Types of Tests & Getting Your Results
Before and after you’re diagnosed, tests become a regular part of your life.
Neuroendocrine Cancer is often small, starting out the size of a grain of sand and often not visible to the most accurate scans until it gets to about half a centimetre across or the size of a pea. It can occur in various parts of your body and spread to different places too, so finding them and identifying where they started can, on occasion, be difficult.
Because of this, you may well have a number of tests before your diagnosis is confirmed – including specialist tests to ensure the evidence is conclusive. Once you have a diagnosis, some of the tests you have undergone will be used to monitor your health and the effects of your treatment.
In this section we’ve listed the main tests used for diagnosing and monitoring.
You may have other tests as well, either to prepare you for treatments or to investigate the cause of an unexpected problem. Whilst many of these tests will be available at your local hospital – some blood and urine samples might need to be sent to a specialist lab or you might need to travel to a specialist centre to undergo others – such as certain scans.
The most important thing to remember is that if you have any questions or concerns about tests, ASK! It’s important to chat to your care team about anything that’s on your mind.
Types of Test
Various blood tests are used to help diagnose Neuroendocrine Cancer, monitor your health and to see how you’re responding to treatment Some can be done at GP surgeries, others need to be done in hospitals or specialist treatment centres. Your care team will let you know what to expect before any blood test.
Please note that the laboratory tests are not 100% – there are other conditions that may cause unusual results or alterations – also your Neuroendocrine Cancer may not cause any irregularities in your blood or urine.
However, they are incredibly useful, in combination with other tests, to lead to an accurate diagnosis – and, if abnormal – can be useful as a monitoring tool over time and during/after treatment.
Full blood count – may detect signs of anaemia, infection or inflammation, bleeding or clotting disorders.
B12 + serum Iron – may detect B12 or iron deficiencies – which can lead to anaemia
Liver and kidney function – to check how well your liver and kidneys are working. They will also check for certain minerals normally found in the body that help maintain normal body function – such as sodium, potassium and chloride.
Thyroid function – to check for under or over active thyroid function
Calcium – to screen for, diagnose, and monitor a range of conditions relating to the bones, heart, nerves, kidneys, and teeth. It can also give information about how well your parathyroid or thyroid glands are working. Abnormalities may also be seen in people who have malabsorption problems.
Malabsorption is a disorder that occurs when people are unable to absorb nutrients from their diets, such as carbohydrates, fats, minerals, proteins, or vitamins.
Glucose – measures the amount of sugar, or glucose, in your blood (we need a certain amount of sugar/glucose, as the body uses this for energy). Raised levels may indicate diabetes, but there are also other causes including glucagonomas and certain drugs like steroids and Everolimus.
HbA1c can show your average blood glucose (sugar) levels for the last two to three months – and can help to diagnose and monitor diabetes.
Cholesterol is a fatty substance mostly created by the liver from the fatty foods in your diet and is vital for the normal functioning of the body.
CRP is produced by the liver and if there is a higher concentration of CRP than usual, it’s a sign of inflammation in your body
Chromogranin A is a protein found in and released from neuroendocrine cells and can be used to help diagnose Neuroendocrine Cancer. However levels can be elevated in both liver and kidney problems – and certain medications may also cause abnormalities.
Urinary 5-HIAA (5-hydroxyindoleacetic acid) 5-HIAA is a breakdown product of a hormone called serotonin which is excreted from the body in urine. It is an indirect way to measure how much serotonin is in the body. Serotonin can be released by Neuroendocrine Cancer cells – especially in those with Carcinoid Syndrome.
Blood serotonin test may be used used to check for serotonin-producing tumors (like Neuroendocrine Cancers) Blood serotonin levels will not necessarily reflect the levels of serotonin in your brain.
Fasting Gut Hormone Profile – to check the levels of certain hormones produced by the gut (when you have not eaten or drunk anything). It is primarily used in diagnosing and monitoring Neuroendocrine Cancers of the Pancreas or Duodenum. However, it may checked during diagnosis to help identify a primary site that may not be obvious on initial scans/investigations.
Vitamin and trace element/mineral check – specifically Vitamin A, D, E and K, as well as magnesium, alongside formal dietetic assessment is advised at baseline/point of diagnosis and as clinically indicated in follow up – as Neuroendocrine Cancer can affect nutritional intake and the body’s ability to absorb and use nutrition (food). Research shows that up to 40% of those with a Neuroendocrine Cancer may be at risk or show signs of malnutrition
Malnutrition is the lack of proper nutrition, caused by not having enough to eat, not eating enough of the right things, or your body being unable to use the food that you do eat.
NT-Pro-BNP is measured as a simple blood test to help diagnose and monitor heart failure – and is used in Neuroendocrine Cancer care to screen for evidence of Carcinoid Heart Disease (CHD) . If raised you may be offered a scan of your heart to check the valves of your heart (which can be affected by CHD).
A scope is usually a long, thin, flexible tube that has a light and camera at one end, that transmits images of the inside of your body to a screen, so that your doctor can check for any abnormalities:
Scopes may also be used to take samples of abnormal changes and / or deliver treatment.
Bronchoscope looks inside the lungs and airways.
Endobronchial ultrasound (EBUS) looks inside the lungs and airways.
Endoscopic ultrasound (EUS) looks at the duodenum and pancreas.
Gastroscope looks inside the oesophagus, stomach and duodenum.
Colonoscope looks inside the large intestine (colon / large bowel).
Sigmoidoscopy looks inside the lower large intestine.
Rectal endoscopic ultrasound looks at the lower part of the large bowel.
Video Capsule Endoscopy looks at the inside of your small bowel: you swallow a capsule that contains a small disposable camera, which takes thousands of pictures as it travels along your gut. These pictures are captured and stored on a data recorder that you wear on your waist. The capsule itself, does not need to be retrieved and is excreted from the body when you poo.
ERCP (Endoscopic Retrograde CholangioPancreatography) combines endoscopy and a scan to examine and/or treat conditions of the biliary system (liver, gall bladder, pancreas, pancreatic and bile ducts).
PTC (Percutaneous Transhepatic Cholangiography) a procedure carried out in the scanning department (radiology) to examine and/or treat conditions of the biliary system (liver, gall bladder, pancreas, pancreatic and bile ducts).
Cystoscopy looks inside the bladder by passing a thin camera called a cystoscope through the urethra (the tube that carries pee out of the body). This procedure may also be used to insert stents into a blocked or narrowed ureter (the tubes that carry pee from the kidneys to the bladder).
Colposcopy is a way to check a woman’s cervix, vagina, or vulva for cancer or abnormal areas that can become cancer.
Hysteroscopy is used to examine the inside of the womb (uterus). A scope is passed through the vagina and cervix, into the uterus (so no incision is required).
USS (UltraSound Scan) uses high -frequency sound waves to create an image of part of the inside of the body. Gel is spread on the area to be scanned and a handheld probe is then placed and moved across the area to capture real-time images – it is the type of scan used in pregnant women.
CT /CAT scan ( Computerised Tomography / Computerised Axial Tomography) uses X-rays and a computer to create detailed images of the inside of the body.
CT enterolysis (a CT examination of the small bowel) is a non-invasive way of looking inside your small bowel and abdomen, using special x-ray equipment and a computer.
MRI (Magnetic Resonance Imaging) uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.
Nuclear Medicine scans :
There are 2 specific types of Neuroendocrine Cancer cells – well-differentiated (NET) and poorly-differentiated (NEC).
NET cells have receptors on their surface that attract a drug called Octreotide. When this drug is injected into the body it will travel round and latch on to these receptors. However Octreotide cannot be seen on scans, so it is mixed with a mildly radioactive particle – called an isotope or tracer – that will then make tumour sites visible when an Octreotide or Gallium scanner is used.
Octreotide scan – to diagnose and monitor Neuroendocrine Tumours.
Gallium-Dotatate PET/CT – also used to diagnose and monitor Neuroendocrine Tumours – it is more sensitive than an Octreotide scan, so is useful in identifying smaller and possibly more sites of disease than might be seen on Octreotide images – giving a more accurate picture of the site and extent of disease.
MiBG scan (iodine-123 meta-iodobenzylguanidine scan) – is used in certain types of Neuroendocrine Cancer that might be more sensitive to MiBG, such as pheochromocytoma and paragangliomas.
FDG-PET scan (FluoroDeoxyGlucose-Positron Emission Tomography) – may be more useful in NEC. These cancers often do not have Octreotide receptors on their surface – and the cells themselves tend to grow more rapidly than NET cells. This rapid activity burns up more energy – so by using glucose (sugar) as the basis for concentrating tracer to a specific site – FDG-PET scans can identify areas where poorly-differentiated Neuroendocrine Cancers are.
Occasionally Neuroendocrine Cancers can have a combination of cell changes and activity – so both Octreotide based imaging and FDG-PET may be used to get a combined and more accurate picture of the sites and extent of disease.
Bone scan – shows up changes or abnormalities in the bones – including breaks (fractures), osteoporosis and cancer.
ECG (ElectroCardioGram) – is a simple test that can be used to check your heart’s rhythm and electrical activity.
Echocardiogram – is a type of US scan used to look at the structure of the heart , including the heart valves that help maintain blood flow through the heart, and nearby blood vessels. It can check to see if heart valves are opening and closing properly. This opening and closing can be affected by Carcinoid Heart Disease.
Cardiopulmonary Exercise Test (CPEX or CPET) – may be undertaken before surgery or certain treatments, if there is concern about your heart and / or lung function, to ensure you are ‘fit’ enough for the planned treatment.
To confirm the diagnosis of Neuroendocrine Cancer your care team might want to take a small piece of tissue, a collection of cells or some fluid from your tumour so it can be examined under a microscope for the presence of cancer.
Why is it done?
Studying tissue under a microscope is often the only way to be absolutely sure of a cancer diagnosis. It can give clues about where a cancer started, what kind of cancer cells exist and how quickly they are multiplying. This knowledge can help doctors to recommend the best treatment.
There are various ways of taking tissue samples – these include include biopsy, VATS, FNAs and BALs.
Biopsy: A biopsy is a medical procedure that involves taking a small sample of tissue so it can be examined under a microscope A tissue sample can be taken from almost anywhere on or in your body, including the skin, organs and other structures.
The term “biopsy” is often used to refer to both the act of taking the sample and the tissue sample itself.
A VATS (video-assisted thorascopic surgery) is a surgical procedure used in the chest and lungs.
VATS uses a special instrument called a thoracoscope. This is a thin, tube-like instrument which shines light from the end inserted into the patient. It also transmits images back to an eyepiece or video display so the surgeon can see into the chest cavity. It is a type of ‘keyhole’ surgery where only very small cuts (incisions) are made in the chest wall near the ribs The surgeon inserts the thoracoscope through one incision and special surgical instruments into the other incisions These instruments can be used to remove a sample of the tissue to be examined Once the surgery has nished, the instruments are removed and the incisions are closed, usually with stitches. These samples can then be looked at under a microscope.
A FNA ( Fine-needle aspiration) is another type of biopsy but may involve fewer cells being taken. A very thin, hollow needle is gently inserted through the skin into the lump or affected organ below. Often there is a syringe attached to the needle The doctor can use the syringe to help ‘suck’ some of the cells into the needle by gently pulling on the plunger. Usually, the test can be done without the need to make a cut in the skin or via an endoscope.
If the lump being tested is very small it might be necessary to use a scanning machine to help guide the needle to the right place. This may be done by an ultrasound scan, endoscope or CT scan.
A BAL (bronchoalveolar lavage) is used to try to obtain cells from your lungs. It’s done via a bronchoscopy (an endoscopy to look inside your lungs). Fluid is squirted into the speci c part of the lung to be assessed and then recollected for examination under a microscope.
Getting Your Results
Finding out if you have Neuroendocrine Cancer, how it’s behaving over time or whether treatment is working can be stressful, especially if you’ve had to wait a while for results. But planning ahead for results day can help you prepare.
As much as we’d all like test results straight after a test, it takes time. As a rough guide:
Blood test results can take between one day and eight weeks to come back
Scan reports can take one to three weeks
The results of a biopsy can take up to three weeks to come back
Your care team will give you a better idea of exact times for your results.
As soon as your scan and/or histology results are available, your “NET” care team will then review them at a specialist meeting and consider which next steps are to be taken – this could be starting a new treatment or ongoing monitoring. This usually occurs before you have a results appointment with your consultant to discuss what’s been discovered, so that you can also talk through all options.
We know that listening to and trying to understand difficult information can be difficult, especially if you’re feeling nervous or anxious. And it can be hard to think of the questions you may want to ask, whilst trying to make sense of what you may have been told. But hopefully the following suggestions might help you to get more out of your consultation:
- Prepare a list of questions you might want to ask – this can help to you remember what you wanted to ask. If you are finding it difficult to ask these questions you can hand them to your doctor or nurse – and if you don’t feel able to deal with them at the time, you can ask to go through them later
- Take someone with you to your appointment to help you remember what’s said and to ask questions with you. If that’s not possible, you can always ask your specialist nurse to come into the consultation with you
- Ask if your consultant is happy for you to record the conversation on your phone, or recording device, so you can listen back later to check you’ve understood and haven’t forgotten anything. If using your phone, make sure you download an app beforehand if your phone doesn’t have a record function
- If any medical language confuses you, ask for a simple explanation. Your doctors want you to understand what’s happening, and may use jargon without even realising they’re doing it
- Ask for written information and for a copy of any letters that your “NET” specialists are sending to your GP or care team
- If you have a Clinical Nurse Specialist – keep in touch. Use them as a sounding board for concerns, to answer questions and / or explain anything you’re having difficulty with
- Remember that you can always call back after your appointment to clarify anything you’ve not understood. It’s your health, and you’re the boss.
Questions you may want to ask about your results
- Where is it? Has it spread ?
- Will I need to have any more tests?
- What grade is it?
- What stage?
- What does this mean for me ?
- Who will be involved and who will lead my care? Will I need to be referred elsewhere?
- How is it best treated?
- Do I need treatment straight away?
- If you have already had treatment – you might want to ask how well it has worked and what the next steps are ?
- Have you any written information I can take home with me?
- What can I expect from this diagnosis – what effect might this have on my health?
- Who is my main point of contact? Who can I call with any questions?
- Will I have a clinical nurse specialist?
- What other support is available to me / my loved ones?
Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.
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