Upper urinary tract urothelial cancer (UTUC)
What is upper urinary tract urothelial cancer (UTUC)?
Upper urinary tract urothelial cancer (UTUC) is cancer that starts in a ureter or an area inside the kidneys called the renal pelvis. Together these parts of the body are called the upper urinary tract. They collect and drain pee (urine) from your kidneys into your bladder.
What does urothelial cancer mean?
Other urinary tract cancers
This information is about cancer that starts in the ureter or renal pelvis. Cancer can also start in other parts of the urinary tract. We have separate information about:
- kidney cancer (renal cell cancer)
- bladder cancer.
Related pages
Symptoms of UTUC
Some people do not have symptoms but are diagnosed with UTUC when they have a test or scan for another reason.
The most common symptoms of UTUC are:
- blood in the urine (haematuria)
- pain in 1 side of the lower back.
Sometimes the ureter becomes blocked, either by cancer cells or by a blood clot. This causes urine to stay in the kidney and ureter. This is called hydronephrosis. If this happens, symptoms such as back pain may develop more quickly and be more severe.
Most people with these symptoms do not have cancer. These symptoms can be caused by more common conditions such as urine infections or kidney stones. But if you have any symptoms, it is important to get them checked by your doctor.
Related pages
Causes and risk factors of UTUC
There are certain things that can affect the chances of developing UTUC. These are called risk factors. We have more information about causes and risk factors of upper urinary tract urothelial cancer (UTUC).
Having a risk factor does not mean you will definitely get UTUC. And if you do not have any risk factors, you may still develop cancer.
Diagnosis of UTUC
If you have symptoms, you usually start by seeing your GP. They will examine you and arrange for you to have some tests. They may test your urine (pee). They may also do blood tests to check:
- your general health
- the number of cells in your blood (blood count)
- how well your kidneys and liver are working.
If your GP is not sure what the problem is, or they think your symptoms could be caused by cancer, they will usually refer you to the hospital to see a specialist doctor. This doctor is called a urologist.
If you have blood in your urine (haematuria), you may be referred to a specialist clinic. This is called a haematuria clinic. Usually, these clinics can do tests on the same day.
At the hospital
The urologist or a specialist nurse will ask you about your symptoms and your general health. They will also examine you and arrange some of the following tests:
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Blood tests
Blood tests help your doctors check how well your kidneys and liver are working. They also show the number of blood cells in your blood. This is called a blood count.
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Urinary cytology
During a urinary cytology, a sample of your urine is checked for cancer cells.
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CT scan
A CT scan takes a series of x-rays which create a three-dimensional (3D) picture of the inside of the body.
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CT urogram
A CT urogram is a type of CT scan to look at the kidneys, ureters and bladder.
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Cystoscopy and ureteroscopy
A cystoscopy is a camera test to look at the inside of the bladder. A ureteroscopy is done in the same way but looks inside the ureter and renal pelvis.
Waiting for test results can be a difficult time. We have more information that can help.
Related pages
Staging and grading of UTUC
Your cancer doctor needs certain information about the stage and the grade of the cancer to advise you on the best treatment for you.
The stage of the cancer describes its size and whether it has spread. The grade of the cancer gives an idea of how quickly the cancer might grow and spread.
Staging and grading information comes from the tests you have had.
We have more information about staging and grading upper urinary tract urothelial cancer (UTUC).
Treatment for UTUC
A team of specialists will discuss your treatment options. This is called a multidisciplinary team (MDT).
Treatment depends on a number of factors, including the position, type, stage and grade of the cancer. Your team will also consider:
- how well your kidneys work
- your general health
- your personal preferences.
Your cancer doctor will explain the different treatments and their side effects. They will also talk to you about the things you should consider when making treatment decisions. Some treatments are not suitable if you have other health conditions or if your kidneys do not work well. Your cancer team will plan your treatment carefully.
You may also have some treatments as part of a clinical trial.
Treating localised and regional UTUC
Surgery is usually the main treatment for UTUC that has not spread to distant parts of the body. It aims to remove the area affected by cancer.
After surgery, you may be offered other treatments to reduce the risk of the cancer coming back. This is called adjuvant treatment and may include the following.
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Chemotherapy or BCG into the urinary tract
You may be given a single dose of chemotherapy, or an immunotherapy called BCG, directly into the urinary tract or bladder. This is called regional or intravesical treatment. You have it while you are in hospital, after your operation. Your doctor or nurse will tell you about the treatment and possible side effects.
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Chemotherapy into a vein
You may also have a course of chemotherapy drugs given into a vein. This is called intravenous treatment. Treatment usually starts within 3 months of your surgery. The following drug combinations are used to reduce the risk of UTUC coming back after surgery:
Chemotherapy can cause side effects. But these can often be controlled with medicines. Your cancer doctor or specialist nurse will explain what to expect. We have more information about coping with the side effects of chemotherapy and about different chemotherapy drugs.
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Immunotherapy into a vein
Some people may have an immunotherapy drug called nivolumab into a vein, instead of chemotherapy. Treatment usually starts within 3 months of your surgery. Nivolumab can cause side effects, called immune-related side effects. These are different to the side effects of chemotherapy or other treatments. They are caused by the immune system attacking normal cells in the body as well as the cancer cells. We have more information about immune-related side effects.
Some people will have the following treatments instead of surgery:
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Endoscopic tumour ablation
If the cancer is low grade and only growing on the lining of the ureter, you may have it removed by laser or heat treatment (diathermy). This is called ablation.
A doctor passes a flexible tube with a camera (endoscope) up through the urethra, bladder and ureter to the renal pelvis. They use this to apply a beam of laser or heat to the tumour to destroy it. Sometimes a tube (stent) may be left in the ureter for a time to keep it open.
If you have laser or heat treatment, you will be very closely monitored afterwards. This is because there is a risk the cancer could grow back. If this happens, it is important the cancer is found as soon as possible.
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Chemotherapy into the ureter
If you cannot have surgery or you only have 1 kidney, you might have chemotherapy directly into the ureter instead. A doctor may put a tube into the bladder and into the ureter. Or they may put a tube into the kidney (nephrostomy). You have chemotherapy through the tube.
Treating metastatic UTUC
Cancer drugs are the main treatment for UTUC that has spread to other parts of the body. The aim is to try to control the cancer and to improve symptoms and quality of life. If 1 treatment stops working, your cancer team may suggest trying a different drug or combination of drugs.
Most drugs are given as a course of treatment into a vein (intravenous). We have more information about having cancer drug treatments.
After each treatment you have a rest period of several weeks. Depending on the drug, you will be given treatment once every 2, 3 or 6 weeks. The rest period allows your body to recover from the side effects. The treatment and the rest period make up a cycle of your treatment. Your cancer team will explain the number of cycles you may need.
Several different drugs are available to treat UTUC. Some may only be available as part of a clinical trial. Or they may not be widely available on the NHS. If a drug is not available, there may be ways you can still have it. Your cancer team can give you advice.
Cancer drug treatments for UTUC may include the following.
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Chemotherapy
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. The following combinations may be used to help control UTUC that has spread:
- GemCis (gemcitabine and cisplatin)
- GemCarbo (gemcitabine and carboplatin)
- MVAC (methotrexate, vinblastine, doxorubicin and cisplatin).
Chemotherapy can cause side effects. But these can often be controlled with medicines. Your cancer doctor or specialist nurse will explain what to expect. We have more information about coping with the side effects of chemotherapy and about different chemotherapy drugs.
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Immunotherapy
Immunotherapy drugs encourage the body’s immune system to find and attack cancer cells.
The following immunotherapy drugs are used to treat UTUC. These drugs are also called checkpoint inhibitors:
- nivolumab (OPDIVO®)
- pembrolizumab (Keytruda®)
- atezolizumab (Tecentriq®)
- avelumab (Bavencio®).
Your cancer team may do tests on a sample of the cancer cells to check for a protein called PDL1. This can help them decide which drugs are likely to be effective for you.
These drugs can cause side effects called immune-related side effects. These are different to the side effects of chemotherapy or other treatments. They are caused by the immune system attacking normal cells in the body as well as the cancer cells. We have more information about immune-related side effects.
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Targeted therapy
Targeted therapies target something in or around the cancer cell that is helping it grow and survive. At time of publishing, targeted therapy drugs are not available on the NHS as a treatment for UTUC. But this type of treatment is sometimes used to treat UTUC that has spread. Your cancer team can give you more information. They will explain any possible side effects if you are offered this type of drug.
After treatment for upper urinary tract urothelial cancer (UTUC)
Follow-up
After your treatment has finished, you will have regular check-ups with your cancer team to monitor how you are recovering after treatment. These will usually include a physical examination. They may also involve taking some urine (pee) or blood samples.
You may have regular checks with a CT urogram, or a regular ureteroscopy. You may also have a cystoscopy to detect any changes in the bladder. This is because people with cancer of the ureter or renal pelvis have an increased risk of bladder cancer after a few years.
If the cancer is advanced, you may continue having treatment while it is working for you. You may have regular CT scans to see how the cancer is responding.
You can talk to your cancer doctor or specialist nurse about any problems or worries you have at these check-ups. If you have any problems or notice any new symptoms between your appointments, tell them as soon as possible.
You may feel anxious between appointments. This is natural. It may help to get support from family, friends or a support organisation, such as the ones listed in the section below. You may want to join a local support group. Your nurse may be able to give you details.
Finding information and support
UTUC is a rare cancer. This can sometimes make it harder to find the information or support you need. We have more about coping and getting information in our page about rare cancers.
Some organisations offer support to people affected by a rare cancer type:
- Orphanet provides information on rare conditions, including cancers.
- Cancer52 is an alliance of patient organisations for less common cancers in the UK. They provide a list of organisations by cancer type.
- RareConnect hosts online communities for people affected by rare diseases. They also provide a translation service. This means people from all over the world can access their groups.
- Rare Cancer Alliance is a US website. It was set up to share information and provide support to people with rare cancers.
Macmillan is also here to support you. If you would like to talk, you can:
- call the Macmillan Support Line on 0808 808 00 00
- chat to our specialists online
- visit our Online Community to connect with others who have similar experiences, share your story, or ask a question in our Ask an Expert section.
Wellbeing and recovery
Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.
Making small changes to the way you live, such as eating well and keeping active, can improve your health and wellbeing and help your body recover.
About our information
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.
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References
Below is a sample of the sources used in our UTUC information. If you would like more information about the sources we use, please contact us at informationproductionteam@macmillan.org.uk
Rouprêt M, Gontero P, Birtle A et al. European Association of Urology Guidelines on Upper Urinary Tract Urothelial Carcinoma. 2023. Available from https://uroweb.org/guidelines/upper-urinary-tract-urothelial-cell-carcinoma
Reviewer
Consultant Medical Oncologist & Honorary Associate Professor
University College Hospitals, London
Date reviewed
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