FAQs on inherited cancer risks

We have answered your top questions about inherited cancer risks and genetic testing.

Genes are made up of DNA. They are found in almost every cell in our body. They contain the information our body needs to grow and work correctly. Genes are inherited. You get half from each parent. Any biological children you may have would inherit half of their genes from you. Sometimes, there are changes or alterations on a gene that can raise the risk of certain cancers.

Can I inherit / pass on cancer through my genes?

No, you cannot pass on cancer. You can inherit / pass on a higher risk of developing some cancers. This is through changes to genes called alterations or mutations. 

So what gene alterations raise the risk of gynaecological cancers?

An alteration in the BRCA1 or BRCA2 genes raises the risk of ovarian cancer. An alteration called lynch syndrome raises the risk of womb cancer. Lynch syndrome also raises the risk of ovarian cancer (but less so).

How much of a risk do these genes put me at?

Alterations on the BRCA genes put women and people with gynae organs at a higher risk of ovarian and breast cancer. The risk of ovarian cancer goes up to 35-65%. The risk of breast cancer goes up to 45-65%. It also raises the risk of pancreatic cancer. In men and people with a prostate it raises the risk of male breast cancer and prostate cancer.

Lynch syndrome raises your risk of womb and bowel cancer. The risk of womb cancer goes up to 1 in 2. The risk of bowel cancer goes up to 8 in 10. Lynch syndrome also raises the risk of ovarian cancer, but less so.

Who is eligible for genetic testing?

You can be tested on the NHS for these changes if you fit certain criteria. You will be offered genetic testing if you are diagnosed with breast, ovarian, womb or bowel cancer. You may also be eligible for testing for a BRCA gene alteration if you have a family history of breast, ovarian or prostate cancer.

You may eligible for testing for lynch syndrome if you have a family history of bowel and womb cancer. If you have a close relative with a gene alteration such as a parent, sibling or child, you may also be eligible for genetic testing. 

In England and Wales, changes to genetic testing guidelines for ovarian cancer mean you will be eligible for testing if you:

· Have a first or second-degree relative with ovarian cancer (mother, sister, daughter, grandparent, aunt, niece, or half-sister from either your mum or dad’s side of the family)

· Have Jewish ancestry (at least one grandparent on either side of the family)

· Have a blood relative (any gender) who has been found to have a gene alteration

· Anyone who has been diagnosed with ovarian cancer who has not had genetic testing.

If you think you meet any of the criteria, please see your doctor. Ask for a referral to your local genetics team. Here you will see a genetics specialist or genetics counsellor who will go through your family history of cancer and decide if you are eligible for testing.

What do I say to my GP to show that I am eligible?

You need to be aware of the history of cancer in your family. Ideally across three generations. Inherited risks can come from your mother or father’s side of the family.

The doctor will want to know:

· The type of cancer

· The age they were diagnosed

· If the person is alive or has died

· If they died then the age of death

· Their ethnicity

· If they had genetic testing.

My GP said I’m not eligible for testing. What can I do?

Your GP is your first point of contact to see if you are eligible for genetic testing on the NHS. Your GP will refer you to Clinical Genetics if you fulfil the eligibility criteria. If they are unsure, they can still ask the clinical genetics service for advice. You can also call or email our Ask Eve nurses for advice on nurse@eveappeal.org.uk and 0808 802 0019.

Can I get genetic testing done privately?

Yes. There are many companies offering genetic testing these days. Not all offer the same service and quality.

What is the turnaround time for results?

It depends. If the test is being done after you have been diagnosed with cancer, you may have the results in two weeks to two months. This is called diagnostic testing. The results of your test can influence what treatment is best for you. If testing is done for a relative of someone who has a gene alteration, the results may take much longer. This testing is called predicative testing.

Will I get genetic counselling before and after my test?

You should ideally get counselling before and after your test. This is mandated in the NHS. Some private providers may only offer counselling after the test.

What sort of risk-reducing measures can be taken if I test positive?

This depends on the type of gene alteration you have. You may be offered monitoring to pick up any cancer early when it is most treatable. This is called surveillance. Risk-reducing surgery is also an option. It may be offered to those with a much higher risk of some cancers.

What is a panel BRCA test?

BRCA testing on the NHS now involves looking at a number of genes. These are all genes which if altered may raise the risk of certain cancers. This is called a panel test.

Will they hold my sample and re–test if any new information becomes available?

Yes, samples are kept to be retested if needed.

Will they share my data with anyone?

Your data should not be shared without your permission.

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