Hydrogen breath test

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This page outlines what to expect both during and after the test. You will need to do some test preparation, so please read everything carefully.

Hydrogen breath tests 

A hydrogen breath test is a safe, non-invasive test used to investigate certain intestinal disorders. Your consultant will have referred you to assess whether you have one or both of the following:

  • Small bowel bacterial overgrowth: This is a condition where there are abnormal numbers of bacteria in the small intestine.

    or

  • An intolerance to a specific sugar: An intolerance is when the body is unable to sufficiently break down a specific food (e.g. lactose which is the sugar found in dairy products).

Please be aware that if you have been referred for more than one breath test, these cannot be performed on the same day.

Upon arrival 

You will be greeted and taken into a private room by a member of the GI physiology team who will be performing the test. They will ask you some questions about the symptoms you have been having and take a brief history. They will also take this opportunity to answer any questions you have or any concerns regarding the test.

How shall I prepare for the test?

  • You need to fast for at least 14 hours before the test and not drink anything apart from water (particularly avoid milk and fruit juice the day before the test). If you are diabetic, please see the frequently asked questions below.
  • Avoid high fibre foods the day before the test including: fruit, vegetables, wholegrains.
  • Try to base meals around white bread, plain white rice/ pasta, potatoes (skin off), chicken or fish. There is a suggested meal plan below.
  • Your last meal on the day before the test should not be too big and should ideally not consist of any roughage (e.g. beans, cabbage or leeks).
  • You must not smoke/vape or chew gum 12 hours before the start of the test.
  • Avoid laxatives for 3 days before the test (especially lactulose).
  • Medicines (apart from vitamins, laxatives and antibiotics) can be taken with plain water on the day of the examination.
  • If you use dentures, do not use an adhesive on the day of test.
  • Brush your teeth on the day of the test.

The following will make the test results difficult to interpret:

  • Antibiotics in the last 4 weeks.
  • Colonoscopy in last 4 weeks.
  • Irrigoscopy in last 4 weeks.
  • Other bowel cleansing procedures in last 4 weeks.
  • Ileostomy (except for diagnosis of bacterial overgrowth).

Please contact the department if any of the above is unclear or you have had any in the last month (see below).

What does the test involve?

  • You will be asked to give an initial breath sample into a hand-held machine. This is done by holding your breath for 15 seconds and then blowing gently into a mouthpiece at a steady rate.
  • A cup of sugar dissolved in water will be then given to you to drink.
  • Additional breath samples will be taken every 20 minutes for 2-3 hours, while the test solution travels through the gastrointestinal tract.
  • During the test you should not eat, chew gum, smoke, sleep, or exercise.
  • You can continue normal activities once the test is completed.

Repeat testing 

If your initial breath sample is not sufficiently low enough (e.g. due to poor test preparation), we may have to re-book the test for another day. If this happens, we will ask you to come back with the following instructions:

  • Fast for at least 16 hours before the test.
  • Don’t eat any roughage (fibrous foods like beans, cabbage, and leeks) before the test.
  • If lactose intolerance is a possibility the last meal consumed prior to the test should not contain milk or dairy products. If fructose intolerance is suspected the last meal should not contain fruit.
  • On the morning of the test drink a glass of warm water (200-300ml).

Frequently asked questions

Are there any risks associated with this test?

Hydrogen breath tests are very safe. In some cases the test my trigger your usual symptoms. 

The hydrogen breath test is only dangerous in the following two (rare) scenarios: 

  • If hereditary fructose intolerance is suspected (or known) you must not undertake the fructose load test or sorbitol load test.
  • If you have postprandial hypoglycaemia (low blood sugars after eating) of unknown cause, you must not have a hydrogen breath test.

What will happen after your test?

A report with your results will be sent to your referring consultant or GP. If you require treatment, your doctor will arrange this. You may be asked to return for another appointment if an additional test using a different sugar has been asked for. You will be able to resume normal activities following the test.

Are there any alternatives to the test?

There are no alternative tests for diagnosis other than a trial of antibiotics in the case of suspected small bowel bacterial overgrowth, or dietary exclusion in the case of suspected sugar intolerances.

How long does the test take?

The appointment is for 2-3 hours with breath samples being taken every 20 minutes. This can feel timely and therefore please feel free to bring a book or magazine.

Diabetic patients

If you are diabetic please let our department know using the contact information below. 

Please bring the following to the appointment:

  • Your blood glucose monitor (if you have one).
  • Food to eat after the test.
  • Insulin (if you use this).

Further appointments 

If you require any additional information concerning the investigations or any advice please contact us using the details below: 

  • If unavailable please leave a message and you will be contacted.

Suggested meal plan 

A bland diet the day before the test is required to avoid compromising the results of the test. Please avoid roughage 

  • Breakfast: Plain white toast. Poached or hard boiled eggs.
  • Lunch: White bread sandwich with chicken/ham/tuna/tofu, a plain egg omelette (no butter or milk), or tofu scramble.
  • Dinner: White rice, chicken (no breadcrumb coating), seafood, pork, baked white potato (no skin).
  • Drinks: Water, black tea/ coffee (no milk or sugar).
  • Snacks/alternative: Small amounts of peanut butter.

References and sources of additional information

The Bladder and Bowel Foundation 

The Bladder and Bowel Foundation is a UK wide charity dedicated to helping people manage their continence needs as a result of both bladder and bowel control problems. They can be contacted at: 

British Nutrition Foundation 

This organisation is a registered charity that provides information on food and nutrition. They can be contacted at: 

Allergy UK 

This organisation is a national charity that provides information and advice on allergies and intolerances. They can be contacted at: 

© North Bristol NHS Trust. This edition published May 2024 Review due May 2027. NBT003005.

Contact GI Physiology

Gate 36, Level 1,
Brunel building, 
Southmead Hospital,
Bristol
BS10 5NB

Phone: 0117 414 8801
Email: GIphysiology@nbt.nhs.uk

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Patient Data & Research Privacy Policy

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As an NHS organisation, we use personally-identifiable information when conducting research to improve healthcare and services.

When you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from a study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

We have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to find out more about how we look after your data, please view the North Bristol NHS Trust Privacy Statement in full. Further information about how this data is used for research purposes can be found on the NHS Health Research Authority website.

What is Patient Data?

When you go to your GP or hospital, the doctors and others looking after you will record information about your health. This will include your health problems, and the tests and treatment you have had. They might want to know about family history, if you smoke or what work you do. All this information that is recorded about you is called patient data or patient information.

When information about your health care joins together with information that can show who you are (like your name or NHS number) it is called identifiable patient information. It’s important to all of us that this identifiable patient information is kept confidential to the patient and the people who need to know relevant bits of that information to look after the patient. There are special rules to keep confidential patient information safe and secure.

What sort of patient data does health and care research use?

There are lots of different types of health and care research.

If you take part in a clinical trial, researchers will be testing a medicine or other treatment. Or you may take part in a research study where you have some health tests or answer some questions. When you have agreed to take part in the study, the research team may look at your medical history and ask you questions to see if you are suitable for the study. During the study you may have blood tests or other health checks, and you may complete questionnaires. The research team will record this data in special forms and combine it with the information from everyone else in the study. This recorded information is research data.

In other types of research, you won’t need to do anything different, but the research team will be looking at some of your health records. This sort of research may use some data from your GP, hospital or central NHS records. Some research will combine these records with information from other places, like schools or social care. The information that the researcher collects from the health records is research data.

Why does health and care research use information from patients?

In clinical trials, the researchers are collecting data that will tell them whether one treatment is better or worse than other. The information they collect will show how safe a treatment is, or whether it is making a difference to your health. Different people can respond differently to a treatment. By collecting information from lots of people, researchers can use statistics to work out what effect a treatment is having.

Other types of research will collect data from lots of health records to look for patterns. It might be looking to see if any problems happen more in patients taking a medicine. Or to see if people who have screening tests are more likely to stay healthier.

Some research will use blood tests or samples along with information about the patient’s health. Researchers may be looking at changes in cells or chemicals due to a disease.

All research should only use the patient data that it really needs to do the research. You can ask what parts of your health records will be looked at.

How does research use patient data?

If you take part in some types of research, like clinical trials, some of the research team will need to know your name and contact details so they can contact you about your research appointments, or to send you questionnaires. Researchers must always make sure that as few people as possible can see this sort of information that can show who you are.

In lots of research, most of the research team will not need to know your name. In these cases, someone will remove your name from the research data and replace it with a code number. This is called coded data, or the technical term is pseudonymised data. For example, your blood test might be labelled with your code number instead of your name. It can be matched up with the rest of the data relating to you by the code number.

In other research, only the doctor copying the data from your health records will know your name. They will replace your name with a code number. They will also make sure that any other information that could show who you are is removed. For example, instead of using your date of birth they will give the research team your age. When there is no information that could show who you are, this is called anonymous data.

Where will my data go?

Sometimes your own doctor or care team will be involved in doing a research study. Often, they will be part of a bigger research team. This may involve other hospitals, or universities or companies developing new treatments. Sometimes parts of the research team will be in other countries. You can ask about where your data will go. You can also check whether the data they get will include information that could show who you are. Research teams in other countries must stick to the rules that the UK uses.

All the computers storing patient data must meet special security arrangements.

If you want to find out more about how companies develop and sell new medicines, visit the Association of the British Pharmaceutical Industry website.

What are my choices about my patient data?

  • You can stop being part of a research study at any time, without giving a reason, but the research team will keep the research data about you that they already have. You can find out what would happen with your data before you agree to take part in a study.
  • In some studies, once you have finished treatment the research team will continue to collect some information from your doctor or from central NHS records over a few months or years so the research team can track your health. If you do not want this to happen, you can say you want to stop any more information being collected.
  • Researchers need to manage your records in specific ways for the research to be reliable. This means that they won’t be able to let you see or change the data they hold about you. Research could go wrong if data is removed or changed.

What happens to my research data after the study?

Researchers must make sure they write the reports about the study in a way that no-one can work out that you took part in the study.

Once they have finished the study, the research team will keep the research data for several years, in case they need to check it. You can ask about who will keep it, whether it includes your name, and how long they will keep it.

Usually your hospital or GP where you are taking part in the study will keep a copy of the research data along with your name. The organisation running the research will usually only keep a coded copy of your research data, without your name included. This is kept so the results can be checked.

If you agree to take part in a research study, you may get the choice to give your research data from this study for future research. Sometimes this future research may use research data that has had your name and NHS number removed. Or it may use research data that could show who you are. You will be told what options there are. You will get details if your research data will be joined up with other information about you or your health, such as from your GP or social services.

Once your details like your name or NHS number have been removed, other researchers won’t be able to contact you to ask you about future research.

Any information that could show who you are will be held safely with strict limits on who can access it.

You may also have the choice for the hospital or researchers to keep your contact details and some of your health information, so they can invite you to take part in future clinical trials or other studies. Your data will not be used to sell you anything. It will not be given to other organisations or companies except for research.

Will the use of my data meet GDPR rules?

GDPR stands for the General Data Protection Regulation. In the UK we follow the GDPR rules and have a law called the Data Protection Act. All research using patient data must follow UK laws and rules.

Universities, NHS organisations and companies may use patient data to do research to make health and care better.

When companies do research to develop new treatments, they need to be able to prove that they need to use patient data for the research, and that they need to do the research to develop new treatments. In legal terms this means that they have a ‘legitimate interest’ in using patient data.

Universities and the NHS are funded from taxes and they are expected to do research as part of their job. They still need to be able to prove that they need to use patient data for the research. In legal terms this means that they use patient data as part of ‘a task in the public interest’.

If they could do the research without using patient data they would not be allowed to get your data.

Researchers must show that their research takes account of the views of patients and ordinary members of the public. They must also show how they protect the privacy of the people who take part. An NHS research ethics committee checks this before the research starts.

What if I don’t want my patient data used for research?

You will have a choice about taking part in a clinical trial testing a treatment. If you choose not to take part, that is fine.

In most cases you will also have a choice about your patient data being used for other types of research. There are two cases where this might not happen:

  • When the research is using anonymous information. Because it’s anonymous, the research team don’t know whose data it is and can’t ask you.
  • When it would not be possible for the research team to ask everyone. This would usually be because of the number of people who would have to be contacted. Sometimes it will be because the research could be biased if some people chose not to agree. In this case a special NHS group will check that the reasons are valid. You can opt-out of your data being used for this sort of research. You can ask your GP about opting-out, or you can find out more by visiting the NHS UK website.

Who can I contact if I have a complaint?

If you want to complain about how researchers have handled your information, you should contact the research team. If you are not happy after that, you can contact the Data Protection Officer. The research team can give you details of the right Data Protection Officer.

If you are not happy with their response or believe they are processing your data in a way that is not right or lawful, you can complain to the Information Commissioner’s Office.

Donate to Research

Doctors receiving new medical equipment

Support our mission to improve patient care by donating to Research today.

Meet the Research & Development Team

Research Nurses at NBT

Want to find out more about our research? Simply get in touch with a member of our team here.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

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Flow studies

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Your doctor/nurse has requested that you have a test called ‘flows’. This test is simple and requires you to pass urine into a special toilet. Afterwards you will have the lower part of your abdomen (tummy) scanned with a small ultrasound device to see whether you have emptied your bladder fully. This device is not invasive and will not hurt. You will be asked to do the flow test at least twice so you should allow 2 - 4 hours for the test to be completed and expect to be in the hospital for this amount of time.

If you feel you are unable to attend this appointment, please inform the hospital as soon as possible so that the necessary arrangements can be made to re-arrange your test.

Please eat and drink normally to make sure you are hydrated before you come for your test. If possible please arrive with a comfortably full bladder.

Please note: we will be unable to perform your flow test if you have a catheter inserted or a symptomatic urinary tract infection.

Are there any risks associated with these tests?

No, there are no risks associated with flow studies.

What the test involves

Before the test

You will be sent a 3-day bladder diary and quality of life questionnaire by post with your clinic appointment. It is important that you complete the 3-day bladder diary and quality of life questionnaire to the best of your ability. If you do not receive these please call the number on your appointment letter to have another one sent to you. It is important that you bring your bladder diary and quality of life questionnaire with you to the flow clinic. It gives us a lot of information that will help in offering suitable treatments and forming a diagnosis.

During the test

On arrival to the flow clinic, a member of staff will meet you and explain the test fully. You will be asked to drink some water or other fluids to fill your bladder and wait until your bladder is comfortably full before you pass urine. If you arrive with a comfortably full bladder and feel that you need to pass urine then you would be able to do that into the flow meter.

Once you are ready to pass urine you will need to let the member of staff know and they will ask you to urinate, in privacy, into a specially adapted toilet (flowmeter) that will measure how quickly you pass urine. You need to pass urine like you do at home and be as relaxed as possible when you do so.

After passing urine into the flowmeter you will be asked to lie on a couch to have an ultrasound scan of your bladder to see how much urine is left. The scan is performed by placing some warm gel on the skin over your bladder area and moving an ultrasound probe over the skin.

Your urine will also be tested for infection, blood, and other parameters using a ‘dipstick’ and results will be documented in the final report.

This process will normally be repeated two or sometimes three times. This is why the test takes a long time as we have to wait for your bladder to fill each time before you urinate.

After the test

The results will be entered onto our electronic database and the flows scanned to be stored on the electronic patient records.

The results of your flow studies will be sent to the person who referred you for the test; this may be your consultant, GP or continence advisor. Your results will then be reviewed and you may either be sent an appointment to see your doctor or they will write to you with the results and further recommendations.

Patient information

In carrying out our day to day activities, including research, we process and store personal information relating to our service users and we are therefore required to adhere to the requirements of the Data Protection Act 1998 and the General Data Protection Regulation (GDPR), which will apply in the UK from 25 May 2018. Some of your data and results may be used for research purposes but none will have any identifiable information.

We take our responsibilities under these acts very seriously. We ensure the personal information we obtain is held, used, transferred and otherwise processed in accordance with applicable data protection laws and regulations.

Flow Studies Pathway

  1. Referred for flow studies by Doctor or Nurse. Contacted by flows co-ordinator (phone or letter). Flow studies appointment letter sent with bladder diary and quality of life questionnaire
  2. Attend flow study appointment in urology clinic. Test fully explained by a member of staff and bladder diary and quality of life questionnaire collected. Pass urine into flowmeter and have ultrasound scan of bladder – process repeated 2-3 times.
  3. Results from your flow studies will be stored on our electronic database and electronic patient records. Results will also be sent to your referring Doctor or Nurse.

If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice.

How to contact us:

Flows Coordinator 0117 414 4974

Bristol Urological Institute (BUI)
Southmead Hospital
Southmead Road
Westbury-on-Trym
Bristol BS10 5NB

© North Bristol NHS Trust. This edition published April 2024. Review due August 2027. NBT003109.

Patient Research Studies

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If you are being treated by us, you may be invited to take part in one of our studies related to your particular health condition.

Our research studies often seek many recruits, but in order to participate they must meet certain eligibility criteria. These criteria may concern a patient’s type of disease, history, age, gender, etc. They can also be quite specific to ensure that the people who take part are not exposed to avoidable risks. At North Bristol NHS Trust, we regularly identify participants for research based on these factors, informing patients of any treatments we may have in development that may benefit them.

Why take part?

Clinical research is essential for developing better treatments and improving healthcare. Many patients take part in clinical research to help us to find the best ways to:

  • Prevent disease and reduce the number of people who become ill.
  • Treat an illness to improve survival or increase the number of people cured.
  • Improve the quality of life for people living with an illness, including reducing symptoms of disease or the side effects of other treatments, such as cancer chemotherapy.

Health professionals and patients need the evidence from trials to know which treatments work best. Without trials, there is a risk that people could be given treatments which have no advantage, waste resources and might even be harmful. Many treatments that are now in common use in health care were tested in clinical trials.

Is it safe to take part?

All clinical research undertaken at North Bristol NHS Trust is reviewed by an NHS Research Ethics Committee and approved by the Health Research Authority before it can start. This ensures the rights, dignity, safety and wellbeing of the patients who take part are protected.

Each study is designed to keep risk to a minimum. The people who take part are actively monitored throughout, with their safety and wellbeing always coming first.

If you have any questions or concerns about a trial you wish to take part in, speak to the clinician in charge of your care.

It is ok to ask about research.

To see the full range of research that is currently taking place across the hospital, please visit Our Research pages.

Donate to Research

Doctors receiving new medical equipment

Support our mission to improve patient care by donating to Research today.

Meet the Research & Development Team

Research Nurses at NBT

Want to find out more about our research? Simply get in touch with a member of our team here.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

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Molar Pregnancy: Gestational Trophoblastic Disease

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What is a molar pregnancy?

Molar pregnancy (also called hydatidiform mole) occurs when a pregnancy does not develop properly. In healthy pregnancies, an embryo (baby) develops when a sperm fertilises an egg and the genetic material (chromosomes) from each combines to produce a baby which has half of its genes from each parent. A molar pregnancy is abnormal from the very moment of conception as a result of an imbalance in the number of chromosomes supplied from the mother and the father.

There are two types of molar pregnancy - complete mole and partial mole.

  • Complete moles usually occur when a single sperm fertilises an ‘empty’ egg with has no genetic material inside, and then divides to give the fertilised egg a normal number of chromosomes, all of which have come from the father. Complete moles can also occur when two sperm fertilise an ‘empty’ egg.
  • Partial moles occur when two sperm fertilise a normal egg and the developing pregnancy then has three sets of chromosomes or more. In a partial mole, there are usually some early signs of development of a fetus on ultrasound but it is always abnormal and cannot develop into a baby.

Molar pregnancy is more likely to develop in women of Asian origin, teenagers and women over 40 years.

If left untreated, molar pregnancy can continue to grow and change into cancerous cells. Therefore when molar pregnancy is diagnosed, it is important that this is promptly treated and carefully monitored.

It is important for you to know that a molar pregnancy is not caused by anything that you/your partner have or haven’t done.

How common is molar pregnancy?

Molar pregnancies are rare, happening with roughly 1 case for every 600 pregnancies in the UK.

When might a molar pregnancy be suspected?

If you have a molar pregnancy you may have irregular or heavy bleeding from the vagina, or excessive morning sickness (hyperemesis). Your womb (uterus) may feel larger than your midwife or doctor would expect in early pregnancy. Less commonly, you may develop raised blood pressure, symptoms of an overactive thyroid gland or abdominal pain because of large ovarian cysts.

If your doctor suspects that you may have a molar pregnancy, you will be referred to an early pregnancy clinic for an ultrasound scan.

If you have a complete mole, there will be no baby present inside the pregnancy sac and there may be other signs that suggest the presence of a molar pregnancy. Ultrasound may also help in diagnosing partial moles, but it is not as reliable as in cases of complete moles.

A blood test which measures the amount of the pregnancy hormone human chorionic gonadotrophin (hCG) may also raise the suspicion that you have a molar pregnancy. Usually, the levels of this hormone are much higher than would be expected in a healthy pregnancy.

A molar pregnancy may be found after what is suspected to be a miscarriage.

How is it diagnosed?

Most molar pregnancies are diagnosed at the first ultrasound scan then confirmed by a laboratory analysis of the pregnancy tissue. In some cases, the pregnancy tissue may have been sent to a laboratory for analysis following surgery for miscarriage or termination for other reasons. This may confirm that the pregnancy was molar, even if a molar pregnancy was not initially suspected.

How is it treated?

Once a molar pregnancy is confirmed, the first step is to remove the cells from the womb. This is usually done surgically using a suction evacuation procedure. Medication may be used to soften the cervix (neck of the womb) prior to your operation. You will usually need a general anaesthetic for this type of operation. During the operation, the cervix is stretched slightly and a suction device is used to remove all of the abnormally formed tissue from inside your womb.

In some unusual cases, you may be recommended to have a miscarriage induced with medication. The doctors looking after you will discuss this with you in detail if this is the case.

What happens after the treatment?

After the initial treatment, all people with a molar pregnancy should be in a follow-up programme that monitors what is happening to any cells that remain in the womb and picks out those people that need further treatment. In the UK, all people who have a molar pregnancy are enrolled into a national surveillance programme. The closest surveillance centre to Bristol is Charing Cross Hospital in London.

Molar pregnancy cells produce pregnancy hormone called hCG. This is why people with molar pregnancies have a positive pregnancy test despite not having a normal pregnancy.

Measuring the level of hCG after removal of molar pregnancy allows the surveillance team to follow exactly what is happening with any molar pregnancy cells left in the womb. The level of hCG in the blood gives a really accurate picture of what these cells are doing. If the level of hCG is falling then the number of cells are reducing and no treatment is needed. If the level is static or rising then the number of abnormal cells is increasing and additional treatment may be needed.

People on the surveillance programme will be contacted directly by Charing Cross Hospital and typically asked to send in blood and/or urine samples until hCG level has fallen to a reassuring level. It is very unlikely that you will need to seen in person at Charing Cross Hospital in London.

What if I need further treatment?

The majority of people who have a molar pregnancy will not need any further treatment after the initial suction evacuation procedure. However, approximately 15% of people with complete molar pregnancy and around 1% with partial molar pregnancy will require additional treatment.

The two main reasons patients need further treatment is because either the hCG level starts to rise or reaches a plateau or because there is heavy vaginal bleeding.

The two choices of treatment are a further surgical evacuation procedure or chemotherapy treatment. The majority of patients are treated with chemotherapy as this has a much higher success rate.

Fortunately the overall cure rate for women who need treatment after a molar pregnancy is over 99%.

When can I try for pregnancy?

We advise that a further pregnancy is deferred until the end of the follow-up period, as a new pregnancy may mask the evidence of the relapse of the molar pregnancy that can happen in a very small number of people.

The length of follow-up will depend on your individual needs. The follow-up will be for at least 6 months and possibly longer depending on how quickly your hCG level returns to a reassuring level.

Once the treatment is completed, the fertility rate is expected to be normal.

Is contraception safe to use?

Yes, both hormonal and non-hormonal type contraception are safe to use.

Is this going to affect my future pregnancy?

People who have had one molar pregnancy do have an increased risk of developing another in future pregnancy. However this risk is still low; estimated at around 1 in 100.

Even more unusually the surge of hormones in a later pregnancy can cause a relapse of the old molar pregnancy and start any cells still present to grow again and potentially cause problems. Whilst this problem is very rare, we screen for it by testing the urine 6 weeks after delivery and the blood and urine 4 weeks later after this.

We would also offer an early scan in any subsequent pregnancy from when you are approximately 6 weeks pregnant via the Early Pregnancy Clinic.

Links for useful information:

Charing Cross Hospital Trophoblast Disease Service
/www.hmole-chorio.org.uk/index.html

My Molar Pregnancy: mymolarpregnancy.com/

Molar Pregnancy Support and Information: www.molarpregnancy.co.uk/

Miscarriage Association: www.miscarriageassociation.org.uk

Glossary of terms

Gestational trophoblastic disease (GTD): A group of conditions that may occur when a pregnancy does not develop properly. GTD includes complete and partial molar pregnancy.

Molar pregnancy: An abnormal pregnancy which develops as a result of an imbalance in the amount of genetic material when the embryo first develops. Molar pregnancy is best though of as a pre-cancerous illness which can occasionally progress to a cancerous form of GTD known as gestational trophoblastic neoplasia (GTN).

Complete molar pregnancy: A molar pregnancy where there is no fetus present.

Partial molar pregnancy: A molar pregnancy where there are usually some early signs of development of a fetus on ultrasound but it is always abnormal and cannot develop into a baby.

Gestational trophoblastic neoplasia (GTN): A rare form of cancer which develops from a molar pregnancy. GTN includes invasive mole, chriocarcinoma, placental site trophoblastic tumour and epithelioid trophoblastic tumour.

If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice.

How to contact us:

Cotswold ward, Brunel building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB
Cotswold ward (24 hours)

0117 414 6785

© North Bristol NHS Trust. This edition published March 2020. Review due March 2022. NBT003056

Rheumatology Current Research

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Rheumatology research taking place at North Bristol NHS Trust

Please speak to the person treating you to see if there is a research study that may be able to help you.

Current Studies:

BSRBR-RA

The BSRBR-RA study tracks the progress of people with rheumatoid arthritis (RA) who have been prescribed biologic (including biosimilar) and other targeted therapies in the UK, to monitor the long-term safety of these drugs.

Project Details
Principal Investigator: Dr Paul Creamer
Planned End Date: 30/09/2028
Local Ref: 3512

BSRBR-PsA

The study evaluates the long-term course of PsA and,patients are followed up annually, comprising patient and treatment characteristics, clinical parameters,patient-defined benefit, quality of life and adverse events. In addition, patients starting a boDMARD, bsDMARD, or tsDMARD agent (either at recruitment or subsequently) will be followed up three and six months after the commencement of that therapy, with the follow-up schedule being ‘reset’ in the event of switching between therapies. Questionnaire follow-up is tied to patients’ anticipated clinical visit schedule, and clinical centres are contacted regarding any patients lost-to-follow- up. Safety issues, serious adverse events and supplementary information are collected by standardised forms.

A biobank is also being created as part of the study. Where local facilities allow, participants may be asked to donate tissue samples (blood and urine) which, alongside the extensive clinical phenotyping, will help facilitate biomarker evaluation and the identification of specific bio-molecular predictors of treatment response.

Project Details
Principal Investigator: Dr Paul Creamer
Planned End Date: 30/09/2024
Local Ref: 4721

MINIMISE

Systemic sclerosis or scleroderma is an autoimmune condition that causes thickening and hardening of the skin, but can also affect internal organs.

There are two major subsets of scleroderma: the limited cutaneous systemic sclerosis (lcSSc) that usually affects the skin of the face, neck, lower legs or lower arms, but can also lead to internal organ complications, and the diffuse cutaneous systemic sclerosis (dcSSc), that may affect blood circulation and internal organs, as well as the skin.

To date there is no drug that has been definitively proven to cure or modify the course of scleroderma. However, there is emerging evidence that immunosuppression and specifically mycophenolate mofetil (MMF) may be beneficial in lcSSc. The MINIMISE-Pilot trial would be an important first step to evaluate the risk and potential benefit to this disease group. MMF as the intervention of choice is both appropriate and timely, as it has been routinely used in the management of dcSSc.

The MINIMISE-Pilot trial aims to explore whether the immunosuppressive agent MMF at a target dose of 2g daily can slow down disease progression in patients with lcSSc compared to the current standard of care alone. This pilot trial will also provide critical information for the development of a future large trial that could potentially transform lcSSc patient management. This is an open label randomised prospective trial that will recruit 120 participants aged 18 or over across 13 sites in the UK. The trial will involve five (5) clinic visits which are expected to be carried out at the same time of the participants routine hospital appointment. In addition, they will receive four (4) routine telephone calls in between their clinic visits. Participants are expected to be followed up for a minimum of 48 weeks or a maximum of 96 weeks.

Project Details
Principal Investigator: Dr H Gunwardena
Planned End Date: TBC
Local Ref: 4766

UKIVAS

Primary systemic vasculitidies (PSV), encompassing Anti-Neutrophil Cytoplasmic Antibody (ANCA) associated vasculitis and medium vessel vasculitis, are relatively uncommon diseases, but have a propensity for renal involvement and account for a significant number of patients with both acute and chronic kidney disease. The aetiology of PSV is unknown and current therapies are non-specific and associated with major side effects. Outcome data for such patients have comprised small cohort studies from single centres. Understanding the factors that influence disease outcome and the impact different therapies have outside of clinical trials can only be achieved using a larger number of patients, accrued from multiple different units.

We propose to establish the first pan-UK PSV dataset, which will collect regular returns regarding patient recruitment and outcome from all participating centres. This will facilitate investigation of disease associations, outcomes and demographic trends for the UK PSV population. We will test the hypothesis that disease incidence is increasing in Indo-Asians and why the outcome may be different among different ethnic groups, as well as investigating contemporary outcomes with modern immunosuppressive protocols. In addition, we will combine clinical phenotype with genetic studies. Specifically we will investigate genetic variation between ethnic groups by looking at variations in DNA sequences that can help to explain differences in disease susceptibility. These are investigated using many DNA specific markers, called single-nucleotide polymorphisms (SNPs) whose expression will be compared between patients from different ethnic groups.

Finally, we will be able to record the outcome of all patients treated with novel therapeutics, thus eliminating the significant reporting bias that exists. This will allow individual investigators to carry out particular projects mining the dataset.

Project Details
Principal Investigator: Dr Albert Power
Planned End Date: 28/02/2022
Local Ref: 3724

BILAG

The BILAG Biologics Prospective Cohort is a prospective observational cohort study of patients with SLE who are starting treatment with a biologic drug or a conventional, non-biologic therapy. The study aims to recruit 220 patients into the biologic treatment group and a further 220 patients into the conventional, non-biologic therapy cohort.

The aim of the BILAG BR is to ascertain whether using biologics in the routine treatment of SLE is associated with an increased risk of hospitalisation for infection, compared to SLE patients with similar disease activity receiving conventional therapies. The secondary purpose of the BILAG Biologics Prospective Cohort is to determine the long-term efficacy of biological therapies in the treatment of SLE.

This prospective cohort study will recruit an exposed cohort of patients with SLE treated with biological therapies and an unexposed cohort of patients with similar disease characteristics but exposed only to conventional non-biological therapies. Comprehensive data will be collected at baseline, from the clinic team and the patient, including data on disease diagnosis and activity, risk factors for infection and routine laboratory results. Follow-up data will be collected at 3, 6, 12, 24 and 36 months to include any changes in medications, adverse events, hospitalisations for infections, disease activity and quality of life along with biological samples for biomarker analysis.

Project Details
Principal Investigator: Dr Harsha Gunawardena
Planned End Date: 31/12/2022
Local Ref: 8251

Paused Studies:

MYOPROSP

Idiopathic Inflammatory Myopathies (IIM), also know as myositis, is a rare condition that causes inflammation of the muscles and can result in weakness, fatigue and disability. It can also affect other parts of the body including the skin, joints, heart, lungs and digestive tract. Treatment involves the suppression of inflammation using anti inflammatory medication before permanent damage results. However, the outcome for patients with myositis is not as good as it could be and needs to be improved. For this reason we are planning a research study to find better ways to diagnose, treat and improve the care of patients with myositis.

Patients wishing to take part will ideally attend for 4 study visits over the course of 12 months. If they continue to be seen at the hospital, they may also be asked to provide further blood samples and information on an annual basis for 5 years. At the initial visit they will be asked to sign a consent form, give a blood sample, undergo a clinical assessment and complete a number of questionnaires. Additionally (as part of their routine clinical care), they will be asked to undertake an MR scan of their muscle, a muscle biopsy, and be given the option of an MR contrast scan of their heart (these clinical results will be used as part of research findings. Follow up visits at 3, 6 and 12 months will involve further blood samples, clinical assessments and questionnaires. Additionally, they will be given the option of a second MR muscle scan, a repeat muscle biopsy and an MR contrast scan of their heart at the 6 month follow up visit.

It is hoped that the information gained from this study will help identify better ways to diagnose, treat and improve the care of patients with myositis.

Project Details
Principal Investigator: Dr Harsha Gunawardena
Planned End Date: 31/12/2020
Local Ref: 3793

Take Part in Research

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Become one of the thousands of people taking part in research every day within the NHS.

About Research & Development

NBT Researcher

Find out more about our research and how we're working to improve patient care.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

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Multiple Sclerosis Current Research

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Multiple Sclerosis research taking place at North Bristol NHS Trust

Please speak to the person treating you to see if there is a research study that may be able to help you.

Current Studies:

MS-STAT2

Multiple Sclerosis (MS) is a progressive neurological disorder of the brain and spinal cord. It affects approximately 120,000 people in the UK and 2.5 million people globally. Most people with MS experience two stages of the disease:

Early MS – Relapsing-Remitting MS (RRMS), which is partially reversible.

Late MS – Secondary Progressive MS (SPMS), which affects the majority of patients, usually after 10 to 15 years after diagnosis.

SPMS results from progressive neuronal degeneration that causes accumulating and irreversible disability affecting walking, balance, manual function, vision, cognition, pain control, bladder and bowel function. The pathological process driving the accrual of disability in SPMS is not known at present.

Immunomodulatory anti-inflammatory disease modifying therapies (DMTs) are increasingly effective in reducing relapse frequency in RRMS, however, they have been unsuccessful in slowing disease progression in SPMS. This is the overwhelming conclusion from an analysis of 18 phase 3 trials (n=8500), of which 70% of the population had SPMS, all performed in the last 25 years. There is no current disease modifying treatment (DMT) for SPMS.

In an earlier study (MS-STAT1), 140 people with SPMS were randomly assigned to receive either placebo or simvastatin for a period of two years. The investigators found that the rate of brain atrophy (loss of neurons - ‘brain shrinkage’), as measured by magnetic resonance imaging (MRI), was reduced in patients receiving simvastatin compared to those taking placebo.

Several other long term studies have also reported that there might be a relationship between the rate of brain atrophy and the degree of impairment.

The study is designed to test the effectiveness of repurposed simvastatin (80mg) in a phase 3 double blind, randomised, placebo controlled trial (1:1) in patients with secondary progressive MS (SPMS), to determine if the rate of disability progression can be slowed over a 3 year period.

Project Details
Chief Investigator: Dr Claire Rice
Planned End Date: TBC
Local Ref: 4104

A prospective, real world pharmacovigilance study in Multiple Sclerosis

This pragmatic, prospective observational cohort study is planned to run for 7 years to estimate the frequency of serious adverse events with real world DMT use in routine clinical practice in the UK. It is a non-interventional cohort study. The study will recruit people with MS on treatment from major MS care clinics across the country, as well as those starting, switching or potentially eligible for treatment, but who are not currently taking DMT. This study will provide – for the first time - an estimate of overall rates of serious adverse events associated with DMT (including multiple sclerosis relapses or opportunistic infections) in the UK population with MS. It will facilitate a way of exploring related questions regarding the relative benefits vs risks of treatment and the influence of prior treatments on adverse events.

Project Details
Principal Investigator: TBC
Planned End Date: TBC
Local Ref: 4635

Take Part in Research

Patient & Doctor viewing an x-ray

Become one of the thousands of people taking part in research every day within the NHS.

About Research & Development

NBT Researcher

Find out more about our research and how we're working to improve patient care.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

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Immunology Current Research

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Immunology research taking place at North Bristol NHS Trust

Please speak to the person treating you to see if there is a research study that may be able to help you.

Current Studies:

Hereditary Angioedema (HAE) studies a disorder that results in recurrent attacks of severe swelling.
Please speak to the person treating you to see if you can take part in our current research studies listed below.

Oasis - IONIS CS7

A phase 3 double blind, placebo-controlled study to evaluate the efficacy and safety of prophylactic Donidalorsen in HAE. Patient recruitment is closed but current and new participants may enrol to an open-label extension study. Patients need to have at least 2 HAE attacks within the last 2 consecutive months to participate. There are also other inclusion /exclusion criteria and recruitment is subject to availability.

Project Details
Principal Investigator: 
Planned End Date: 31/12/24
Local Ref: 5248

Chapter-1 Pharvaris

Chapter-1 is a phase 2 double-blind, placebo-controlled, randomized, dose-ranging, parallel group study to evaluate the safety and efficacy of PHA-022121 administered orally for prophylaxis against angioedema attacks in patients with HAE. Patients need to have at least 3 HAE attacks within the last 3 consecutive months to participate. There are also other inclusion /exclusion criteria and taking part in the study is subject to availability.

Project Details
Principal Investigator: 
Planned End Date: 31/12/2023
Local Ref: 5046

Take Part in Research

Patient & Doctor viewing an x-ray

Become one of the thousands of people taking part in research every day within the NHS.

About Research & Development

NBT Researcher

Find out more about our research and how we're working to improve patient care.

Contact Research

Research & Development
North Bristol NHS Trust
Level 3, Learning & Research building
Southmead Hospital
Westbury-on-Trym
Bristol, BS10 5NB

Telephone: 0117 4149330
Email: research@nbt.nhs.uk

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Genetic testing in inherited breast and ovarian cancer R208

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This leaflet has been written for people who have a personal or family history of breast cancer that could have an inherited cause, and who are considering having a genetic test. It has been written for use with a Clinical Genetics appointment and may answer some of your questions.

Is breast and ovarian cancer inherited?

It is rare for breast and ovarian cancer to be inherited. However, breast cancer occurs in many women, with around one in every seven in the UK developing the disease during their lifetime. Ovarian cancer develops in around one in 50 women in their lifetime. In about 5 - 10% of these cases, a specific gene alteration plays a part. We currently test for 5 genes: BRCA1, BRCA2, PALB2, ATM and CHEK2 in the R208 test. If any of these genes are altered, that person has a substantially increased risk of developing certain types of cancer, depending on which gene is affected.

What are genes?

Our genes can be found in almost every cell in our body. They are the instructions that enable our bodies to grow and function correctly. BRCA1, BRCA2, PALB2, ATM and CHEK2 are tumour suppressor genes that help to protect us from developing cancer. An alteration can affect the function of the gene. This can increase the chance of developing, for example, breast, ovarian and prostate cancer, which is more likely to occur at a younger age.

How are these genes inherited?

All our genes come in pairs; we inherit one of each pair from our mother and the other from our father. Alterations in the genes in the R208 test are inherited in an ‘autosomal dominant’ manner. This means that the children (male or female) of a person with an alteration in one of these genes have a 1 in 2 (50%) chance of inheriting it. An alteration can be inherited from either parent.

If a person has not inherited an alteration, they cannot pass it on to their children.

Autosomal dominant inheritance - gene diagram showing how an altered gene can be passed on

Can genetic test results be uncertain?

Sometimes we find an alteration in a gene, but we are not sure of its significance. This is called a variant of uncertain significance (VUS). If we are uncertain whether the gene alteration found is the cause of the cancers in your family, we will not be able to offer a predictive genetic test to other family members. However, we may ask for extra samples from you or other family members to try to gather more information. Often these extra tests help to establish whether or not the VUS is the explanation for your family history of cancer.

What if a relative who has had cancer is not available for testing?

In some cases, where there is no affected family member available for testing we may:

  1. Offer testing to someone in the family who has not had a cancer. This may be offered if the family history gives a high enough chance that there is a gene alteration. (The relative without cancer must have a 10% chance of having a gene alteration). Testing someone who has not had cancer may make some results harder to interpret. For example, if no gene alteration is found we would not know whether there is a gene alteration that this relative has not inherited or there is another cause for the family history.
  2. It may be possible to test a tumour sample from a relative who has passed away. Testing tumour samples is more technically difficult than testing a blood sample. It is possible that this test will not work because of the way the tumour samples are stored.

Does everyone who has an alteration in one of these genes get breast cancer?

No. The chance of developing breast and other cancers associated with the genes is not 100%. We do not yet know why some people with an alteration develop cancer and some do not. Lifestyle or other genetic factors are likely to play a role. It is important to note that developing cancer is not the same as dying from cancer. Even if cancer develops, there is a chance that the disease can be cured if it is found and treated early.

What are the genes in the R208 test and the risks associated with them?

BRCA1:

Breast cancer

  • Female carriers - 60% to 80%
  • Male carriers - 1%
  • Members of the general population - 14% (female), 1% (male)

Ovarian cancer

  • Female carriers - 40% to 60%
  • Male carriers - men do not have ovaries
  • Members of the general population - 1% to 2% (female)

 Prostate cancer

  • Female carriers - women do not have a prostate gland
  • Male carriers - minimal increased risk
  • Members of the general population - 12%

Pancreatic cancer

  • Female carriers - up to 3%
  • Male carriers - up to 3%
  • Members of the general population - 1.8%


BRCA2:

Breast cancer

  • Female carriers - 60% to 80%
  • Male carriers - 6%
  • Members of the general population - 14% (female), 1% (male)

Ovarian cancer

  • Female carriers - 10% to 30%
  • Male carriers - men do not have ovaries
  • Members of the general population - 1% to 2% (female)

 Prostate cancer

  • Female carriers - women do not have prostate gland
  • Male carriers - 25% (often more aggressive in younger men)
  • Members of the general population - 12%

Pancreatic cancer

  • Female carriers - 2% to 7%
  • Male carriers - 2% to 7%
  • Members of the general population - 1.8%

Remember, 10 per cent means one person in every 10 will develop this cancer in their lifetime.

For women who have already been affected with breast cancer, we know there can be an increased chance of developing a completely new cancer. This is different to a cancer which recurs or spreads from the first (original) cancer. Please discuss this with your clinician.
 

PALB2:

Breast cancer

  • Female carriers - 13% to 21% by age 50, 44-63% by age 80
  • Male carriers - less than 1% by age 50, around 1% by age 80
  • Members of the general population - 14% (female), 1% (male)

Ovarian cancer

  • Female carriers - less than 1% by age 50, around 5% by age 80
  • Male carriers - men do not have ovaries
  • Members of the general population - 1% to 2% (female)

 Prostate cancer

  • Female carriers - women do not have prostate gland
  • Male carriers - minimal increased risk
  • Members of the general population - 12%

Pancreatic cancer

  • Female carriers - less than 1% by age 50, 2-3% by age 80
  • Male carriers - less than 1% by age 50, 2-3% by age 80
  • Members of the general population - 1.8%

Family history is taken into account to calculate an individualised risk assessment
 

ATM:

Breast cancer

  • Female carriers - 17% to 30% (Except c.7271T>G which is over 30%)
  • Male carriers - minimal increased risk
  • Members of the general population - 14% (female), 1% (male)

CHEK2:

Breast cancer

  • Female carriers - around 25%
  • Male carriers - minimal increased risk
  • Members of the general population - 14% (female), 1% (male)

What are the implications of the R208 test?

This testing can sometimes tell you that your chance of developing cancer is increased, but we cannot tell you for certain when, or even if, you will develop cancer. 

If an alteration is found in any of the genes in the panel, there is an increased chance of developing cancer. Some people may worry that genetic testing will affect insurance prospects (for example, health, life, or disability insurance). Currently, the insurance industry cannot ask about genetic testing for most policies. This position may change in the future. 

Some people feel a range of emotions when they are told that they have a gene alteration which increases their chance of cancer. They may feel angry, shocked, anxious or guilty about the possibility of passing the gene alteration on to their children. Some people may also feel guilty if they do not have the gene alteration when other close relatives do.

Genetic testing in a family can affect other family members, who may need to be told that they too are at an increased risk of developing cancer and may be eligible for genetic testing and/or screening. Different family members may have different reactions to this information, and genetic testing may therefore affect relationships within families. Your clinician will provide you with a letter that you can pass onto relatives to help them to access genetic testing.

Can having a BRCA1 or 2 gene alteration affect cancer treatment?

There are new drugs available called PARP inhibitors (Olaparib and Niraparib) which have been shown to improve survival in individuals diagnosed with breast or ovarian cancer who have a BRCA1 or 2 gene alteration. PARP inhibitors are not currently used for carriers of PALB2, ATM or CHEK2.

What screening is available for women with alterations identified through the R208 test?

MRI (magnetic resonance imaging)

Breast MRI is the most effective form of breast screening for younger women. Breast MRI is offered to women with a BRCA1, BRCA2, PALB2 or ATM c.7271T>G gene alteration every year from 30 until 49 years of age. Women who have a 50% or 1 in 2 chance of having these specific gene alterations are also eligible for this screening. 

Mammography

This form of screening has not been proven to be effective in women under the age of 40. It has been shown to be beneficial over the age of 40, especially alongside breast MRI. 

Women with a BRCA1, BRCA2, PALB2 or ATM c.7271T>G gene alteration are offered annual mammograms from 40 until 69 years of age. Women who have a 50% or 1 in 2 chance of having these specific gene alterations are also eligible for this screening. 

Women with a CHEK2 or any other ATM gene alteration are offered annual mammograms from 40 until 49 years of age. They are then enrolled into the NHS breast screening programme to have mammograms every 3 years from 50-69 years of age.

From 70 years of age, women can request to have a mammogram every three years by contacting their local breast unit or GP.

Is there any screening for ovarian cancer?

Some recent evidence suggests that ovarian cancer may help to detect ovarian cancer at an earlier stage. However, there is not enough evidence yet that this screening saves lives. Therefore, it is not currently offered as part of NHS treatment.

Is there any other recommended screening?

If you have a family history of pancreatic cancer, you could talk to your clinician about whether or not pancreatic screening is an option for you.

Having an alteration in one of the genes on the R208 test may be associated with increased risks of developing other types of cancer. The risks of these are likely to be small and there is no additional screening recommended currently.

Risk reducing breast surgery (risk reducing bilateral mastectomy)

This is the surgical removal of healthy breasts to prevent a cancer developing. This has been shown to reduce the chance of developing breast cancer by 90-99%. It does not remove all the risk, as the surgery cannot remove every breast cell. It is a major operation that can have serious complications, so it requires careful consideration. This is only available to women whose lifetime risk of developing breast cancer exceeds 30%.

Risk reducing removal of the ovaries and fallopian tubes (risk reducing bilateral salpingo-oophorectomy)

This is the surgical removal of healthy ovaries and fallopian tubes to prevent cancer developing, which reduces the risk of ovarian cancer by 95%. There is still a small chance of an ovarian-like cancer developing in the surrounding tissue that is left. This is estimated to be between 2 to 5% in a lifetime. In some circumstances, this may also help to reduce the risk of breast cancer if carried out before the natural menopause. Having ovaries removed will start an immediate menopause. Therefore it may be appropriate to have some form of hormone replacement therapy (HRT) until 50 years of age. HRT may not be recommended for women who have had hormone receptor positive breast cancer.

Is there any medication which can reduce the risk of developing breast cancer?

Taking certain medications for five years has been shown to reduce the risk of breast cancer in women at increased risk. Tamoxifen can be offered prior to the menopause, or Raloxifene and Anastrazole after the menopause. These drugs are associated with side effects. Please ask your clinician if interested, and/or see our separate chemoprevention leaflet.

Symptom awareness

We also recommend breast and ovarian cancer awareness for women, and breast and prostate awareness for men. Your clinician will provide you with the relevant booklets from Macmillan with more information about this. Alternatively, there is more information online at www.macmillan.org.uk. These booklets also include information about lifestyle factors which can help to reduce cancer risk in general.

What screening is available for men with alterations identified through the R208 test?

There is currently no national screening programme for prostate cancer in the UK. This is because it has not been proven that the benefits outweigh the risks. Instead of a national screening programme, there is an informed choice programme called prostate cancer risk management. The PSA test is a blood test to help detect prostate cancer. It measures the level of prostate-specific antigen (PSA) in your blood. This is available to healthy men aged 50 or over, who ask their GP about PSA testing. It aims to give men good information about the pros and cons of the PSA test. 

BRCA2

Given the increased risk, men with a BRCA2 alteration can be referred to a Urologist to discuss the option of prostate screening in more detail. Currently prostate screening involves measuring PSA levels, but may also involve an initial MRI.

BRCA1, PALB2, ATM and CHEK2

The risk of developing prostate cancer is not greatly increased. Therefore, prostate screening is not currently offered to men with these gene alterations, although they could discuss with their GP about prostate cancer risk management.

Are there any options for people with an altered gene who are planning a family?

Many people with an altered gene opt to have children in the usual way. Alternatively, women or men with a BRCA1, BRCA2 or PALB2 gene alteration may have the option of having Pre-implantation Genetic testing (PGT) involves undergoing the fertility treatment in-vitro fertilisation (IVF). PGT has the extra step of genetic testing of the embryos (fertilised eggs). The aim is to only put embryos into the womb which have not inherited the gene alteration. The Genetic Counsellor or Clinical Genetics Doctor can discuss this in more detail with individuals who are keen to consider this option. Testing in pregnancy is theoretically possible, but not often considered for conditions that affect people as adults.

Is there an alternative to genetic testing?

You may decide not to have genetic testing. Whether or not you are tested, you should talk to your clinician about screening options for you and your relatives.

I’ve heard of research studies involving people with a family history of cancer. How can I find out more?

There may be research studies that you are eligible to take part in if you wish. It is important to remember that research studies may not benefit you directly but may help future generations.

How to contact us:

Gates 24A
Brunel building
Southmead Hospital
Westbury-on-trym
Bristol
BS10 5NB

© North Bristol NHS Trust. This edition published March 2023. Review due March 2026. NBT003389

Nerve root blocks and lumbar sympathetic blocks

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Your doctor has requested that you have a nerve root block either to help diagnose the cause of your pain or try to relieve it. 

We hope that the following information will answer some of the questions you may have about this procedure.

What is a nerve root?

Nerve roots exit the spinal cord and divide into nerves that travel to your arms and legs. These nerve roots can become inflamed due to pressure from nearby bone spurs or intervertebral discs. Inflammation of nerve roots may cause pain in the back, neck/arms and/or the legs. A nerve root block provides important information for your doctor and may also provide you with some relief from pain.

Why do I need to have a nerve root block done?

The procedure is designed to prove which nerve is causing your pain by placing temporary numbing medicine over the nerve root of concern. If your pain improves after the injection then that nerve is the most likely cause of your pain. If your pain remains unchanged, then that nerve is probably not the cause of your pain.

What is injected around the nerve root?

The injection is a combination of local anaesthetic (a numbing agent) and steroid (an anti-inflammatory agent). The local anaesthetic works immediately and the steroid begins to work within 2-3 days.

How do I prepare for a nerve root block?

There is no preparation for this procedure; you can continue to eat and drink as normal.

If you are diabetic please inform the doctor before the examination as there is a possibility that your sugar levels will vary after the injection. It is important that you continue to monitor your levels carefully for several days and consult your GP if necessary.

What will happen during the procedure?

You will be shown to a cubicle where you will be asked to undress in private and put on a gown. If you need assistance we can provide it.

You will then be shown into the X-ray room for the examination and introduced to the staff performing the procedure. You will be cared for by a small team including a radiologist/pain physician, radiographer and nurses.

Before the examination begins the radiologist/pain physician will explain what they are going to do and then ask you to sign a consent form.

You will then be asked to lie on your front or back on the X-ray couch. The skin will be cleaned and the doctor will inject a small amount of local anaesthetic under the skin. This stings for a few seconds and the area then goes numb.

The radiologist/pain physician will then direct a very small needle just next to the nerve root using the X-ray machine to guide the needle. Sometimes the needle can touch the nerve itself in which case you may feel a sharp pain going down your leg. This will only last for a second or two. A special dye called contrast medium is then injected around the nerve root. This shows up on the X-ray machine to confirm the needle is in the correct position. When the pain consultant/radiologist is satisfied with the needle position, the pain killing medicine will be injected along the nerve root.

How long will it take?

You will be awake throughout the procedure, which lasts about 15 – 30 minutes.

Will it hurt?

You may feel a little pressure or discomfort, which may travel down the arm/leg, during the injection of the pain killing medicine. This will last for only a few seconds.

Afterwards your leg may feel numb or weak for up to 24 hours. You will be asked to wait for 30 to 60 minutes before going home and you should not drive for the rest of the day. You will need to arrange for someone to take you home. Some people find that their pain feels worse for 2-3 days after the procedure. This is because the steroid can sometimes irritate the nerve. Do not worry if this happens, as it will settle down by itself. 

If your leg becomes numb you may need to stay in hospital overnight.

Are there any risks associated with a nerve root block?

Generally it is a very safe procedure. Potential complications are uncommon and include:

  • Bleeding or haematoma (a bruise under the skin) – this should settle down by itself.
  • Infection – contact your GP if you experience any redness or tenderness at the injection site.
  • An allergic reaction to the contrast dye – please inform the doctor doing the nerve root block if you have any allergies.

Please inform your pain consultant if you take any blood thinning medication such as Warfarin, Clopidogrel, Rivaroxaban, Dipyridamole, Dabigatran. It is very important you contact us PRIOR to attending your procedure. Please note this list is not exhaustive.

Please also inform the pain consultant if you are a diabetic as there is a possibility the steroid may affect your blood sugar levels. It is therefore important you monitor your levels carefully for several days after the procedure and consult your GP if necessary.

The procedure uses X-rays to confirm that the needle is in the correct place. The amount of X-rays used is very small however female patients who are or who may be pregnant should inform the department before attending for 
their appointment.

Finally

We hope this information is helpful. If you have any questions either before, during or after the procedure the staff at the Pain Clinic or X ray department will be happy to answer them.

The telephone number of the X-ray department can be found on your appointment letter.

Additional Information for Pain Clinic patients having a lumbar sympathetic block.

What is Lumbar Sympathetic Block?

There are nerves running either side of the lumbar spine, that control blood supply to the muscles and  skin of the legs. Injecting these nerves with local anaesthetic and/or a drug, may help your pain and improve your mobility.

What will happen during the procedure?

The procedure is done in the same way as a Nerve Root Block, except a dye is not injected.

What will happen after the procedure?

You will be asked to stay for approximately 30-60 minutes in the recovery area/Medirooms.

Your blood pressure, pulse and temperature will be monitored and you may need to lie down for a little while.

You should not drive after this procedure. You will need an escort to take you home and stay with you overnight. 

If your leg becomes numb, you may have to stay in hospital overnight.

You can restart your normal activities the following day.

References

Botwin et al (2002) Fluoroscopically guided lumbar transforaminal epidural steroid injections in degenerative lumbar stenosis: an outcome study. American Journal of Physical Medicine and Rehabilitation 81(12) 898-905

Vad et al (2002) Transforaminal epidural steroid injections in lumbosacral radiculopathy: A prospective randomised study. Spine 27(1) 11-15

Waldman S (2004) Atlas of Interventional Pain. 2nd Edition. Saunders. Philadelphia

NHS Constitution. Information on your rights and responsibilities. Available at www.nhs.uk/aboutnhs/constitution

How to contact us:

Pain Clinic
Gloucester House
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

0117 4147361

PainClinicClinical@nbt.nhs.uk

If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice.