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 all of your frequently asked questions around inherited risk.

Can I inherit / pass on cancer through my genes?

No, 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 BRCA 1 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?

Mutations on the BRCA genes put women at a higher risk of both ovarian (17-44%), breast (69-72%) cancers, and pancreatic cancer and also increases the risk of male breast cancer, prostate 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. Essentially if you have a strong family history of breast / ovary / prostate cancers (for the BRCA gene) and womb/colon cancer (for Lynch Syndrome) or a first degree relative with a genetic alteration, you are likely to be eligible for testing.

If you have Ashkenazi Jewish ethnicity and have two first degree relatives with a BRCA alteration related cancer, particularly if the breast cancer is under 50 years you will be eligible for testing.

If you fulfill any of the above conditions, please see your doctor and ask for a referral to your regional genetics centre 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. The NHS offers genetic testing for BRCA mutations to those who have a 1 in 10 chance of carrying a BRCA mutation on the basis of their personal or family history of cancer.

Population testing is not currently available on the NHS. Eve Appeal funded research led by Dr Manchanda is trying to influence this policy for the Jewish population.

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 3 generations. The doctor will want to know the type of cancer, the age of onset of cancer, of the person is alive or deceased and if deceased then the age of death. You also need to have information on ethnicity and history of genetic testing (if any) undertaken 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 BRCA testing on the NHS. Your GP should be able to access the latest testing criteria or referral criteria for the regional genetics service. If you fulfil these criteria your GP should be able to make a referral.

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 TAT ( turn -around tim ) for results?

Results can take any time between 4 weeks to 4 months to come back, some providers have quicker or slower turn around times.

Will I receive genetic counselling before and after my test?

You should ideally receive some counselling before and after your test. This would definitely happen on the NHS. Some private providers may however only offer counselling after the test.

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

Risk-reducing surgery is an option to those with a significantly higher risk of cancer – this means removing the organs at risk, a double mastectomy to remove both breasts or an oophorectomy to remove the ovaries. Increased screening (mammographies) are also offered to women at a higher risk of breast cancer from the BRCA gene alteration. Angelina Jolie, for example, had her breasts and then later her ovaries removed to reduce the likelihood of getting breast and ovarian cancer after testing positive for an altered BRCA 2 gene.

A preventative hysterectomy will be offered if you have Lynch syndrome.

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

There is a panel test available for genetic screening, which can look for several known gene alterations that put you at a higher risk of certain cancers. If this is something you would like to know more about you can speak to your GP or genetic counsellor. You can also speak to our Ask Eve nurse service.

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

You need to ask the genetics laboratory how long they will hold your sample for. Most laboratories will hold the sample for some time. This also helps in case they need to go back and repeat the test for some reason. Companies may not automatically re-test the sample for new genomic information.

Will they share my data with any one?

You should check with your provider on their policy and discuss with them whether or not you would like your data to be shared, and make your preference known to them. 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.