What is upper tract urothelial cancer?
Upper tract urothelial cancer (sometimes called transitional cell carcinoma or UTUC) is a cancer that occurs in either the inner lining of the tube that connects the kidney to the bladder (the ureter) or within the inner lining of the kidney.
The renal pelvis is the upper end of the ureter that carries urine from the kidney to the bladder. The kidney has several cup-like cavities, called calyces, where urine is collected. The calyces drain urine into the renal pelvis which acts as a funnel to the bladder. UTUC can occur in all of these areas.
The lining of the bladder, kidney and ureter are the same, so there are some similarities between upper tract urothelial cancer and bladder cancer. Blood in the urine (haematuria) is a symptom of both cancers, however UTUC can block the ureter or kidney, causing swellings and infections, and can affect kidney function in some people.
The urinary tract system
The normal urinary tract consists of two kidneys, two ureters, the bladder and the urethra. The upper tract consists of the renal calyces, renal pelvis and the ureters, while the lower tract consists of the bladder and urethra. The urinary tract’s main purpose is to remove waste and extra fluid from the body in the form of urine (wee), regulate blood pressure, maintain the body’s water balance and control the levels of chemicals and salts in the blood.
Your kidneys work hard. All your body’s blood passes through them every five minutes. The kidneys remove waste and excess fluid from the blood in the form of urine, which is then carried by the ureters to the bladder where it is stored.
To urinate normally, all the parts of your urinary tract system must work together. Your brain controls your bladder and sends signals when it is time to go to the toilet. Urine then empties from your bladder through your urethra and out of your body.
How common is upper tract urothelial cancer?
Around 470 Australians are diagnosed each year with UTUC. It is three times more likely to be diagnosed in men than women, and in people aged over 70 years.
Learn more about rare cancer
The cause of UTUC is not known in most cases. However, there are several risk factors:
- a history of long-term inflammation of the ureter or kidney
- exposure to certain chemicals over time, such as those used to make plastics, textiles, rubber, paint and dyes
- exposure to arsenic
- prior chemotherapy or radiation therapy for another cancer
- long-term use of large quantities of painkillers
- history of bladder cancer
- having Lynch syndrome (an inherited syndrome) or Balkan nephropathy (caused by exposure to toxins in the diet of people living in the Balkan region).
Upper tract urothelial cancer can be difficult to diagnose in its early stages and you may have no symptoms if the cancer is slow growing. Symptoms that some people may experience include:
- blood in the urine (haematuria) — you may or may not be able to see this
- pain on one side of the back caused by a blockage in the kidney or ureter
- weight loss
- urinary tract infections.
If your doctor thinks you may have UTUC they will take your medical history, perform a physical examination and arrange for you to have a number of tests. If the results of these tests suggest that you may have UTUC, your doctor will refer you to a specialist called a urologist, who will arrange further tests.
Further tests a specialist may carry out include:
- Urine tests – you will be asked to collect a urine sample which will be checked for blood and bacteria. You may also need to collect urine samples over three days to be checked for cancer cells, which is called urine cytology.
- Blood tests – to measure your white blood cells, red blood cells and platelets, and to check your kidney and liver function.
- Ultrasound scan – this painless scan uses soundwaves to create pictures of the inside of your body.
- CT, MRI and PET scans – these tests use special painless machines to scan and create pictures of the inside of your body.
- Cystoscopy and ureteroscopy – a cystoscopy involves looking in the bladder while a ureteroscopy involves looking up into the ureter to the kidney. A cystoscopy can usually be performed under a local anaesthetic. A ureteroscopy test is usually performed under a general anaesthetic.
Finding a specialist
Rare Cancers Australia have a directory of health professionals and cancer services across Australia. The Urological Society of Australia and New Zealand (USANZ) is the peak membership organisation for urological surgeons and other health professionals working in the field of urology.
Grading and staging
If cancer cells are found during any of your tests, your doctor will need to know the grade and stage of the tumour to develop the best treatment plan for you. The grade lets your doctor know how quickly the cancer might grow and spread, while the stage describes its size and whether it has spread beyond the original site.
Upper tract urothelial cancers are graded as follows:
- Papillary urothelial neoplasia of low malignant potential (PUNLMP) – very slow growing and rarely recur or spread.
- Low grade – the cancer cells are usually slow growing and are less likely to invade and spread.
- High grade – the cancer cells look highly abnormal, they grow quickly and are more likely to spread.
Most upper tract urothelial cancers will need follow-up cystoscopies and/or ureteroscopies, imaging and urine tests annually.
The most common staging system for UTUC is the TNM (tumour-nodes-metastasis) system, which uses letters and numbers to describe the cancer, with higher numbers indicating larger size or spread.
You will be cared for by a multidisciplinary team (MDT) of health professionals during your treatment, which may include a urologist, pathologist and occupational therapist, among others. Discussions with your health professionals will help you decide on the best treatment for your cancer depending on:
- the type of cancer you have and its exact location
- the grade and stage of your cancer
- your age, fitness and general health
- the health and function of your other kidney (if it is the kidney that is affected)
- your preferences.
The main treatments for UTUC include surgery, chemotherapy and sometimes radiation therapy, which can be given alone or in combination. This is called multi-modality treatment.
One issue that is important to discuss before you undergo treatment is fertility, particularly if you want to have children in the future. You might also need to adjust to changes in the digestion of food or bladder and bowel function after treatment ends, either temporarily or long-term. Talk to your GP, specialist doctor, specialist nurse or dietitian.
Complementary therapies are designed to be used alongside conventional medical treatments (such as surgery) and can increase your sense of control, decrease stress and anxiety, and improve your mood.
Surgery is the most effective treatment for UTUC. Surgery may be performed as either keyhole surgery or open surgery. Each method has advantages in particular situations. Your doctor will talk to you about which type of surgery is appropriate for you.
The extent of the surgery depends on the location and stage of the tumour. Your surgeon will discuss the type of operation you may need, which may include:
- Removing the whole kidney and ureter (nephroureterectomy) – the kidney, a layer of fat around the kidney and ureter are removed down to the bladder. An area of tissue where the ureter enters the bladder (bladder cuff) is also removed. The surgeon may also remove some regional lymph nodes to check if they contain cancer cells.
- Removing part of the ureter (distal resection) – the bottom part of the ureter is removed down to the bladder. This is only possible if the tumour is in the pelvic part of the ureter. This procedure saves the kidney and the ureter is re-joined to the bladder.
- Ureteroscopy – the surgeon passes a small tube with a camera (ureteroscope) into the bladder, ureter and renal pelvis. Often tissue samples are removed (biopsy) for further examination under a microscope.
- Ureteroscopy surgery – used for low-grade and early-stage cancers only. The surgeon passes a small tube with a camera (ureteroscope) through the urethra, bladder and ureter to the renal pelvis. The tumour is removed using laser or heat (diathermy).
- Percutaneous renoscopy surgery – used for low-grade and early-stage cancers only. The surgeon makes a small incision in your mid back and passes a small tube with a camera (endoscope) into your kidney to the renal pelvis. The tumour is removed using tools passed through the endoscope.
Common side effects include mild bleeding and discomfort after surgery, risk of infection, urine leaks or problems urinating after surgery, blockage of food and stools from adhesions from scar tissue, pain, blood clots, weak muscles and hernias.
Chemotherapy is the use of drugs to kill or slow the growth of cancer cells. Your treatment will depend on your situation and stage of the tumour.
Chemotherapy may be used before or after you have surgery. Sometimes after surgery to remove the kidney and ureter (nephroureterectomy), a single dose of chemotherapy 'wash' is put into the bladder. Usually this will be a drug called mitomycin and is given via the catheter that is left for one to two weeks after the surgery. Doing this can reduce the chance of the cancer recurring in the bladder.
Chemotherapy is usually given through a drip into a vein or as a tablet that is swallowed. It is commonly given in cycles which may be daily, weekly or monthly. The length of the cycle and number of cycles depends on the drugs being given.
Common side effects include fatigue, loss of appetite, nausea and vomiting, bowel issues such as diarrhoea, hair loss, mouth sores, skin and nail problems, increased risk of infections, loss of fertility and early menopause.
Immunotherapy (checkpoint inhibitors)
If your cancer has spread and is now known as advanced or metastatic upper urothelial cancer you may be offered immunotherapy, which uses the body’s own immune system to fight cancer. A new group of immunotherapy drugs called checkpoint inhibitors are available that work by helping the immune system to recognise and attack the cancer.
A checkpoint immunotherapy drug called pembrolizumab is now available in Australia for some people with advanced UTUC. The drug is given directly into a vein through a drip, and the treatment may be repeated every 2–4 weeks for up to two years.
Other types of checkpoint immunotherapy drugs may become available soon. Clinical trials are testing whether combining newer checkpoint immunotherapy drugs with chemotherapy and radiation therapy will benefit people with upper urothelial cancer.
Radiation therapy uses high energy x-rays to destroy cancer cells, however it is less commonly used for UTUC. Your doctor will discuss your options with you.
A course of radiation therapy needs careful planning. It does not hurt and is usually given in small doses over a period of time to minimise side effects, which may include fatigue, nausea and vomiting, bowel issues such as diarrhoea, skin problems, loss of fertility and early menopause.
Asking your doctor questions will help you make an informed choice about your treatment and care. You may want to include some of the questions below in your own list:
- What type of upper tract urothelial cancer do I have?
- What grade and stage of cancer do I have?
- Has the cancer spread anywhere else?
- Have you treated this type of cancer before?
- Is there another doctor you can recommend so I can get a second opinion?
- What are the treatment options for me? What do you recommend and why?
- What are the possible risks and side effects of my treatment? How will these be managed?
- How long will treatment take?
- Is this treatment covered by Medicare/private insurance? Will there be extra expenses?
- Are there any complementary therapies that might help me?
- How often will I need to have check-ups after treatment?
- If the cancer comes back, how will I know?
- What are the possible benefits and risks to joining a clinical trial? What is being tested and why? How many people will be involved in this trial? If I can’t get onto a clinical trial, can I still pay for a drug that is currently being trialled?
Life after treatment
Once your treatment has finished, you will have regular check-ups to confirm that the cancer hasn’t come back. Ongoing surveillance for UTUC involves a schedule of tests, scans, scopes and physical examinations. Maintaining a healthy body weight, eating well and being active are all important.
If your surgery has left you with only one kidney, you will need to limit the amount of salt and protein in your diet, avoid playing contact sport (such as football and boxing), avoid taking non-steroidal anti-inflammatory drugs (such as aspirin and ibuprofen), and avoid dyes used in some imaging tests. Your doctor will discuss these issues with you.
For some people, UTUC does come back after treatment, which is known as a recurrence. If you have had cancer of the ureter or renal pelvis, you may have an increased risk of developing a bladder cancer after a few years. If the cancer does come back, treatment will depend on where the cancer has returned in your body and may include a mix of surgery, radiation therapy and chemotherapy.
In some cases of advanced cancer, treatment will focus on managing symptoms, such as pain, and improving your quality of life without trying to cure the disease. This is called palliative treatment.
Understanding Upper Tract Urothelial Cancer
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Expert content reviewers:
Australian and New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group Consumer Advisory Panel; Gregory Bock, Urology Cancer Nurse Coordinator, WA Cancer and Palliative Care Network, North Metropolitan Health Service, WA; Dr Tom Ferguson, Medical Oncologist, Fiona Stanley Hospital, Perth, WA; Prof Dickon Hayne, UWA Medical School, The University of Western Australia, and Head, Urology, South Metropolitan Health Service, WA; Steven Jones-Evans, Consumer; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Dr Carlo Yuen, Urologist, St Vincent’s Hospital, Sydney, NSW.
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The information on this webpage was adapted from Understanding Upper Tract Urothelial Cancer - A guide for people affected by cancer (2021 edition). This webpage was last updated in September 2021.