CION Cancer Clinics
Neuroendocrine tumours of the colon: what a carcinoid really is | CION Cancer Clinics
A neuroendocrine tumour of the colon, often called a carcinoid, grows from hormone-making cells in the bowel lining. It is not the same disease as ordinary colon cancer. Some are tiny and slow and are removed at colonoscopy; others are fast and need chemotherapy quickly. The grade on your pathology report decides which. This page explains the words, the tests and why the plan differs. At CION Cancer Clinics in Hyderabad, our oncologists explain colon cancer in plain words and plan care around you and your family.
On this page
- What is a neuroendocrine tumour of the colon?
- Is a carcinoid the same thing as a neuroendocrine carcinoma?
- How is a colon neuroendocrine tumour graded and staged?
- The words you will meet, in plain language
- Three things families say about carcinoids, and what is true
- What this page cannot tell you
- Common questions about neuroendocrine tumours of the colon
The short answer
What is a neuroendocrine tumour of the colon?
A neuroendocrine tumour is a growth that starts in the hormone-making cells scattered through the bowel lining, not in the glandular cells that cause ordinary colon cancer. Older reports call it a carcinoid. It is uncommon in the colon, and it behaves differently enough that the treatment plan for adenocarcinoma does not simply carry across.
Why the word matters on your report
Neuroendocrine cells sit between the nerves and the glands. They release small amounts of hormones that help the bowel move and digest. When they grow out of control the result can be anything from a tiny, slow-growing nodule found by chance at colonoscopy to a fast, aggressive cancer. The same family name covers both ends, which is why the grade on the pathology report tells you more than the name does.
Where in the bowel it is found
Most neuroendocrine tumours of the lower bowel are in the rectum or the appendix, and those have their own rules. A tumour in the colon itself, particularly the right side, is the rarer and often the more serious version. If your report says rectum, the rectal cancer hub is the better place to read, because small rectal tumours are often removed through the endoscope and need no further treatment.
Grade, not the word carcinoid, decides what happens next. Ask for the grade before you ask anything else.Two very different diseases
Is a carcinoid the same thing as a neuroendocrine carcinoma?
No. Pathologists split neuroendocrine tumours by how closely the cells still resemble normal ones and how fast they are dividing. The split decides the treatment.
Well-differentiated tumour (NET)
The cells still look organised and divide slowly. This is the classic carcinoid. Many are found small, removed completely at colonoscopy or with a short operation, and then simply watched.
Usually looks like
- Grade 1 or grade 2 on the report
- A low Ki-67 index
- Slow change between scans
Neuroendocrine carcinoma (NEC)
The cells have lost their organisation and divide quickly. The report may say small cell or large cell type. This is a genuine cancer, treated with chemotherapy much as a fast-growing lung cancer would be, and it needs a plan within days rather than weeks.
Grade 3 with poorly differentiated cells is the line that changes everything.Mixed tumour (MiNEN)
Some colon tumours contain both an adenocarcinoma part and a neuroendocrine part. The report will name both. The tumour board usually treats the more aggressive of the two components, so the plan can look like ordinary colon cancer chemotherapy.
Why the family name confuses people
A relative with a slow rectal carcinoid and a relative with a colon neuroendocrine carcinoma have had almost nothing in common. Comparing the two experiences, as families do, leads to false reassurance in one house and needless panic in the other.
Not sure whether this applies to you?
Ask an oncologistAfter the biopsy
How is a colon neuroendocrine tumour graded and staged?
The pathologist grades it
Special stains confirm the cells are neuroendocrine, and a stain called Ki-67 counts how many are dividing. That count gives the grade. If the biopsy was read elsewhere, CION can arrange a second look at the slides by a partner pathologist, because grade is easy to under-read on a small sample.
Blood and urine tests
A blood marker called chromogranin and a urine test for a serotonin breakdown product are sometimes checked. They help follow the tumour over time rather than diagnose it, and a normal result does not rule anything out.
Scans chosen for the grade
A CT of the chest, abdomen and pelvis is standard. Slow-growing tumours are often better seen on a gallium DOTATATE PET-CT, which lights up cells carrying somatostatin receptors. Fast-growing ones are scanned with the ordinary sugar PET-CT. CION arranges either through its imaging partners.
The tumour board decides
A medical oncologist, a surgical oncologist and a radiologist look at the grade, the size and the scans together. Because these tumours are rare, CION's tumour board will often seek an opinion from a specialist neuroendocrine centre before the plan is confirmed.
On your report
The words you will meet, in plain language
- Neuroendocrine
- Cells that take signals from nerves and answer by releasing hormones. They are normal and scattered through the whole gut.
- Carcinoid
- The older name for a well-differentiated neuroendocrine tumour. Some labs still use it. It does not mean harmless.
- Ki-67 index
- The share of tumour cells caught in the act of dividing. Low means slow, high means fast. It sets the grade.
- Grade
- Grade 1 is slow, grade 2 is in between, grade 3 is fast. Grade is about speed. Stage, a separate word, is about spread.
- Somatostatin receptor
- A docking point on the surface of many slow tumours. If it is present, a monthly injection can hold the tumour still, and a special PET scan can find it.
- Carcinoid syndrome
- Flushing, diarrhoea and wheeze caused by hormones the tumour releases. It is rare with colon tumours and usually means the liver is involved.
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Commonly believed
Three things families say about carcinoids, and what is true
Every neuroendocrine tumour can spread, even the slowest. What is true is that many small, low-grade tumours are removed completely and never return. Treat the word as the start of a conversation about grade and size, not as the all-clear.
Usually not. Standard colon cancer chemotherapy such as FOLFOX is built for adenocarcinoma. Slow neuroendocrine tumours are held with somatostatin injections or targeted tablets, and fast ones get a different chemotherapy altogether. The surgery, when needed, is similar.
The blood marker is useful for tracking a tumour that was raising it in the first place. Many colon neuroendocrine tumours never raise it at all, and acidity tablets can push it up without any cancer. Scans, not blood tests, confirm whether disease remains.
Neuroendocrine tumours are uncommon but not exotic. Medical oncologists manage them routinely, and the specialised parts, such as radioactive peptide treatment, are arranged through nuclear medicine partners when the tumour board recommends them.
Being straight with you
What this page cannot tell you
It cannot tell you your grade or your stage, and those two facts carry the whole plan. A neuroendocrine tumour is one of the few diagnoses where two people with the same organ and the same word on the report can be offered treatments that share nothing. Only your pathology report, read by an oncologist alongside your scans, can place you.
What treatment looks like, broadly
A small, low-grade tumour removed completely at colonoscopy may need only follow-up. A larger one usually needs a segment of colon removed, planned by CION's surgical oncologists and carried out at an accredited partner hospital. Spread to the liver is managed over years in many people, with injections, targeted tablets, liver-directed treatment or radioactive peptide therapy arranged through partners. A neuroendocrine carcinoma is treated with chemotherapy at a CION centre, starting quickly.
Who this does not apply to
If your tumour was in the rectum, the appendix or the small bowel, the thresholds for surgery and for watching are different and often gentler. If your report says adenocarcinoma with neuroendocrine features, rather than a neuroendocrine tumour, you are on the ordinary colon cancer pathway and should read there instead.
Bring the full pathology report, not the summary line, to any second opinion. The grade and the Ki-67 figure are usually on the second page.Questions we are asked
Common questions about neuroendocrine tumours of the colon
Is a carcinoid tumour cancer?
Yes, in the sense that it can grow into the bowel wall and spread. The slowest ones behave so gently that people live with them for decades, which is where the idea that they are harmless comes from. The grade on your report tells you which kind you have.
What symptoms does a colon neuroendocrine tumour cause?
Often none, which is why many are found by chance during a colonoscopy done for something else. Larger ones cause the same signs as any colon tumour: bleeding, a change in bowel habit, a low haemoglobin or pain. Flushing and watery diarrhoea are rare and usually point to liver involvement.
Will I need chemotherapy?
It depends almost entirely on grade. Low-grade tumours rarely need chemotherapy; they are removed, watched, or held with injections. A grade 3 neuroendocrine carcinoma does need chemotherapy, usually a platinum-based combination given at a CION centre, and it should start soon after diagnosis.
What is the monthly injection people talk about?
A somatostatin analogue, such as octreotide or lanreotide. It locks onto receptors on slow-growing tumour cells, calms hormone symptoms and can slow growth for a long time. It is given as a deep injection in the clinic and is not chemotherapy.
What is PRRT and can I get it in Hyderabad?
Peptide receptor radionuclide therapy attaches a radioactive particle to the same molecule used in the injection, so it delivers radiation straight to the tumour cells. It suits some people whose DOTATATE scan lights up. CION coordinates it through nuclear medicine partners when the tumour board recommends it.
Is it inherited?
Colon neuroendocrine tumours are rarely inherited. A few families carry a syndrome, such as MEN1, but those tumours mostly grow in the pancreas, the duodenum and the hormone glands. Your oncologist will ask about the family and suggest a genetics referral only if the pattern fits.
How often will I be scanned afterwards?
Follow-up is tailored to grade and to whether the tumour was removed completely. Slow tumours are checked at longer intervals over many years; faster ones more closely at first. Your oncologist will write the schedule down for you and adjust it as the results come in.
Where do I start if my report says neuroendocrine?
Ask for the full pathology report with the grade and Ki-67 figure, and any scans on disc. Bring them to a medical oncologist. If you are unsure who to see, call the CION helpline and someone will book you into the right clinic and arrange any scans that are still missing.
Meet CION's colon cancer specialists. Bring your colonoscopy, scan or biopsy report.
Our surgical and medical oncologists plan colon cancer care together: which operation, whether chemotherapy is needed, and the follow-up that comes after.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Dr. Muralidhar Muddusetty
MBBS (AIIMS), MS (Surgery) (AIIMS), DNB (Surgical Oncology), MRCS (Edinburgh)
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Sources
- Cancer Research UK — Neuroendocrine cancers
- National Cancer Institute — Gastrointestinal Neuroendocrine Tumors Treatment
- Cancer Research UK — Stages, types and grades of bowel cancer
- National Cancer Institute — Surgical Pathology Reports
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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Has your report said neuroendocrine or carcinoid?
Send us the full pathology report and any scans, and a medical oncologist will explain the grade and what it means for your plan. One helpline serves every CION centre.