FAQ: Inherited Risk

Ask Eve regularly receives questions from people wanting to understand more about inherited risks, genetic testing, and what it means for them if they carry a gene alteration that puts them at a higher risk of a gynae cancer. We have answered your frequently asked questions around inherited cancer risks.

Can I inherit / pass on cancer through my genes?

No you can’t pass on cancer, but you may inherit / pass on a higher risk of developing some cancers through alterations (also known as mutations) in some genes.

So what gene alterations increase the risk of gynaecological cancers?

An alteration in the BRCA1 or 2 genes increases the risk of ovarian cancer, whilst Lynch Syndrome is associated with a higher risk of womb cancer, and to a lesser degree ovarian cancer. 

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 (17-44%), breast (69-72%), and pancreatic cancer and also increases the risk of male breast cancer and prostate cancer. Lynch Syndrome increases your risk of womb (25-60%) and bowel (30-75%) cancer and to a lesser extent ovarian cancer. 

Who is eligible for testing for these genetic changes?

You can be tested on the NHS for these changes if you fit certain criteria. If you are diagnosed with breast or ovarian, or womb or bowel cancer you will be offered genetic testing. You may also be eligible if you have a family history of breast / ovary / prostate cancers (for the BRCA gene) and womb / bowel cancer (for Lynch Syndrome) or a close relative with a genetic alteration. 

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

  • Have a first or second-degree relative with a diagnosis of 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 

If you think you meet any of the criteria, please see your doctor and ask for a referral to your local genetics team where you will see a genetics clinician or genetics counsellor who will go through your family history of cancer and determine your eligibility of testing on the NHS. 

What do I say / what information can I take to my GP to show that I am eligible?

You need to be aware of the history of cancer in your family (inherited risks can come from both your mother or fathers side of the family) ideally across three generations. The doctor will want to know the type of cancer, the age it was diagnosed, if the person is alive or deceased and if they have died, then the age this happened. You also need to have information on ethnicity and history of genetic testing (if any) in the family. 

I’ve asked my GP about testing and they’ve said I’m not eligible / they won’t do it.

Your GP is your first point of contact when looking to see if you are eligible for BRCAtesting 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.

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 turn around time for results?

It depends, if the test is being undertaken for someone with cancer, where results can influence treatment (called diagnostic testing), then clinicians hope to have results within 2 weeks to 2 months. If testing is done for a relative of someone who has a gene alteration, (called predicative testing), the results may take longer.  

Will I receive genetic counselling before and after my test?

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

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

Depending on the type of gene alteration, you may be offered increased monitoring to pick up any cancers early when they are most treatable, this is called surveillance. Risk-reducing surgery is also an option that may be offered to those with a significantly higher risk of some cancers. You can find out more about this in our Guide to Lynch Syndrome and our information on BRCA alterations.

Do you have a panel BRCA test? What does it include?

BRCA testing on the NHS now involves looking for a number of known genes, that when altered may increase the risk of certain cancers. This is known as a panel.

Will they hold my sample and re–test if any new genomic information found that might be useful in my case?

Yes, samples are kept and retested if necessary.

Will they share my data with anyone?

Your data should not be shared without your permission.

If you have any further questions or concerns about hereditary risk, you can speak to our specialist nurse service, Ask Eve on nurse@eveappeal.org.uk, 0808 802 0019.