When you’ve been told you need surgery for neuroendocrine tumour liver metastases – preparing as a patient

For patients, families, and primary care teams. From the team behind prehabforsurgery.com.

Neuroendocrine tumours – usually abbreviated to NETs – are a family of cancers that arise from specialised hormone-producing cells found throughout the body. They are uncommon but the diagnosed incidence has been rising over the last twenty years, largely because we now find them more often on scans done for other reasons. The most common primary sites are the small bowel (midgut), the pancreas, the lung, the appendix, and the rectum. When a NET spreads, the liver is by far the most common site of metastasis – and for many patients, the liver disease is what brings them to a hepatobiliary surgeon.

If you have just been told you need surgery for NET liver metastases, the first thing to understand is this: NETs behave differently from most cancers people are familiar with. Many – particularly the well-differentiated, lower-grade ones – grow slowly. Patients can live with metastatic NET disease for ten, fifteen, even twenty years. The treatment strategy is correspondingly different: it is often less about a single curative operation and more about a long-term plan that uses surgery, radiology procedures, medication, and sometimes specialised radioisotope treatments in sequence over many years.

Honest framing first: surgery for NET liver metastases is one of the most consequential parts of that long-term plan – sometimes curative, often disease-controlling rather than disease-eliminating, and almost always worthwhile when the team recommends it. The four to six weeks before that operation are time you can use well. This article walks through what NETs are, why the liver gets involved, how the multidisciplinary team chooses between treatment options, what makes NET surgery distinctive, and what you can do in the prep window to give yourself the best possible result. It is not a substitute for advice from your own team – it is a starting point for the conversations that follow.

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What neuroendocrine tumours are, and why the liver matters

Neuroendocrine cells are scattered throughout the body. They sit at the interface between the nervous system and the endocrine (hormonal) system, and their normal job is to release small signalling chemicals – serotonin, gastrin, insulin, glucagon, somatostatin, and many others – in response to local conditions. When these cells become cancerous, the resulting tumour often retains some of that hormone-producing behaviour. This is one of the things that makes NETs distinctive.

NETs are divided in two important ways. First, by where the tumour started (the primary site): midgut NETs (small bowel, appendix) most often produce serotonin and can cause carcinoid syndrome; pancreatic NETs may produce insulin, gastrin, glucagon, or other hormones, or may be non-functional; lung NETs and rectal NETs sit in their own categories. Second, by how the tumour cells look under the microscope – graded G1 (lowest grade, slowest), G2 (intermediate), or G3 (high grade, behaves more like conventional cancer). The grade is one of the most important predictors of how the disease will behave over time, and it shapes everything from how often you need scans to whether surgery is the right next step.

The liver is the most common metastatic site for NETs because the venous blood from the gut drains into the liver via the portal vein. Any tumour cells that escape from a small bowel or pancreatic NET pass through the liver before reaching the rest of the body, and the liver is hospitable ground for them to settle and grow. For many patients with midgut NETs in particular, the liver disease is discovered at the same time as the primary or shortly afterwards.

Why NET liver metastases are managed differently from other liver cancers

Three things make NET liver metastases distinctive compared to colorectal liver metastases or primary liver cancer:

• They are often slow-growing. Doubling times of months to years are common – so the team frequently has the luxury of planning rather than rushing.

• Even incomplete removal can help. In most cancers, getting 85% of the tumour out is not a useful operation. For NETs, cytoreductive (debulking) surgery that reduces tumour burden – even by 70-90% – can meaningfully control hormone symptoms and extend life. This is unusual in cancer surgery and worth understanding.

• Hormone production may need controlling before surgery. If the tumour releases serotonin or other vasoactive substances, the stress of anaesthesia and surgical handling can trigger a carcinoid crisis — a dramatic and dangerous swing in blood pressure and heart rhythm. The whole anaesthetic and surgical plan has to be adapted to prevent this.

These three features – slow growth, benefit from incomplete resection, and hormone-related perioperative risk – explain why your prep period might look different from someone preparing for a colorectal-metastasis liver resection or a Whipple procedure.

The treatment options your team will be weighing

NET liver metastases have more treatment options than almost any other liver cancer. The multidisciplinary team – typically including HPB surgeon, NET-specialist medical oncologist or endocrinologist, interventional radiologist, nuclear medicine physician, and specialist nurse – will weigh several modalities, often used in sequence over years:

Surgical resection

Removal of part of the liver, sometimes combined with removal of the primary tumour at the same operation (particularly common for small bowel NETs). Resection is the option that offers the best chance of long-term disease control and, in selected patients, cure. The operation may be a single procedure or staged across two operations a few weeks apart if more liver needs to be removed than would be safe in one go. For general information on liver resection, please see our overview of liver surgery, here.

Liver-directed therapies

Procedures done through a small puncture in the groin or skin, by interventional radiology, rather than through open surgery. These include trans-arterial chemoembolisation (TACE), trans-arterial radioembolisation with yttrium-90 (TARE / Y90), radiofrequency ablation (RFA), and microwave ablation. They are particularly useful when the liver disease is extensive but the patient cannot have surgery, or as a complement to surgery – for example, ablating small deposits while surgically removing larger ones.

Liver transplantation

For a carefully selected minority of patients – those with liver-only disease, well-differentiated tumours, and primary tumour already controlled – liver transplantation can be considered. The selection criteria (such as the Milan-NET criteria) are strict and the decision is always made by a transplant centre. It is not a treatment option for most patients with NET liver metastases, but it is worth knowing it exists.

Somatostatin analogues (octreotide, lanreotide)

Long-acting injections, usually given every four weeks, that bind to receptors on the tumour cells. They reduce hormone secretion (controlling symptoms like flushing and diarrhoea in carcinoid syndrome), and they also slow tumour growth in many patients. Most people with NET liver metastases will be on a somatostatin analogue continuously for years.

Peptide receptor radionuclide therapy (PRRT)

A treatment in which a radioactive molecule (most commonly lutetium-177 dotatate, brand name Lutathera) is bound to a somatostatin-like peptide and infused into the bloodstream. The peptide binds selectively to NET cells, delivering targeted radiation. PRRT is given as four cycles, usually eight weeks apart, and is one of the most important advances in NET treatment in the last decade. Eligibility is determined by a specialist nuclear medicine team based on receptor imaging (gallium-68 DOTATATE PET scan).

Other systemic therapies

Depending on the primary site and grade of the tumour, your team may also consider everolimus, sunitinib (particularly for pancreatic NETs), capecitabine and temozolomide, or standard chemotherapy (for higher-grade tumours). These are typically deployed later in the disease course rather than at first presentation.

How the team decides on surgery versus other options

Whether surgery is the right next step depends on several questions that the MDT will work through together. The answers, taken together, determine your treatment plan:

• Where is the primary tumour, and has it been controlled? For midgut NETs, the primary is often removed at the same operation as the liver disease. For pancreatic NETs, the primary surgery may be staged separately or done simultaneously.

• How much liver is involved, and where? Is the disease distributed in a pattern that can be safely removed leaving enough functioning liver behind? Modern surgical techniques, sometimes combined with portal vein embolisation (a procedure to grow the part of the liver you’ll keep), have widened the boundary of what is operable.

• Is there disease outside the liver? Small-volume extrahepatic disease does not automatically rule out liver surgery in NETs, but its presence shifts the conversation.

• What is the grade of the tumour? Lower-grade tumours benefit more clearly from aggressive surgical management than high-grade ones, where systemic therapy often comes first.

• Is the tumour functional (producing hormone symptoms)? If yes, debulking can help symptoms even when complete clearance is impossible.

• How fit are you for major surgery? Major liver resection for NETs is significant — and your overall fitness, cardiac status, and nutritional state matter as much here as in any cancer surgery.

If your team has recommended surgery, they have judged that the answers to these questions favour an operation. The prep period before surgery is where you can influence the answer to the final question — your fitness for the operation itself.

What makes prep for NET liver surgery distinctive

Most of the general principles of prehabilitation – physical conditioning, nutrition, smoking cessation, alcohol minimisation, optimising other medical conditions, mental preparation – apply to NET liver surgery just as they do to any major operation. Several things, however, are specific to NETs and worth highlighting.

Carcinoid heart disease screening

If you have a serotonin-producing midgut NET (and especially if you’ve had symptoms of carcinoid syndrome – flushing, diarrhoea), the chronic exposure of the heart to circulating serotonin can cause thickening and dysfunction of the heart valves on the right side (tricuspid and pulmonary valves). This is called carcinoid heart disease and is one of the leading causes of death in carcinoid syndrome. Before major surgery, your team will usually request an echocardiogram (an ultrasound of the heart) to check for valve involvement. If the valves are significantly affected, the cardiac team may need to be involved in the operative plan – and in some cases valve replacement is considered before or alongside the NET surgery. This is not the case for most patients, but the screening matters.

Octreotide and the prevention of carcinoid crisis

If your tumour produces vasoactive hormones (most often serotonin), the physiological stress of induction of anaesthesia and surgical handling of the tumour can trigger massive release of those hormones into the circulation. The result – carcinoid crisis – causes dramatic swings in blood pressure, heart rhythm disturbances, and bronchospasm, and can be fatal if not prevented. The standard preventive measure is an intravenous octreotide infusion started before anaesthesia and continued through the operation. If you are already on long-acting octreotide or lanreotide, you should continue your usual injection schedule in the run-up to surgery, and the anaesthetic team will add the perioperative IV infusion on top. Confirm the plan with your team in advance – this is not optional, and the timing of your last long-acting injection before surgery matters.

Volume status, electrolytes, and nutrition

Patients with carcinoid syndrome are often chronically dry from diarrhoea, and long-term somatostatin analogue use can cause steatorrhoea (fatty diarrhoea) and a deficiency in vitamin B3 (niacin), occasionally leading to a condition called pellagra. In the weeks before surgery, paying attention to fluid intake, electrolyte replacement, vitamin levels, and protein intake matters. Your team may check blood tests including liver function, urea-creatinine-electrolytes, chromogranin A, fasting gut hormones, and vitamin levels – and may prescribe specific supplements. Pancreatic enzyme replacement therapy may be needed if your somatostatin analogue is causing significant steatorrhoea. A specialist NET dietitian can be very helpful in this window if your centre has one available.

Imaging and the team you’ll meet

Pre-operative imaging for NETs typically includes high-quality contrast-enhanced CT or MRI of the abdomen and pelvis, and a gallium-68 DOTATATE PET scan (the receptor-imaging study that maps where the tumour cells expressing somatostatin receptors are throughout the body). The DOTATATE scan is often what reveals the full extent of disease and is critical for planning. Many NET surgeries are planned with the operating surgeon and the interventional radiologist working together – sometimes combining open surgery with intraoperative ablation. You may also meet your medical oncologist or endocrinologist (who will manage the long-term plan), a specialist NET nurse (your point of contact for symptoms and questions between appointments), and the anaesthetic pre-assessment team.

What you can do in the four to six weeks before surgery

The prep window is real time and real opportunity. Some of these are general; some are NET-specific.

• Keep moving. Walk daily – work up to 30-45 minutes at a brisk pace, ideally with some gentle inclines. Add light strength work two or three times a week (sit-to-stand from a chair, wall press-ups, simple resistance band exercises). Patients who arrive at theatre with better baseline fitness recover faster, full stop.

• Eat well, eat regularly. Aim for 1.2-1.5 g of protein per kilogram of body weight per day. If you’ve been losing weight, this is the window to reverse the trend if possible. Oral nutritional supplements (Fortisip, Ensure) are appropriate if you can’t get there with food alone.

• Take your somatostatin analogue exactly as prescribed and don’t skip an injection in the run-up to surgery. Confirm the timing of your last long-acting injection with your NET team.

• Confirm the carcinoid crisis prevention plan with your team. Ask explicitly whether IV octreotide will be running during your operation. If you don’t get a clear answer, ask again.

• Get the echocardiogram done early if it’s been requested – if it shows valve disease, the cardiology conversation needs time.

• If you smoke, stop now. Even four weeks of stopping before surgery improves wound healing and reduces chest complications.

• Minimise alcohol. The liver you’re keeping has work to do during recovery and benefits from being well-rested.

• Review every medication and supplement with your team – herbal supplements in particular should be stopped two weeks before surgery, as some affect bleeding or interfere with anaesthesia.

• Make practical arrangements at home. Plan for two to three weeks where you’ll need help with shopping, cleaning, and (if relevant) childcare. Move things you use daily to waist-height to minimise bending and stretching while wounds heal.

• Talk honestly with your specialist NET nurse. They will be your point of contact for the long-term plan and they have heard every question before. Use them.

Mental preparation matters too. NET surgery is one milestone in what is often a long treatment journey. It helps to understand that – most patients will continue to need monitoring, scans, and probably ongoing medication for years after the operation, and that is the normal pattern, not a sign that anything has gone wrong.

What to expect after surgery and in the weeks that follow

Recovery from NET liver surgery follows broadly the same trajectory as any major liver operation: a few days in a high-dependency or intensive care setting, then a step down to the surgical ward, with discharge home typically between five and ten days after operation for an uncomplicated case. The healthy part of the liver regrows over the following weeks and months, and full recovery of energy and stamina takes two to three months for most patients.

Several things are specific to NET recovery. Your hormone-related symptoms (if you had them) may change – sometimes dramatically – after surgery. Flushing or diarrhoea may improve substantially. Conversely, occasionally surgical handling causes a transient flare in hormone levels which the team will manage. Your somatostatin analogue will usually be restarted at the previous dose once you are tolerating an oral diet. Follow-up imaging (usually a CT or MRI) is typically scheduled at three months, then at intervals determined by your team – often three- to six-monthly for the first two years, then less frequently.

Blood tests will continue to monitor chromogranin A and other relevant gut hormones (such as urinary 5-HIAA for serotonin-producing tumours), as well as vitamin levels. The DOTATATE PET scan is sometimes repeated to assess response and to plan whether PRRT is the next step.

Living with NETs long-term – what to know

Most patients with metastatic NET disease should expect to live with it as a chronic condition rather than something that is cured at a single moment in time. This framing is important — it is not pessimistic, it is realistic, and it sets expectations correctly. Many patients with low-grade midgut NET liver metastases live ten years or more, and the treatment landscape continues to improve.

Things that matter long-term: stay engaged with your NET centre even when things are quiet. Keep your specialist NET nurse’s contact details accessible. Get the recommended scans on time. Don’t be alarmed by new mild symptoms – flag them, and let the team decide whether they’re significant. Consider joining a NET-patient organisation – the peer knowledge in these groups is often the single most useful resource patients describe.

Patient resources and support

Several organisations specialise in supporting patients with neuroendocrine tumours and their families:

• Neuroendocrine Cancer UK (formerly NET Patient Foundation) – UK-based, with patient information, helpline, and patient meetings. neuroendocrinecancer.org.uk

• International Neuroendocrine Cancer Alliance (INCA) – global federation of NET patient advocacy groups. incalliance.org

• Carcinoid Cancer Foundation (US) – long-established US patient organisation with a deep resource library. carcinoid.org

• NET Research Foundation – research-focused US organisation funding NET science.

• Your hospital’s specialist NET nurse – usually the single best practical resource for day-to-day questions between appointments.

Be cautious with general internet searches on NETs – the disease is rare enough that general cancer-information sites often have outdated or inaccurate detail. The specialist organisations above, and your own NET team, are more reliable.

A note before surgery

If you’ve been recommended for liver surgery for NET metastases, the team has made that recommendation because they judge that – even in disease that has spread – surgery offers you the best chance of long-term control. The slow-growing nature of most NETs means that the work you put in over the next four to six weeks has real impact, and the long-term trajectory of NET disease means that arriving at theatre as fit and well-prepared as possible pays dividends over years, not weeks.

Use the prep window. Ask the questions you need to ask. Confirm the carcinoid crisis prevention plan. Get the echocardiogram done. Eat, move, sleep, stop smoking, minimise alcohol, lean on your NET nurse, and arrive at theatre as the strongest version of yourself you can be. The team will do the rest.

Reviewed by Mr Tom Gallagher, Consultant HPB Surgeon, St Vincent’s Healthcare Group, Dublin. Last updated 3 June 2026.