decide to discuss any difficulties with a therapist. You may experience a similar degree of stress, anger, and depression as your partner with cancer. You could feel exhausted, both physically and emotionally. This can be a result of the responsibilities of caring for your partner and taking on extra tasks at home. Be sure to make time for yourself and think about your own wishes and needs. Cancer treatment can affect your sex life. Try to talk to your partner about your feelings. There are many ways in which you can be intimate. Be near each other, touch each other, give and take hugs, and just sit or lay down close to each other. It is normal to worry about being left alone. If you feel you need somebody to talk to, approach your family doctor or your spiritual advisor. Patient organizations also offer support for partners. They can also help you find people or organizations who that can help you with practical details like legal and financial issues. This information was last updated in March 2016 and is subject to change following review by the European Cancer Patient Coalition (ECPC) and EAU Guidelines Office. This leaflet is part of a series of EAU Patient Information on Bladder Cancer. It contains general information about bladder cancer. If you have any specific questions about your individual medical situation you should consult your doctor or other professional healthcare provider. This information was produced by the European Association of Urology (EAU) in collaboration with the EAU Section of Oncological Urology (ESOU), the Young Academic Urologists (YAU) the European Society of Residents in Urology (ESRU), and the European Association of Urology Nurses (EAUN). The content of this leaflet is in line with the EAU Guidelines. Contributors: Dr. Mark Behrendt Dr. Juan Luís Vasquez Ms. Sharon Holroyd Dr. Andrea Necchi Dr. Evanguelos Xylinas Illustrations by: Edited by: Basel, Switzerland Herlev, Denmark Halifax, United Kingdom Milan, Italy Paris, France Mark Miller Art Missouri, United States of America Jeni Crockett-Holme Virginia, United States of America page 11 / 11