What is BRCA?

BRCA stands for BReast CAncer. We all have BRCA1 and BRCA2 genes, they are helpful little dudes. They work as tumour suppressors and prevent certain cancers from developing. If you have a BRCA gene mutation they no longer work as effectively, and certain cancers are more likely to develop.

Most notably, breast and ovarian cancer, but with BRCA2 there are also links to prostate and pancreatic cancer. With BRCA1&2 there is some evidence that suggests links to skin melanomas as shown in this recent study. More studies are needed to confirm this, but its always good to look after your skin, especially in the sun, and seek medical advice if you are worried. Sun cream up beauties. 

There is still research being carried out on BRCA. It was only discovered in the 1990s. We still have lots to learn about how it works (or doesn’t work!), and its links to specific cancers.

Most women in the UK have a 12% chance of developing breast cancer. Those with BRCA1 mutations have up to 79% chance (by age 80), and BRCA2 have up to 77% chance (by age 80).

Most women in the UK have a 2% chance of developing ovarian cancer. Those with BRCA1 mutations have up to 53% chance (by age 80), and BRCA2 have up to 25% chance (by age 80).

The stats do differ slightly depending on what gene alteration you have! You can check the current stats for different alterations here.

As there is always research going on into the above stats, these might not always be up to date (we do try our best!). You can find the most up to date stats here.

Risks of different cancers

Although it’s clear that the risks of various cancers increase for women with BRCA1 and 2 mutations, the risks to men are often downplayed.

For our BRCA1 guys, they have a 0.4% increased risk of male breast cancer by the age of 80 and for BRCA2 guys, they have a 4% increased risk by the age of 80.

The risk of prostate cancer for BRCA1 men is similar to the general population at 18% by age 85, but for BRCA2 men, their risk of prostate cancer is up to 54% by the age of 85.

BRCA2 men also have an increased risk of pancreatic cancer at 3% when the general population and BRCA1 men is at 2% by the age of 80.

The survival rate and prognosis of these cancers in men are also much less positive than for the general population.

To mitigate the risk of life-time cancer it is highly recommended that BRCA positive men take extra precautions, especially surrounding cancers with higher risk factors. This includes;

– taking regular screens and check-ups with their GPs,

– being vigilant over unusual pains, discomforts or growth on their body, and

– limiting other activities that increase cancer risk (including drinking, smoking, being in the sun without sun cream).

Family planning

BRCA and starting a family is a complex and potentially morally-charged issue. Regardless of which partner has the BRCA mutation, a naturally conceived child will have a 50% chance of inheriting it.

For those who are BRCA (or other gene) positive, this means that starting a family may come with greater considerations and consequences, especially for their daughters. Currently in the UK, BRCA positive parents are offered access to various family planning options which they may wish to explore.

These include IVF with Pre-implantation Genetic Diagnosis to prevent the faulty BRCA gene being inherited and prenatal testing where natural pregnancies are tested for the BRCA mutation, and the parents make an informed decision regarding continuing with the pregnancy.

It is worth noting that if you already have a child, IVF may not be offered on the NHS, but speak to your genetics team to find out what options you do have.

Read our Trustee Alex’s experience of being a BRCA+ Man here.

Whoa, that’s a big question… but simply, in most cases it’s inherited from your parents. Each BRCA positive parent has a 50% chance of passing their gene change on to any children they may have, and the risk is independent (like flipping a coin) for each child.

If either of your parents have the gene mutation then Y-e-s! If there is a BRCA family history but your parents have not been tested, it is still worth seeking a referral to genetics if you would like to discuss this. If you have a personal history of BRCA associated cancer, and/or there is a strong family history of associated cancers, speak to your GP to see if you may be eligible for testing, or a referral to genetics. If you have not had cancer, and have a living relative with an associated cancer, generally they will want to test them first. On the NHS, there are criteria which must be met to qualify for BRCA testing. Talk to your GP initially for a referral.

The Eve Appeal have produced this super document which tells you ALL about testing.

OCA have developed this handy little Hereditary Cancer Risk Tool to help you along the way.

The NHS Jewish BRCA Testing Programme offers BRCA screening to anyone in England who has ONE or more Jewish grandparent. Click here for more info from a super charity called Jnetics.

The Royal Marsden also have this super useful Beginner’s guide to BRCA1 and BRCA2 which has loads of useful information on risk, sharing info with family and family planning.

Side note – check out our co-founders interview with @TheBooblessWonder – her testing journey was mind blowing.  

You will feel all the feels, and that is okay. It may feel like the scariest thing in the world. But the community is incredible, and there are preventative options available. You are NOT alone.

Search #BRCAchat on Instagram for the BRCA Communities responses to your FAQ. Let us know if you have any questions you want the tribe to answer.