17264 Nephroureterectomy

Overview

A nephroureterectomy (say: nef-roh-yoor-ee-ter-EK-tuh-mee) is an operation to remove one whole kidney together with its ureter. The ureter is the thin tube that carries urine from the kidney down to the bladder. The surgeon also removes a small ring of bladder tissue where that ureter joined the bladder, so no leftover lining is left behind. It is usually done when a cancer has been found in the lining cells of the kidney or ureter. These lining cells are called urothelial cells, and this type of cancer is sometimes called upper urinary tract cancer. You can live a normal, healthy life with one kidney, and most people do well after this surgery.

It is an uncommon operation. Cancer of the kidney or ureter lining is much rarer than cancer of the bladder, so most people will never need this surgery. Surgeons who do it regularly work in specialist urology (urinary system) teams.

It mostly affects older adults, and it is more common in men than in women. It is more likely in people who smoke or have smoked, people who have worked with certain industrial chemicals, and people who have had bladder cancer in the past. Some people have inherited conditions that raise the risk. It is rare in children; when it does happen in a child, it is often linked to an inherited condition and is looked after by a specialist children's team.

Symptoms

Common symptoms

• Blood in the urine, which is often painless and may come and go. The urine can look pink, red or cola-coloured, or the blood may only be seen on a urine test.
• Pain or a dull ache in the side or lower back on one side.
• Needing to pass urine more often, or feeling a burning feeling when passing urine.
• Feeling very tired, or losing weight without trying.
• A lump or swelling felt in the abdomen, though this is less common.
• Sometimes no symptoms at all, with the problem first picked up on a scan done for another reason.

Symptoms in children

• This problem is very rare in children, so symptoms usually turn out to have a more common cause.
• Blood in the urine, tummy or back pain, or repeated urine infections should still be checked by a doctor.
• A child with an inherited condition that raises the risk may need regular check-ups even if they feel well.

Symptoms in older adults

• Symptoms can be blamed on getting older, a urine infection or kidney stones, which can delay the diagnosis.
• Any blood in the urine, even once and even if it clears up, should be checked by a doctor.
• Other health conditions such as heart or kidney problems affect which operation is safest, so a full review is important.
• Confusion or a sudden drop in how well someone is coping can be a sign of infection or another problem that needs same-day attention.

Causes

Main causes

• The usual reason for this operation is a cancer that starts in the lining cells of the kidney or ureter (urothelial cancer). These cells line the whole urinary system, from kidney to bladder.
• Less often, the operation is done for severe damage to a kidney and ureter that cannot be treated another way, or for a kidney that has stopped working and is causing problems.
• In a small number of cases it is used for other tumours or unusual conditions affecting the kidney and ureter.

Risk factors

• Smoking, or having smoked in the past — this is the biggest single risk factor.
• Long-term contact with certain industrial chemicals, such as those used in dye, rubber, leather, printing, painting or metal work. Workplace safety rules now reduce this risk.
• Having had bladder cancer before, because the same lining cells are involved.
• Long-standing irritation of the urinary system, such as repeated kidney stones or chronic infection.
• Some inherited conditions that run in families and raise the risk of urinary cancers.
• Being older, and being male.
• Long-term use of certain pain medicines (some over-the-counter and prescription painkillers) has been linked with kidney damage — ask your pharmacist or doctor before using them regularly.
• Drinking very little water over many years, and some herbal products that have been linked with kidney damage.

When to see a doctor

See a doctor urgently if:

• Any blood in your urine, even if it happens only once and then stops.
• Pain in your side or back that does not settle, or keeps coming back.
• A urine infection that does not clear up with treatment, or keeps returning.
• Unexplained weight loss or a new, lasting feeling of exhaustion.

Book a routine appointment if:

• You have questions about an operation you have been offered and want to talk it through before deciding.
• You want to know how long recovery will take, or what help you might need at home.
• You are having follow-up scans or checks and want to understand the results.
• You are worried about a family history of urinary or bowel cancer and want advice on screening.

Diagnosis

The team starts by asking about your symptoms, your health history, your work history and whether you smoke. They will check your blood pressure and may feel your tummy. Blood and urine tests come next. If the tests or your symptoms suggest a problem in the kidney or ureter, you will be referred for a scan and for a closer look inside the urinary system. A small sample of tissue (a biopsy) is usually taken to confirm exactly what is going on before any operation is planned. Your case is then discussed by a team of specialists together, and they will talk you through the options.

Tests that may be done

• Urine tests, including a test for blood and a test to check for infection.
• Blood tests to see how well your kidneys are working and to check your general health.
• A CT scan (a detailed X-ray scan) of the tummy and pelvis, often with a dye given into a vein, to look at the kidneys, ureters and bladder.
• A cystoscopy — a short camera test to look inside the bladder, usually done with a numbing gel and taking only a few minutes.
• A ureteroscopy — a fine camera passed up through the bladder into the ureter, usually under a general anaesthetic, so the team can look directly at the area and take a biopsy.
• An MRI scan or an ultrasound scan in some situations.
• Tests to check how well each kidney works separately, such as a special scan, if it matters for planning surgery.
• A heart and lung check plus a review of your other medicines before a general anaesthetic.

What to expect at your appointment

You may have several appointments over a few weeks. Some tests are quick; others need preparation, such as not eating before a scan or anaesthetic. You are welcome to bring someone with you and to write down your questions. Before the operation you will meet the surgical team, who will explain what will happen, the risks and benefits, and what recovery involves. You will be asked to sign a consent form, and you can take your time and ask anything you like before you decide.

Treatment

The main aim is to remove the cancer or the damaged area completely while keeping you as well as possible. Surgery is the usual treatment when the cancer is in the kidney or ureter, and for some people, other treatments are used before or after surgery. Your team will tailor the plan to your age, your other health conditions, how well your kidneys work, and what matters most to you. You always have a say in the decision.

Self-care at home

• If you smoke, stopping before surgery greatly lowers the risk of chest and wound problems. Ask your doctor or pharmacist for support to stop — free help is often available.
• Keep as active as you can before the operation; short daily walks help your lungs and speed up recovery.
• Ask your team about breathing exercises and practise them before the operation if you can.
• Arrange help at home for the first few weeks — with shopping, lifting, housework and any caring duties.
• Stock up on simple meals, and put everyday items within easy reach so you are not stretching or lifting.
• Follow any instructions about when to stop eating and drinking before the anaesthetic, and about which medicines to take on the day.
• Tell your team about all medicines, supplements and herbal products you use, including anything you buy over the counter.

Medical treatments

Surgery to remove the kidney and ureter is the main treatment. Your team may also discuss other anti-cancer treatments, which can be given before or after surgery depending on your situation. There are two broad types: treatments that travel through the whole body (given into a vein) and treatments put directly into the bladder through a small tube (a catheter) to reduce the chance of cancer coming back in the bladder. Which of these is right for you depends on the exact type and stage of the problem and on your general health. Your specialist team will explain the choices, the likely benefits and the possible side effects, and will help you decide. Always ask your doctor or pharmacist before taking any new medicine, including painkillers, because some are harder on the kidneys than others.

When is surgery considered?

The operation is usually recommended when there is a cancer in the lining of the kidney or ureter that cannot be treated safely in a way that keeps the kidney, or when the kidney and ureter are badly damaged and are causing ongoing problems. Sometimes, if the other kidney does not work well or you have only one kidney, the team may offer a different approach that removes just the cancer and keeps the kidney, as long as it is safe to do so. It is also fine to ask whether watching and rechecking is an option for you. Your surgeon should explain clearly why they are recommending this operation and what the alternatives are.

Living with this condition

After the operation you will have a wound or several small keyhole scars, and possibly a drainage tube or a catheter for a short time. You will be encouraged to get up and move about early, and to drink normally once you are able. Tiredness is normal for the first few weeks and tends to improve steadily. Most people go back to light activities within a few weeks and to work within six to twelve weeks, depending on the type of work and how the operation went. Your team will tell you when it is safe to drive, lift heavy things, or go swimming or back to the gym. Follow-up appointments, often with scans and camera checks of the bladder, are a normal part of life afterwards.

Lifestyle tips

• Drink enough fluid through the day so your urine stays pale — this helps protect your remaining kidney.
• Do not smoke, and avoid other people's smoke; ask for help to stop if you need it.
• Check with your pharmacist or doctor before taking everyday painkillers, because some are harder on the kidneys than others.
• Tell any doctor, nurse or dentist you see that you have one kidney, and remind them before scans with dye or before any new medicine.
• Keep up with your follow-up appointments and scans, even when you feel completely well.
• Follow workplace safety guidance if your job involves chemicals, and tell your team about your job.
• Build activity back gently, starting with short walks and increasing a little each day.

Diet and exercise

Most people do not need a special diet. A balanced way of eating with plenty of vegetables and fruit, whole grains, and not too much salt is good for your heart and your kidneys. You do not usually need to drink a set amount, but sipping water through the day and keeping urine pale is a simple goal. If you have other conditions such as diabetes or high blood pressure, follow the advice you have already been given. Once you have recovered, regular movement — walking, swimming, cycling or whatever you enjoy — helps your energy, mood and heart. Build up slowly and check with your team before returning to heavy lifting or contact sport.

Mental health and emotional wellbeing

It is very common to feel shocked, anxious or low around the time of this operation. You may worry about living with one kidney, about the cancer coming back, or about scans before each check-up. These feelings usually settle, but they can be heavy at first, and you do not have to manage alone. Talking to family, friends, your GP or a specialist nurse often helps. If low mood or worry is lasting more than a couple of weeks, or is affecting your sleep, appetite or daily life, please tell your doctor — there is good support available. If you ever feel you cannot keep yourself safe, contact your local emergency number or a crisis line in your country straight away, or ask someone to stay with you while you get help.

Prevention

Not all cases can be prevented, but you can lower your risk. Not smoking, or stopping now, is the single most helpful step. Following safety rules at work if you handle industrial chemicals, drinking enough fluid through the day, and getting blood in your urine checked early are all worthwhile. None of this is about blame — many people who develop this problem have done nothing wrong.

Vaccines

There is no vaccine for this condition. Keep up to date with the routine vaccinations you are offered, including flu and pneumonia vaccines if your doctor advises them, as this helps you stay well around surgery and treatment.

Screening programmes

There is no general screening programme for cancer of the kidney or ureter lining. However, if you have had bladder cancer, or have an inherited condition that raises your risk, your team may recommend regular checks with scans and camera tests. People with blood in their urine are always offered investigation, and this acts as an early warning system. Ask your doctor whether any regular checks are right for you.

Complications

If left untreated

• The cancer could grow deeper into the kidney or ureter wall and spread to other parts of the body, where it is harder to treat.
• The ureter could become blocked, causing pain and pressure that damages the kidney.
• Ongoing bleeding in the urine could lead to anaemia (a low blood count), causing tiredness and breathlessness.
• Repeated urine infections and kidney damage could make you feel unwell and lower your general health.

Long-term outlook

Most people recover well from this operation and go back to their normal lives. Living with one kidney is usually not a problem, and the remaining kidney adapts over time. If the operation is done for cancer that has not spread, the aim is to cure it, and follow-up checks help catch any new problem early. Survival rates for this type of cancer are generally good when it is found early. Every person is different, so ask your own team what the outlook is for your situation — they know your full picture and can give you honest, personal answers.

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