Medical Oncologist
CION Cancer Clinics
A positive RET result: the steps that follow | CION Cancer Clinics
A positive RET result means you carry an inherited fault that makes medullary thyroid cancer very likely. It also means doctors can act before that happens. The next steps are a counselling visit, blood tests for calcitonin and adrenal hormones, a neck scan and a plan for thyroid surgery. This page walks through each step and the questions worth asking. 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
- What does a positive RET result mean for you right now?
- Which specialists will you see, and why?
- What happens after a positive RET result, step by step?
- The tests and terms you will meet
- What families fear, and what usually happens
- What this page cannot tell you
- Four things people assume after a RET result
- Common questions after a positive RET result
The short answer
What does a positive RET result mean for you right now?
It means you carry an inherited fault that makes medullary thyroid cancer very likely if the thyroid stays in place. It does not mean you have cancer today. What happens next depends on your age, the exact spot of the change in the gene and what your first blood tests show.
If you already have medullary thyroid cancer
The result tells your team the cancer is inherited. That changes the plan in two ways. Before any operation, you are checked for an adrenal tumour. Your brothers, sisters and children can also now be tested for the exact same change.
If you are well and were tested because of a relative
You are a carrier. The aim now is to remove the thyroid before a cancer forms, or while any cancer is still small and inside the gland. For most adult carriers that operation is planned within months, not years. The team will explain why for your variant.
What to bring to the first appointment
Bring the original report, not a photo of one page. Bring any thyroid scans, blood results and discharge papers you already have. Write down who in the family had thyroid problems, high blood pressure that was hard to control, kidney stones or an early unexplained death, on both sides. These details help the counsellor judge the pattern quickly and save you a second trip from the district.
Nothing needs to happen tonight. The first step is a calm appointment with a counsellor who can read your report with you.Your care team
Which specialists will you see, and why?
RET care is shared between several people. Knowing who does what saves repeat visits and repeat travel from the districts.
Genetic counsellor
Explains your variant and its risk level, draws the family tree and plans who else should be tested. Counselling in Telugu can be arranged, and a family member can sit in with you.
Helps with
- Telling relatives
- Testing children
- Marriage and pregnancy questions
Endocrinologist
Orders the hormone tests and reads them over the years. This is usually the doctor you will see most often.
Tracks
- Calcitonin and CEA levels
- Adrenal hormones
- Blood calcium
Thyroid surgeon
Removes the thyroid, and the neck glands if needed. Choose a surgeon who does this operation often, because the parathyroid glands and the voice nerves lie very close.
Oncologist
Joins the team if cancer has already spread beyond the thyroid. Tablet medicines that target RET directly now exist for advanced disease. Most carriers found through family testing never need this step, because surgery comes first.
Not sure whether this applies to you?
Ask an oncologistThe first few months
What happens after a positive RET result, step by step?
Confirm the result and the codon
The counsellor checks the exact variant and its risk grade. This grade shapes every step that follows.
Check the adrenal glands first
A blood or urine test looks for adrenaline-like hormones. An unnoticed adrenal tumour can cause a dangerous rise in blood pressure during surgery, so this always comes before the thyroid.
Measure calcitonin and scan the neck
Calcitonin and CEA blood tests and a neck ultrasound show whether the thyroid has started to change and whether any neck glands look involved.
Plan the thyroid operation
The whole thyroid is removed. If calcitonin is high or the scan shows enlarged glands, nearby lymph nodes may be removed too.
Start daily thyroid hormone
A small tablet replaces the hormone the thyroid made. Blood tests adjust the dose, and follow-up then moves to regular checks.
On your reports
The tests and terms you will meet
- Calcitonin
- A hormone made by the thyroid C cells. A rising level is the earliest sign of change and guides the timing of surgery.
- CEA
- A second blood marker. It is read alongside calcitonin, mainly to judge whether any cancer may have spread.
- Metanephrines
- Breakdown products of adrenaline-like hormones. High levels in blood or urine point to an adrenal tumour.
- Total thyroidectomy
- An operation to remove the whole thyroid gland. For RET carriers, removing only half is not enough.
- Parathyroid glands
- Four tiny glands behind the thyroid that control blood calcium. In MEN2A they can become overactive.
- Thyroxine
- The thyroid hormone tablet taken once a day for life after the gland is removed.
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Side by side
What families fear, and what usually happens
The fear
What usually happens
I will need chemotherapy
Surgery is the main step for carriers
I will lose my voice
Voice problems are uncommon with an experienced surgeon
I will be on many medicines
Usually one thyroid tablet a day
I cannot have children
You can, with the pregnancy planned alongside the team
My children will certainly carry it
Each has a one in two chance, and a test settles it
Being straight with you
What this page cannot tell you
It cannot tell you when your operation should happen. That depends on your variant's risk grade, your calcitonin level and your scan, read together by your endocrine team. What your specific variant means is a question for the counsellor who ordered the test.
It cannot read an uncertain result
If your report says variant of uncertain significance, it is not a positive result. The laboratory does not yet know whether that change matters. It should not lead to thyroid surgery on its own. Ask how you will be told if it is ever reclassified.
Who this does not apply to
If RET appeared on a tumour report, for example in lung cancer, it is a change inside the tumour and is not inherited. That result guides drug choice and belongs under targeted therapy. Relatives of that patient do not need RET testing because of it.
Costs for surgery and follow-up vary. Ask the billing desk whether Aarogyasri or Ayushman Bharat covers any part of your care.Commonly believed
Four things people assume after a RET result
"We can wait until a lump appears, then operate."
By the time a lump is felt, the cancer may already be in the neck glands. The whole point of knowing early is to operate before that stage.
"Any general surgeon can take out a thyroid."
They can, but outcomes are better with a surgeon who does thyroid work often. The parathyroid glands and voice nerves are easy to injure, and a clean first operation matters.
"If it comes back, radioactive iodine will deal with it."
Medullary thyroid cancer does not take up iodine, so that treatment does not work for it. This is another reason surgery is timed carefully.
"I feel well, so the adrenal tests can wait."
An adrenal tumour can stay silent for years, then cause a dangerous surge during surgery or childbirth. Regular tests catch it before either.
Questions we are asked
Common questions after a positive RET result
Do I need surgery straight away?
Not usually on the same day, but most adult carriers are advised to have the thyroid removed soon rather than waiting. The adrenal check comes first. Your team will set the timing from your variant, calcitonin level and neck scan.
Will I need tablets for the rest of my life?
Yes, one thyroid hormone tablet every day. It replaces what the gland made, and most people feel normal on the right dose. If the parathyroid glands are affected by surgery, calcium tablets may be needed too.
What if my calcitonin is already high?
It suggests the thyroid has started to change, and there may already be a small cancer. The surgeon may then remove nearby lymph nodes as well. More scans may be advised to check nothing has spread further.
How often will I need check-ups after surgery?
Regularly, and for life, though the gap grows once results settle. Checks include calcitonin, adrenal hormones and, in MEN2A, calcium. Many blood tests can be drawn nearer home and sent to your team.
Should I tell my brothers and sisters?
Yes. Each full sibling has a one in two chance of carrying the same change. A simple family test gives them a clear answer. The counsellor can give you a letter to share if the conversation feels difficult.
What about my young children?
RET is one of the few genes tested in childhood, because early thyroid surgery protects children who carry it. The right age depends on your variant. Ask your counsellor about testing your children at your first visit.
Can I still get married and have children?
Yes. Many carriers do. Discuss disclosure with your counsellor, who can help you explain the result simply. Pregnancy needs an adrenal check first, and options to avoid passing the fault on can be discussed.
Does this affect my health insurance?
India has no specific law on genetic discrimination in insurance. Read your policy terms and declare honestly when asked. Raise this with your counsellor, who can explain what other families in your position have done.
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
- GeneReviews (NCBI) — Multiple Endocrine Neoplasia Type 2
- National Cancer Institute — Genetics of Endocrine and Neuroendocrine Neoplasias (PDQ)
- MedlinePlus Genetics — Multiple endocrine neoplasia
- MedlinePlus Genetics — RET gene
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.
Talk to us
Just received a positive RET result?
Bring the report and tell us who else in the family has been tested. We will help you arrange counselling and the first tests in the right order. One helpline serves every CION centre.