CION Cancer Clinics
Tested positive for RAD51D: the next steps | CION Cancer Clinics
A positive RAD51D result means a raised risk of ovarian cancer, and to a lesser degree breast cancer. It is not a diagnosis, and nothing needs to be decided today. This page walks through what usually follows: counselling, a breast plan, an ovary decision later in adult life and testing for relatives, and how the plan differs if you already have cancer. 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 RAD51D. What happens now?
- What should be on my list after a positive result?
- What are the next steps, one by one?
- What do the words on a positive RAD51D report mean?
- Does the plan differ if I already have cancer?
- Four fears after a RAD51D result, and what is true
- What this page cannot tell you
- Common questions after a positive RAD51D result
The short answer
I have tested positive for RAD51D. What happens now?
Nothing needs to happen today. A positive RAD51D result means a raised risk of ovarian cancer, and to a lesser degree breast cancer. It does not mean you have cancer. The next steps are a follow-up talk with a genetic counsellor, a written plan for checks and, later in adult life, a decision about the ovaries.
The first few weeks
Most people feel shaken for a while, and that is normal. Use this time to understand the result rather than to make decisions. Ask the counsellor to go over what the variant is, how it was classified and what it means for you at your age.
The first few months
You will usually be referred to a breast specialist and a gynaecologist. Between them they will set when breast checks start and when the ovary conversation should happen. Your relatives can be offered testing at the same time.
If you already have cancer
The result may matter for your treatment now, as well as for your future risk. Tell your oncologist straight away so it can be taken into account.
A positive result starts a plan. It does not start a countdown.Four things to sort out
What should be on my list after a positive result?
Most of what follows fits into four areas. You do not need to finish them all at once.
Understand the result
Confirm the variant is classed as pathogenic or likely pathogenic. Ask for a copy of the full report and keep it somewhere your family can find it.
A breast plan
Breast checks usually start from around forty, with a yearly mammogram and breast MRI considered. A strong family history can bring this forward.
An ovary plan
Ovarian cancer cannot be screened for reliably, so a gynaecologist will discuss preventive removal of the ovaries and tubes, usually in the mid to late forties.
Things that shape the timing
- Whether your family is complete
- The ages at which relatives were diagnosed
- How you feel about early menopause
Your family
Parents, brothers, sisters and adult children each have a one in two chance of carrying the fault. A family letter makes it easier to tell them.
Not sure whether this applies to you?
Ask an oncologistIn order
What are the next steps, one by one?
Post-test counselling
A follow-up session to explain the result, answer questions and write down a plan. Bring someone with you if that helps you remember.
Referrals
You are referred to a breast specialist and a gynaecologist. If you are under forty, the first visit may simply set dates for later.
A family letter
The counsellor gives you a letter naming the gene and variant, so relatives can ask for the right test. It can be written in Telugu.
A written schedule
You leave with a list of which checks happen when. Keep it with the report and review it each year.
A review over time
Guidance on RAD51D is still developing. Ask to be told if advice changes, and see your team if your family history changes.
On your report
What do the words on a positive RAD51D report mean?
- Pathogenic
- The change is known to break the gene. This is what a positive result means.
- Likely pathogenic
- Very probably breaks the gene. It is handled the same way as pathogenic when planning care.
- Heterozygous
- You carry one faulty copy and one working copy. This is the usual finding.
- Post-test counselling
- The session after a result where it is explained and a plan is made.
- Risk-reducing surgery
- Preventive removal of the ovaries and fallopian tubes to lower ovarian cancer risk.
- Surgical menopause
- Menopause that starts straight after the ovaries are removed, rather than gradually.
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Does the plan differ if I already have cancer?
Commonly believed
Four fears after a RAD51D result, and what is true
Preventive surgery is usually discussed in the mid to late forties, not straight after a result. It is always a choice, and there is time to think it through.
Nobody chooses the genes they pass on. Knowing about the fault gives your children something you did not have, which is the chance to plan.
Carriers marry and have children. The main effect on family planning is timing, because ovary surgery is usually discussed once a family is complete.
Regular breast checks can find cancer early, and preventive surgery lowers ovarian risk considerably. A positive result gives you options that people without the result do not have.
Being straight with you
What this page cannot tell you
It cannot tell you what your own result means for you. What your specific variant means is a question for the counsellor who ordered the test. They know your family history, your age and whether you have had cancer, and all of these change the plan.
It cannot make the surgery decision for you
Preventive surgery brings real trade-offs, including early menopause. Whether and when to have it depends on your health, your family plans and your own views. Take your time, and ask for a second opinion if you want one.
Who this does not apply to
If your report shows a variant of uncertain significance in RAD51D, you have not tested positive. The steps on this page do not apply, and your care should follow your family history instead.
Worry, poor sleep and low mood after a result are common. Tell your counsellor if they are not easing.Questions we are asked
Common questions after a positive RAD51D result
How urgent is a positive RAD51D result?
It is not an emergency. The raised risk builds slowly over adult life. Book post-test counselling within the next few weeks and see the specialists when they are offered. The exception is if you already have cancer, when your oncologist should know promptly.
Will I need my ovaries removed?
It will be discussed, usually in the mid to late forties, because ovarian cancer cannot be screened for reliably. It is your choice. Your gynaecologist will explain the benefits, the effects of early menopause and how to prepare.
Does RAD51D mean I should have a mastectomy?
Usually not. Breast risk with RAD51D is moderate, and regular breast checks are the standard approach. Preventive breast surgery is rarely suggested on the gene alone. A very strong family history may change that discussion.
Does the result change my cancer treatment?
It can. Some ovarian cancers linked to repair gene faults respond better to a group of medicines called PARP inhibitors. Your oncologist decides whether this applies, using your tumour and your wider health. Testing the tumour itself is covered on our targeted therapy pages.
Should I tell my employer or insurer?
There is no general duty to tell an employer. Insurance is more complex, because India has no dedicated law on genetic discrimination. Read the questions on any proposal form carefully and answer honestly. Your counsellor can talk this through.
Can I still have children?
Yes. Each child has a one in two chance of inheriting the fault. Some couples look into testing embryos, which is legal in India under strict rules. Your counsellor can explain the options before you plan a pregnancy.
My sister tested negative. Does that mean my result is wrong?
No. Each sibling has a separate one in two chance, so one can carry the fault and another not. Your result stands. Her negative result means her own risk from RAD51D is back to the general level.
Who do I call first?
The counsellor or doctor who ordered the test. If you are not sure who that was, or you need help finding a counsellor, call the CION helpline. Counselling can be given in Telugu.
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
- National Cancer Institute — Genetics of Breast and Gynecologic Cancers (PDQ) - Health Professional Version
- NCCN — Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate
- National Cancer Institute — Ovarian, Fallopian Tube, and Primary Peritoneal Cancer Prevention (PDQ) - Patient Version
- NHS — Predictive genetic tests for cancer risk genes
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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Just received a positive RAD51D result?
A genetic counsellor can go through your report with you and help set out a plan, in Telugu if you prefer. One helpline serves every CION centre.