Medical Oncologist
CION Cancer Clinics
Colectomy when bowel cancer runs in the family | CION Cancer Clinics
In Lynch syndrome and FAP, an inherited gene fault puts the whole colon at risk, not just the part with the tumour. So surgeons often discuss removing most or all of the colon to lower the chance of a second cancer. The trade is looser, more frequent motions for life. This page explains the options, who each suits, and what your team weighs. CION Cancer Clinics’ surgical oncologists in Hyderabad can talk this through with you.
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Medically reviewed by Dr. Muralidhar MuddusettyConsultant Surgical Oncologist · MBBS (AIIMS), MS (Surgery, AIIMS), DNB (Surgical Oncology), MRCS (Edinburgh) · last reviewed September 2026, next review due September 2027
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On this page
- Why is the operation different for Lynch syndrome and FAP?
- Which operations are used, and what each leaves you with?
- Lynch syndrome and FAP, compared
- How is the decision reached?
- Four things families tell us about inherited bowel cancer
- Words you will meet, in plain language
- What this page cannot tell you
- Common questions about colectomy for inherited syndromes
The short answer
Why is the operation different for Lynch syndrome and FAP?
Because the problem is not one tumour but the whole colon. In Lynch syndrome and familial adenomatous polyposis (FAP), an inherited gene fault means every part of the large bowel is prone to growing new cancers. So the surgeon often removes more of the colon than the tumour alone would need, to lower the chance of a second cancer in what is left.
The two conditions, briefly
Lynch syndrome is a fault in one of the genes that repair mistakes in DNA. People with it get bowel cancer younger than usual, and are also at higher risk of cancers of the womb, ovary and stomach. FAP is a fault in a gene called APC. It causes hundreds of small growths, called polyps, to carpet the colon from the teens, and some will turn into cancer if the colon stays.
Why "extended" and not "segmental"
A segmental colectomy removes the length of bowel around the tumour and joins the ends. An extended colectomy removes most or all of the colon. The trade is fewer future cancers in exchange for looser, more frequent motions for life. Which trade is right depends on the person.
If your report says "MMR deficient" or "MSI high", or if bowel cancer runs in your family, ask whether genetic testing has been done before the operation is planned.The options
Which operations are used, and what each leaves you with?
From least to most extensive. The surgeon and the genetics team choose together, and your view matters.
Segmental colectomy
Only the part of the colon around the cancer is removed. Bowel habit is close to normal afterwards. The rest of the colon must be checked by colonoscopy for life.
Often considered for
- Older people with Lynch syndrome
- Anyone who would struggle with loose motions
Subtotal or total colectomy with ileorectal join
Most or all of the colon is removed and the small bowel is joined directly to the rectum. Motions are looser and more frequent, but far less bowel is left to grow a new cancer.
Often considered for
- Younger people with Lynch syndrome
- FAP where the rectum has few polyps
Proctocolectomy with a pouch
Colon and rectum are both removed. A pouch is made from the end of the small bowel and joined to the anus, so you still pass motions the normal way, though more often.
Often considered for
- FAP where the rectum is full of polyps
Proctocolectomy with a permanent ileostomy
Colon, rectum and anus are removed and a permanent stoma is made. Chosen when a pouch is not possible or not wanted.
None of these is "the right one". Each is right for a different person.Not sure whether this applies to you?
Ask an oncologistSide by side
Lynch syndrome and FAP, compared
Lynch syndrome
FAP
A fault in a DNA repair gene (MLH1, MSH2, MSH6 or PMS2)
A fault in the APC gene
Few polyps, but each one turns to cancer faster than usual
Hundreds to thousands of polyps carpeting the colon
Cancer usually found in the forties or fifties, sometimes younger
Polyps from the teens; surgery is often planned before any cancer
Surgery is usually prompted by a cancer that has been found
Surgery is usually preventive, timed around the polyp burden
Also raises the risk of womb, ovary, stomach and urinary cancers
Also causes polyps in the stomach and small bowel, and some growths outside the gut
Each child has an even chance of inheriting the fault
Each child has an even chance of inheriting the fault
The pathway
How is the decision reached?
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Suspicion
A young age at diagnosis, a strong family history, or a tumour test showing a faulty repair system. Any of these should lead to genetic testing before the operation is fixed.
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Genetic counselling and testing
A blood test looks for the gene fault. A counsellor explains what a positive result means for you and your family.
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Mapping the bowel
A full colonoscopy, and for FAP often an endoscopy of the stomach and small bowel too. The number and position of polyps shapes the choice of operation more than anything else.
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Tumour board and the conversation
Surgeon, oncologist, geneticist and gastroenterologist discuss the case together. You are then told what they recommend, and what each option means for bowel habit, fertility and follow-up.
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The operation, then lifelong checks
Whatever is removed, what remains is checked regularly for the rest of your life, and the rest of the family is offered testing.
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Commonly believed
Four things families tell us about inherited bowel cancer
"If the whole colon is removed, the cancer risk is gone."
It is much lower, not gone. Any rectum left behind still needs checking, and Lynch syndrome raises the risk of cancers outside the bowel that surgery on the colon does nothing for. Follow-up continues for life.
"Removing the whole colon means a bag for life."
Usually not. The small bowel can be joined to the rectum, or made into a pouch joined to the anus, and motions pass the normal way. A permanent stoma is one option among several, chosen for particular reasons.
"Testing the children will only frighten them."
A child who carries the fault can start colonoscopy at the right age and have any polyps removed before they turn into cancer. A child who does not carry it is spared years of worry and scopes. Genetic counsellors are skilled at this conversation.
"Our family has no cancer, so it cannot be inherited."
The gene fault can be new in one person, or can have passed quietly through relatives who died of other causes or were never diagnosed. The tumour test and the blood test answer the question; the family tree alone does not.
On your report
Words you will meet, in plain language
- MMR deficient / MSI high
- A test on the tumour showing its DNA repair system is faulty. It does not prove Lynch syndrome on its own, but it is the usual reason a blood test is then offered.
- Ileorectal anastomosis (IRA)
- The join between the end of the small bowel and the rectum after the colon is removed.
- Ileal pouch (IPAA)
- A reservoir made from small bowel and joined to the anus, so motions are passed the normal way after the rectum is removed.
- Surveillance
- Regular colonoscopy or other checks of what remains, for life. The interval is set by your team.
Being straight with you
What this page cannot tell you
It cannot tell you which operation you should have. That depends on which gene is faulty, how many polyps there are and where, your age, how well your bowel and the muscles around the anus work now, whether you plan to have children, and what you are willing to live with. Your team has all of that; a page has none of it.
Who an extended colectomy may not suit
Someone older, for whom the remaining years of cancer risk are fewer and the cost in bowel habit is felt every day. Someone whose muscle control is already weak, who may not cope with looser motions. Someone with other serious illness. For these people a segmental operation with careful colonoscopy afterwards can be the more sensible choice.
Questions worth asking
Has the gene fault been confirmed by a blood test? How many polyps are in the rectum? What will my bowel habit be like with each option, a year on? How often will I need a colonoscopy afterwards?
Ask for the genetics report in writing. Your brothers, sisters and children will need it.Questions we are asked
Common questions about colectomy for inherited syndromes
Does everyone with Lynch syndrome need the whole colon removed?
No. It is one option, weighed against a segmental operation with regular colonoscopy afterwards. Younger people are more often advised the extended operation because they have more years of risk ahead. Older people, or those who would find loose motions hard to live with, are often advised the smaller operation. The choice is made with you.
Will I have a stoma bag?
Often not. After the colon is removed the small bowel can be joined to the rectum, and after the rectum is removed a pouch can be joined to the anus. A temporary stoma is common while a pouch heals. A permanent stoma is chosen only for specific reasons, and your surgeon will tell you if that is likely in your case.
What will my bowel habit be like without a colon?
Looser and more frequent, because the colon's job of soaking up water is gone. Most people settle to several soft motions a day within months, helped by diet and sometimes by medicines that slow the bowel. A pouch behaves similarly. It is a real change, so ask about it honestly.
Can my children be tested, and when?
Yes. For Lynch syndrome, testing is usually offered in early adulthood, before colonoscopy would need to start. For FAP, where polyps begin in the teens, testing is offered earlier. A genetic counsellor will advise on timing for your family.
Does the operation affect fertility or pregnancy?
Removing the colon alone does not usually affect fertility. Removing the rectum and making a pouch involves surgery deep in the pelvis and can lower fertility in women, which is one reason timing and choice of operation are discussed carefully with younger patients. Raise it before the operation, not after.
Do I still need colonoscopy after the whole colon is out?
Yes, if any rectum remains, and a pouch is also checked with a scope from time to time. For Lynch syndrome, checks for cancers outside the bowel continue as well. The interval is set by your team. Surveillance is lifelong for these conditions, whatever operation was done.
Is chemotherapy still needed after an extended colectomy?
That depends on the stage of the cancer that was found, not on how much colon was removed. Tumours with a faulty repair system can respond differently to standard chemotherapy. The medical oncologist decides this from the pathology report.
Is genetic testing and the surgery covered by Aarogyasri or insurance?
The operation for a diagnosed cancer is usually covered under Aarogyasri, CGHS, ECHS, EHS and cashless insurance. Genetic testing and preventive surgery are covered unevenly and vary by scheme and policy. Call the helpline with your card details and we will check both before anything is booked.
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Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Medical Oncologist
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Dr. Muralidhar Muddusetty
MBBS (AIIMS), MS (Surgery) (AIIMS), DNB (Surgical Oncology), MRCS (Edinburgh)
Surgical Oncologist
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Dr. Vinay Mamidala
MBBS, MS(General Surgery), M.Ch(Surgical Oncology), FMAS, FARIS(Ongoing)
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MBBS, MS (General Surgery), DrNB (Surgical Oncology), FALS Oncology
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Sources
- Cancer.Net — Lynch Syndrome
- Cancer.Net — Familial Adenomatous Polyposis
- National Cancer Institute — Genetics of Colorectal Cancer (PDQ)
- Cancer Research UK — Bowel cancer risks and causes
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.
Keep reading
Related pages
Right, Left, Sigmoid and Total ColectomyHow each type of colectomy differs in what is removedBowel Habits After ColectomyWhat looser, more frequent motions are like day to dayTemporary vs Permanent Stoma After Bowel SurgeryWhen a stoma is needed after a pouch operationColonoscopy Follow-Up After ColectomyThe lifelong checks on what remains
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