james whale fund_kidney cancer guide

Understanding Kidney CancerA patient information guide from the James Whale Fund for Kidney Cancer

These people have allsuffered from kidneycancer and continue to lead fulfilling lives.We hope this bookletwill help you to do the same.

2 GETTING A DIAGNOSIS The symptoms of kidney cancer How doctors diagnose kidney cancer

6 HAVING TREATMENT Staging and grading kidney cancers Discussing treatment optionsWhat are my chances?Surgery Biological therapies Newer biological treatmentsOther treatments

16 LIVING WITH KIDNEY CANCERFeelingsDay-to-day livingMoney mattersSupportSelf-help

19 WHERE TO FIND MORE INFORMATION

20 GLOSSARY

22 NOTES

The James Whale Fund for Kidney Cancer does not supply medical advice.The information provided in this booklet is for educational purposes onlyand is not a substitute for professional care. It should not be used fordiagnosing or treating health problems. If you have, or suspect you mayhave a health problem you should contact you doctor.

Front cover: James Whale, Nicholas Owen and Rose Woodward, Co-founder of the Kidney Cancer Patient Support Network.

You can visit the Kidney Cancer Support Network forum atwww.kidneycancersupportnetwork.co.uk

By the time you read this, you (or someoneclose to you) will have probably seen a doctorand had some tests.

You may have sought help or advice because you were experiencing one of the symptoms of kidney cancer.

Or you may have been diagnosed with kidneycancer following a scan for something completely different.

This booklet will help you understand what is likely to happen next.

l It will tell you about the investigations the doctors might carry out.

l It will explain the different treatments available as well as the possible side-effects of each.

l It will suggest some questions you might like to ask your doctors so that you can decide on the course of action that’s right for you.

l And it will tell you where you can get furtherinformation and support.

1

2 James Whale Fund for Kidney Cancer

GETTING A DIAGNOSIS

The symptoms of kidney cancer The most common symptom is blood in theurine. Doctors call this haematuria. It may comeand go. Sometimes you won’t be able to see it,but it can still be detected by a urine test.Most people with blood in their urine do nothave kidney cancer. It can be a sign of aninfection, kidney stones, prostate problems orbladder cancer. However, it should always beinvestigated to find out what has caused it. Thesooner kidney cancer is detected, the easier itis to treat.

Most kidney cancers are too small to feel but if you feel a lump or mass in the area of your kidneys you should tell your doctorstraight away.

You should also see your doctor about anypersistent low back pain.

There are other symptoms which can be moregeneral and can also be caused by many other conditions (see box).

Sometimes abnormal red blood cell countsand high blood pressure can be symptoms of kidney cancer.

In the early stages of kidney cancer there maybe no obvious symptoms. Many kidney cancersare found simply by chance when someone isbeing given a scan for another reason.

How doctors diagnose kidney cancerAt your GP’sSome initial tests will probably be carried outby your family doctor. He or she will examineyou and ask for a urine sample. This will beanalysed to see if it contains blood. You

l Blood in the urine

l Tiredness

l Weight loss and/or lossof appetite

l Running a persistent temperature and sweating heavily especially at night

l Persistent low back pain

Typical symptons

3Understanding Kidney Cancer

may also be asked for a blood sample.This will be tested to see how well yourkidneys are working.

Your GP may then refer you to a hospitalspecialist for further tests. There are specialguidelines for GPs to help them decide whoneeds to be referred urgently.

At hospitalThe specialist will want to know about yourmedical history and symptoms. If anyone elsein the family has had kidney cancer you shouldmention this. You will have more blood andurine tests.

The doctor will also want to look at yourkidneys. An ultrasound scan can show upchanges in the kidneys which could be due toa cyst or tumour. This is a painless procedurewhich is done in the hospital scanningdepartment and takes only a few minutes. Youlie on your back and gel is spread on yourstomach. A small device which produces soundwaves is rubbed over the area. The echoes areturned into a picture by a computer.

Another test that can show up growths in thekidneys or urinary system is called an IVU orIVP. It is done in the hospital X-ray departmentand takes about an hour. A dye is injected intoa vein in your arm and a doctor watches on ascreen as it travels through the kidneys. Thedye may make you feel hot and flushed for alittle while, but the feeling graduallydisappears. You should be able to go home assoon as the test is over.

Your doctor might want to carry out acystoscopy to look inside your bladder, becauseit is part of the same system as your kidneys.The procedure can be done under local or

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More information


general anaesthetic. A fine tube with a light ispassed up your urethra and into your bladderwhere it acts like a telescope.

If the initial investigations confirm you havekidney cancer, you will need more tests to helpdoctors see if it has spread and how best totreat it. However, some of the following testsmay also be used when your doctor is stilltrying to determine whether you have kidneycancer or not:

A CT scanWhen you have a CT scan – often referred to asa CAT scan because it is short for computerisedaxial tomography – the scanning machine takesa series of pictures from different angles. Theimages are put together by a computer to givea detailed image of the inside of your body.The machine is shaped rather like a ringdoughnut. You lie on a couch which slidesbackwards and forwards through the hole. Theradiographer cannot stay in the room with youduring the scanning but will be able to see youon a tv screen and talk to you through anintercom. You may be given an injection of dyeinto a vein to help blood vessels show up moreclearly. A CT scan is painless but takes longerthan an X-ray. Some people feel a littleclaustrophobic during a scan. If you think youmight, tell the radiographers before the day of your appointment.

BiopsyDoctors can usually make a confident diagnosisfrom a CT Scan alone. Occasionally a biopsywill also be carried out. A thin needle is putthrough the skin and muscle into the kidney toremove a small sample of tissue. This is thenexamined under a microscope to check forsigns of cancer.

l CT or CAT scan

l Biopsy

l MRI

l Bone scan

l Chest X-ray

Typical tests


MRIThis is similar to a CT scan but uses magneticresonance imaging instead of X-rays to build upa detailed picture of the inside of your body. Itcan be used to check the size and extent of atumour, as well as seeing whether or not thecancer has spread. You may be given aninjection of dye into a vein to help bloodvessels show up more clearly. During the testyou have to lie very still on a couch inside along tube for about 30 minutes. It is painlessbut very noisy and can make people feel a littleclaustrophobic. You should be given earplugs orheadphones.

Bone scanYou might be asked to have a bone scan tosee whether the cancer has spread to yourbones. If so, you will be injected with a mildlyradioactive material and then asked to wait fora couple of hours while it travels though theblood and collects in the bones. Areas wherethere is damage to the bone will show up as‘hot spots’. These aren’t necessarily the resultof cancer. If you have arthritis, for instance, thiswill show up on the scan.

Chest X-rayA chest X-ray may be carried out to check yourgeneral health and make sure that you are fitenough to have certain treatments or surgery. Itwill also be used to rule out cancer spread tothe lungs or chest bones.

You will be asked to go back to hospital forthe results of your tests. This may take a littlewhile and you will probably feel worried andupset during this time. Is there anyone you can share your feelings with? Is there a clinical

l What tests are you going to do?

l What are you looking for?

l What will happen and how long will it take?

l Will it be painful or uncomfortable?

l Will there be any after-effects?

l Can I bring someone with me?

l How long will the results take?

l Who will give me the test results?

l Will they show if I have kidney cancer?

l Will they show if the cancer has spread?

Questions you maywant to ask your doctor


nurse specialist you can talk to? It might behelpful to contact a support group and talk to someone who has been in your shoes. There are some useful numbers on page 19.

HAVING TREATMENT

Before your doctors can discuss treatmentoptions with you they need to know what kindof cancer you have and how far it hasprogressed. The most common form of kidneycancer is renal cell carcinoma or RCC for short.There are several different sub-types of RCC.The most common of these is clear cell.

This booklet concentrates on RCC althoughsome of the information should be helpful toany kidney cancer patient. More informationabout other types of kidney cancer – includingWilms’ Tumour which affects young children –can be obtained from our websitewww.jameswhalefund.org or from Cancerbackupor Cancer Research UK (see p19).

Staging and grading kidney cancersDoctors grade cancers by looking at cells undera microscope. Cancers are generally given oneof three grades. The grade helps to indicatehow quickly or slowly a cancer is likely to growand spread. Grade 1 or low-grade cells areusually slow-growing and less likely to spread.Grade 3 or high-grade cells are likely to growmore quickly and are more likely to spread.

Staging is used to describe how big a cancer isand how far it has already spread.


The TNM system is generally used.

T plus a number stands for the size of the tumour.

N plus a number stands for any nearby lymph nodes the cancer has spread to.

M plus a number refers to places elsewhere in the body where the cancer has spread.

Your doctor will combine these figures to givean overall staging. eg T2 N0 M0

Stage 1 The cancer is confined to the kidneyand is less than 7cm in size

Stage 2 The cancer is bigger than 7cm but stillconfined to the kidney

Stage 3 The cancer has started to spreadoutside the kidney

Stage 4 The tumour has either spread tonearby organs or to other parts of the body further away

When discussing your treatment options, yourdoctor will also take into account how well youare overall.

Discussing treatment optionsIdeally you will be treated in a cancer unit by ateam of specialists. They will discuss yourtreatment with you. The team will include aurologist who specialises in surgery and anoncologist who specialises in other ways oftreating cancer. Preferably, both will haveexperience of treating kidney cancer.

Other members of the team may include anurse specialist, a dietician, a physiotherapist,an occupational therapist and a psychologist or counsellor.


Your doctors will tell you which treatment theythink would be best for you. Sometimes theymay offer you a choice of treatments. In anycase, you should be sure you have been givenenough information – and understood it –before you give permission for the treatment tostart. Don’t be embarrassed about askingpeople to explain things again. And rememberto ask about any aspects that are worrying you.You should be told:

l What type of treatment the doctors are advising

l How and when this would be carried out

l The advantages and disadvantages of this type of treatment

l Any possible other treatments that might be available

l Any significant risks or side effects of the treatment

It may be useful to write down a list ofquestions to take with you to the appointment.It is also a good idea to have a relative orfriend with you when you are discussing yourtreatment options. They will be able to takenotes or help you remember what was said. Ifyou feel you can’t make a decisionstraightaway, ask for more time to decide.

You may want a second opinion, especially ifyou feel your doctor does not have enoughexperience in treating kidney cancer or if you are told little treatment is available. Mostdoctors will be willing to refer you to anotherspecialist but it may take a little while toorganise. As this may delay the start of your treatment you need to feel sure it will be worthwhile.


If the treatment you are being offered aims tocure your cancer, you may find the decision togo ahead relatively easy. But if, instead, theaim of the treatment is to control the cancer for a period of time it may be more difficult to decide.

You might want to think about your quality oflife while you are having treatment. Will youhave to travel back and forwards to hospital?What will the side-effects be?

As well as talking things over with the peoplewho mean most to you, you may find it helpfulto talk to a counsellor or a specialist nurse. Ifyou choose not to have treatment you can stillbe given help to control any symptoms youhave. This is called palliative care.

What are my chances?Being told you have kidney cancer is always ashock. People react in different ways. Somewant to find out as much as they can abouttheir treatment and their long-term prospects.Others don’t want to think about the future,preferring to take each day as it comes withoutworrying about what may or may not lie ahead.

As doctors know only too well, it can be verydifficult to predict what will happen becauseevery patient is an individual. Of course, theearlier your cancer is detected and the soonertreatment begins, the better your chances oflong-term survival. Even if your cancer hasspread, making it more difficult to treat, it ispossible for the symptoms to be kept wellunder control for years. And in some rare casespatients may go into remission for no apparent reason.

There are statistics about average survival ratesfor people diagnosed with different stages of

l Specialist Nurse

l Dietician

l Physiotherapist

l Occupational Therapist

l Psychologist

l Oncologist

l Urologist

Medical specialists


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2 3

1 Kidney

2 Ureter

3 Bladder

4

4 Urethra

kidney cancer. You can look at these onwww.cancerhelp.org.uk if you choose to. If youdo, bear in mind that these are averages andwill not tell you how well you will do. Somepatients, originally warned that their prospectsof survival were poor, have lived for muchlonger and had a much better quality of lifethan expected.

SurgerySurgery to remove part or all of the kidney isusually the first thing doctors consider and itcan be a cure if the cancer is at an early stage.Even some more advanced cancers can becured if all the cancer can be removed.However, removing a kidney is a majoroperation so you need to be fit enough to copeand recover afterwards. That’s why thistreatment may not be possible for everyone.

Removing part of a kidney is called a partialnephrectomy. It means that some workingkidney is left behind. Specialist surgeons nowtreat many small tumours this way if possible.

During a radical nephrectomy the whole kidneyand the surrounding fatty tissue, the adrenalgland, and nearby lymph nodes are removed.You can live perfectly well with just oneworking kidney, but if both kidneys areremoved or not working you will need dialysisfor the rest of your life.

The surgeon usually makes a cut between thelower ribs on the side of a tumour. This iscalled open surgery. Sometimes it is possible touse keyhole surgery instead. This is called alaparoscopic nephrectomy. The operation iscarried out using several small incisions or cutsrather than one large incision. There may besome advantages to having keyhole surgery. For example, you may experience less pain


after the operation, need a shorter stay inhospital and have smaller scars. However,keyhole surgery – like any operation – hassome risks, so you should discuss the optionswith your specialist before surgery.

After the operation you will be given anintravenous drip of fluid and salts until you caneat and drink normally. Tubes will drain excessfluid from your wound to assist healing. Thesewill be taken out before you go home. You willprobably have a catheter fitted to drain yoururine into a bag. This is usually taken out aftera day or two.

Most people go home between four to ten daysafter their operation depending on the type ofsurgery they had. The time it takes for you tofeel fit enough to get back to leading a normalactive life will vary. It may help to talk to yourdoctor about this.

Doctors have been researching less invasiveways of removing kidney tumours. Cryotherapyfreezes the tumour. Radio-frequency ablation(RFA) and high intensity focussed ultrasound(HIFU) kill the tumour with heat. Theseapproaches maybe useful if your tumour issmall, or when open or keyhole surgery toremove your kidney is not an option The bigadvantage is that these techniques can bedone using probes through the skin so youdon’t have to have open surgery. However, no-one yet knows if they work as well.

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5

4

3

2

1 Cortex

2 Medulla

3 Ureter

4 Renal vein

5 Renal artery

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6 Calyces


l Interferon alpha-2a (Roferon-A® or IntronA®)

l Interleukin-2 or Aldesleukin (Proleukin®)

l Sunitinib (Sutent®)

l Bevacizumab (Avastin®)

l Medroxyprogesterone (Provera®)

Drug treatments

Biological therapies (also known as immunotherapy)This approach stimulates the body’s ownimmune system to attack the cancer cells. Ituses man-made copies of substances madenaturally by the body. These include interferonalpha and interleukin 2. They are used toshrink the cancer and reduce the symptoms itis causing.

Interferon alpha-2a (Roferon-A® or IntronA®)is usually given three times a week by aninjection under the skin using a very fineneedle. You or a relative can be taught to dothis at home using a pen-injection device or apre-filled syringe.

You can arrange for a nurse to visit you athome to help you manage the first fewtimes and give advice on managing any side-effects. These can be similar to flusymptoms: chills, fever, headaches, and achesand pains in your back, joints and muscles.Taking paracetamol half an hour before aninjection and then every six hours until thesymptoms subside often helps. Other side-effects include nausea, loss of appetiteand tiredness. The side-effects tend to lessenas the treatment continues.

Interleukin-2 or aldesleukin (Proleukin®)stimulates white blood cells called T lymphocytes. It can be given as an injectionunder the skin or by a drip into a vein. Theside-effects are similar to those of interferonbut likely to be worse and vary depending onthe dose.

The most common side-effects include chills,fever, headache, aches and pains, nausea andvomiting and loss of appetite. The therapy mayalso cause changes to the pattern of your


heartbeat, fluid on the heart or lungs, orproblems such as depression or confusion. This is why it is usually only given to patientsin specialist cancer centres where doctors andnurses can help them manage the side-effects.

You might be offered one of these biologicaltherapies as part of a research trial. You canget more information about clinical trials fromCancer Research UK (see p19).

Newer biological treatmentsCancer researchers have been working to findnew ways of stopping kidney cancers growing.One of the most promising advances has beenthe development of tyrosine kinase inhibitors.

Tyrosine kinase inhibitors such as sunitinib(Sutent®) and sorafenib (Nexavar®) block theeffects of tyrosine kinase, a protein which ispart of the signalling system that tells cellswhen to divide and grow. These treatments alsostarve the tumour by stopping the developmentof a blood supply.

In the UK, sunitinib and sorafenib wereoriginally approved for the treatment ofadvanced kidney cancer only after interferon orinterleukin has failed to help. Now they can beprescribed as the first course of treatment forpeople with advanced kidney cancer.

Sunitinib comes in tablets. You usually take one50mg a day for four weeks, followed by twoweeks off. Sorafenib is usually taken as two200mg tablets twice a day for as long as thetreatment is helping. In trials, the mostcommon side-effects included fatigue, stomachupsets from diarrhoea to nausea and vomiting,skin discoloration, an increase in bloodpressure and loss of taste and appetite. Many of these side effects can be controlledwith medication.


You can find more information about sunitiniband sorafenib in the kidney cancer questionssection on the Macmillan website.

Drugs that are used to block the blood supplyto a tumour and stop it spreading are calledantiangiogenis agents. Thalidomide is one of them.

Another drug being tested is bevacizumab(Avastin®). This is a type of monoclonalantibody (MAB). MABs recognise abnormalproteins on the outside of cancer cells. They can then target the cancer cells and kill them.

Other treatmentsEmbolisation This is a minor procedure compared to surgery.The aim is to cut the blood supply to thekidney and shrink a tumour in order to controlit or to make it easier to remove surgically. Tinypieces of a special sponge are injected into theartery that leads to the kidney, cutting off thesupply of nutrients and oxygen to the tumour.

RadiotherapyRadiotherapy uses high-energy rays to destroycancer cells while harming normal cells as littleas possible. It can be used to shrink a kidneycancer and so control symptoms. It can also beused if the cancer has spread to other areassuch as the bone.

Treatment is given in the hospital radiotherapydepartment and will be tailored to you. Somepeople have treatment from Monday to Fridayfor several weeks. Others may need only one ortwo sessions. Side-effects can include fatigueand nausea and sore skin. They take a while tobuild up and usually persist for a while afterthe treatment has finished. The specialist

l Where will I have my treatment?

l What will it involve?

l How long will it take?

l How will it affect me?

l What help will I get to deal with side-effects?

l Will I get ever get back to normal or will there be somelong-term effects?

l Will I be able to go back to work?

l What is the aim of this treatment?

l Will the treatment curemy cancer?

Questions you mightlike to ask


(a clinical oncologist) will be able to tell youwhat to expect and how to cope.

ChemotherapyThis is the use of anti-cancer drugs to destroycancer cells. The drugs may be given as tabletsor, more likely, by injection into a vein. Youmay be offered chemotherapy as part of a trialof new drugs or in combination with biologicaltherapy. Different types of kidney cancerrespond to different treatments – chemo isused less often for renal cell cancer thantransitional cell cancer, for instance.Chemo causes your blood count to fall so you will be more prone to infections and tireeasily. You may also feel sick, be sick or loseyour hair. Some drugs make your mouth andthroat sore. Ask your doctor or nurse what toexpect. There are drugs you can take to stopyou feeling sick and mouthwashes you can useto prevent ulcers and the symptoms shouldstop when the treatment does. Your hair shouldgrow back once the treatment is over.

Hormone therapySometimes kidney cancer that has come backresponds to treatment withmedroxyprogesterone (Provera®). Don’t take iton an empty stomach as it can irritate thestomach lining. Side-effects may include waterretention, weight gain, indigestion or nauseaand sleeplessness.

VaccinesCancer vaccines are designed to get the body’sown immune system to fight cancer. Research isgoing on into vaccines that will stop or slowdown advanced kidney cancer, or reduce therisk of the cancer coming back after surgery.


All drugs used to treat cancer can affect fertility.If you are prescribed drugs they may only affectyour ability to have children while you aretaking them. However, with newer treatmentsthe long-term effects may not yet be known, sothis is an important issue to discuss with yourdoctor before you start treatment.

LIVING WITH KIDNEY CANCER

FeelingsIf someone tells you that you have cancer itcan be hard to take everything in. And it canbe doubly hard if you are being told that yourcancer has already spread so far it cannot becured, or that a cancer you thought had gonehas come back.

You will probably go through a whole range ofemotions. Shock and fear. Sadness and anger.Disbelief. Numbness. You might find yourselfthinking: why me? Or: this can’t be happeningto me. There is no right or wrong way to feel – everyone reacts differently. Some people wantto share their feelings and worries with theirpartner, their family or close friends. Othersprefer to come to terms with the news first,before talking to others.

It’s very common to wonder if things you did ordidn’t do in the past are to blame for yourgetting ill. But it isn’t usually possible to tellexactly what caused a person’s cancer and youmay have to accept this. However, some peoplefind they feel much less helpless and more incontrol if they learn as much as they can aboutthe cancer itself and the ways it can be treated.


Even if your cancer cannot be cured, there areways of slowing it down or stopping italtogether for a time. The treatments can alsohelp reduce or take away any symptoms youhave been getting.

Day-to-day livingMake sure you get help to feel as well aspossible. Ask your doctor or nurse aboutreferral to a Macmillan nurse. Macmillan nursesspecialise in helping cancer patients. They areexperts at controlling symptoms and oftenliaise between patients, relatives, GPs and thehospital to improve quality of life for the wholefamily. Some are qualified counsellors. MarieCurie nurses and healthcare assistants alsoprovide support at home. For more informationsee p19.

The body can manage perfectly well with onekidney. But it makes sense to look after theone you have left. So cut down on the amountof salt in your diet. Eat healthily. Aim for morefresh fruit and vegetables and less protein.

Protein-rich foods include meat, fish, eggs anddairy products. If you are a smoker, try to stop.Keep alcohol consumption to a minimum anddrink plenty of water. And don’t take largedoses of Vitamin C supplements.

Money mattersA Macmillan nurse or your GP will be able toadvise you about the grants that are available.These can be for mobility aids or to help withheating costs or household expenses related toyour illness. A Macmillian nurse will also helpyou claim any benefits you are entitled to.Many hospital departments also have a socialworker who can provide helpful information.

l Will the treatment stop the cancer growing? Or spreading?

l What are the risks of this treatment?

l What are the advantages of this treatment?

l What will happen if I don’t have this treatment?

l Will I be able to manage with just one kidney?

l What happens if my other kidney stops working?

l What is the risk of getting cancer in the other kidney?

Questions you mightlike to ask


SupportFamily and friendsPeople who are close to you may find itdifficult to discuss your illness. And you may beafraid that if you talk to people about how youreally feel they will be upset, or disappointedat your lack of stoicism, or embarrassedbecause they don’t know what to say But it isimportant to be able to express your feelingswhen you need to. It can also be difficulttalking to children about cancer. How muchshould you tell them? How honest should yoube? Macmillan and CancerHelp UK have someuseful advice.

Other supportSometimes it can be easier to talk thingsthrough with someone outside the family. Thiscould be a specialist adviser or someone whohas gone through a similar situation and knowshow you are feeling. The James Whale Fund forKidney Cancer can put you in touch with avolunteer to talk to or you can join the forumat www.jameswhalefund.org. You could alsocall the Macmillan CancerLine 0808 808 2020.If you leave a message out of hours someonewill call you back.

Self-helpRegular exercise can help you feel better bothphysically and emotionally. Ask your doctor ornurse what kind of exercise would be best.Many people find that alternative therapies –such as massage, aromatherapy, meditation orvisualisation – can also lift the spirits, easetension and restore a feeling of well-being. You can find out if any of these therapies areavailable near you by contacting NewApproaches to Cancer, a UK charity (see p19).


WHERE TO FIND MORE INFORMATION

Cancer Research UK is the largest cancerresearch organisation in the world. One of itswebsites is CancerHelp UK, a free informationservice about cancer and cancer care for peoplewith cancer and their families.www.cancerhelp.org.uk

Macmillan Cancer Support helps people livingwith cancer and their family, friends and carersfind a way through the maze of cancer supportand information in the UK.www.macmillan.org.ukCall CancerLine 0808 808 2020Textphone 0808 808 0121

Marie Curie Cancer Care runs hospicesthroughout the UK and provides a nationwideMarie Curie nursing service.www.mariecurie.org.ukCall 020 7599 7777

New Approaches to Cancer promotes thebenefits of using complementary therapiesalongside conventional medical treatments.www.anac.org.ukCall 0800 389 2662


GLOSSARY

Adjuvant therapy A treatment given in addition to themain treatment (for example,radiotherapy as well as surgery) to tryto prevent a cancer from coming back.

Advanced cancer This usually means a cancer that hasspread from where it started to anotherpart of the body. ‘Locally advanced’cancer usually means the cancer hasgrown outside the organ that it startedin and into nearby body tissues.

Angiogenesis Growth of blood vessels. Growingcancers can attract new blood vesselsto grow towards them so that they canget their own blood supply.

Biological therapy Treatment that uses natural bodysubstances or drugs made from naturalbody substances to treat cancer.

Biopsy A piece of body tissue taken so thatthe cells can be looked at under a microscope.

Catheter Tube that is passed into the body todrain fluid.

Cells Every part of the body is made up of specialized, individual cells. Cancerstarts with one cell becomingcancerous.

Clear margins After a cancer has been surgicallyremoved the tumour is checked tomake sure it is surrounded by a borderof tissue that has no cancer cells. Thisis called a 'clear margin'. Removingthis border as well as the cancerlowers the risk of the cancer coming back.

Combination therapy Using two or more types of treatmenteg surgery and chemotherapy orchemotherapy and radiotherapy.

Cystectomy Surgical removal of the bladder.

Cystoscopy A bladder test. A surgeon puts a tubeinto the bladder and uses it to lookinside the bladder and urethra to checkif there is anything wrong.

Diagnosis Finding out what is wrong.

Dialysis An artificial way of filtering wasteproducts and excess water from yourblood when your kidneys can’t.

Haematuria The presence of blood in the urine.

Lymph nodes or glands Glands which fight infection and filterbody fluid (lymph).

Metastases or secondaries Areas of cancer spread.


NephrectomySurgical removal of a kidney. Eitherradical or partial. [Gr nephros, a kidney].

OncologyThe study and treatment of tumours.

Palliative treatment Treatment given to control symptomsrather than to cure.

Positron Emission Tomography (PET)a diagnostic test.

Primary cancer (Primary tumour) Where the cancer started. The type ofcell that has become cancerous will bethe primary cancer - for example, if abiopsy from the liver or lung containscancerous kidney cells, then theprimary cancer is kidney cancer.

PrognosisThe likely outlook for someone with a disease.

Quality of life This means looking at how a treatmentis affecting your life, not just the effecton your cancer.

Recurrence Cancer that has come back again after treatment.

RemissionIf a cancer is in remission, there is nosign of it on scans or when the doctorexamines you. Doctors use the word'remission' instead of cure whentalking about cancer because theycannot be sure that there are no cancercells at all in the body.

TumourAnother word for a cancerous lump.

Transitional Cell Carcinoma (TCC)A type of cancer that develops in the lining of the bladder, urethra andrenal pelvis.

UrologyThe study and treatment of the urinarytract in women and the urogenitalsystem in men.


NOTES

The help button forkidney cancer patients

Click on www.jameswhalefund.org to discover awealth of information on kidney cancer for patientsand carers. Speak to carers and patients, join aforum to swap experiences, visit our on-line shopand much more...

The UK’s leading specialist kidney cancer charity

The Fund was set up in 2006 by broadcaster James Whale who lost a kidneyto cancer six years earlier. Our mission is to help reduce the harm caused bykidney cancer by increasing knowledge and awareness, providing patientinformation and by supporting research into the causes, prevention andtreatment of the disease.

Help our causeThe Fund’s ability to achieve its aims is dependant on the support it receivesfrom the general public. If you would like to make a donation, you can do soin the following ways:

Make a donation online by visiting www.jameswhalefund.org

Send a cheque made payable to ‘James Whale Fund’ to James Whale Fund for Kidney Cancer, 46-48 King Street Cambridge CB1 1LN

Make a credit or debit card payment (except Diners) on the phone, by calling 01799 585033.

If you would like to offer your support in other ways, we’d be very pleased tohear from you.

The Kidney Cancer Support Network, with financial assistance from the James Whale Fund for Kidney Cancer provides a patient forum which allowspatients and carers to exchange information and offer support.

www.kidneycancersupportnetwork.co.uk

© 2008 James Whale Fund Limited. Company No. 05937304. (England and Wales) James Whale Fund for Kidney Cancer is a trading name of James Whale Fund Limited. Registered Charity No.1120146.

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A large text version of this document is available.Please contact the James Whale Fund for Kidney Cancer for copies.

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