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CION Cancer Clinics
After an NBN positive result: your next steps | CION Cancer Clinics
For most adults with one faulty NBN copy, what happens next is a counselling appointment, a close look at the family history and perhaps a change to breast screening. Surgery is not usually part of the plan. Nothing needs to be decided this week. This page walks through the steps in order, what might change in your care, and what can safely wait. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- I have tested NBN positive. What happens now?
- What might change in your care?
- What are the steps, one by one?
- Which words on the report matter most?
- What should you do now, and what can wait?
- What can this page not tell you?
- What do people fear after an NBN result that is not true?
- Common questions after an NBN result
The short answer
I have tested NBN positive. What happens now?
Usually, much less than you fear. For most adults with one faulty NBN copy, the next steps are a meeting with a genetic counsellor, a careful look at your family history, and perhaps a change to breast screening. Big decisions such as surgery are not usually part of the plan.
The first days after the result
Reading the words "pathogenic variant" on a report is frightening, and searching online at night often makes it worse. Most of what you will find was written about genes with much higher risk. Nothing needs to be decided this week. The helpful next move is a proper conversation with someone who can read your report.
Why the plan is usually modest
NBN is thought of as a lower-risk gene. The clearest evidence of raised breast cancer risk comes from one fault common in Eastern Europe, and for other faults the evidence is thin. So your family history, more than the gene name, will shape what changes. Some carriers leave the counselling room with no change to their care at all.
First, check your report says one faulty copy. Two faulty copies is a different, childhood condition.Area by area
What might change in your care?
Some of these apply to you, some will not. Your counsellor will tell you which.
Breast screening
Women may be offered earlier or more frequent breast checks if close relatives had breast cancer. Without that history, the usual screening programme often stays the same.
Men's health
Some studies suggest a raised prostate cancer risk. Men can discuss when to start prostate checks with their doctor, especially if relatives were affected young.
If you already have cancer
Your treatment is usually planned on the tumour, as before.
Tell your oncologist
- Before radiotherapy is planned
- Before any new gene test is ordered
- If a relative is newly diagnosed
Family and future children
Close relatives can be tested for your exact fault. If you plan children, testing your partner shows whether a child could inherit two faulty copies.
Not sure whether this applies to you?
Ask an oncologistIn order
What are the steps, one by one?
-
Read the three key details on your report
Is it one faulty copy or two? Is it called pathogenic, likely pathogenic or uncertain? And what is the exact fault? Write these down before your appointment.
-
See a genetic counsellor
The counsellor explains the result, checks what other genes were tested, and answers the questions that matter to you. Counselling in Telugu can be requested.
-
Build the family tree
List relatives on both sides who had cancer, with the type and rough age. Include men and relatives who have died. This often matters more than the NBN result.
-
Agree a screening plan
Based on the fault and your family history, you leave with a clear plan. For many carriers, this matches ordinary screening. For some, it starts earlier.
-
Share the result with relatives
A family letter from your counsellor makes this easier. Each adult relative then decides for themselves whether to be tested.
On your report
Which words on the report matter most?
- Pathogenic
- The laboratory is confident this change stops the gene working.
- Likely pathogenic
- Very probably harmful. In practice it is usually handled the same way as pathogenic.
- Variant of uncertain significance
- The laboratory cannot yet say whether the change matters. It should not change your care.
- Heterozygous
- One faulty copy and one working copy. This is the usual adult result.
- Germline
- Found in your blood or saliva, so present from birth and possibly shared with relatives.
- Reclassification
- A change in how the laboratory labels a variant, as new evidence builds up over time.
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Side by side
What should you do now, and what can wait?
Worth doing soon
Not needed, or can wait
Book a genetic counselling appointment
Deciding on any preventive surgery
Write down your family history
Testing your young children
Tell your oncologist, if you are being treated
Avoiding routine X-rays or scans
Keep copies of your report safely
Buying extra tests online without advice
Being straight with you
What can this page not tell you?
It cannot tell you what your own result means. What your specific variant means is a question for the counsellor who ordered the test. We have described the usual path for a carrier, but your family history may move you off it.
It cannot give you a risk figure you can rely on
Published risk figures for NBN come mostly from one Eastern European fault. Studies of other faults are small, and Indian data are very limited. Guidelines have changed as new evidence arrived and may change again. Your counsellor will explain what is known about your particular fault.
Who this does not apply to
This page is for adults with one faulty copy. If a child has two faulty copies, the next steps are very different and need a paediatric team. If your NBN finding came from a tumour test, it may not be inherited, and that is covered under targeted therapy.
If your report says variant of uncertain significance, nothing on this page needs to change for you yet.Commonly believed
What do people fear after an NBN result that is not true?
"Positive means I have cancer."
A positive result means you carry a gene fault. It says nothing about whether you have cancer now, and most NBN carriers will never develop a cancer because of it.
"I need to decide about surgery straight away."
Preventive surgery is not usually advised for NBN on the result alone. If your family history is very strong, it can be discussed later, calmly, with the right specialists.
"My treatment will have to change completely."
For a cancer you already have, treatment is usually planned on the tumour, as before. Your oncologist simply needs to know the result, especially before radiotherapy.
"This result will stay the same forever."
Understanding of NBN is still growing. The advice for carriers has already been revised. Keep in touch with your counsellor so you hear about changes.
Questions we are asked
Common questions after an NBN result
How soon should I see a counsellor?
There is no emergency, but it is best not to wait months. A few weeks gives you time to gather your family history. If you are in the middle of cancer treatment, tell your oncologist now, so the result is part of the plan from here on.
Will I need MRI breast scans?
Only some carriers do, and mainly those with a strong family history of breast cancer. Many NBN carriers follow ordinary screening. Your counsellor or breast specialist will decide this with you, using the exact fault and your relatives' diagnoses.
Is it safe to have radiotherapy?
For adults with one faulty copy, there is no clear evidence that radiotherapy is unsafe. Your oncologist should still know the result before planning it. The strong radiation sensitivity seen in children with two faulty copies does not apply to carriers.
Should my brothers and sisters be tested?
They can be offered a test for your exact fault. Each has a one in two chance of carrying it. Whether it changes anything for them depends on their own family history and plans. Your counsellor can give you a letter to share with them.
We are planning a baby. What should we do?
Ask about testing your partner. If your partner carries no NBN fault, your child cannot have the childhood syndrome. If your partner does carry one, a counsellor will explain the options, ideally before the pregnancy begins.
Do I have to tell my insurer?
India has no dedicated law on genetic discrimination, and the rules on disclosure are not settled. Read your proposal form carefully and ask your counsellor or an independent adviser before filling it in. Do not guess at an answer.
What if my result is reclassified later?
Laboratories update their calls as evidence grows. An NBN result could be upgraded or downgraded. Keep your contact details current with the laboratory and your clinic, and ask how you would be told. Your plan would then be reviewed.
Who can help me in Hyderabad?
A genetic counsellor or clinical geneticist, working with your oncologist if you are being treated. Call the CION helpline with your report to hand, and we will help you book counselling and explain what to bring.
Your Specialists
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.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Medical Oncologist
Medical Oncologist
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Sources
- National Cancer Institute — Genetics of Breast and Gynecologic Cancers (PDQ) – Health Professional Version
- MedlinePlus Genetics — NBN gene
- NHS — Predictive genetic tests for cancer risk genes
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
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
NBN mutation: which cancers and what riskHow strong the evidence is for each cancerTesting the family for NBNWho to tell first, and how relatives are testedVariant reclassificationWhy a result can change years laterGenetic testing and health insurance in IndiaWhat to know before filling in a proposal form
Talk to us
Just received an NBN result?
Call with your report to hand and we will help you book genetic counselling and explain what to bring. One helpline serves every CION centre.