A practical guide to tests and treatments Contents
Contents
About this booklet 4
Section 1: Cervical screening 6 The cervix 7 Cervical screening 9 The screening test 12 Can cervical screening prevent cancer? 15 Abnormal test results 18
Section 2: Cervical intra-epithelial neoplasia (CIN) 23 What is CIN? 24 Causes of CIN 24 Symptoms of CIN and HPV 26 How CIN is diagnosed 27 Grading of CIN 29 Treating CIN 30 After treatment 38 Follow-up 40 Pregnancy and abnormal cervical screening results 42
Your feelings 44 How we can help you 45
1 Understanding cervical screening
Other useful organisations 49 Further resources 52 Your notes and questions 55
2
Understanding cervical screening
About this booklet
This information is for women who have had, or are about to have, a cervical screening test. We hope that it answers some of the questions you may have.
This booklet is divided into two sections. The first section aims to help you understand how cervical screening is done and what further tests may be needed if you have an abnormal test result. The second section is about the causes, diagnosis and treatment of cell changes in the cervix (cervical intra-epithelial neoplasia, CIN).
We can’t advise you about the best treatment for yourself. This information can only come from your own doctor, who knows your full medical history.
We have a booklet called Understanding cervical cancer, which is for women who have been diagnosed with cancer of the cervix. We can send you a copy.
If you’d like to discuss this information, call the Macmillan Support Line free on 0808 808 00 00, Monday–Friday, 9am–8pm. If you’re hard of hearing you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Alternatively, visit macmillan.org.uk
4 About this booklet
Turn to pages 49–54 for some useful addresses and websites, and pages 55–56 to write down questions for your doctor or nurse.
If you find this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you.
5 Understanding cervical screening
Section 1: Cervical screening
The cervix 7
Cervical screening 9
The screening test 12
Can cervical screening prevent cancer? 15
Abnormal test results 18
6 The cervix
The cervix
The cervix is the lower part of the womb (uterus) and is often called the neck of the womb.
It’s possible for your doctor or nurse to see and feel the cervix during an internal (vaginal) examination.
Fallopian tube Ovary Bladder Womb Cervical Cervix canal Vagina Urethra
The cervix and surrounding structures
The surface of the outside of the cervix is covered with flat cells called squamous cells. The cervical canal (endocervix) is lined with longer cells called columnar cells or glandular cells, which produce mucus. The area where these cells meet is known as the transformation zone (see page 8). Cells in this transformation zone can become abnormal. It is these cells, on the surface of the cervix, that are examined in a cervical screening test.
7 Understanding cervical screening
Womb (uterus)
Cervical canal
Transformation zone
The transformation zone
8 Cervical screening
Cervical screening
Cervical screening is a way of detecting early changes to cells of the cervix. It’s not a test for cancer, but it can help prevent cervical cancer by identifying early abnormalities that could become cancer if left untreated.
The first step in cervical screening is to take a sample of cells from the cervix using a method known as liquid-based cytology (see page 13). This is often referred to as a cervical smear.
In the UK, the NHS provides a cervical screening programme for all women who are registered with a GP. The ages when women are invited to attend, and how often screening takes place, varies slightly between the four countries.
In England and Northern Ireland: • women are sent their first invitation for routine cervical screening at the age of 25 • women between the ages of 25–49 are invited for cervical screening every three years • women between the ages of 50–64 are invited for screening every five years.
In Scotland, cervical screening is offered every three years to women aged 20–60.
In Wales, women aged 20–64 are called for a cervical screening test every three years.
9 Understanding cervical screening
Once women reach the age of 60–65 (depending on the country they live in), they are no longer invited to have cervical screening unless they’ve had recent cervical changes or haven’t been screened since they were 50. The reason for an upper age limit is because if the cells in the cervix are normal at this time, it’s very unlikely that a cancer will develop in later years. However, women aged 60 and over who’ve never had a screening test are entitled to have one.
Women under 25 (20 in Wales and Scotland) aren’t routinely screened as part of the screening programme because changes in a young woman’s cervix are quite normal. In this situation, screening may lead to unnecessary treatment. Research has also shown that screening women in their early 20s isn’t very effective at preventing cervical cancer.
Women who have never been sexually active have a very low risk of developing cervical cancer. However, although their risk is very low, there’s still a small possibility of cervical cancer so screening is still recommended. If you’ve never had sex you may choose not to be screened, and your GP or practice nurse can discuss this with you further.
Women who are no longer sexually active, but who were in the past, are still recommended to be screened when invited. This also applies to women who’ve been vaccinated against human papilloma virus (HPV) – see page 26. Women who’ve never had penetrative sex and women in same-sex relationships are also advised to be screened as they may still have been exposed to HPV (see pages 24–25).
10 Cervical screening
Women of any age, who’ve had treatment for abnormal cells on the cervix within the last 10 years, may need to have a screening test more often than suggested on page 9. Your GP can discuss this with you.
Where to go for your screening test
You’ll be sent a letter from your local primary care support service or GP asking you to make an appointment for your screening test. Most women choose to have the test done by their practice nurse or GP. You can ask to have it done by a female doctor or nurse if you prefer.
Cervical screening tests can also be done at a family planning clinic, Well Woman clinic, sexual health clinic or a genitourinary clinic. NHS Direct (see page 54) can give you details of your local clinic. Screening tests can also be done at private clinics.
11 Understanding cervical screening
The screening test
Cervical screening isn’t a test for cancer. It’s used to detect early changes in cells of the cervix, which may develop into cancer in the future.
Preparing for the test
Before you have your cervical screening test, you may find it helpful to consider the following factors: • The best time to have the test is before or after your period, when you are not bleeding. • If you’re pregnant when you are invited for your routine cervical screening test, tell your GP. Your GP will usually recommend that you wait to have your test three months after you have given birth. Occasionally, you may be asked to have a screening test while you’re pregnant (see page 42).
Many women feel nervous and embarrassed about going for a cervical screening test. These are natural emotions and they shouldn’t stop you having it done. If you feel unsure about having the test, it may be helpful to discuss your concerns and worries with the practice nurse or your GP. They can talk to you about the screening and reassure you so you feel able to have the test.
12 The screening test
Having the test
Cervical screening is done using a test called liquid-based cytology. It’s a very simple procedure and takes less than five minutes. It can be uncomfortable but shouldn’t be painful. There are no side effects, and once it’s over you should be able to get back to your normal day. The person carrying out the test will explain the procedure, and you should feel able to ask questions at any time.
Once you’re lying comfortably on the couch, the doctor or nurse will gently put an instrument called a speculum into your vagina so that your cervix can be seen. A special brush will be used to gently take cells from the cervix. The head of the brush is then either rinsed into a small container of preservative, or snapped off and put into the container. The container will be sent to the laboratory for examination.
In the laboratory, any blood or mucus that could spoil the test is removed from the sample. Then a thin layer of cervical cells are then spread onto a slide and examined under a microscope.
‘In my experience it’s not painful, I’m not particularly embarrassed, and it’s just one of those things that you want to get done to make sure everything is alright.’ Cathy
13 Understanding cervical screening
Results
You’ll receive a letter with your results within about two weeks of having the test done. A copy of the report is also sent to the GP practice where the test was done. If you don’t hear anything within six weeks, you can phone the surgery or clinic and ask them to check up on your results.
If the results show there may be abnormal cells in the cervix, you’ll be contacted and either another test will be arranged, or you’ll be referred to a specialist – for example, a gynaecologist or a nurse colposcopist (see pages 27–28).
14 Can cervical screening prevent cancer?
Can cervical screening prevent cancer?
For most women, cervical screening can prevent cancer. The cervical screening programme isn’t 100% effective, but regular cervical screening every 3–5 years is the best way to detect changes to the cells of the cervix. Almost half of the women who develop cervical cancer in the UK have never had a cervical screening test.
Benefits and difficulties of cervical screening
The main benefits and difficulties are explained here:
Benefits • Cervical screening reduces the risk of developing cervical cancer. • The number of women who develop cervical cancer has halved since the 1980s due to most women regularly having cervical screening. • Cervical cancer is now an uncommon illness in the UK due to regular screening. • NHS cervical screening saves around 5,000 lives a year in England.
15 Understanding cervical screening
Difficulties • Cervical screening can show minor changes that may go back to normal on their own, but knowing they are there can be worrying. • Sometimes, too few cells are taken or the cells can’t be seen properly and the test will need to be done again. • Regular cervical screening can prevent cancers from developing, but it doesn’t prevent every case. • Cervical screening doesn’t pick up every abnormality of the cervix. • Some women find the test an unpleasant experience.
Reliability of cervical screening
Cervical screening, like other screening tests, isn’t perfect. So it is not always possible to detect early cell changes that can lead to cancer.
Abnormal cervical cells in your sample may not be recognised because: • sometimes they don’t look very different from normal cells • there may be very few abnormal cells in the sample.
Occasionally, a test will have to be taken again because: • there may not have been enough cervical cells in your sample to give an accurate assessment • the sample may not have been properly prepared • the container your sample was put in may have been broken.
16 Can cervical screening prevent cancer?
Although every effort is made to ensure the screening programme works properly, very occasionally mistakes happen.
In recent years, the cervical screening programme has been improved so that mistakes are far less likely. All screening samples are now checked by two technicians so that the chance of missing an abnormality is greatly reduced.
Cervical screening is very effective at picking up early changes, but you should see your GP if you have any unusual symptoms, such as bleeding after sex or between periods. If you have symptoms, you may need to be referred for tests.
What happens to test samples once they’ve been looked at?
The laboratory that looks at your sample will keep it for at least 10 years. Your latest result can then be compared with the ones you’ve had before. This is to make sure you get the treatment you may need. All screening records, including your samples, can be looked at again (reviewed) if needed.
On the rare occasion that a review shows you should have been cared for differently, you’ll be contacted. For more details about NHS record keeping you can contact NHS Direct – see page 54.
17 Understanding cervical screening
Abnormal test results
Most women who have a cervical screening test have a normal result.
Some women’s tests will show that they have changes in the cells of their cervix. This is known as an abnormal result. This means the laboratory has found some cell changes that may need further investigation.
Often the changes may be due to inflammation or infection. Sometimes certain medicines, such as hormonal therapies for gynaecological conditions or breast cancer, can cause changes in the cervix. For this reason, it’s important to let the person carrying out the screening know about any medicines you’re taking.
Your screening report usually refers to the cell changes as borderline, mild, moderate or severe. These cell changes may also be called dyskaryosis. • Mild cell changes (mild or low-grade dyskaryosis). • Moderate cell changes (moderate or high-grade dyskaryosis). • Severe cell changes (severe or high-grade dyskaryosis).
Cell changes in the cervix are often associated with the human papilloma virus (HPV), which is transmitted by sexual intercourse. HPV is a very common virus; there are over 100 types. Only some types of the virus, known as high-risk types, are associated with changes in the cervical cells that may go on to develop into cancer.
18 Abnormal test results
19 Understanding cervical screening
Testing of cervical screening samples for high-risk types of HPV is now being introduced in some areas of the country. If you live in an area where it has been introduced, your cervical screening sample may be tested to see if it contains a high-risk type of HPV. This is explained in more detail below.
You can find out more about HPV on pages 24–25.
Borderline or mild cell changes (low-grade dyskaryosis)
Most abnormal results from screening tests show only very minor changes. The majority of these changes go back to normal on their own.
If your screening test shows that you have borderline or mild cell changes, what happens next depends on whether HPV testing is available in the area where you live. If HPV testing is available, you’ll be given more information about this along with your screening invitation.
If HPV testing isn’t available in the area where you live Your GP may arrange for you to be referred for a colposcopy (see pages 27–28), or to have a second screening test in six months time – this will allow the cell changes to go back to normal on their own. If your second screening test shows that the cells have gone back to normal, you’ll be asked to have two further screening tests at six-monthly intervals. If the cells remain normal, you’ll be called again for screening in three or five years’ time (depending on your age) to check that the cells are still normal.
20 Abnormal test results
If your second screening test shows abnormal cells, your GP or practice nurse will arrange for you to have a colposcopy, which is a more detailed examination of the cervix (see pages 27–28).
If HPV testing is available in the area where you live Your screening sample will be tested for HPV. If high-risk HPV isn’t found in your sample, you won’t need any further tests. This is because the cell changes are likely to go back to normal on their own. You’ll be called again for screening in three or five years’ time (depending on your age).
If your sample is found to contain a high-risk type of HPV, you’ll be referred for a colposcopy.
If you smoke, mild cell changes are less likely to go back to normal. If you’d like to give up smoking, your GP will be able to give you helpful advice. We also have a booklet called Giving up smoking, which we can send you.
Moderate or severe cell changes (high-grade dyskaryosis)
A small number of women will have moderate or severe cell changes. If you have these cell changes, your GP or practice nurse will suggest that you have a colposcopy within a few weeks.
A colpsocopy involves a detailed examination of your cervix using a colposcope. It helps confirm whether you have cervical intra-epitheial neoplasia (CIN) and how severe it is. CIN is when changes occur in the surface (squamous) cells of the cervix.
21 Understanding cervical screening
CIN is graded 1, 2 or 3 (see page 29) depending on how deep the cell changes go into the cervix.
You can find more detailed information about colposcopy and CIN in section 2 of this booklet.
Cervical glandular intra-epithelial neoplasia (CGIN)
Sometimes a screening test may find changes in the columnar or glandular cells that line the cervical canal (see diagram on page 8). CGIN stands for cervical glandular intra-epithelial neoplasia. If left untreated, these changes may develop into a type of cancer known as adenocarcinoma. It’s much less common for changes to occur in these cells.
Cervical cancer
A cervical screening test can very occasionally detect early cervical cancer, but most women with an abnormal test result have early cell changes and not cancer.
Very few women with an abnormal test result have cancer of the cervix.
If the result of your cervical screening test shows there are changes in the cells of the cervix, you should have the chance to discuss this with your GP or practice nurse. You can also discuss it with our cancer support specialists on freephone 0808 808 00 00.
22 Section 2: Cervical intra-epithelial neoplasia (CIN)
Section 2: Cervical intra-epithelial neoplasia (CIN)
What is CIN? 24
Causes of CIN 24
Symptoms of CIN and HPV 26
How CIN is diagnosed 27
Grading of CIN 29
Treating CIN 30
After treatment 38
Follow-up 40
Pregnancy and abnormal cervical screening results 42
23 Understanding cervical screening
What is CIN?
Cervical intra-epithelial neoplasia (CIN) is a term used to describe changes in the squamous cells of the cervix.
CIN is not cancer, but treatment may be needed to prevent squamous cell cervical cancer developing. You may hear some doctors use the term pre-cancerous condition to describe CIN.
Treatment isn’t always needed for CIN (see pages 30–37), but if you do need treatment it’s usually very successful.
Causes of CIN
Not all the causes of CIN are known. But they include:
Smoking
Women who smoke are almost twice as likely to develop CIN as non-smokers.
Human papilloma virus (HPV)
The main cause of CIN is infection of the cervix with certain types of human papilloma virus (HPV). There are over 100 types of the virus, and the most common types can cause warts on the hands or verrucas on the feet. Some types can affect the genital area including the cervix, although not all of these will show any symptoms such as warts. The types of HPV that cause genital warts are not the same as the types that can lead to CIN.
24 Causes of CIN
The types that cause genital warts are known as low-risk HPV types.
The human papilloma virus is sexually transmitted, and the possibility of contact with it increases with the number of sexual partners a woman or her partner has had. It’s more common in women who become sexually active at a young age, when their cervix may be immature and more vulnerable.
HPV is so common that most sexually active women will be exposed to it at some time in their life. There is evidence that barrier methods of contraception, such as the cap or condoms, give some protection against the spread of HPV, but they won’t cover all the susceptible areas. In most women, their body’s own immune system will get rid of the HPV naturally without them ever knowing it was there.
Some types of HPV can make women more likely to develop CIN. These are known as high-risk types of HPV. In some women they cause changes in the cervix, which show up as an abnormality during the screening tests. Very rarely, these changes can go on to develop into CIN or cervical cancer if they are left untreated. Through regular cervical screening, the changes caused by HPV can be picked up early and any treatment needed is simple and effective.
25 Understanding cervical screening
HPV vaccines
Two vaccines have been produced to prevent HPV. These are called Gardasil® and Cervarix®. It’s hoped that these vaccines will prevent at least 7 in 10 (70%) of the most common type of cervical cancer (squamous cell). But HPV vaccinations won’t replace the need for regular cervical screening tests in women.
Any vaccine works best if it’s given to children before they reach puberty. As the HPV virus is passed on during sex, the vaccine is most effective if it’s given to girls before they might start having sex. Girls aged 12–13 are now routinely offered the HPV vaccine Gardasil. Gardasil protects against two of the most important types of HPV (HPV 16 and 18) that can cause cervical cancer. It’s also effective against the types of HPV that can cause genital warts.
We have fact sheets that explain HPV and cancer, and HPV vaccines, in more detail.
Symptoms of CIN and HPV
CIN and HPV have no symptoms, so it’s essential for women to have regular cervical screening tests to detect any early cell changes.
26 How CIN is diagnosed
How CIN is diagnosed
If following your screening test you have an abnormal test result (see pages 18–22), you may be referred for a colposcopy.
Colposcopy
A colposcopy shows the cervix in detail using a specially-adapted type of microscope called a colposcope. It acts like a magnifying glass, so that the person doing the examination can see the whole cervix clearly. A colposcopy is used to confirm whether you have CIN (or very rarely, if you have cancer) and how severe it might be (see page 29).
You’ll have your colposcopy at your local colposcopy unit, which is usually at a hospital outpatient’s clinic. Almost all hospitals with gynaecological units have the facilities to do a colposcopy.
A colposcopy can be carried out by a specialist doctor or a nurse colposcopist. Colposcopists follow national guidelines when deciding whether you need further tests or treatment. Before your examination, you’ll have a chance to discuss your screening test results, and any worries that you have, with the doctors or nurses at the clinic.
You’ll be helped to position yourself on a specially-designed chair or examination table. When you’re lying comfortably, the colposcopist will use a speculum, in the same way as in the screening test, so that your cervix can be seen. The cervix is then painted with a liquid to make the abnormal areas show up more clearly. A light is shone onto the cervix and the doctor or nurse will look through the colposcope, which stays outside
27 Understanding cervical screening
your body, to examine the surface of the cervix. A small sample (biopsy) of cells may be taken from the cervix. These cells are examined under a microscope in the laboratory.
A colposcopy takes 15–20 minutes and so is longer than the screening test. It’s not usually painful, but you may feel some pain if a biopsy is taken. The biopsy may also cause some slight bleeding for a couple of days afterwards.
‘It was not an unpleasant experience; the doctor was superb, as was the nurse. They took me through what was going to happen and asked me if I had any worries about the procedure.’ Anna
28 Grading of CIN
Grading of CIN
CIN is graded depending on how deep the cell changes go into the surface of the cervix: • CIN 1 – this is when one-third of the thickness of the surface layer of the cervix is affected. • CIN 2 – this is when two-thirds of the thickness of the surface layer of the cervix is affected. • CIN 3 – this is when the full thickness of the surface layer of the cervix is affected.
Knowing the grade of your CIN helps your colposcopist plan the best treatment for you.
With all three grades of CIN, often only a small part of the cervix is affected by abnormal changes.
CIN 3 is also known as carcinoma-in-situ. Although this may sound like cancer, CIN 3 is not cervical cancer. Cancer has developed when the deeper layers of the cervix are affected by abnormal cells. However, it’s important that if CIN 3 is picked up during screening tests, plans are made to treat it as soon as possible.
29 Understanding cervical screening
Treating CIN
CIN 1
Often, cells showing CIN 1 will return to normal without any treatment at all. If your colposcopist decides not to treat these minor changes, they’ll arrange for you to have further screening tests (see pages 40–41). This is to make sure that any further changes that may occur are quickly recognised.
CIN 2 and 3
Most doctors and researchers agree that CIN 2 and 3 should be treated. The aim of treatment is to remove the abnormal area, while causing as little damage as possible to surrounding healthy tissue. It’s also possible to destroy the abnormal cells, rather than remove them, although this isn’t commonly done.
Ways of removing the abnormal area include: • large loop excision of the transformation zone (LLETZ) (see page 33) • a cone biopsy (see pages 34–35) • a hysterectomy or trachelectomy, although this is rare (see page 37).
Ways of destroying the cells in the abnormal area so that normal cells can grow back in their place include: • laser therapy (see page 35) • cold coagulation (see page 37) • cryotherapy (see page 37).
30 Treating CIN
Currently, LLETZ is the most commonly used method of treatment.
How treatments are given
Most women only need one of the treatments described here. All of the treatments are usually very effective at removing the abnormal cells. The type of treatment you have will depend on a number of factors. These will include the facilities available at your local hospital, and the type of treatment that your doctor thinks is best for you.
It may be possible for the treatment to be done at the same time as your initial colposcopy appointment, or you may have to come back at a later date.
LLETZ, laser therapy, cryotherapy, cold coagulation and sometimes cone biopsies are carried out in a hospital outpatient clinic using a local anaesthetic. This means that you can go home after treatment. It can be helpful for someone to either come with you while you’re having the treatment or pick you up afterwards.
Before your treatment, the nurse will help you lie comfortably on the couch. The colposcopist will then use a speculum so that they can see your cervix.
Try to relax as much as possible and don’t be afraid to ask the colposcopist any questions about your treatment. The treatment itself is likely to take around 5–10 minutes and although it may be uncomfortable, it isn’t painful.
31
Treating CIN
The different types of treatment
Large loop excision of the transformation zone (LLETZ) LLETZ is the most commonly used treatment for removing abnormal cells from the cervix. It’s sometimes called LEEP (loop electrosurgical excision procedure). It takes about 5–10 minutes and is usually done under local anaesthetic as an outpatient procedure. Sometimes, if a larger area of the cervix is treated, a general anaesthetic may be used.
Once you’re in a comfortable position, the colposcopist will put some local anaesthetic into your cervix to numb it. They’ll then use the colposcope to see a magnified image of your cervix (see page 7) and, with a thin wire loop, remove the abnormal tissue. The loop is heated with an electric current, which cuts and seals the tissue at the same time. This shouldn’t cause any pain although you may feel some pressure inside your cervix.
The tissue will be sent off to a laboratory to be checked and to confirm the type of abnormal cell changes. Depending on the result, your colposcopist will decide whether you need to be followed up either at the colposcopy clinic or with your GP.
LLETZ is not usually painful, but you may experience a period-like pain or a burning sensation. After the treatment you may have some light bleeding or discharge, which can last for around four weeks. Your doctor or nurse will give you more information about what to expect after your treatment. LLETZ will not affect your ability to enjoy sex once your cervix has healed. But you should avoid sex, swimming, tampons and baths until the cervix has healed and any bleeding has stopped. Your colposcopist will give you more information about this.
33 Understanding cervical screening
Cone biopsy This is another treatment for CIN that involves removing abnormal tissue from the cervix.
A cone biopsy is usually carried out under a general anaesthetic, but sometimes a local anaesthetic may be given. The doctor uses a scalpel to take a small, cone-shaped piece of tissue from the cervix, which will be examined under a microscope. Afterwards, a small pack of gauze (like a tampon) may be put into the vagina to prevent bleeding. This is usually removed within 24 hours before you go home. Some women may also have a tube (catheter) put into the bladder to drain urine while the gauze pack is in place.
Womb (Uterus)
Cervix Area of biopsy
Transformation zone Vagina
Area removed during a cone biopsy
34 Treating CIN
It’s normal to have some light bleeding and discharge for around four weeks. You should avoid any sex and strenuous exercise for at least four weeks to allow the cervix to heal properly.
Sex after LLETZ or a cone biopsy Neither LLETZ or a cone biopsy will affect your ability to enjoy sex once your cervix has healed.
Fertility after LLETZ or a cone biopsy Very rarely, the cervix can become tightly closed after treatment. This is known as stenosis. It can make it harder for the sperm to enter the womb and so can affect your chances of becoming pregnant naturally. Your cervix is not completely closed if you’re still bleeding during your periods.
Pregnancy after LLETZ or a cone biopsy Sometimes treatment can make the cervix slightly weaker. This is unlikely with a single treatment, but if you need more than one treatment the cervix may weaken. Very rarely, this may mean that towards the end of a pregnancy when the baby is bigger, the weakened cervix may start to open early causing a premature birth. To stop this happening, a stitch may occasionally be put into the remaining part of the cervix during pregnancy. The stitch is removed before you go into labour. Your doctor will discuss this with you in more detail if you’re concerned about future pregnancies.
Laser therapy or laser ablation Under local anaesthetic, a laser beam is directed at the abnormal areas of your cervix and the cells are destroyed. During the treatment you may notice a slight burning smell from the laser. This is normal.
35 Understanding cervical screening
36 Treating CIN
Cold coagulation This is a misleading name as the abnormal cells are removed by heating, not cooling. Firstly, a local anaesthetic is given to numb your cervix, then a hot probe is placed onto its surface.
Cryotherapy You’ll be given a local anaesthetic, and a probe will be put on your cervix to freeze the abnormal cells. Cryotherapy has a slightly lower success rate than the other treatments for CIN, and so it’s not often used.
Hysterectomy or tracheloctomy These types of surgical treatment are rarely needed for CIN.
A hysterectomy This is an operation to remove the womb and cervix. It’s sometimes done for persistent or severe CIN if women have other gynaecological problems and are past childbearing age, or don’t want to have more children. Your doctor may discuss with you whether to remove your ovaries during the surgery. For women who’ve not yet had the menopause, removing the ovaries will bring on an early menopause.
We can send you more information on having a hysterectomy.
A trachelectomy Instead of having a hysterectomy, it’s sometimes possible to have an operation where the cervix is removed and the womb is left in place. This type of operation is known as a trachelectomy. Because the womb is left in place, it’s still possible to become pregnant after this operation. A trachelectomy is mainly carried out in younger women who still want to have children. Your doctor will be able to give you more information about whether this type of surgery is suitable for you. 37 Understanding cervical screening
After treatment
Unless you’ve had a hysterectomy, trachelectomy, or possibly a LLETZ or cone biopsy under a general anaesthetic, you’ll be able to go home on the day that you’re treated.
Most women feel fine after treatment to the cervix, which involves a local anaesthetic, but some women feel slightly unwell for a few hours. It’s a good idea to have the day off work, in case you need to go home and rest. Many women find it helps to bring a relative or friend to support them and drive them home.
If your treatment was done under local anaesthetic, you may have some period-like pains for the rest of the day once the anaesthetic has worn off. You should expect to have some bleeding or discharge after these treatments. This usually stops within four weeks but may last up to six weeks. The bleeding shouldn’t be heavier than a moderate period and should get steadily lighter.
You should contact your GP or the clinic where you had your treatment if: • the bleeding starts to get heavier – for example, completely soaking a pad within two hours • the discharge starts to smell offensive, which can mean that you have an infection • you develop a temperature • you have severe pain • you have any other concerns.
38 After treatment
Your doctor or nurse will probably advise you not to have sex for at least four weeks after your treatment to allow the cervix to heal properly. You may also be advised not to use tampons for four weeks. You should feel completely back to normal within about six weeks.
Research has shown that treatments for CIN are usually very successful. Although most women will have no further problems and the CIN will not come back, all women still need to continue with regular cervical screening tests.
39 Understanding cervical screening
Follow-up
If you have no treatment
If your colposcopy shows you have CIN 1 and your colposcopist decides not to treat these minor changes, you’ll usually have a repeat screening test after six months. This is to make sure that more cell changes don’t take place.
If you have treatment
You’ll be invited to have a follow-up screening test six months after your treatment. This is to make sure that the treatment has been successful and that the abnormal cells haven’t come back.
Moderate or severe cell changes If your follow-up screening test shows that abnormal cells have come back, and you have moderate or severe cell changes, you’ll be referred for another colposcopy.
Normal, borderline or mild cell changes If your follow-up screening test shows that you have normal, borderline or mild cell changes, what happens next depends on whether HPV testing is carried out in the area where you live.
If HPV testing isn’t carried out in the area where you live After your six-month, follow-up screening test, you’ll usually have a further screening test 12 months after treatment. If both these tests are normal, you may continue with yearly screening tests for a period of time and then go back to routine tests every 3–5 years (depending on your age). If any of your tests show abnormal cells, you’ll be referred back to the colposcopy clinic.
40 Follow-up
If HPV testing is carried out in the area where you live Your sample from your six-month, follow-up screening test will be checked to see if the HPV infection has gone or if you have a high-risk HPV infection. If high-risk HPV is found, you’ll be referred for another colposcopy. If it isn’t, you’ll be screened again in three years’ time.
Treating abnormal cells that come back
For most women, treatment for CIN is very successful. However, for some women, the abnormal cells can come back. If this happens, you’ll be invited for another colposcopy and further treatment if necessary.
Very occasionally, if the abnormal cells continue to come back after treatment, some women are advised to have a hysterectomy or trachelectomy (see page 37) to prevent them from developing cancer of the cervix. Your doctor will discuss the most suitable treatment options with you.
Even if you’ve had a hysterectomy or trachelectomy, you’ll still need to have regular check-ups using liquid-based cytology (see page 13). The sample of cells will be taken from the top of the vagina. This is sometimes called a vaginal vault smear. Your GP or gynaecologist can organise this for you, as vault smears aren’t done as part of the NHS Cervical Screening Programme (see page 49).
41 Understanding cervical screening
Pregnancy and abnormal cervical screening results
If you become pregnant and you’re not up to date with your screening tests, or you’ve previously had an abnormal test result, your GP or midwife may ask you to have a screening test at your first antenatal appointment. It’s safe to have a cervical screening test during pregnancy. It may cause a small amount of bleeding afterwards, but this is normal.
If the test result is abnormal, you’ll then be asked to have a colposcopy. A colposcopy doesn’t cause any harm to the developing baby. If you need to have treatment, it’s usually safe to wait until after the baby is born.
42 Pregnancy and abnormal cervical screening results
43 Understanding cervical screening
Your feelings
Fear
When a woman is told she has an abnormal screening test result, the first reaction is often one of fear. Many women may immediately think that they have cancer, so it’s important to remember that most women who have an abnormal result have early changes in the cells and don’t have cancer.
Shame
There has been a lot of publicity about CIN and its link with sexual activity and HPV. This has sometimes led to women feeling guilty or ashamed if they’ve been told they have CIN. However, you shouldn’t feel you’re to blame in any way. Exactly how a person gets the virus is often uncertain and it’s not always possible to find a sexual explanation.
Most women have HPV at some point in their life without even knowing it. In many women, their immune system will get rid of the virus naturally.
Embarrassment
Understandably, many women may find the treatments for CIN embarrassing and possibly frightening. Don’t be afraid to ask your doctor or nurse as many questions as you like, as this may help to put your mind at rest.
If you feel that you need support, you can contact our cancer support specialists on 0808 808 00 00 or any of the organisations on pages 49–51.
44 How we can help you
How we can help you
Cancer is the toughest fight most of us will ever face. But you don’t have to go through it alone. The Macmillan team is with you every step of the way.
Get in touch Macmillan Support Line Our free, confidential phone Macmillan Cancer Support line is open Monday–Friday, 89 Albert Embankment, 9am–8pm. Our cancer London SE1 7UQ support specialists provide Questions about cancer? clinical, financial, emotional Call free on 0808 808 00 00 and practical information and (Mon–Fri, 9am–8pm) support to anyone affected by www.macmillan.org.uk cancer. Call us on 0808 808 Hard of hearing? 00 00 or email us via our Use textphone website, macmillan.org.uk/ 0808 808 0121 or Text Relay. talktous Non-English speaker? Interpreters are available. Information centres Our information and support Clear, reliable information centres are based in hospitals, about cancer libraries and mobile centres, and offer you the opportunity We can help you by phone, to speak with someone email, via our website and face-to-face. Find your nearest publications or in person. one at macmillan.org.uk/ And our information is free to informationcentres everyone affected by cancer.
45 Understanding cervical screening
Publications Need out-of-hours support? We provide expert, up-to-date You can find a lot of information about different information on our website, types of cancer, tests and macmillan.org.uk treatments, and information For medical attention out of about living with and after hours, please contact your GP cancer. We can send you free for their out-of-hours service. information in a variety of formats, including booklets, Someone to talk to leaflets, fact sheets, and audio CDs. We can also When you or someone you provide our information in know has cancer, it can be Braille and large print. difficult to talk about how you’re feeling. You can call You can find all of our our cancer support specialists information, along with several to talk about how you feel and videos, online at macmillan. what’s worrying you. org.uk/cancerinformation We can also help you find Review our information support in your local area, Help us make our resources so you can speak face-to-face even better for people affected with people who understand by cancer. Being one of our what you’re going through. reviewers gives you the chance to comment on a variety of information including booklets, fact sheets, leaflets, videos, illustrations and website text.
If you’d like to hear more about becoming a reviewer, email reviewing@ macmillan.org.uk
46 How we can help you
Professional help Support for each other
Our Macmillan nurses, doctors No one knows more about and other health and social the impact cancer has on care professionals offer expert a person’s life than those treatment and care. They help who have been affected by individuals and families deal it themselves. That’s why we with cancer from diagnosis help to bring people with onwards, until they no longer cancer and carers together in need this help. their communities and online.
You can ask your GP, hospital Support groups consultant, district nurse You can find out about support or hospital ward sister if groups in your area by calling there are any Macmillan us or by visiting macmillan. professionals available org.uk/selfhelpandsupport in your area, or call us. Online community You can also share your experiences, ask questions, get and give support to others in our online community at macmillan. org.uk/community
47 Understanding cervical screening
Financial and Find out more about the work-related support financial and work-related support we can offer Having cancer can bring extra at macmillan.org.uk/ costs such as hospital parking, financialsupport travel fares and higher heating bills. Some people may have Learning about cancer to stop working. You may find it useful to learn If you’ve been affected in more about cancer and how this way, we can help. Call to manage the impact it can the Macmillan Support have on your life. Line and one of our cancer support specialists will tell you You can do this online on our about the benefits and other Learn Zone – macmillan.org. financial help you may be uk/learnzone – which offers entitled to. a variety of e-learning courses and workshops. There’s We can also give you also a section dedicated to information about your rights supporting people with cancer at work as an employee, and – ideal for people who want help you find further support. to learn more about what their relative or friend is Macmillan Grants going through. Money worries are the last thing you need when you have cancer. A Macmillan Grant is a one-off payment for people with cancer, to cover a variety of practical needs including heating bills, extra clothing, or a much needed break.
48 Other useful organisations
Other useful organisations
Jo’s Cervical Cancer Trust Cervical Screening Wales 16 Lincoln’s Inn Fields, 18 Cathedral Road, London WC2A 3ED Cardiff CF11 9LJ Tel 020 7936 7498 www.screeningservices. Helpline 0808 802 8000 org.uk/csw Email [email protected] Coordinates the NHS www.jostrust.org.uk Cervical Screening The only UK charity dedicated Programme in Wales. to women and their families The website provides affected by cervical cancer information on cervical and cervical abnormalities. screening, abnormal test Offers information, support results and HPV infection. and friendship to women of all ages. Scottish Cervical Screening Programme NHS Cervical (NHS National Services Screening Programme Scotland) Fulwood House, Old Fulwood Gyle Square, Road, Sheffield S10 3TH 1 South Gyle Crescent, Tel 0114 271 1060 Edinburgh EH12 9EB Email Tel 0131 275 6575 [email protected] Email www.cancerscreening.nhs. [email protected] uk/cervical www.nsd.scot.nhs.uk/ Coordinates the NHS Cervical services/screening/ Screening Programme in cervicalscreening/ England. The website provides Coordinates the NHS information on screening, Cervical Screening and leaflets are available Programme in Scotland. to download.
49 Understanding cervical screening
Northern Ireland Screening Cancer Support Scotland Programme Shelley Court, Gartnavel Cytology Screening Office, Complex, Glasgow G12 0YN 2 Franklin Street, Tel 0141 211 0122 Belfast BT2 8DQ Email info@ Email cancersupportscotland.org [email protected] www. www.cancerscreening. cancersupportscotland.org hscni.net/cervical/toc.html Offers information Gives information on cervical and support to people screening in Northern Ireland. affected by cancer. Also runs support groups, and General cancer and provides counselling and support organisations complementary therapies.
Cancer Black Care Irish Cancer Society 79 Acton Lane, 43–45 Northumberland Road, London NW10 8UT Dublin 4, Ireland Tel 020 8961 4151 Tel 1800 200 700 Email (Mon–Thurs, 9am–7pm, [email protected] Fri, 9am–5pm) www.cancerblackcare. Email [email protected] org.uk www.cancer.ie Offers information and Has a freephone cancer support for people with helpline staffed by nurses cancer from ethnic trained in cancer care. communities, their friends, You can also chat to a nurse carers and families. online and use the site’s message board.
50 Other useful organisations
Maggie’s Centres www.ulstercancer.org 1st Floor, One Waterloo Street, Provides a variety of services Glasgow G2 6AY for people with cancer and Tel 0300 123 1801 their families, including a free Email enquiries@ telephone helpline, which is maggiescentres.org staffed by specially trained www.maggiescentres.org nurses with experience in Maggie’s Centres provide cancer care. information about cancer, benefits advice, and emotional Stopping smoking or psychological support. NHS Smoking Helpline Tenovus Helpline 0800 022 4 332 Head Office, (Daily, 7am–11pm) Gleider House, Ty Glas Road, www.smokefree.nhs.uk Cardiff CF14 5BD Offers free information, Tel 0808 808 1010 advice and support to people www.tenovus.org.uk who are giving up smoking, Provides a range of services and those who have given up to people with cancer and don’t want to start again. and their families, including counselling Quit and a freephone helpline. 4th Floor, 211 Old Street, London EC1V 9NR The Ulster Quitline 0800 00 22 00 Cancer Foundation (Daily, 9am–9pm) 40–44 Eglantine Avenue, www.quit.org.uk and Belfast BT9 6DX www.quitbecause.org.uk Freephone helpline Offers practical help and 0800 783 3339 advice to people who want Helpline email to stop smoking. [email protected] Tel 028 9066 3281 Email [email protected]
51 Understanding cervical screening
Further Useful websites resources A lot of information about cancer is available on the internet. Some websites Related Macmillan are excellent; others have information misleading or out-of-date information. The sites listed You may want to order some here are considered by nurses of the resources mentioned in and doctors to contain this booklet. These include: accurate information and • Giving up smoking are regularly updated.
• Understanding cervical Macmillan Cancer Support cancer www.macmillan.org.uk Find out more about living To order, visit be.macmillan. with the practical, emotional org.uk or call 0808 808 00 and financial effects of 00. All of our information cancer. Our website contains is also available online expert, accurate, up-to-date at macmillan.org.uk/ information about cancer and cancerinformation its treatments, including: • all the information from To order the fact sheets our 100+ booklets and mentioned in this booklet, 350+ fact sheets call 0808 808 00 00. • videos featuring real-life stories from people affected by cancer and information from medical professionals
52 Further resources
• how Macmillan can help, www.cancerhelp.org.uk the services we offer and (Cancer Research UK) where to get support Contains patient information on all types of cancer and • how to contact our cancer has a clinical trials database. support specialists, including an email form www.healthtalkonline.org to send your questions www.youthhealthtalk.org • local support groups (site for young people) search, links to other Both websites contain cancer organisations information about some and a directory of cancers and have video and information materials audio clips of people talking about their experiences of • a huge online community cancer and its treatments. of people affected by cancer sharing their www.intelihealth.com experiences, advice Content includes health and support. news, disease and condition information, tools and risk www.cancer.gov assessments. Easy-to-use and (National Cancer free from medical jargon. Institute – National Institute of Health – USA) www.macmillan.org.uk/ Gives comprehensive cancervoices information on cancer (Macmillan Cancer Voices) and treatments. A UK-wide network that enables people who have or www.cancer.org have had cancer, and those (American Cancer Society) close to them such as family Nationwide community-based and carers, to speak out about health organisation dedicated their experience of cancer. to eliminating cancer. It aims to do this through research, education and advocacy. 53 Understanding cervical screening
www.nhs.uk www.patient.co.uk (NHS Choices) (Patient UK) NHS Choices is the online Provides people in the UK ‘front door’ to the NHS. It is with good-quality information the country’s biggest health about health and disease. website and gives all the Includes evidence-based information you need to make information leaflets on a wide decisions about your health. variety of medical and health topics. Also reviews and links www.nhsdirect.nhs.uk to many health and illness- (NHS Direct Online) related websites. NHS health information site for England – covers www.riprap.org.uk all aspects of health, (Riprap) illness and treatments. Developed especially for teenagers who have www.nhs24.com a parent with cancer. (NHS 24 in Scotland)
www.nhsdirect.wales. nhs.uk (NHS Direct Wales) www.n-i.nhs.uk (Health and Social Care in Northern Ireland)
54 Your notes and questions
Your notes and questions
You could use these pages to write down any questions you want to ask your doctor or nurse, and then to write down the answers you receive.
55 Understanding cervical screening
56 Disclaimer, thanks and sources
Disclaimer
We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it.
Some photographs are of models. The quotes in this booklet have been sourced from healthtalkonline.org
Thanks
This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information and Development team. It has been approved by our medical editor, Dr Terry Priestman, Consultant Clinical Oncologist.
With thanks to: Ms TJ Day, NHS Cancer Screening Programme; Professor David Luesley, Professor of Gynaecological Oncology; Mr Russell Luker, Consultant Gynaecologist; Ms Catherine Muggeridge, Colposcopy Clinical Nurse Specialist; Ms Marianne Wood, Colposcopy Clinical Nurse Specialist; and the people affected by cancer who reviewed this edition.
Sources
Cancer Research UK. Cervical screening – UK Statistics. www.cancerresearchuk. org/cancer-info/cancerstats/types/cervix/screening/cervical-screening-in-the-uk (accessed May 2012). Cervical screening Wales. www.screeningservices.org.uk/csw/pub/index.asp (accessed May 2012). National Institute for Health and Clinical Excellence (NICE). Guidance on the use of liquid-based cytology for cervical screening. October 2003. NHS Cancer Screening Programme England. www.cancerscreening.org.uk/ cervical/index.html (accessed May 2012).
57 Understanding cervical screening
NHS Cervical Screening Programme. HPV testing: Information for women. www.cancerscreening.nhs.uk/cervical/english-fact-sheet-hpv-testing-201108.pdf (accessed August 2011). NHS Health Scotland. Cervical Screening. www.healthscotland.com/topics/health- topics/screening/cervical.aspx (accessed May 2012). Northern Ireland Cancer Screening Programmes. www.cancerscreening.hscni.net/ index.html (accessed May 2012). Scottish Intercollegiate Guidelines Network (SIGN). Management of cervical cancer: A national clinical guideline. January 2008.
58 Can you do something to help? We hope this booklet has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way. We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.
5 ways you can someone with hElP cAncer
Share your cancer experience Support people living with cancer by telling your story, online, in the media or face to face. Campaign for change We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care. Help someone in your community A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand? Raise money Whatever you like doing you can raise money to help. Take part in one of our events or create your own. Give money Big or small, every penny helps. To make a one-off donation see over. Call us to find out more 0300 1000 200 macmillan.org.uk/getinvolved Please fill in your Don’t let the taxman personal details keep your money Mr/Mrs/Miss/Other Do you pay tax? If so, your gift will be worth 25% more to us – at no Name extra cost to you. All you have to Surname do is tick the box below, and the Address tax office will give 25p for every pound you give.
Postcode I am a UK taxpayer and I Phone would like Macmillan Cancer Support to treat all donations Email I have made for the four years Please accept my gift of £ prior to this year, and all donations I make in the future, (Please delete as appropriate) as Gift Aid donations, until I I enclose a cheque / postal order / notify you otherwise. Charity Voucher made payable to Macmillan Cancer Support I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax in each OR debit my: tax year, that is at least equal to the tax that Visa / MasterCard / CAF Charity Charities & CASCs I donate to will reclaim on Card / Switch / Maestro my gifts. I understand that other taxes such as VAT and Council Tax do not qualify and that Macmillan Cancer Support will reclaim 25p of Card number tax on every £1 that I give. Macmillan Cancer Support and our trading companies would like to hold your details in Valid from Expiry date order to contact you about our fundraising, campaigning and services for people affected by cancer. If you would prefer us not to use your details in this way please tick this box. Issue no Security number In order to carry out our work we may need to pass your details to agents or partners who act on our behalf. Signature Date / /
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Please cut out this form and return it in an envelope (no stamp required) to: Supporter Donations, Macmillan Cancer Support, FREEPOST LON15851, 89 Albert Embankment, London SE1 7UQ #
27530 Cancer is the toughest fight most of us will ever face. If you or a loved one has been diagnosed, you need a team of people in your corner, supporting you every step of the way. That’s who we are.
We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you’re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community supporting you online, any time. The fundraisers who make it all possible.
You don’t have to face cancer alone. We can give you the strength to get through it. We are Macmillan Cancer Support.
Questions about living with cancer? Call free on 0808 808 00 00 (Mon–Fri, 9am–8pm) Alternatively, visit macmillan.org.uk
Hard of hearing? Use textphone 0808 808 0121, or Text Relay. Non-English speaker? Interpreters available.
© Macmillan Cancer Support, 2012. 9th edition. MAC11618. Next planned review 2014. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604).
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