V1 | October 2024
Radioligand Therapy
www.neuroendocrinecancer.org.uk
Neuroendocrine cancer 2024 Registered Charity Number: 1092386
www.neuroendocrinecancer.org.uk
Our bodies are made up of billions of cells, including neuroendocrine cells. In health, neuroendocrine cells help regulate our bodily functions by releasing molecules—substances that circulate throughout the body, such as peptides and hormones. When these cells become malignant—become cancer—their ability to release hormones and peptides can be disrupted. There are a number of ways that neuroendocrine cancers can be treated.
In this guide we talk about treatment with Radioligand Therapy.
Section 1: What is RLT?
What is Radioligand Therapy (RLT)? What is nuclear medicine? What is radiation? How is radiation used in RLT? How is RLT administered?
Section 2: Is it suitable for me? What is the aim of RLT?
How will I know if it’s suitable for me? What tests or scans might I need? What should I know about RLT before agreeing to it? What are the possible side effects? Section 3: RLT treatment and support What happens during and after RLT? Where can I find more information and support?
www.neuroendocrinecancer.org.uk
www.neuroendocrinecancer.org.uk
What is Radioligand Therapy?
Radioligand therapy (RLT) is a treatment that can be used to target certain types of neuroendocrine cancer. It is a targeted form of nuclear medicine that uses radiation to destroy cancer cells while minimising damage to healthy cells.
RLT is also known as Molecular Radiotherapy (MRT) or Peptide Receptor Radionuclide Therapy (PRRT), or by the specific radioligand used.
RLT uses radioactive drugs (radiopharmaceuticals) to directly target neuroendocrine cancer cells, particularly neuroendocrine tumours (NETs).
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Neuroendocrine Tumours (NETs): NETs are well-differentiated cancers, meaning they may retain some of their original features.
However, they can show different rates of growth, from slow (Grade 1) to rapid (Grade 3) – see diagram:
Neuroendocrine Carcinomas (NECs): NECs are poorly differentiated cancers, meaning they have lost many, if not all, of their original features. These cells divide and grow rapidly. NECs do not have the same surface proteins (receptors) that are found in NETs, and therefore, the treatment and management plans differ from those used for NETs. Many NET cells have proteins (receptors) on their surface that can be targeted to aid in diagnosis and treatment. These proteins are called somatostatin receptors (SSTRs).
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What is Nuclear Medicine?
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Nuclear medicine uses small amounts of radioactive materials, known as tracers, to diagnose or treat disease. Doctors use nuclear medicine tests to diagnose, evaluate, and treat a variety of conditions, including neuroendocrine cancer. Nuclear medicine has been used to treat cancer for many years, and radioligand therapy, in one form or another, has been safely used to treat some neuroendocrine tumours since the 1990s.
What is a radioligand?
Radioligands consist of two key parts that are joined together by a chemical or ‘linker’: A targeting molecule or ‘ligand’: This attaches to cells that have specific target proteins (receptors), attracting the radioisotope to the target cell. This allows the radioligand to target cells with receptors anywhere in the body. A radioactive isotope: This is a radioactive molecule that releases radiation to target cells, with the aim of destroying them.
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What is radiation?
The term "radiation" is broad and includes things such as light and radio waves. It refers to energy that moves from one place to another in the form of waves or particles. Radiation occurs naturally but can also be man-made. Most radiation poses no risk to our health. It is present in the earth’s crust, the buildings we live, work, or study in, and the food we produce and eat. There are even naturally occurring radioactive elements within our bodies—in our muscles, bones, and tissues.
However, health risks can arise depending on the type of radiation, the amount we are exposed to, and the duration of exposure.
Select here for support Ionising radiation Ionising radiation has more energy and can disrupt molecules, rather than just making them vibrate. This can damage cells within the body. However, with careful preparation and use, doctors can harness ionising radiation in the form of radioactive material to diagnose, target, and destroy harmful cells, such as cancer cells. This type of radiation is processed and strictly regulated to ensure its safe use in medicine. Non-ionising radiation Non-ionising radiation is lower-energy radiation that makes molecules vibrate and produce heat. For example, this is how microwave ovens work. Other examples include radio waves and visible light.
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How is radiation used in Radioligand Therapy?
Radioactive isotopes are produced by placing isotopes into a nuclear reactor, where they are exposed to radiation. Once they become radioactive, they are stored within the reactor in protective capsules. This is necessary because, once removed from the reactor, the radioactivity begins to decrease or decay. When needed, the radioactive isotopes are taken out of the reactor and undergo a series of safety and quality checks, both before and after they are attached to the targeting molecule (ligand).
Once this process is completed, the radioligands are shipped to the treating hospital for use.
Since the radioactivity starts to decrease from the moment they are removed from the reactor, transportation must happen quickly—typically within 72 hours from the reactor to the patient. Radioligands can be safely transported by air (commercial or cargo), often completing their journey by courier via road transportation to ensure timely delivery.
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How is Radioligand Therapy administered?
Radioligand Therapy is usually administered through an intravenous (IV) infusion. The treatment is given every 8–12 weeks, with a total of 4 doses/therapies.
What is IV or intravenous infusion?
IV (intravenous) infusion is a method of delivering fluids, medicine, nutrition, or blood directly into the bloodstream through a vein. IV therapy uses a tiny plastic tube (cannula or catheter) inserted into a vein using a needle. Once the needle is removed, the cannula remains in place, allowing connection to a plastic tube that links to the medication container (a bag or syringe of medication, sometimes delivered through a pump).
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What is the aim of RLT, and is it right for me?
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Radioligand Therapy cannot cure neuroendocrine cancer, but it can: Reduce the size and number of neuroendocrine tumours Slow down neuroendocrine tumour growth Reduce hormone overproduction, e.g., alleviate carcinoid syndrome or other hormone-related symptoms Provide relief from other neuroendocrine tumour-related symptoms, such as reducing tumour-related pain Improve quality of life Potentially extend life (improve overall survival).
How will I know whether this treatment is suitable for me?
Your specialist team will be able to determine whether this treatment could be used to treat your neuroendocrine cancer, and they should discuss this with you.
RLT is suitable for individuals with neuroendocrine tumours that have treatment- specific receptors.
Even if your specialist team believes you may be a good candidate for RLT, further tests and scans may be required before it can be prescribed.
If you are receiving dialysis or have any issues with urine or faecal incontinence, this should be discussed with your treatment team. These conditions won’t prevent you from having RLT, but special arrangements may need to be made to ensure the safety of both you and your care team during and after treatment. It is also essential to inform your specialist team about any medications, supplements, or other health conditions or concerns you may have.
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Before RLT: Tests and Scans
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What tests or scans might I need to have before RLT?
Radioligand Therapy (RLT) is a targeted therapy, so it is crucial to determine whether your neuroendocrine tumour has the receptors needed for this treatment to be effective. For neuroendocrine tumours (NETs), including pheochromocytomas and paragangliomas, there are two main types of Radioligand Therapy: SSTR receptor radioligand therapy Radioactive iodine mIBG (131I-mIBG) radioligand therapy.
As mentioned previously, many, but not all, NETs have receptors on their cell surfaces that can be used to help diagnose and treat them.
For RLT to be a potential treatment for you, your medical team needs to check whether your tumours have receptors:
For SSTR RLT: an SSTR scan will be offered. For mIBG RLT: you may be offered an mIBG scan.
For those with Grade 2-3 NET - your medical team may also recommend an FDG- PET scan: which uses a radiotracer called fluorodeoxyglucose (FDG). Moderate to high grade NET cancer cells use up more energy than normal tissue (or low grade NETs), so absorb more glucose: they may have fewer or no SST receptors. By having both an SSTR scan and an FDG-PET scan, your medical team can gain a clearer understanding of how your NET may behave - and whether RLT is an appropriate treatment for you. If you have not already had a nuclear medicine scan to check for this—or have not had a recent one (within the previous 2–3 months)—this will be discussed with you. With your consent, the appropriate scan will be arranged. Other tests may include a physical assessment and blood tests to evaluate your overall health and ability for self-care. Blood tests will usually include a Full Blood Count, along with kidney and liver function tests. Tumour markers, such as Chromogranin A, may also be checked. If you have a functioning NET (one that produces excessive hormones or peptides), you may also have blood and/or urine tests to check your hormone levels.
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Full Blood Count
Blood cells are produced in the bone marrow, the soft, spongy material in the centre of our bones. There are three main groups of blood cells: red blood cells, white blood cells, and platelets. Red blood cells contain a protein called haemoglobin, which carries oxygen from the lungs to all parts of the body. White blood cells are part of the body’s immune system; they help the body fight infection and other diseases. Platelets help form blood clots to slow or stop bleeding and to aid in wound healing. Radioligand Therapy (RLT) can affect the bone marrow, which may lead to a temporary reduction in blood cells. Therefore, it is important to check blood cell levels before and after each treatment: Low red blood cell counts can cause anaemia. Low white blood cell counts may increase your risk of infection. Low platelet counts can lead to problems with blood clotting, resulting in bruising or bleeding. Very rarely, in less than 3% (3 in 100 people), damage to blood cells can be permanent, potentially leading to blood disorders, including blood cancer (e.g., leukaemia).
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Liver Blood Tests
Liver blood tests measure the enzymes, proteins, and other substances produced by the liver. This provides your specialist team with information about the overall health of your liver and how well it is functioning. It is not uncommon for individuals with neuroendocrine tumours in their liver to have mildly elevated liver enzymes; however, they usually have normal albumin and bilirubin levels. RLT can also affect liver blood tests. There may be a temporary rise in liver enzymes, but albumin and bilirubin typically remain within the normal range. This temporary increase in enzymes is thought to be due to an inflammatory response to treatment and usually resolves without intervention or alteration in liver function. Very rarely, if healthy liver cells are damaged by treatment, liver enzymes can rise sharply, and overall liver function may be affected, pushing albumin and bilirubin levels out of the normal range. Your specialist team will monitor for this and will take action on any changes that require intervention to correct and/or manage the situation.
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Kidney (Renal) Blood Tests
Kidney blood tests are used to assess the overall health of the kidneys and how well they are functioning. Creatinine (Creat): This is a waste product released by muscles that is removed from the body by the kidneys through urine. Urea: Another waste product filtered through the kidneys and excreted in urine. Estimated Glomerular Filtration Rate (eGFR): This value provides an estimate of how well the kidneys are working to filter out waste products such as creatinine and urea. Kidney blood tests may also measure the levels of certain chemicals and minerals in the blood, such as sodium, potassium, calcium, phosphate, and magnesium. Abnormal levels of these substances can occur for various reasons, one of which is reduced kidney function. Since RLT can affect your kidneys' ability to function, it is important to check kidney health before any decision is made regarding RLT. If there are concerns about how well your kidneys are working—or how RLT might affect their function after treatment—such as a low eGFR in your kidney blood tests, you may need to undergo a nuclear medicine test called a GFR test.
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GFR Test
The GFR test provides an accurate measure of overall kidney function, as opposed to the estimated value (eGFR). For this test, a very small amount of radioactive tracer is injected into a vein in your arm. One or more blood samples will then be taken from a different vein over the next few hours, with the last sample possibly being taken five hours or more after the injection. The radioactivity from the tracer quickly dissipates, and you should be able to continue all your normal activities unless advised otherwise. The results of your GFR test will be reviewed by a specialist doctor, who will issue a report. Your medical team will inform you of the results and whether they will impact your care.
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I have Carcinoid Heart Disease—Can I Still Be Considered for RLT?
If you have Carcinoid Syndrome, your medical team may check for any evidence of Carcinoid Heart Disease (CHD) through a physical examination, blood serotonin levels, a urine 5-HIAA test, a blood test for NT-ProBNP, and/or an echocardiogram. If you are known to have Carcinoid Heart Disease, the severity and its effects on you will need to be assessed to ensure that Radioligand Therapy (RLT) is safe for you. NT-ProBNP is a substance released from the walls of the heart when they are stretched from working harder than normal. This can sometimes be a natural consequence of aging; other times, it may indicate that something is affecting the heart's ability to function normally, such as CHD, which impacts the heart valves. Please Note: Other factors, including being over 70 years old and having an eGFR of less than 60 ml/min, can increase NT-ProBNP levels. Certain medications can also lower it. An echocardiogram, commonly referred to as an "echo," is an ultrasound scan of the heart that examines its structures, including the walls and valves. It also assesses how blood flows through the main arteries and veins of the heart and evaluates the function of your heart valves. Having CHD will not prevent you from undergoing RLT; however, your medical team needs to understand the severity of your condition to determine whether further intervention is required before RLT. Additionally, they will prepare appropriate fluid administration during treatment to prevent fluid overload.
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Fluid overload can occur if fluids are administered in high volumes and/or too quickly, which can raise your blood pressure and place strain on both your heart and kidneys. This risk can be mitigated by either reducing the volume of fluid given or slowing the rate at which it is administered. RLT, as mentioned on page 8, is administered via intravenous infusion but involves a relatively small amount of fluid. However, during treatment, you will receive an IV infusion alongside RLT. This infusion will consist of a solution of amino acids, which is intended to help protect your kidneys. It will begin approximately 30 minutes before your RLT infusion, continue throughout your treatment, and persist for at least three hours after the RLT infusion has been completed. The duration of this infusion can be extended as necessary to maintain safety and prevent fluid overload.
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Are There Any Other Side Effects I Need to Be Aware Of?
As explained in the previous section, Radioligand Therapy (RLT) can affect parts of your body other than the tumour. In particular, it can impact your full blood count (bone marrow), liver, and kidneys; however, these will all be carefully monitored throughout the treatment.
Blood Count
Anaemia can occur, which may worsen fatigue if it doesn’t resolve or is not corrected. A temporary reduction in platelets may also happen; however, the effect on white blood cells is usually less significant than that seen with other anti- cancer therapies, such as chemotherapy, and neutropenia is uncommon. Very rarely, in less than 3% (3 in 100 people), damage to blood cells can be permanent, potentially leading to blood disorders, including blood cancer (e.g., leukaemia).
Altered Liver Function
Your liver function may be temporarily affected by RLT due to an inflammatory response. This will be monitored before and after treatment. In clinical studies, less than 1% (1 in 100) of people with neuroendocrine tumours experienced long- term or severely reduced liver function because of RLT.
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Reduced Kidney Function
This may be temporary or permanent. Amino acid infusion is used during treatment to reduce this risk. It is also important to stay well-hydrated before, on the day of, and after your treatment.
RLT May Also Cause:
Nausea: RLT can make you feel sick, typically only on the day of the treatment. This may be more related to the amino acid infusion than the RLT itself. You will be offered anti-sickness medication before the treatment starts to help prevent this, along with a prescription to take home if needed. Pain: You may experience increased pain due to inflammation of the tumour in response to being targeted. This usually resolves within 72 hours after treatment. You may be prescribed a low dose of a steroid (anti-inflammatory) medication to help reduce this risk. During treatment, it may be beneficial to discuss with your specialist team about increasing the dose, frequency, and/or type of pain relief to manage this. Some patients find that their pain eases during (and after) treatment.
For further information on this subject, you may wish to visit section 2 of our Virtual Patient Handbook by scanning the QR code below:
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Temporary Worsening of Symptoms
Radioligand Therapy (RLT) may temporarily exacerbate your everyday symptoms. This usually settles within 24 to 48 hours and is part of the body’s normal inflammatory response to the treatment. If you have a hormone-related syndrome that may develop into a ‘crisis,’ there may be a discussion about additional precautions to prevent or reduce the risk of this during treatment.
Crisis Alert Cards
We provide free Carcinoid Crisis Alert Cards that include crisis protocol information and guideline links.
Healthcare professional guidance is available at: www.ukinets.org
Scan the QR code to order a Crisis Alert Card
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If you have a phaeochromocytoma or paraganglioma, precautions may also need to be considered to avoid a hormone-related crisis. Please discuss this with your specialist and treatment team. As with Carcinoid Crisis, UKINETs guidance can help with planning care.
Hair Thinning
RLT may cause temporary hair thinning. You may have already experienced this if you have been on a somatostatin analogue (Lanreotide or Octreotide). Hair thinning usually lessens, and lost hair can be replaced by new growth once RLT treatment is completed.
Fatigue
Fatigue can be challenging to deal with—especially if you are already experiencing fatigue due to your neuroendocrine tumour (NET). However, some people have reported improvements between treatments and after RLT has concluded. Not only can treatment-related fatigue reduce, but pre-treatment fatigue may also improve once RLT has finished, although this may take some time to be fully appreciated.
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Mindfulness Techniques for Managing Fatigue
Some individuals find that using mindfulness techniques can help manage fatigue. Our ‘Sleep’ web guide may also offer useful hints and tips to assist you.
Scan the QR code to read our sleep guide
Additionally, our “Monday Mindfulness” videos, recorded in 2020 by Peter, a Mindfulness Coach and Practitioner at RareMinds, are available on our YouTube channel
Scan the QR code to visit our YouTube channel
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How Might RLT Affect Me?
Radioligand Therapy (RLT) involves the use of radiation, which can lead to some temporary changes in daily life that should be considered before agreeing to treatment. The duration of these changes will depend on the advice provided by your treatment team. They will adhere to national and local safety guidelines while using their experience and expertise to tailor their recommendations to your specific treatment, safety, personal situation, and needs.
Important Notes:
Pregnancy: RLT is not administered during pregnancy, as it may harm a developing baby. It is crucial to inform your medical team if you are, or suspect you may be, pregnant before starting any treatment. You may be asked to provide a urine sample to check for this before each RLT dose. Additionally, you will be advised to avoid pregnancy during treatment and for up to one year afterwards. Breastfeeding: If you are breastfeeding, you will be advised to discontinue this once you begin treatment, and for a minimum of three months after your last dose.
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What Else May Be Helpful to Know Before Making a Decision About RLT?
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Pre-Treatment Considerations:
Medications:
If you already receive somatostatin analogues (Lanreotide or Octreotide), your team may want to adjust the scheduling to fit with the recommended timing of RLT. If you have Carcinoid Syndrome or are at risk of other hormone-related crises during treatment, your team may consider adding medications at the time of RLT to reduce the risk of this occurring. For example: Carcinoid crisis prevention measures Adrenal crisis precautions (may be considered in adrenal-based NET) Following RLT, you will be advised to avoid certain types of close contact with others for between 4 and 14 days after each treatment. Arrangements may need to be made before treatment to facilitate this. For example: You may be advised against sleeping in the same bed as someone else for 7 to 14 days after each treatment. You may be advised to avoid close contact with pregnant women and/or young children for a similar period. You may be advised against using certain types of travel, for example, public transport, for a number of days after each treatment. Check with your specialist team about arrangements if you are the main carer for someone else or a pet. Check with your specialist team about returning to work or your place of study.
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Pre-Treatment Considerations:
After each dose of RLT, radiation may be detectable in body fluids, such as urine and faeces, for up to 30 days. You may be advised to: Use the toilet in a seated position, even for men, and use toilet paper each time. Double-flush the toilet with the lid down after you have used it. Wash your hands every time you use the toilet. Sinks should be rinsed before and after hand-washing. Use a separate toilet from the rest of your household, if you have access to more than one toilet where you live. If you need toileting assistance, your carer should wear disposable gloves, especially for the first few days after treatment. This applies when cleaning up any vomit, blood, urine, or faeces. RLT may affect fertility and intimate relationships. Sexual activity should be avoided following RLT for up to 7 days. This is because, as mentioned above, there is a possibility that traces of radiation may be present in body fluids during and after treatment; these fluids include sperm, vaginal secretions, and blood. The radiation administered during RLT may be absorbed by the testes and ovaries, which can have a temporary or permanent impact on your ability to have children. Talk to your medical team about fertility-preserving treatment before agreeing to RLT. As previously mentioned, RLT during pregnancy is to be avoided. Therefore, even though reduced fertility is a potential risk of RLT, you will be advised against pregnancy during RLT and for up to a year after it has completed. Effective barrier method contraception is recommended during treatment and for up to 6-12 months after treatment is completed. Even if pregnancy is not a consideration for you, using barrier method contraception during sexual contact is advised during and for at least 3 months after RLT treatment.
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Pre-Treatment considerations:
Work and/or study
RLT can increase symptoms temporarily – including fatigue. This may affect your ability to continue to work or study during treatment. While this may not affect everyone having RLT, it can affect others. It may help to talk with your medical team and your employers or study leads about this – so that arrangements can be made should you need to take some time off.
Please note: even if you feel ok after RLT - you may need some time off - due to radiation and contact restrictions: confirm time needed with your treating team.
Diet and Nutrition
There is no special diet to follow before, during or after RLT. But as with any other treatment, a healthy well-balanced nutritional intake, and keeping well hydrated, during treatment, can minimise most side-effects and promote recovery and well- being.
Exercise and Activity
Rest and sleep is important during treatment, especially if fatigue is an issue. However, research has shown that staying active can also help.
If you usually enjoy team activities or visiting your local swimming pool - talk with your team about what you can and can’t do during RLT – to work out what type and level of activity and/or contact is suitable for you.
There may be times during RLT when certain activities may be best avoided.
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What Happens on the Day of RLT and Afterwards?
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What Happens on the Day and Afterwards?
Each hospital will have its own arrangements for administering and following up on Radioligand Therapy (RLT). However, they will also adhere to recommended safety guidelines and protocols. Some hospitals will arrange RLT as a day-case procedure, while others may admit you for a day or two; this decision will be based on hospital policies and individual case assessments.
All tests and their results will have been reviewed to ensure that it is safe to proceed with treatment.
The radioligand will be checked to ensure it is safe to administer.
On the Day of Treatment
Once you have been checked to ensure you are well enough to proceed with treatment, your consent for the treatment should be re-confirmed.
You may be offered an anti-sickness medication, usually about half an hour before treatment starts.
You may have two cannulas inserted: one for the amino acid infusion (to protect your kidneys) and one for the RLT infusion (the active treatment). The amino acid infusion will be started first and will usually run for at least 30 minutes before the RLT infusion begins.
The RLT infusion will run for 30 to 45 minutes.
The amino acid infusion will continue during the RLT administration and will also run for three to eight hours after the RLT infusion is completed (the duration may depend on your kidney function and whether you have Carcinoid Heart Disease, or not).
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You will be able to eat and drink during treatment but may need assistance with going to the toilet because of the infusions attached to you.
You will be monitored throughout the day for any symptoms and to ensure you are okay.
Once both infusions have been completed, your treating team will recheck you, and the cannulas will be removed. The team will also assess your radiation status and provide advice on self-care for when you go home. You may be given written information to refer to for guidance. Within 72 hours of completing treatment, you may need to have a further nuclear medicine scan. This is to check for ‘uptake’ and to ensure that the radioligand therapy has reached the target cells identified in your pre-treatment scan. Your treating team will advise you on any precautions you will need to take following RLT. This includes advice on toileting, close contact with others (including sexual activity), and returning to work or study. You may also be advised to wash any laundry separately from that of other members of your household for one week. This includes sheets, towels, and clothing, especially any items that may have body fluids, e.g., sweat or urine, on them.
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Full care advice should be made available to you in a format you can understand.
Your medical team will advise you on post-treatment blood tests and will work with you and your local care team (if different) to arrange any post-treatment tests and scans you may need. You will also be given contact details for any post-treatment questions you may have, including a point of contact to report any side effects or changes in your well-being. Although you will have had a scan following RLT to check for uptake of the treatment, this scan is not intended to determine whether the treatment has worked. Scans to check for treatment response will usually be scheduled 3 to 6 months after completion of all four RLT treatments (or two if being re-treated). RLT is not a quick treatment; the true benefit may be felt in improvement in symptoms before any response is seen on scans. Your medical team will take great care in the timing and review of post-treatment scans, as sometimes, only occasionally, something called pseudo-progression may be observed. Pseudo-progression is defined as an initial increase in tumour growth that may be seen on scans, often due to treatment triggering an inflammatory response. It can occur in the first few weeks to months after treatment and will improve, with shrinkage back to pre-treatment size or smaller. It is NOT true tumour progression, but careful assessment of your scans is important to rule this out. RLT is administered to slow down or stop any disease that is progressing (growing); therefore, the response may be seen as stability (no further growth or new lesions) or in disease shrinkage (tumours may decrease in size or even become undetectable by scans). This may take time to be visible on scans; for example, while stability may be more readily observed, a reduction in tumour size may take up to 18 months after treatment has been completed to be clearly identified on scans.
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FAQs: Questions You May Have or Want to Ask If Your Doctor/Specialist Team Suggests RLT for You
Why do you think this is a suitable treatment for me?
Do I need to have any further tests or scans before starting treatment? If yes, what would I need and when? Is treatment needed straight away, or can it be planned to happen in the next few weeks or months? Where would I receive this treatment? Would I need to travel or go elsewhere for this treatment?
What is the aim of this treatment? What outcomes do you expect or hope for?
What do you see as the possible benefits of having this treatment for me?
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What are the possible side effects?
Are there any long-term consequences? If yes, what are they?
How might it affect my daily life (e.g., work, study, hobbies)?
Will I need to avoid certain activities before, during, or after treatment (e.g., contact with others)? How might it affect my personal or intimate life (e.g., sex, fertility, pregnancy, social contact, mood)?
When would I need to make a decision about treatment?
Who can I contact if I have any questions?
What happens if I decide not to have this treatment? What are the alternatives?
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Support and Further Information
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Where Can I Find Support and/or More Information?
There are several resources available to you, including your specialist and nuclear medicine treatment teams. If you have a clinical nurse specialist or cancer support worker, they can provide support and answer any questions you may have or signpost you to further resources. Neuroendocrine Cancer UK This is a UK-wide charity solely dedicated to providing support and information to those affected by neuroendocrine cancer. Information and Support Helpline: Open Tuesday to Thursday, 10 am - 4 pm Phone: 0800 434 6476 Our support services include Peer Support Groups, One-to-One Counselling, and Group Therapy Programmes. Contact Us Page: www.neuroendocrinecancer.org.uk/contact-us Website: www.neuroendocrinecancer.org.uk
Radiation Information:
The International Atomic Energy Agency (IAEA) provides information on radiation and its use in medicine
Nuclear Medicine Resources:
Nuclear Medicine Europe
British Nuclear Medicine Society Patient Information
National Institute of Biomedical Imaging and Bioengineering (US)
RadiologyInfo Organisation
N euroendocrine Cancer UK was co-founded more than 20 years ago by people affected by neuroendocrine cancer, for people affected by neuroendocrine cancer. Our mission of providing accurate, reliable information and support continues to this day. At Neuroendocrine Cancer UK, we are here to help from diagnosis, through treatment, and beyond.
Please visit www.neuroendocrinecancer.org.uk for up-to-date information relevant to all those affected by neuroendocrine cancer.
DISCLAIMER: Neuroendocrine Cancer UK is not a clinical or healthcare service; it is an information and support organisation. This booklet is for informational or educational purposes only and does not substitute for professional medical advice or consultations with healthcare professionals specialising in neuroendocrine cancer. We strongly recommend that you always seek the advice of your doctor or another qualified healthcare provider with any questions you may have regarding a medical condition or treatment, including dietary changes, before undertaking a new healthcare regimen or altering your current one. At Neuroendocrine Cancer UK, we are dedicated to providing evidence-based, expert-informed, accurate, and appropriate information to individuals and families affected by neuroendocrine cancer. However, while this booklet may help inform consultations and discussions with your medical team, we advise that you do not disregard professional medical advice or delay seeking guidance because of something you may have read in this booklet.
Neuroendocrine cancer 2024 Registered Charity Number: 1092386
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