CION Cancer Clinics
After a positive MSH2 result: your next steps | CION Cancer Clinics
A positive MSH2 result means you have Lynch syndrome and a raised risk of some cancers. It does not mean you have cancer, and nothing has to happen today. The next steps are a follow-up counselling session, a written plan of checks and a talk about which relatives to tell. This page walks through the first year, what changes and what stays the same. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
On this page
- I have tested positive for MSH2. What happens now?
- What should be on my list in the first year?
- What does the path from result to routine look like?
- What do the terms in the next conversation mean?
- What changes, and what does not
- What this page cannot tell you
- Four fears after a positive result, and what is true
- Common questions after a positive MSH2 result
The short answer
I have tested positive for MSH2. What happens now?
Nothing has to happen today. A positive MSH2 result means you have Lynch syndrome and a raised risk of certain cancers. It does not mean you have cancer. The next steps are a follow-up session with your genetic counsellor, a written plan of checks, and a conversation about which relatives to tell.
The first few weeks
Your counsellor will go through the report with you, confirm that the change is classed as harmful, and explain what it means at your age. You should leave with a written schedule, starting with a colonoscopy if one is due. Women are also referred to a gynaecologist who knows Lynch syndrome. Many people feel shocked or guilty at first, especially parents. That is normal and it usually eases once there is a plan.
If you already have cancer
The result can shape your treatment. It may affect how much bowel a surgeon suggests removing, and tumours with failed mismatch repair often respond well to immunotherapy. Your oncologist will explain whether any of this applies to your cancer and its stage. Tumour testing to choose drugs is covered on our targeted therapy pages.
Finding out is the hard part. From here, the plan is mostly about regular checks.Your first year
What should be on my list in the first year?
Four jobs, roughly in this order. None of them needs to be done in a single week.
Understand the result
Attend the post-test session and ask every question you have. Take someone with you to listen and take notes.
Worth asking
- Is the change pathogenic or likely pathogenic?
- Which checks do I need, and from when?
Book the checks
Colonoscopy comes first. Gynaecology review, stomach endoscopy and urine tests follow, depending on your age and sex. Ask whether several can be done on one visit.
Tell the family
Your brothers, sisters, parents and adult children each have a one in two chance of carrying the same fault. A family letter from your counsellor makes the conversation easier.
Keep the paperwork safe
Store the full report where you and your family can find it years from now. Relatives, and your own future doctors, will need the exact wording.
Not sure whether this applies to you?
Ask an oncologistStep by step
What does the path from result to routine look like?
Post-test counselling
A session to explain the result, your risks and your options. Bring your family history and the full report.
A written surveillance plan
Your counsellor sets out which checks you need and when. Ask for it on paper, with a due date beside each one.
The first checks
Usually a colonoscopy, plus gynaecology review for women. Growths found at this stage are generally removed during the test.
Settling into a rhythm
After the first year, most carriers have a colonoscopy every one to two years and a regular review. For most people, it becomes part of ordinary life.
Words you will hear
What do the terms in the next conversation mean?
- Post-test counselling
- The appointment after your result, where it is explained and a plan is made.
- Surveillance
- Regular checks to find a cancer early, or to remove growths before they become one.
- Risk-reducing surgery
- Removing an organ to lower the chance of cancer there. For MSH2 this mainly means the womb and ovaries.
- Chemoprevention
- Taking a medicine to lower cancer risk. In Lynch syndrome, this usually means daily aspirin.
- Cascade testing
- Offering the test to relatives one step at a time, starting with the closest.
- Likely pathogenic
- A change that is very probably harmful. It is managed the same way as a pathogenic one.
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Side by side
What changes, and what does not
Being straight with you
What this page cannot tell you
It cannot tell you what your own result means. The exact change, how it is classified, and your family history all shape the advice. What your specific variant means is a question for the counsellor who ordered the test.
It cannot make the family decisions for you
Whether to tell in-laws, when to raise it before a marriage, and how to talk to children are personal decisions. India has no dedicated law on genetic discrimination in insurance, which some families weigh before telling anyone outside the household. A counsellor can help you think it through, in Telugu if you prefer.
Who this does not apply to
If your report shows an MSH2 variant of uncertain significance, you have not tested positive, and this plan does not apply yet. If your report names EPCAM rather than MSH2, the plan is similar but not identical.
Commonly believed
Four fears after a positive result, and what is true
It means a raised risk. Many carriers never develop cancer, and those who do are often found early because they are being watched.
Nothing needs to be removed urgently. Surgery for the womb and ovaries is one option among several, usually discussed once a woman's family is complete.
You can do both. Each child has a one in two chance of inheriting the fault, and a counsellor can explain the choices available before and during pregnancy.
A gene fault cannot be corrected or reversed, but the risk can be managed. Regular colonoscopy is one of the most effective cancer checks there is.
Questions we are asked
Common questions after a positive MSH2 result
How soon do I need my first colonoscopy?
If you are past your early twenties and have never had one, it should be arranged in the coming weeks, not years. It is not an emergency. If you had one recently, your team will count forward from that date.
Will I definitely need surgery?
No. For most carriers the plan is checks, not surgery. Women are offered a discussion about removing the womb and ovaries, usually after their family is complete. It is a choice made with a gynaecologist, weighing the benefits against early menopause and its effects.
Should I take aspirin?
Daily aspirin has good evidence for lowering bowel cancer risk in Lynch syndrome. It is not safe for everyone, because of bleeding and stomach problems. Do not start it on your own. Ask your doctor whether it suits you and what dose they recommend.
Do I have to tell my employer or my in-laws?
There is no general requirement to tell an employer. Telling in-laws is a family decision that depends on your situation. Relatives who share your blood, however, have a real reason to know, because they can be tested and protected.
Can diet or exercise lower my risk?
A healthy weight, regular activity, not smoking and less processed meat help everyone's bowel health. They do not replace colonoscopy. Be wary of any product or programme that claims to undo a gene fault, because none can.
Will government schemes pay for my checks?
Coverage under Aarogyasri, Ayushman Bharat and private insurance varies by scheme, by test and by hospital. Ask the insurance desk at your centre before booking, and keep your gene report ready. Your counsellor can write a letter explaining why the checks are needed.
I feel guilty that my children might carry this. Is that normal?
Very normal, and very common among parents. You did not choose the fault and could not have prevented it. Knowing about it gives your children the chance of early checks. Your counsellor can also put you in touch with support if the feeling does not ease.
Where do I start after the result?
Book the post-test counselling session first, then the colonoscopy. Write down your questions beforehand and take someone with you. Call the CION helpline if you are not sure who is coordinating your care.
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
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)
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Sources
- GeneReviews (NCBI) — Lynch Syndrome
- National Cancer Institute — Genetics of Colorectal Cancer (PDQ)
- MedlinePlus Genetics — Lynch syndrome
- Cancer Research UK — Lynch syndrome
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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Bring your report and your questions, and we will help you set out the first checks and the people to see. One helpline serves every CION centre.