Neuroendocrine tumours and carcinoid syndrome

Neuroendocrine tumours (NETs) are rare tumours of the neuroendocrine system, the system in the body that produces hormones. They can be cancerous or non-cancerous.

The tumour usually grows in the bowels or appendix, but it can also be found in the stomach, pancreas, lung, breast, kidney, ovaries or testicles. It tends to grow very slowly.

Neuroendocrine tumours are sometimes referred to as carcinoid tumours, particularly when they affect the small bowel, large bowel or appendix.

Carcinoid syndrome is the collection of symptoms some people get when a neuroendocrine tumour, usually one that has spread to the liver, releases hormones such as serotonin into the bloodstream.

About 2,900 people are diagnosed with a neuroendocrine tumour each year in the UK, but not everyone with a tumour will have carcinoid syndrome.

Signs and symptoms

In the early stages of having a neuroendocrine tumour, you may not have any symptoms.

You may also not have symptoms if the tumour is just in your digestive system, as any hormones it produces will be broken down by your liver.

If symptoms do develop, they tend to be fairly general and can be easily mistaken for signs of other illnesses.

Symptoms may result from both the tumour itself and from any hormones it releases into the bloodstream.

Symptoms caused by the tumour

Symptoms will depend on where in the body the tumour develops:

  • a tumour in the bowel may cause tummy pain, a blocked bowel (diarrhoea, constipation, feeling sick or being sick) and bleeding from the bottom (rectal bleeding)
  • a tumour in the lung may cause a cough, which may make you cough up blood, and cause wheezing, shortness of breath, chest pain and tiredness
  • a tumour in the stomach may cause pain, weight loss, tiredness and weakness

Some tumours may not cause any symptoms and are discovered by chance.

For example, a tumour in the appendix may only be found when the appendix is being removed for another reason.

Symptoms caused by the hormones (carcinoid syndrome)

Typical symptoms of carcinoid syndrome include:

  • diarrhoea, tummy pain and loss of appetite
  • flushing of the skin, particularly the face
  • fast heart rate
  • breathlessness and wheezing

These symptoms may come on unexpectedly, as the hormones can be produced by the tumour at any time.

Some people may also develop carcinoid heart disease, where the heart valves thicken and stop working properly.

There’s also a risk of developing a rare but serious reaction called a carcinoid crisis, which involves severe flushing, breathlessness and a drop in blood pressure.

What causes neuroendocrine tumours?

It’s not known exactly why neuroendocrine tumours develop, but it’s thought that most occur by chance.

Your chances of developing a neuroendocrine tumour may be increased if you have:

  • a rare family syndrome called multiple endocrine neoplasia type 1 (MEN1)
  • parents or siblings (brothers or sisters) with a carcinoid tumour
  • parents with non-Hodgkin lymphoma or cancer of the brain, breast, liver, bladder or endocrine system
  • conditions called neurofibromatosis or tuberous sclerosis

You can read more about the risks and causes of neuroendocrine tumours on the Cancer Research UK website.

Diagnosing neuroendocrine tumours

A neuroendocrine tumour may be found incidentally – for example, as a surgeon is removing an appendix.

In this case, the tumour will often be caught early and removed along with the appendix, causing no further problems.

Otherwise, people usually see their GP after they have developed symptoms.

A neuroendocrine tumour may be diagnosed after carrying out a series of scans and tests, which may include measuring the amount of serotonin in your urine and having an endoscopy.

Treating neuroendocrine tumours and carcinoid syndrome

If the tumour is caught early, it may be possible to completely remove it and cure the cancer altogether.

Otherwise, surgeons will remove as much of the tumour as possible (debulking).

You can read more about the surgery for neuroendocrine tumours on the Cancer Research UK website.

If the tumour can’t be removed, but it’s not growing or causing symptoms, you may not need treatment straight away – it might just be carefully monitored. 

If it’s causing symptoms, you may be offered one of the following treatments:

  • injections of medicines called somatostatin analogues, such as octreotide and lanreotide, which can slow down the growth of the tumour
  • radiotherapy to kill some of the cancer cells 
  • a procedure to block the blood supply to the tumour (for tumours in the liver), known as hepatic artery embolisation
  • a procedure that uses a heated probe to kill cancer cells (for tumours in the liver), called radiofrequency ablation
  • chemotherapy to shrink the tumour and control your symptoms

Symptoms of carcinoid syndrome can be treated with injections of octreotide and lanreotide. 

You may also be given medication to widen your airways (to relieve wheezing and breathlessness) and anti-diarrhoea medication.

What can I do to help myself?

There are things you can do yourself to manage some of the symptoms of carcinoid syndrome.

Generally, you should avoid triggers of flushing, such as:

  • alcohol
  • large meals
  • spicy foods
  • foods containing the substance tyramine, such as aged cheese and salted or pickled meats
  • stress

Some medications, such as selective serotonin reuptake inhibitor (SSRI) antidepressants, may make symptoms worse by further increasing your levels of serotonin.

But never stop taking medication without seeking medical advice.

If you have diarrhoea, it’s important to keep drinking little and often to avoid dehydration.

Outlook

If the whole tumour can be removed, this may cure the cancer and symptoms altogether.

But even if surgeons can’t remove the entire tumour, it usually grows slowly and can be controlled with medication.

Overall, people with neuroendocrine tumours have a good life expectancy compared with many other cancers. Many people remain relatively well and lead active lives, with only occasional symptoms.

But as the tumour grows or spreads, it will produce more and more hormones, and it may eventually be difficult to completely control symptoms with medication. You may need further surgery or other treatments.

Unfortunately, life expectancy isn’t as good for a cancerous tumour that’s spread to other parts of your body because it won’t usually be possible to remove all of it. But treatment can still control your symptoms and slow down the spread of cancer.

Bone cancer

Primary bone cancer is a rare type of cancer that begins in the bones. Around 550 new cases are diagnosed each year in the UK.

Signs and symptoms of bone cancer

Bone cancer can affect any bone, but most cases develop in the long bones of the legs or upper arms.

The main symptoms include:

  • persistent bone pain that gets worse over time and continues into the night
  • swelling and redness (inflammation) over a bone, which can make movement difficult if the affected bone is near a joint
  • a noticeable lump over a bone
  • a weak bone that breaks (fractures) more easily than normal

If you or your child are experiencing persistent, severe or worsening bone pain, visit your GP. While it’s highly unlikely to be the result of bone cancer, it does require further investigation.

Types of bone cancer

Some of the main types of bone cancer are:

  • osteosarcoma – the most common type, which mostly affects children and young adults under 20
  • Ewing sarcoma – which most commonly affects people aged between 10 and 20
  • chondrosarcoma – which tends to affect adults aged over 40

Young people can be affected because the rapid growth spurts that occur during puberty may make bone tumours develop.

The above types of bone cancer affect different types of cell. The treatment and outlook will depend on the type of bone cancer you have.

What causes bone cancer?

In most cases, it’s not known why a person develops bone cancer.

You’re more at risk of developing it if you:

  • have had previous exposure to radiation during radiotherapy
  • have a condition known as Paget’s disease of the bone – however, only a very small number of people with Paget’s disease will actually develop bone cancer
  • have a rare genetic condition called Li-Fraumeni syndrome – people with this condition have a faulty version of a gene that normally helps stop the growth of cancerous cells

How bone cancer is treated

Treatment for bone cancer depends on the type of bone cancer you have and how far it has spread.

Most people have a combination of:

  • surgery to remove the section of cancerous bone – it’s often possible to reconstruct or replace the bone that’s been removed, but amputation is sometimes necessary
  • chemotherapy – treatment with powerful cancer-killing medication
  • radiotherapy – where radiation is used to destroy cancerous cells

In some cases of osteosarcoma, a medication called mifamurtide may also be recommended.

Read more about treating bone cancer.

Outlook

The outlook for bone cancer depends on factors such as your age, the type of bone cancer you have, how far the cancer has spread (the stage), and how likely it is to spread further (the grade).

Generally, bone cancer is much easier to cure in otherwise healthy people whose cancer hasn’t spread.

Overall, around 6 in every 10 people with bone cancer will live for at least 5 years from the time of their diagnosis, and many of these may be cured completely.

Bone pain is the most common symptom of bone cancer. Some people experience other symptoms as well.

Bone pain

Pain caused by bone cancer usually begins with a feeling of tenderness in the affected bone. This gradually progresses to a persistent ache or an ache that comes and goes, which continues at night and when resting.

Any bone can be affected, although bone cancer most often develops in the long bones of the legs or upper arms.

The pain can sometimes be wrongly mistaken for arthritis in adults and growing pains in children and teenagers.

Other symptoms

Some people also experience swelling and redness (inflammation) or notice a lump on or around the affected bone. If the bone is near a joint, the swelling may make it difficult to use the joint.

In some cases, the cancer can weaken a bone, causing it to break (fracture) easily after a minor injury or fall.

Less common symptoms can include:

  • a high temperature (fever) of 38C (100.4F) or above
  • unexplained weight loss
  • sweating, particularly at night

When to seek medical advice

See your GP if you or your child experiences persistent, severe or worsening bone pain, or if you’re worried about any of the symptoms mentioned above.

While it’s highly unlikely that your symptoms are caused by cancer, it’s best to be sure by getting a proper diagnosis.

Cervical cancer

Cervical cancer develops in a woman’s cervix (the entrance to the womb from the vagina). It mainly affects sexually active women aged between 30 and 45.

Symptoms of cervical cancer

Cancer of the cervix often has no symptoms in its early stages.

If you do have symptoms, the most common is abnormal vaginal bleeding, which can occur during or after sex, in between periods, or new bleeding after you have been through the menopause.

Abnormal bleeding does not mean you have cervical cancer, but you should see a GP as soon as possible to get it checked out.

If a GP thinks you might have cervical cancer, you should be referred to see a specialist within 2 weeks.

Screening for cervical cancer

The best way to protect yourself from cervical cancer is by attending cervical screening (previously known as a “smear test”) when invited.

The NHS Cervical Screening Programme invites all women from the age of 25 to 64 to attend cervical screening.

Women aged 25 to 49 are offered screening every 3 years, and those aged 50 to 64 are offered screening every 5 years.

During cervical screening, a small sample of cells is taken from the cervix and checked under a microscope for abnormalities.

In some areas, the screening sample is first checked for human papillomavirus (HPV), the virus that can cause abnormal cells.

An abnormal cervical screening test result does not mean you definitely have cancer.

Most abnormal results are due to signs of HPV, the presence of treatable precancerous cells, or both, rather than cancer itself.

You should be sent a letter confirming when it’s time for your screening appointment. Contact a GP if you think you may be overdue.

What causes cervical cancer?

Almost all cases of cervical cancer are caused by HPV. HPV is a very common virus that can be passed on through any type of sexual contact with a man or a woman.

There are more than 100 types of HPV, many of which are harmless. But some types can cause abnormal changes to the cells of the cervix, which can eventually lead to cervical cancer.

Two strains, HPV 16 and HPV 18, are known to be responsible for most cases of cervical cancer.

They do not have any symptoms, so women will not realise they have it.

But these infections are very common and most women who have them do not develop cervical cancer.

Using condoms during sex offers some protection against HPV, but it cannot always prevent infection because the virus is also spread through skin-to-skin contact of the wider genital area.

The HPV vaccine has been routinely offered to girls aged 12 and 13 since 2008.

Treating cervical cancer

If cervical cancer is diagnosed at an early stage, it’s usually possible to treat it using surgery.

In some cases, it’s possible to leave the womb in place, but it may need to be removed.

The surgical procedure used to remove the womb is called a hysterectomy.

Radiotherapy is another option for some women with early-stage cervical cancer.

In some cases, it’s used alongside surgery or chemotherapy, or both.

More advanced cases of cervical cancer are usually treated using a combination of chemotherapy and radiotherapy.

Some of the treatments can have significant and long-lasting side effects, including early menopause and infertility.

Complications

Some women with cervical cancer may develop complications.

These can arise as a direct result of the cancer or as a side effect of treatments like radiotherapy, chemotherapy and surgery.

Complications associated with cervical cancer can range from the relatively minor, like some bleeding from the vagina or having to pee frequently, to life threatening, such as severe bleeding or kidney failure.

The symptoms of cervical cancer are not always obvious, and it may not cause any at all until it’s reached an advanced stage.

This is why it’s very important to you attend all your cervical screening appointments.

Unusual bleeding

In most cases, abnormal vaginal bleeding is the first noticeable symptom of cervical cancer.

This includes bleeding:

  • during or after sex
  • between your periods
  • after you have been through the menopause

Visit your GP for advice if you experience any type of abnormal vaginal bleeding.

Other symptoms

Other symptoms of cervical cancer may include pain and discomfort during sex, unusual or unpleasant vaginal discharge, and pain in your lower back or pelvis.

Advanced cervical cancer

If the cancer spreads out of your cervix and into surrounding tissue and organs, it can trigger a range of other symptoms, including:

  • pain in your lower back or pelvis
  • severe pain in your side or back caused by your kidneys
  • constipation
  • peeing or pooing more often than normal
  • losing control of your bladder (urinary incontinence) or losing control of your bowels (bowel incontinence)
  • blood in your pee
  • swelling of one or both legs
  • severe vaginal bleeding

When to seek medical advice

You should contact your GP if you experience:

  • bleeding after sex (postcoital bleeding)
  • bleeding outside of your normal periods
  • new bleeding after the menopause

Vaginal bleeding is very common and can have a wide range of causes, so it does not necessarily mean you have cervical cancer. However, unusual vaginal bleeding needs to be investigated by your GP.

Almost all cases of cervical cancer are caused by the human papillomavirus (HPV).

Human papillomavirus (HPV)

Almost all cervical cancer cases occur in women who have been previously infected with HPV.

HPV is a group of viruses, rather than a single virus. There are more than 100 different types.

HPV is spread during sexual intercourse and other types of sexual activity, such as skin-to-skin contact of the genital areas or using sex toys, and is very common.

Most women will get some type of HPV infection at some point in their lives.

Some types of HPV do not cause any noticeable symptoms and the infection will pass without treatment.

Others can cause genital warts, although these types are not linked to an increased risk of cervical cancer.

But at least 15 types of HPV are considered high-risk for cervical cancer. The 2 highest risk are HPV 16 and HPV 18, which cause the majority of cervical cancers.

High-risk types of HPV are thought to stop the cells working normally, which can eventually cause them to reproduce uncontrollably, leading to the growth of a cancerous tumour.

As most types of HPV do not cause any symptoms, you or your partner could have the virus for months or years without knowing it.

See preventing cervical cancer for more information about reducing your chances of developing an HPV infection.

Pre-cancerous cervical abnormalities

Cancer of the cervix usually takes many years to develop. Before it does, the cells in the cervix often show changes.

These cervical abnormalities are known as cervical intraepithelial neoplasia (CIN) or, less commonly, cervical glandular intraepithelial neoplasia (CGIN) depending on which cells are affected.

CIN and CGIN are pre-cancerous conditions. Pre-cancerous conditions do not pose an immediate threat to a person’s health. But if they’re not checked and treated, they can potentially develop into cancer.

However, even if you develop CIN or CGIN, the chances of them turning into cervical cancer are very small.

And if the changes are discovered during cervical screening, treatment is highly successful.

The progression from HPV infection to developing CIN or CGIN and then cervical cancer is very slow, often taking 10 to 20 years.

Increased risk

HPV infection being very common but cervical cancer relatively uncommon suggests that only a very small proportion of women are vulnerable to the effects of an HPV infection.

There appear to be additional risk factors that affect a woman’s chance of developing cervical cancer.

These include:

  • smoking – women who smoke are twice as likely to develop cervical cancer than those who do not smoke; this may be because of the harmful effects of chemicals found in tobacco on the cells of the cervix
  • having a weakened immune system
  • taking the oral contraceptive pill for more than 5 years – this risk is not well understood
  • having more than 5 children, or having them at an early age (under 17 years old)
  • your mother taking the hormonal drug diethylstilbestrol (DES) while pregnant with you – your GP can discuss these risks with you

The reason for the link between cervical cancer and childbirth is unclear.

One theory is that the hormonal changes that occur during pregnancy may make the cervix more vulnerable to the effects of HPV.

If cervical cancer is suspected, you will be referred to a specialist in treating conditions of the female reproductive system (a gynaecologist).

Colposcopy

If you’ve had an abnormal cervical screening test result, or any symptoms of cervical cancer, you will usually be referred for a colposcopy. This is an examination to look for abnormalities in your cervix. It’s norm6ally done by a nurse called a colposcopist.

If you have had abnormal bleeding, your GP may first recommend a chlamydia test before being referred for a colposcopy.

The colposcopist will use a device called a speculum to open your vagina, just like they do during cervical screening. A small microscope with a light at the end (a colposcope) will be used to look at your cervix. This microscope stays outside your body.

As well as examining your cervix, they may remove a small tissue sample (biopsy) so it can be checked for cancerous cells. After a biopsy, you may have some vaginal bleeding for up to 6 weeks. You may also have period-like pains.

In most cases, the abnormalities do not mean you have cervical cancer, but you may be referred to a gynaecologist for further tests.

Treatment to remove abnormal cells can sometimes be done at the same time as a colposcopy.

Further testing

If the results of the colposcopy or biopsy suggest you have cervical cancer and there’s a risk it may have spread, you’ll probably need to have some further tests to assess how widespread the cancer is. These tests may include:

  • a pelvic examination done under general anaesthetic (while you’re asleep) – your womb, vagina, rectum and bladder will be checked for cancer
  • blood tests – to help assess the state of your liver, kidneys and bone marrow
  • a CT scan – used to help identify cancerous tumours and show whether cancerous cells have spread
  • an MRI scan – also used to check whether the cancer has spread
  • a chest X-ray – to check if the cancer has spread to the lungs
  • a PET scan – often combined with a CT scan to see if the cancer has spread, or to check how well a person is responding to treatment

Staging 

Staging is a measurement of how far the cancer has spread.

After all the tests have been completed and the results are known, it should be possible to tell what stage the cancer is. The higher the stage, the further the cancer has spread.

The staging for cervical cancer is:

  • stage 0 – no cancerous cells in the cervix, but there are abnormal cells that could develop into cancer in the future – this is called pre-cancer or carcinoma in situ
  • stage 1 – the cancer is only inside the cervix
  • stage 2 – the cancer has spread outside the cervix into the surrounding tissue but hasn’t reached the tissues lining the pelvis (pelvic wall) or the lower part of the vagina
  • stage 3 – the cancer has spread into the lower section of the vagina or pelvic wall
  • stage 4 – the cancer has spread into the bowel, bladder or other organs, such as the lungs

Treatment for cervical cancer depends on how far the cancer has spread.

As cancer treatments are often complex, hospitals use multidisciplinary teams (MDTs) to treat cervical cancer and tailor the treatment programme to the individual.

MDTs are made up of a number of different specialists who work together to make decisions about the best way to proceed with your treatment.

Your cancer team will recommend what they think the best treatment options are, but the final decision will be yours. In most cases, the recommendations will be:

  • for early cervical cancer – surgery to remove the cervix and some or all of the womb, or radiotherapy, or a combination of both
  • for advanced cervical cancer – radiotherapy with or without chemotherapy, and surgery is also sometimes used

Cervical cancer is often curable if it’s diagnosed at an early stage.

When cervical cancer is not curable, it’s often possible to slow its progression, prolong lifespan and relieve any associated symptoms, such as pain and vaginal bleeding. This is known as palliative care.

The different treatment options are discussed in more detail in the following sections.

Removing very early cancer

Large loop excision of the transformation zone (LLETZ)

This is where the cancerous cells are removed using a fine wire and an electrical current.

It’s usually done under local anaesthetic (while you’re awake but the area is numbed) and can be done at the same time as a colposcopy.

Cone biopsy

A cone-shaped area of abnormal tissue is removed during surgery. This is usually done under general anaesthetic (while you’re asleep).

Surgery

There are 3 main types of surgery for cervical cancer:

  • trachelectomy – the cervix, surrounding tissue and upper part of the vagina are removed, but the womb is left in place
  • hysterectomy – the cervix and womb are removed and, depending on the stage of the cancer, it may be necessary to remove the ovaries and fallopian tubes
  • pelvic exenteration – a major operation in which the cervix, vagina, womb, ovaries, fallopian tubes, bladder and rectum may all be removed

Pelvic exenteration is only offered when cervical cancer has come back.

Trachelectomy

A trachelectomy is usually only suitable if cervical cancer is diagnosed at a very early stage. It’s usually offered to women who want to have children in the future.

During the procedure, the cervix and upper section of the vagina are removed, leaving the womb in place. Your womb will then be reattached to the lower section of your vagina.

It’s usually done by keyhole surgery.

Lymph nodes (part of the lymphatic system, the body’s waste-removal system) from your pelvis may also be removed.

Compared with a hysterectomy or pelvic exenteration, the advantage of this type of surgery is that your womb remains in place. This means you may still be able to have children.

However, it’s important to be aware that the surgeons carrying out this operation cannot guarantee you will still be able to have children.

A stitch will be put in the bottom of your womb during the surgery. This is to help support and keep a baby in your womb in future pregnancies. If you do get pregnant after the operation, your baby will have to be delivered by caesarean section.

It’s also usually recommended you wait 6 to 12 months after surgery before trying for a baby so your womb and vagina have time to heal.

Trachelectomy is a highly skilled procedure. It’s only available at certain specialist centres in the UK, so it may not be offered in your area and you may need to travel to another city for treatment.

What is bile duct cancer?

Bile duct cancer, also called cholangiocarcinoma, is a cancer that’s found anywhere in the bile ducts.The bile ducts are small tubes that connect different organs. They are part of the digestive system.How serious bile duct cancer is depends on where it is in the bile ducts, how big it is, if it has spread and your general health.

Main symptoms of bile duct cancer

Bile duct cancer may not have any symptoms, or they can be hard to spot.

Symptoms of bile duct cancer can include:

  • your skin or the whites of your eyes turn yellow (jaundice), you may also have itchy skin, darker pee and paler poo than usual
  • loss of appetite or losing weight without trying to
  • feeling generally unwell
  • feeling tired or having no energy
  • a high temperature, or you feel hot or shivery

Other symptoms can affect your tummy, such as:

  • feeling or being sick
  • pain in your tummy

Who is more likely to get bile duct cancer

Anyone can get bile duct cancer. It’s not always clear what causes it.

You might be more likely to get it if you:

  • are over the age of 65
  • have certain medical conditions, such as abnormal bile ducts, long term swelling in the bowel (ulcerative colitis) or bile ducts, a parasite in the liver (liver flukes), bile duct stones and liver cirrhosis

Information:

It’s important to get any symptoms of bile duct cancer checked by a GP.

Anyone can get bile duct cancer, even if you do not think you have a higher chance of getting it.

You will need more tests and scans to check for bile duct cancer if the GP refers you to a specialist.

These tests can include:

  • blood tests
  • scans, like an ultrasound scan (sometimes from inside your body using an endoscope), CT scan, or MRI scan
  • collecting a small sample of cells from the bile ducts (called a biopsy) to be checked for cancer
  • a test called an ERCP
  • a special kind of X-ray called PTC

You may not have all these tests.

These tests can also help find problems in other nearby organs. Such as your pancreas, gallbladder or liver.

Getting your results

It can take several weeks to get the results of your tests.

Try not to worry if your results are taking a long time to get to you. It does not definitely mean anything is wrong.

You can call the hospital or GP if you are worried. They should be able to update you.

A specialist will explain what the results mean and what will happen next. You may want to bring someone with you for support.

If you’re told you have bile duct cancer

Being told you have bile duct cancer can feel overwhelming. You may be feeling anxious about what will happen next.

It can help to bring someone with you to any appointments you have.

A group of specialists will look after you throughout your diagnosis, treatment and beyond.

Your team will include a clinical nurse specialist who will be your main point of contact during and after treatment.

You can ask them any questions you have.

If you’ve been told you have bile duct cancer, you may need more tests.

These, along with the tests you’ve had already, will help the specialists find out the size of the cancer and how far it’s spread (called the stage).

Find out more about what cancer stages and grades mean.

You may need:

  • a PET scan, sometimes with a CT scan (PET-CT)
  • a small operation to look inside your tummy, called a laparoscopy

The specialists will use the results of these tests and work with you to decide on the best treatment plan for you.

Treatment for bile duct cancer

Bile duct cancer is often treatable. But it can be difficult to treat.

The treatment you have will depend on:

  • the size and type of bile duct cancer you have
  • where it is
  • if it has spread
  • your general health

It may include surgery, chemotherapy and radiotherapy.

The specialist care team looking after you will:

  • explain the treatments, benefits and side effects
  • work with you to create a treatment plan that is best for you
  • help you manage any side effects, including changes to your diet to help with your digestion

You’ll have regular check-ups during and after any treatments. You may also have tests and scans.

If you have any symptoms or side effects that you are worried about, talk to your specialists. You do not need to wait for your next check-up.

Surgery

Your treatment will depend on if the cancer can be removed or not.

Surgery to remove bile duct cancer

If bile duct cancer is found early and it has not spread, you should be able to have surgery to remove it.

This will usually involve removing all or parts of the bile duct, as well as parts of other organs or lymph nodes around it. Lymph nodes are part of your body’s immune system.

Surgery to help control symptoms of bile duct cancer

If the cancer has spread too far and cannot be removed, you may have surgery to help control some symptoms of bile duct cancer.

This can include surgery to:

  • unblock the bile duct or stop it getting blocked, which helps with jaundice
  • unblock the first part of the small intestine or stop it getting blocked, which helps with feeling or being sick
  • bypass a blockage in the bile duct or small intestine, which helps with jaundice and feeling or being sick

The aim of these operations is to help improve your symptoms and help you live longer, not to cure the cancer.

Anal cancer

Anal cancer is a rare type of cancer that affects the anus.The anus is where your bowel connects to the outside of your body (the bottom).Anal cancer can start in any part of the anus.How serious anal cancer is depends on where it starts, how big it is, if it spreads and your general health.

Main symptoms of anal cancer

Symptoms of anal cancer can include:

  • bleeding from the bottom
  • itching and pain around the anus
  • small lumps around and inside the bottom
  • a discharge of mucus from the bottom
  • having problems controlling when you poo (bowel incontinence)
  • needing to poo often with looser, runnier poos

Anal cancer may have no symptoms at all, or they might be hard to spot.

Anal cancer symptoms are often similar to piles (haemorrhoids) and anal fissures, which are common and less serious conditions.

What happens at the GP appointment

The GP will ask you some questions about your health and your symptoms.

They may feel your tummy and insert a gloved finger into your bottom to feel for lumps or anything wrong.

After the GP examines you, they may refer you to see a specialist in hospital if they think more tests are needed.

You’ll receive an appointment, usually within 2 weeks, if you have certain symptoms. This does not definitely mean you have cancer.

Who is more likely to get anal cancer

Most anal cancers are caused by an infection called human papillomavirus (HPV).

You can get HPV from:

  • any skin-to-skin contact of the genital area
  • vaginal, anal or oral sex
  • sharing sex toys

Anal cancer is rare. Most people affected by HPV will not develop cancer.

You may be more likely to get anal cancer if you:

  • have anal sex
  • are over the age of 75
  • smoke
  • have had cervical or vaginal cancer
  • have a weakened immune system, such as from HIV or an organ transplant

How to reduce your risk of getting anal cancer

You cannot always prevent anal cancer. HPV vaccination is one of the best ways to protect against anal cancer.

All children aged 12 to 13 are offered the HPV vaccine. It helps protect against cancers caused by HPV, as well as genital warts.

There are also healthy changes you can make to lower your chances of getting anal cancer.

Main tests for anal cancer

You might have some tests and scans to check for anal cancer if a GP refers you to a specialist.

The tests you have will depend on your symptoms.

The tests may include:

  • putting a thin tube with a camera and light into your bottom to check for any changes
  • taking a small sample from your anus (biopsy) so it can be looked at in a laboratory under a microscope
  • blood tests

Getting your results

You should get the results of your tests within a few weeks

Try not to worry if your results are taking longer than you expected. You can call the hospital or GP if you’re worried. They should be able to update you.

A specialist will explain what the results mean and what will happen next. You may want to bring someone with you for support.

Acute myeloid leukaemia

Leukaemia is cancer of the white blood cells. Acute leukaemia means it progresses quickly and aggressively, and usually requires immediate treatment.

Acute leukaemia is classified according to the type of white blood cells affected.

The 2 main types of white blood cells are:

  • lymphocytes – which fight viral infections
  • myeloid cells – which do different things, such as fighting bacterial infections, defending the body against parasites and preventing the spread of tissue damage

This topic focuses on acute myeloid leukaemia (AML), which is an aggressive cancer of the myeloid cells.

Symptoms of AML

The symptoms of AML usually develop over a few weeks and become worse over time.

Symptoms can include:

  • looking pale or “washed out”
  • feeling tired or weak
  • breathlessness
  • frequent infections
  • unusual and frequent bruising or bleeding, such as bleeding gums or nosebleeds
  • losing weight without trying to

Seeking medical advice

Speak to a GP if you or your child have possible symptoms of AML.

Although it’s highly unlikely that leukaemia is the cause, these symptoms should be investigated.

If your GP thinks you may have leukaemia, they’ll arrange blood tests to check your blood cell production.

If the tests suggest there’s a problem, you’ll be urgently referred to a specialist in treating blood conditions (haematologist) for further tests and treatment.

Find out more about diagnosing AML

What causes AML?

It’s not clear exactly what causes AML and, in most cases, there’s no identifiable cause.

But some things can increase your risk of getting AML, including:

  • previous chemotherapy or radiotherapy
  • exposure to very high levels of radiation (including previous radiotherapy treatment)
  • smoking and other exposure to benzene, a chemical used in manufacturing that’s also found in cigarette smoke
  • having a blood disorder or some genetic conditions, such as Down’s syndrome

Find out more about the causes of AML

Who’s affected

AML is a rare type of cancer, with around 3,100 people diagnosed with it each year in the UK.

The risk of developing AML increases with age. It’s most common in people over 75.

How AML is treated

Treatment for AML needs to begin as soon as possible, as it can develop quickly.

Chemotherapy is the main treatment for AML. It’s used to kill as many leukaemia cells in your body as possible and reduce the risk of the condition coming back (relapsing).

In some cases, intensive chemotherapy and radiotherapy may be needed, in combination with a bone marrow or stem cell transplant.

Acute lymphoblastic leukaemia

Acute lymphoblastic leukaemia is a type of cancer that affects white blood cells. It progresses quickly and aggressively and requires immediate treatment. Both adults and children can be affected.

Acute lymphoblastic leukaemia is rare, with around 790 people diagnosed with the condition each year in the UK. Most cases of acute lymphoblastic leukaemia develop in children, teenagers and young adults.

Although it is rare, acute lymphoblastic leukaemia is the most common type of leukaemia that affects children. About 85% of the cases that affect children happen in those younger than 15 (mostly between the ages of 0 and 5). It affects slightly more boys than girls.

Acute lymphoblastic leukaemia is different to other types of leukaemia, including acute myeloid leukaemia, chronic lymphocytic leukaemia and chronic myeloid leukaemia.

What happens in acute lymphoblastic leukaemia

All the blood cells in the body are produced by bone marrow, which is a spongy material found inside bones.

Bone marrow produces stem cells, which have the ability to develop into three important types of blood cells:

  • red blood cells – which carry oxygen around the body
  • white blood cells – which help fight infection
  • platelets – which help stop bleeding

Bone marrow does not usually release stem cells into the blood until they have become fully developed blood cells. But in acute lymphoblastic leukaemia, large numbers of white blood cells are released before they are ready. These are known as blast cells.

As the number of blast cells increases, the number of red blood cells and platelet cells decreases. This causes the symptoms of anaemia, such as tiredness, breathlessness and an increased risk of excessive bleeding.

Also, blast cells are less effective than mature white blood cells at fighting bacteria and viruses, making you more vulnerable to infection.

Symptoms of acute lymphoblastic leukaemia

Acute lymphoblastic leukaemia usually starts slowly before rapidly becoming severe as the number of immature white blood cells (blast cells) in your blood increases.

Most of the symptoms are caused by a lack of healthy blood cells. Symptoms include:

  • pale skin
  • feeling tired and breathless
  • repeated infections over a short time
  • unusual and frequent bleeding, such as bleeding gums or nosebleeds
  • high temperature
  • night sweats
  • bone and joint pain
  • easily bruised skin
  • swollen lymph nodes (glands)
  • tummy (abdominal pain) – caused by a swollen liver or spleen
  • unintentional weight loss
  • a purple skin rash (purpura)

In some cases, the affected cells can spread from your bloodstream into your central nervous system. This can cause neurological symptoms (related to the brain and nervous system), including:

  • headaches
  • seizures or fits
  • being sick
  • blurred vision
  • dizziness

When to get medical advice

If you or your child has some or all the symptoms listed on this page, it’s still highly unlikely that acute leukaemia is the cause. However, see a GP as soon as possible because any condition that causes these symptoms needs prompt investigation and treatment.

Find out more about diagnosing acute lymphoblastic leukaemia.

What causes acute lymphoblastic leukaemia

A genetic change (mutation) in the stem cells causes immature white blood cells to be released into the bloodstream.

What causes the DNA mutation to happen is not yet understood, but known risk factors include:

  • previous chemotherapy – if you’ve had chemotherapy to treat another type of cancer in the past, your risk of developing acute lymphoblastic leukaemia is increased. The risk relates to certain types of chemotherapy medicine, such as etoposide, and how much treatment you had
  • smoking – smokers are much more likely to develop acute leukaemia than non-smokers, and studies have shown that parents who smoke in the home may increase the risk of leukaemia in their children
  • being very overweight (obese) – some studies have shown that people who are very overweight have a slightly higher risk of developing leukaemia than those who are a healthy weight
  • genetic disorders – a small number of cases of childhood acute lymphoblastic leukaemia are thought to be related to genetic disorders, including Down’s syndrome
  • having a weakened immune system – people with lowered immunity (as a result of having HIV or AIDS or taking immunosuppressants) have an increased risk of developing leukaemia

Environmental factors

Extensive research has been done to determine whether the following environmental factors could be a trigger for leukaemia:

  • living near a nuclear power station
  • living near a power line
  • living near a building or facility that releases electro-magnetic radiation, such as a mobile phone mast

There’s currently no firm evidence to suggest that any of these environmental factors increases the risk of developing leukaemia.

Cancer Research UK has more information about acute lymphoblastic leukaemia risks and causes.

Treating acute lymphoblastic leukaemia

As acute lymphoblastic leukaemia is an aggressive condition that develops quickly, treatment usually begins a few days after diagnosis.

Treatment is usually done in the following stages: 

  • remission induction – the first stage of treatment aims to kill the leukaemia cells in your bone marrow, restore the balance of cells in your blood and resolve any symptoms you may have
  • consolidation – this stage aims to kill any remaining leukaemia
  • maintenance – this stage involves taking regular doses of chemotherapy medicines to prevent leukaemia from returning

Chemotherapy is the main treatment for acute lymphoblastic leukaemia. Other treatments you may need include antibiotics and blood transfusions. Sometimes a stem cell transplant may also be needed to achieve a cure.

Find out more about treating acute lymphoblastic leukaemia.

Complications of acute lymphoblastic leukaemia

If a cure for acute lymphoblastic leukaemia is not possible, there’s a risk that the lack of healthy blood cells can make the person:

  • extremely vulnerable to life-threatening infections (because they do not have enough healthy white blood cells to fight infections)
  • prone to uncontrolled and serious bleeding (because there are not enough platelets in their blood)

These two complications, and others, are discussed further in complications of acute lymphoblastic leukaemia.

Outlook

One of the biggest factors that affects the outlook for people with acute lymphoblastic leukaemia is age. The younger a person is when they are diagnosed and treatment begins, the better the outlook.

From the available data in England it is estimated that:

  • in those aged 14 or younger, more than 9 in 10 will survive leukaemia for 5 years or longer after diagnosis
  • in those aged 15 to 24, almost 7 in 10 will survive leukaemia for 5 years or longer after diagnosis
  • in those aged 25 to 64, almost 4 in 10 will survive leukaemia for 5 years or longer after diagnosis
  • in those aged 65 or older, almost 15 in 100 will survive leukaemia for 5 years or longer after diagnosis

Jake’s Story

As part of our Testicular cancer awareness month campaign we have asked supporters to send us their stories.

This is Jake’s

In May 2019 after bathing my 6 year old son Jake, we noticed his left testicle was bigger than his right one. 

We visited our local GP the following day where they examined jake and were unable to tell us anything other then they needed to refer Jake urgently to the paediatric team at our local hospital. Worry set in immediately.

Within a week we were seen by a paediatrician at the children’s hospital where we were informed straight away jake had a tumour in his left testicle. 

After being whisked away for ultrasound scans and blood tests we were told Jake would need to come in for an operation the following week where they would attempt to remove the tumour but also would need to remove the testicle itself.

The following week jake underwent his surgery where they removed a 5cm tumour from his left testicle and the testicle itself was also removed. It was now an agonising wait for them to biopsy the tumour for diagnosis.

Within a matter of days we were called back to the hospital to see a paediatric oncologist and our worst nightmare was confirmed. The tumour was cancerous and Jake was diagnosed with paratesticular rhabdomyosarcoma. 

A 22 week course of chemotherapy was required.

The following week was one hell of a week, on the Tuesday Jake was sent for a CT scan, Wednesday a MRI scan, Thursday he was taken back to theatre to have his central lines fitted (these would be used to administer his chemotherapy) then Friday we finished the week with a PET scan! 

We received a call the Monday after stating the PET scan had shown and area of concern in Jakes tummy and he was therefore sent back to theatre where they sent a camera into his tummy in 3 separate areas to check out the suspicious area. 

Fortunately it turned out to be nothing and we were given the ok to go ahead with chemotherapy.

Chemotherapy started a week later. Every Tuesday every week for 4 weeks jake would go to have his chemo administered he would then get a 2 week break before starting the next cycle of chemotherapy. Jake completed 6 cycles in total. They were gruelling, they made him sick, more poorly than ever and of course the loss of his beautiful hair.

He fought like a warrior though and just before Christmas December 3rd 2019 jake was given his final dose of chemotherapy.

An end of treatment MRI scan took place in January 2020 which confirmed jake was clear of cancer and was now in remission.

A year on jake is recovering brilliantly and we couldn’t be more proud of him. 

It’s important to me to make other parents aware that testicular cancer isn’t just in older men. It happens in children too. So please be aware of the signs and what to look out for.

If your child is still young enough that you bath them then please check them over. If they are that bit older and now wash themselves please make they aware of what’s normal and what’s not and how to check themselves. It may be 5 minutes of embarrassment for them but it really can save lives. 

Kris’s Story

As part of our testicular cancer awareness month campaign, we have asked our survivors to share their stories.

This is Kris’s……

I first felt the lump in my right testicle December 2013. At this point it was very small but my wife made me go to the doctors to get it checked out. The doctors weren’t concerned and didn’t fast track me fir a scan as they thought it was a cyst. 

My scan appointment came through and it was four weeks away. During this time the lump grew quite significantly and to be honest I knew what it was going into the scan. 

Whilst I was getting a scan I was quizzing the doctor as to what he could see etc. He was very apprehensive to give me any information but I asked him straight up what are you going to put in the report. He was brilliant and talked me through the scan on the screen exactly what he could see. He told me there was a tumour. At this point I still wasn’t sure so I was scared but as I’m a positive person I was ready to tackle whatever it was. 

When I left the scan I called the spires in little Aston. I knew it well having had a few football operations there. I told them I needed to see an oncologist ASAP and luckily they got me in the next evening. At this point I was very nervous. If it’s cancer, has it spread? Am I going to see my children grow up, I had one and my wife was pregnant. 

I went to the hospital the next day and sat with the doctor and he said right let’s have a look. He took one look and about 3 seconds later he said those words. It’s cancer? Although I had that in my mind you are still shell shocked. My mind went into recovery process very quickly. When can you operate I asked the doc. Well as you arent a member  you will have to go back to nhs treatment which I knew would be a few weeks. I asked him again when he could do the surgery and I would foot the bill as I just wanted it gone. He said I have space next Thursday, great let’s do it. This was the Friday evening and surprisingly my next thought was football on the Saturday, we had a big game against Altrincham so I phoned the manager and told him and said I’m playing. Having playing at a decent level football was always my release and I think this was then same. Something else to think about. I then went to my moms and we all cried that evening but I knew with the support I had I was going to get through it. 

I didn’t sleep much that night worrying about the detail of what was to come. The operation wasn’t going to be an issue I had had a few but after that what happens. I was scared if it had spread or not. When I got to football all the lads knew and as they know me took the mick to some people this may seem harsh but this was what I needed. The lads were calling me the Russian , who do you nick a bollockov and saying right lads make sure you work your bollocks off today. I played the game and scored but walked off in tears. Emotionally I was drained and it just came down on me. After the game the news broke and I received so many messages from previous clubs I had played for it was great to have that support. 

Now it was scan time let’s see how I was looking. I had the ct scan which is weird in its self as the warm sensation makes you think you’ve had an accident. Then another ultrasound. Again whilst having the ultrasound I was talking to the doc asking if he could tell me anything. Again he was fantastic he said give me 15 mins and I will check ct scan. This was the longest 15 minutes ever. Please let it only be in my testicle is all I was thinking. He called me in a told me it was all contained. The relief was like nothing I had ever had, I cried as I was so happy. 

I then had the surgery the next day. The doc asked if I wanted a prosthetic one in which I declined. I joked that nobody sees it nowadays anyway being married not even the wife except Christmas. Again humour was how I dealt with things but in reality I was just praying they get it all out. The op went well and away I went. 

I felt relieved at this point as I knew there were no more rumours in my body but now it was a waiting game to see what type it was. I was told it would be a couple of weeks so I started chasing to find out with no success. 

Then I had a call from Paul Hutton at the QE who was brilliant and put my mind at rest. He said I would need to go in and meet the team. I got there hoping I wouldn’t have to have chemo but had decided if I had a choice I was gonna have it to make sure. I had read in certain situations they can offer surveillance if you didn’t want chemo. This decision was never on the table as mine was a terrotoma which is more aggressive and I also had vascular invasion which meant chemo, but still a great prognosis. 

Luckily the QE were doing a trial where instead of the standard 2 course (6 week) I could have 1 course at a higher dosage so 3 weeks. We went through everything and all I was thinking was am I going to get back for the playoffs at the end of the season. We were end of feb at this point. When are we starting then I said. Erm probably be a couple of weeks we will call you when we have a bed. 

Paul suggested I stored some sperm in case chemo killed it off. I did this which was the most awkward thing I’ve had to do. 

The call came you’re in on Monday. I was scared with the stories you had heard about chemo. I wasn’t bothered about my hair it was the rest of the side effects but knew if there were any stray cancer cells this would do the job and get rid of them. 

I turned up and the doctors came in a put my cannula in, my mom was crying at this point because she was scared I think. So it began the constant beeping of machines, the changing of chemo bags, the constant need to go for a wee, feeling sick. People say chemo is tiring I believe it’s the lack of sleep for 4 days that does it rather than the drugs. 

I got to know the guys in my ward and I felt a little guilt as all I had to go through was losing a testicle and have a round of chemo. One of the guys had been told he had months to live, one had lost a leg and the other was having multiple chemo cycles. I was lucky I had caught it early. Whilst I was in hospital my pals came but a big boost came when I had heard that at the Walsall home game on 15 minutes (my number) they had a minutes applause and this continued for the rest of the season. 

One thing that sticks in my mind about hospital was it was pancake day. I was in the ypu unit and next to this was the children’s ward. A lady who was next door with her daughter came and made us all pancakes. This was the most upsetting thing as I thought about being there with my own kids and probably how my mom still felt even though I was grown up. 

I was sent home with a bag of drugs and a red chemo card for emergencies. I had to return the next few weeks for a booster. I went straight home and shaved my hair off as I knew what was coming. As my wife was pregnant I was told to sleep in the spare room just as I would potentially perspire chemo drugs and didn’t want to put anyone at risk. 

All I wanted to do was eat and sleep for a few days my body craved pizza so it was Pizza Hut buffet then sleep. I soon released it was the anti sickness drugs that made me feel so bad and stopped taking it and dealt with the sickness.  On day 7 I had to give myself a neuroblast injection and I didn’t read the side effects. The next day I decided I was getting back on it and went for a run. I was breathing heavily after about 10 yards but plodded on to do a couple of miles. My back went into spasm I was worried as signs of spreading was back pain. Where’s my red card I wanted to know what was wrong. It was the injection but it knocked me off my feet. 

More and more appointments followed the same questions how do you feel. I’m good I’m back in the gym and getting stronger. Paul would say Kris relax and let your body recover but all I could think about was playing again. Eventually Paul cracked and said I would need an extra blood test to confirm my platelates were ok to start contact training. I was buzzing back with the lads. 

I rocked up and surprise surprise the jokes started bloody hell gaffa how have you managed to sign Jon joe shelvey due to my bald appearance one lad shouted. I was really heavy due to the drugs and the pizza but so happy to be with the lads. I had also started back to work a few weeks before but the difference in how I was treated at work to football was so different. At work people tried to pamper me which I hated and tried to give me easier work. I remember going to see the GM at the time to say I’m at work let me do my proper job. He said that if my doctor agreed that was fine so my doctor wrote me a letter.

I needed it for my own sanity although people thought I was nuts. 4 weeks after day one of chemo I was back at work and a week later starting to train again. It was my release and gave my focus on recovery. 

Once I was given my prognosis which was very good and I was lucky I treated it more like an injury and gave myself a timescale for recovery. Maybe this was the mentality you have from being so highly involved in sport for your whole life. 

I believe the more I sat on the sofa the worse I felt so I had to get up and be active. Yes I would be tired and constantly fall asleep on the sofa. For months I would get splitting head aches and have to go to bed in the afternoon. 

My initial treatment plan had finished and I was cancer free. I had my itinerary for the next 5 years checkups. I pinned it on the notice board ready to tick them off. The first couple I did then it became the norm. I even took my little girl a few times in school holidays as she liked to go on the train so treated it like a little trip. Even though I felt great those trips to the hospital were very nerve racking. In the back of your mind I hope they don’t find anything. This was very evident when it came to having ct scans. 

As time went by I became more relaxed and felt very comfortable with what I had been through. People are surprised how open I am about it all but I feel that if it helps someone then great. I had Mark Porter and checkemlads to support me at the start which was great. I was able to ask lots of questions I was concerned about before going to meet doctors. Ironically a few years before I was pictured in the warm up at port vale wearing the checkemlads T-shirt which Mark found out. 

I feel that everyone deals with these things in different ways I tried to stay positive and  give myself a focus. I gave myself a goal when I had the operation of the play offs and I returned to play after 2 and a half months. Looking back now it was daft as my body hadn’t recovered properly till about 6 months after that. 

Cancer is very cruel having lost someone close to it but I think the more people can talk about it and have early tests and check themselves the greater chance everyone has in fighting these terrible disease. 

BTC Pro/Celebrity football match

As part of our 10th anniversary celebrations we are holding a pro/celebrity football match at Hednesford Town Football Club on the 26th June.

Gates open at 12pm and the game will kick off at 2pm

We have a great line up of ex professional footballers and celebrities who are giving up their time free of charge to help us raise much needed funds.

They will be playing a team of players who have raised £100 each to play (they also get to keep their kit). You can secure a place on the team here. NO LONGER AVAILABLE

We are very grateful to Hayden and his club for giving us the pitch, staff and security from his team at Lionheart security all free of charge.

You can get tickets here….

VIP – seated with the celebrity guest, players and families

General Adult tickets

OAP/Child ticket

Standard Family Ticket

Our pro/celebrity team currently is…..

Neil (Razor) Ruddock – Ex Professional Footballer (Manager)

Sean Heydon – Magician

Andy Reid – Ex Professional Footballer

Paddy Wallace – Actor

Mel Eves – Ex Professional Footballer

Ricky Rayment – TOWIE

Micky Dumoulin – Singer

Kris Taylor – Ex Professional Footballer

Lewis Reeves – Actor

Leon Sturridge – Ex Professional Footballer

Matt Bailey – Ex Professional Footballer

Steve Clamp – ITV News Anchor

Leo Goldenchild – Singer

Dave Busst – Ex Professional Footballer