Supporting the

Neuroendocrine Cancer Community

Potential Side Effects

of Treatment

Chemotherapy is a cancer treatment where medicine is used to kill cancer cells.

Targeted Molecular Therapies are drugs or other substances that work against cancer by interfering with specific molecules that are involved in the growth, progression, and spread of cancer.

Both treatments can also have an effect on healthy cells – which may lead to complications such as:

  • Fatigue – may be due to o  possible anaemia, the increased energy requirement your body needs to deal with repair and recovery or simply the time it takes. For example, these treatments can require a more regular attendance at hospital for several weeks or months (the appointment itself may only take minutes, but unless you live nearby and / or have your own transport, each session can involve a whole day out).
  • Bone marrow suppression – these treatments can have an effect on how well the bone marrow continues to produce blood cells. We need healthy blood cells to deliver oxygen and nutrition around our body, help fight infection and also repair damage and prevent bleeding. If bone marrow production of cells is reduced this can lead to anaemia, reduced immunity, delayed healing and bruising/bleeding.
  • Altered liver or kidney function – both the liver and kidneys are involved in the regulation , filtering and elimination of waste products in our bodies, including products within the bloodstream. Substances from damaged tumour cells and the breakdown of treatment products, once they have done their job, need to be eliminated from the body – and the liver and kidneys are vital in this. However, sometimes these substances can cause damage to healthy liver and kidney cells – leading to reduced function. NB some chemotherapy drugs may also lead to a change in urine colour and / or odour.
  • Nausea/vomiting – sore mouth and /or altered taste and appetite – the lining of our gut, from our mouth to our anus is made up of cells that are constantly renewing and replacing themselves – certain treatments may see these rapidly dividing and changing cells as no different to cancer cells – which can lead to mouth ulcers and /or nausea/vomiting.
  • Diarrhoea / constipation – the effect mentioned above can also alter how the bowel works.
  • Dose restrictions – if you have previous been treated with radiation and / or chemotherapy – your specialist team will need to consider whether these previous treatments will affect planned treatment. Some drugs may have a lifetime dose limit, other previous treatments may increase or reduce effectiveness of planned care.
  • Fertility – depending on the type of treatment fertility may be affected.
  • Pain / inflammatory response – the body may see treatment as an injury. The natural response to injury is inflammation – caused by a rush of protective and repair factors to the site of harm. The tumour doesn’t want to be killed, but as its cells are attacked, it may release certain substances that cause inflammation (swelling) – which can lead to discomfort and / or pain.

Rarely, a more severe reaction may be experienced as tumour cells are damaged and die – this sudden destruction can cause the release of certain chemicals into the bloodstream, that the kidneys cannot get rid of as fast as they’d like – this is called Tumour Lysis Syndrome. Typically, onset is within 1-5 days of the procedure or chemotherapy and severity can range from a few abnormal blood results to the other extreme, which may include renal failure and cardiac disturbances (heart problems).

  • Hair thinning / loss, nail and skin changes – hair (anywhere on the body), skin and nails, like the lining of the gut, are also made up of cells that rapidly divide, renew and replace themselves – therefore, as in the gut, you may see changes in your hair, nails and skin. Once treatment has completed or stopped – these cells recover and ‘normal’ growth restarts.
  • Interactions – certain other medications and /or food substances, such as grapefruit juice, may affect how well your planned treatment works. Some can increase their effect, others may reduce their effect. You specialist team will advise you on this.
  • Allergy/ severe intolerance – very rarely an allergic reaction to treatment may occur – which is why some treatments may be started under close medical supervision. It may not be the drug itself, but may be something in its preparation or content. For example, some people cannot tolerate medications in that come in capsules (the type that can be opened, rather than shape). Any severe reaction should be considered a medical emergency – if not in hospital then you would be advised to call 999 or attend A&E/ nearest medical service asap.

You will be given self care advice: this will include how to best prepare for treatment, selfcare during treatment – including when to seek medical help – and what to expect afterwards. 

An alternative to surgery for small Neuroendocrine Cancers or those that form in polyps is treatment given through an scope (a long, thin medical device that is used to examine the hollow organs of the body such as the lungs or digestive system {stomach through to rectum})

There are also scopes that can be used to examine the female or male reproductive and/or urinary systems.

Treatment delivered via any type of scope is usually a safe procedure, and the risk of serious complications is very low.

Rare complications include:

  • An infection in a part of the body the scope is used to examine – this may require treatment with antibiotics
  • Piercing or tearing (perforation) of an organ, or bleeding – depending on the degree of damage or where it occurs you may need surgery to repair this. Please note, depending on the area being treated and what treatment is delivered – slight bleeding may be experienced – which is normal. You will be advised beforehand of what to expect.
  • Vasovagal syncope / faint – vasovagal syncope is a condition that leads to fainting in some people. Many nerves connect with your heart and blood vessels. Under certain situations, these nerves might give an inappropriate signal – altering your heart rate and blood pressure – leading to dizziness or fainting.

Triggers include anxiety and / or stimulation of certain nerve pathways during a procedure – such as a scope treatment. It is a rare effect that may occur during bronchoscopy or colposcopy, though there are a handful of reports of it occurring during endoscopy.

Sedation is usually safe, but it can sometimes cause temporary side effects, including:

  • Feeling or being sick
  • A bruise or burning sensation where the injection was given
  • Low blood pressure (hypotension)
  • Breathing difficulties

You will be given self care advice (for before and after treatment) : this will include how to best prepare for the procedure and what to expect afterwards – including when to seek medical help.

For example: If you notice any signs of infection, bleeding, shortness of breath or unrelieved, increasing, persistent pain. See a GP or visit your nearest A&E immediately! 

Depending on the type of procedure – complications of IR include:

Effects of Sedation: This is usually safe, but it can sometimes cause temporary side effects, including:

  • Feeling or being sick
  • A bruise or burning sensation where the injection was given
  • Low blood pressure (hypotension)
  • Breathing difficulties.

Procedure related:

  • Infection – You may be given antibiotics before and after the procedure to help reduce the risk of infection
  • Bleeding / bruising – depending on the area being treated and what treatment is delivered – slight bleeding or bruising, at any incision or needle site, may be experienced.
  • Damage to the blood vessel being used to deliver treatment or healthy area surrounding the area being treated. This is rarely severe enough to require further medical or surgical intervention.
  • Reactive response – the body may see the procedure as an injury. The natural response to injury is inflammation – caused by a rush of protective and repair factors to the site of harm. For example, if you have undergone ablative treatment to a tumour in the liver – you may experience an inflammatory response in both the tumour and the liver. The tumour doesn’t want to be killed, but as its cells are attacked, it may release certain substances that cause inflammation (swelling) and may also cause a temporary ‘flu-like’ response (fever, shivering). This reaction may cause surrounding healthy liver cells to respond in a similar fashion. This is temporary – usually occurring within 24 hours of treatment and can be alleviated by simple paracetamol.

Rarely, a more severe reaction may be experienced as tumour cells are damaged and die – this sudden destruction can cause the release of certain chemicals into the bloodstream, that the kidneys cannot get rid of as fast as they’d like – this is called Tumour Lysis Syndrome. Typically, onset is within 1-5 days of the procedure or chemotherapy and severity can range from a few abnormal blood results to the other extreme, which may include renal failure and cardiac disturbances (heart problems).

If IR involves the use of chemotherapy and / or radiation particles – these substances may also carry the risk of side effects.

Further information about chemotherapy effects can be found here.

Further information about radiation-related effects can be found here.

You will be given self care advice (for before and after treatment): this will include how to best prepare for the procedure and what to expect afterwards – including when to seek medical help.

For example; If you notice any signs of infection, bleeding, shortness of breath or unrelieved, increasing, persistent pain. See a GP or visit your nearest A&E immediately. 

Radiation therapy is a cancer treatment that uses high or concentrated doses of radiation to kill cancer cells and shrink tumors.

Radiation effects can vary and will be dependent on the dose, the treatment (external or internal) and the site being treated. Effects may also vary depending on whether you have had previous radiation and / or chemotherapy.

Complications of radiation therapy include:

  • Fatigue – may be due to other potential effects of radiation such as possible anaemia, the increased energy requirement your body needs to deal with repair and recovery or simply the time it takes. For example, many External Beam Therapies require a daily attendance at hospital for several weeks (the procedure itself may only take minutes, but unless you live nearby and / or have your own transport, each session can involve a whole day).
  • Bone marrow suppression – radiation therapy can have an effect on how well the bone marrow can continue to produce blood cells. We need healthy blood cells to deliver oxygen and nutrition around our body, help fight infection and also repair damage and prevent bleeding. If bone marrow production of cells is reduced this can lead to anaemia, reduced immunity, delayed healing and bruising/bleeding.
  • Altered liver or kidney function – both the liver and kidneys are involved in the regulation , filtering and elimination of waste products in our bodies, including products within the bloodstream. Substances from damaged tumour cells and the breakdown of radiation particles once they have done their job, need to be eliminated from the body – and the liver and kidneys are vital in this. However, sometimes these substances can cause damage to healthy liver and kidney cells – leading to reduced function.
  • Nausea/vomiting
  • Radiation dose restrictions – if you have previous been treated with radiation and / or chemotherapy – your specialist team will need to consider whether these previous treatments may alter the type and dosage of radiation the treatment will involve.
  • Fertility – depending on the type of treatment and the area to receive radiation, fertility may be affected.
  • Pain / inflammatory response – the body may see the procedure as an injury. The natural response to injury is inflammation – caused by a rush of protective and repair factors to the site of harm. The tumour doesn’t want to be killed, but as its cells are attacked, it may release certain substances that cause inflammation (swelling) – which can lead to discomfort and / or pain.

Rarely, a more severe reaction may be experienced as tumour cells are damaged and die – this sudden destruction can cause the release of certain chemicals into the bloodstream, that the kidneys cannot get rid of as fast as they’d like – this is called Tumour Lysis Syndrome. Typically, onset is within 1-5 days of the procedure or chemotherapy and severity can range from a few abnormal blood results to the other extreme, which may include renal failure and cardiac disturbances (heart problems).

  • Target site skin reaction – this is more common in External Beam Radiotherapy – where a specific spot/site of the body is targeted to receive radiation. As the beam passes through the skin it can cause surface irritation – from a reddening or irritation of the skin to something like a burn. Very rarely this can lead to the breakdown of skin – this is rare, the team giving you treatment will keep a close eye on skin health to prevent this happening.
  • Fibrosis / damage – as above, this may be more common in External Beam radiotherapy, but effects deeper tissue, rather than the skin surface. As the beam passes through body tissue it can cause irritation and inflammation leading to internal ‘scarring’ – this is known as fibrosis – and is a more common side effect in EBRT to the lungs and abdominal/pelvic area.

Very rarely.

  • MDS – this is a type of blood cancer that affects the bone marrow. It causes low levels of one or more types of blood cells. You will be carefully monitored during and after treatment, by blood tests, to ensure that healthy cells are not damaged – but if they are, this is found as soon as possible to reduce the risk of this damage leading to cancerous changes.

You will be given self care advice (for before and after treatment) : this will include how to best prepare for the procedure and what to expect afterwards – including when to seek medical help. 

Surgery is a treatment in which a part of the body is cut open so that a surgeon can repair, remove, or replace a diseased or damaged part. Therefore, there are risks/benefits and potential side effects and/or consequences of undergoing surgery.

These vary from person to person and may be related to several factors:

  • What type of surgery you’ve had, for example, keyhole or open
  • What part of the body was operated on – what was removed, debulked or bypassed?
  • Length and complexity of surgery – was the aim of surgery achieved?
  • Other treatments you may have received before surgery, such as chemotherapy – which may affect healing and recovery
  • Your general health – level of fitness and / or other medical conditions you may be dealing with – both physically and mentally.

Your nutritional status – before , during and after surgery – may also play a role. Further information about nutrition and surgery to the digestive system can be found here.

As part of informed consent you will have received information about the risks and benefits of surgery – and may also have been given information about possible effects and / or consequences.

For example – the potential impact on fertility following surgery to either male or female reproductive organs.

There are some effects that can be common across all types of surgery:

Pain – pain is not uncommon – but hopefully, as part of your pre-assessment or surgery work-up, you will have had the opportunity to discuss likely and preferred pain relief with your surgeon and / or anaesthetist.

Numbness – you may experience some numbness along the incision site (wound). This is not uncommon in surgery where the nerves in the skin are cut during the procedure. This does not necessarily cause you any problems and often continues for quite a while afterwards. It can be a little disconcerting though, at a later date, when feeling starts to return to the area – especially if you have become used to it being numb.

Fatigue – It is not uncommon to feel fatigue after surgery – especially if you have undergone a ‘big’ or long operation. In fact research shows that you can lose more glycogen (a form of carbohydrates stored in your muscles for energy), during surgery than while training 2-3 hours for a race.

Factors that may influence the level of fatigue you may experience include:

  • Level of fatigue beforehand
  • Anaesthetic medications
  • Pain relief
  • Nutrition and appetite and the energy your body uses to help repair and recover during and after surgery Fatigue usually improves as your body recovers – but it can take time – and that time will vary from person to person.

Reduced appetite – this may be related to anaesthesia and the medications you may need to take in and around surgery – for example, some antibiotics can leave a metallic taste in the mouth, which makes everything taste odd. If you have had surgery that may affect how soon you can restart eating – talking to a dietician before and during your hospital stay – may help – especially if your surgery may require you to alter your usual diet in anyway or you have lost weight. Further information on diet and nutrition can be found here.

Bleeding/bruising – It is not unusual to experience some, slight, bleeding from the operation site – heavy bleeding requires urgent attention. Bruising may also be normal, depending on the type of surgery and whether you are receiving or self injecting blood thinning medication (anti-coagulation such as heparin)— but if it is worsening (deepening or extending) – this needs urgent medical review.

Swelling/ fluid collections / lymphoedema – the body sees surgery as an injury. The natural response to injury is inflammation – caused by a rush of protective and repair factors to the site of harm – so some swelling is to be expected. internally this is often accompanied by fluid collection in the affected area – which is why you may have a wound drain in place for a number of days after an operation to allow this fluid to drain away, rather than collect and become a possible source of infection. However, not all fluid that may gather at or near a surgical site will be directly related to this protect and recover process. In operations where lymph nodes are removed – the fluid that normally passes through them, into and out of the surrounding tissues, may not be able to drain back into the lymphatic system. This causes something known as lymphoedema – and may be a more common consequence in certain types of surgery than others – for example, following a mastectomy (breast removal) and lymph node clearance, lymphedema may occur in the arm on the same side of the body. It may also occur in certain abdominal procedures – where it may be referred to as chylous ascites (the accumulation of lymph rich fluid in the abdomen, causing swelling). If lymphedema is a possible consequence of the surgery you are to undergo, it may help to speak to a lymphoedema therapist / specialist beforehand – for additional information and advice.

Infection – is a risk of surgery but may occur elsewhere in the body, during your stay in hospital. Wound care will be provided – alongside measures to reduce the risk of either a chest or urine infection.

Altered function – Occasionally surgery may result in either temporary or permanent altered function, because the part of the body responsible for a certain function has been removed or significantly altered. For example, removing part of the pancreas may result in a temporary alteration of blood sugar control, whereas removing all of it will result in insulin-dependent diabetes (as there will be no remaining pancreas left to carry out blood sugar control).

Body Image – Surgery is a treatment the can alter the way your body looks, feels and / or functions physically, it can also have an effect on how you feel about yourself and your body – you may experience positive and / or negative changes to your self-image.

Even if you have been able to talk to your specialist team about the changes surgery may bring about – it may still take some time to re-adjust, both physically and mentally, with these changes. If you are struggling with how you feel or find yourself becoming negative or distressed by these changes – let your specialist nurse / team or GP know.

Further information about support and counselling – can be found here.

Sexual and reproductive health – how we feel about our bodies can also affect our most intimate relationships. Surgery, as mentioned above, can add a different dimension to that by resulting in either positive or negative effects on our self image. As well as our self and body image – surgery may also impact on our sexual and reproductive health by altering physical functioning – and this should be discussed with you before surgery, whether it is a definite or possible effect of surgery.

SSAs may be used to help control the secretion of hormones if abnormal levels are being produced. SSAs may also be used to slow down growth rate in low to moderate grade ‘well differentiated’ Neuroendocrine Tumours (NETs).

As a SSA starts to be absorbed by the body, it can temporarily upset your usual hormone balance – whether you already have symptoms or not but things can and do settle and improve. When you first start treatment with either Octreotide (Sandostatin LAR or Olutaton) or Lanreotide (Somatuline Autogel) – you will be talked through how it works and what you might expect to happen – including any potential side-effects.

Whether you have already had symptoms before starting this treatment or none at all – developing or worsening symptoms can be alarming.

This is normal – if you are going to experience a change to your ‘normal’- it usually starts within 24 – 48 hours – if you get to about 10 – 14 days without a day or two of these symptoms, then it may not happen. If it does occur – it usually only lasts for 24 – 72 hours – and your specialist team will have advised you on simple steps you can take to manage these symptoms – such as simple pain relief and / or Imodium.

What is not normal is for symptoms to flare up and become constant beyond 3 – 4 days and / or beyond 4 – 5 injections – if this happens let your specialist nurse/team know.

Many people, especially those with Carcinoid Syndrome, find that not only does this temporary reaction stop occurring – but the symptoms they had beforehand also start to improve.

Severe abdominal pain is not a usual occurrence – if this happens – seek medical attention at your nearest hospital- let them know your diagnosis and how and where it’s been treated. It can also be helpful to have your specialist nurse/team contact details with you – if your specialist team is not at the hospital you attend, so that the admitting team can contact them for further information and advice.

The pharmaceutical companies that manufacture somatostatin analogues (which include lanreotide and octreotide) list potential side effects as:

  • Loss of appetite – may be further reduced by not eating.
  • Feeling and/or being sick – this may be made worse by avoiding food.
  • Feeling bloated – often associated with steatorrhoea*, ‘wind’ and / or constipation.
  • Stomach pain and/or cramping.
  • Diarrhoea – bowel motions may become more frequent and / or fluid.
  • Steatorrhoea* – pale, smelly, oily diarrhoea, that doesn’t flush away easily, tending to float in the toilet bowl.
  • Soreness or a lump at the injection site.
  • Fatigue.
  • Blood glucose changes** – this is not the same as developing diabetes. Though if you are diabetic – you may find you need to make some alterations to maintain your usual ‘normal’ blood sugar levels. Ensure your specialist team, dietician and GP are talking to each other as well as you to help maintain diabetic control.
  • Gall bladder infection related to thickened bile, bile sludge and / or stones – the function of the gall bladder as a hold and release vessel for bile flow can be affected by SSA, this leads to thickened bile – which can cause irritation and grit or stones to form.
  • Reduced thyroid function – just as the pancreas may be affected in its ability to produce hormones, so too, can the thyroid gland be affected.
  • Headache and / or dizziness.
  • Bradycardia – slowing of the heart rate. Some of the hormones released by Neuroendocrine Cancers can narrow or widen blood vessels and airways – which can lead to flushing, palpitations (rapid heart rate) and wheezing in Carcinoid Syndrome. Altering the levels of these kind of hormones, by SSAs, may result in slowing the heart rate – rather than increasing it.

SSAs can alter the pancreas’ normal response to eating – which is to release certain gut hormones and enzymes to help the body break down and utilise food.

*A lack of pancreatic enzymes (Pancreatic Enzyme Insufficiency – PEI) can result in steatorrhoea occurring.

**An alteration in normal pancreatic based gut hormones being released – can lead to a rise (most common) or fall (less common) in normal blood sugar levels* – especially after eating.

Other changes patients have mentioned include:

  • Increased joint discomfort or pain
  • Hair thinning or loss (though rarely complete alopecia)
  • Vitamin deficiencies – particularly Vitamin A, B (B3 and 12 in particular), D, E & K
  • Weight loss or gain. 

About Us

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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