Our genes are like instructions that tell our bodies how to work. A fault (also known as a mutation or alteration) is like a spelling mistake in that manual, changing how it works. If these happen in certain genes (such as BRCA1 or BRCA2), they can increase your risk of getting cancer.
Our Hereditary Cancer Risk Tool will help you assess your risk of carrying a genetic mutation.
There are some differences. You can read about the specific guidelines for England and Wales, and Scotland here.
The genetic test is usually carried out by a blood test which is then analysed by a genetics lab. It can also be done using a saliva test.
BRCA mutations and Lynch syndrome increase the lifetime risks of a number of different cancers. In some families, there may be a strong history of ovarian cancer with no history of breast cancer at all, or a combination of other cancers such as colorectal, uterine (womb) cancer and pancreatic cancer. You shouldn’t assume that if you don’t see the “typical” pattern of cancers you associate with these genes that you shouldn’t worry about your family history. Use our Hereditary Cancer Risk Tool to assess your family history and speak to your GP if you’re concerned.
Although only around 20% of ovarian cancer cases are caused by a genetic mutation, up to 50% of women diagnosed with ovarian cancer who test positive for a BRCA mutation have no family history of the disease.
If you have cancer and have found out you carry a genetic mutation, it can positively impact your treatment as there are targeted treatments and clinical trials that you can get involved with.
Finding out you have a genetic mutation could also give other members of your family, or your children, the option to take preventative action to reduce their own risk.
Yes. In fact men are just as likely as women to have a genetic mutation such as BRCA or Lynch syndrome.
BRCA mutations increase the risk of a number of cancers such as prostate cancer and pancreatic cancer, not to mention the increased risk of breast cancer in men.
Lynch syndrome increases the lifetime risk of a number of cancers, including colorectal cancer, stomach cancer, kidney cancer and pancreatic cancer. These can all affect men so whether you are male or female, if you have a genetic mutation in your family it pays to be aware.
It’s also important to remember that a man with a genetic mutation such as BRCA/ Lynch has a 50/50 chance that he will pass this mutation onto his children, whether they are sons or daughters, and their risk of cancer will be increased.
Yes. BRCA mutations and Lynch Syndrome can be passed down from your father or your mother. They can be passed down to men or women. If someone has one of these mutations, there is a 50/50 chance they will pass it onto their child, whether they have a son or a daughter. This is why it’s so important to look at both sides of the family when researching family history. To assess your risk, take a look at our Hereditary Cancer Risk Tool.
Yes it is possible to inherit more than one genetic mutation, although this is very rare. Generally the risk of cancer will be quoted as the higher risk mutation for that cancer.
Genetic mutations can’t “skip” a generation. Because not everyone with a genetic mutation gets cancer, it can be the case that in one generation, nobody gets cancer at all, but it can still have been passed down to you or your children. Similarly, if you test negative for a particular known mutation, it cannot “skip” you, and you cannot pass it down to your children.
The UK Government and the Association of British Insurers have a voluntary agreement in place called the Code on Genetic Testing and Insurance.
This agreement means that if you have had a predictive test for one of the genetic mutations that increases your chances of having breast or ovarian cancer, you do not need to disclose this to the insurers. You do not have to tell them the results of any of your family members’ predictive genetic tests.
There are financial limits to the agreement so be sure to check the code in detail. They are, however, allowed to ask about family medical history and diagnostic genetic test results (if you have signs or symptoms of a genetic condition, a diagnostic genetic test confirms or rules out whether you have the condition).
You can voluntarily tell your insurer the results of a predictive test that might counteract a higher premium based on your family medical history, for example if your family history of cancer suggested a genetic mutation but you had had a negative test.
Remember: always answer any questions asked truthfully otherwise your insurance may be void. The agreement can be foundhere.
It is entirely your decision whether you want to have a genetic test or not. No one can make that decision for you. It is worth speaking with a genetic counsellor to discuss all your options and what impact the genetic test would have but the final decision is always yours.
Whilst some people find it helpful to discuss their situation, it is entirely your decision whether to talk to people openly about your results. It is important to point out that by sharing the fact there is a genetic mutation in your family, you will be giving other family members the opportunity to find out whether their own risk is of concern. If they don’t know, they can’t take action. Your genetics team should provide you with written information to help you do this if you aren’t comfortable having a face-to-face conversation with family members.
Testing negative for a BRCA mutation or Lynch syndrome can mean a number of things. If you have a known mutation in your family, and you test negative for that mutation, you will know that you haven’t inherited that mutation and the increased risk that goes along with it. However, you will still have at least the same risk of getting cancer as the general population, which for ovarian cancer is around 2% lifetime risk. It is worth knowing what symptoms to look out for.
If you have a strong family history of cancer but no mutation is found, it could mean there is a genetic mutation in your family that has yet to be found by researchers. Your genetic counsellor will discuss with you what this means for you and your family.
No. A genetic mutation is not a guarantee you will get cancer, it means that the risk of you getting certain cancers in your lifetime is greater than the general population.
The precise risks vary depending on the particular mutation, and whether you are male or female.
Finding out you have a BRCA mutation or Lynch Syndrome means you can take action early to monitor yourself and prevent getting some of the cancers linked to the mutations. For details of preventative options click here.
If you have a genetic mutation such as BRCA or Lynch syndrome, there is a 50% chance that you will pass this on to each child. Whether you have sons or daughters, this risk is the same.
Children are not routinely tested for these mutations and the youngest a person is usually tested is 18 years old. The cancers that are linked to BRCA mutations and Lynch syndrome are not cancers that typically develop in children. The risks start to increase from the age of around 30-35 for BRCA1 carriers, and later for BRCA2 and Lynch syndrome. This means that there is plenty of time for your children to reach adulthood, go through the genetic counselling process and make their own decision about getting tested.
Studies show that when women are diagnosed with ovarian cancer and are BRCA tested, up to 50% of those who are found to have a BRCA mutation have no family history of cancer. For a detailed look at why this could be, read our blog post here.
Unfortunately, even if you have your breasts removed (a bilateral mastectomy), you are not 100% guaranteed not to get cancer. It is impossible for surgeons to remove every cell of breast tissue, as these can extend into the armpit and up to your collar bone. However, studies have shown that a Risk Reducing Bilateral Mastectomy can reduce the risk of breast cancer in BRCA+ women by 90-95%, taking a BRCA+ woman’s risk to below that of the general population.
After this surgery, women should still check themselves regularly and visit their GP if they notice any changes.
Unfortunately, even if you have your ovaries removed, you are not 100% guaranteed not to get cancer, because of the small risk of cancer of the peritoneum, the lining of the abdomen. A risk-reducing salpingo-oophorectomy (removal of the fallopian tubes and ovaries) reduces the risk of cancer by approximately 95%.
Preventative mastectomy with breast reconstruction (to reduce the risk of breast cancer) and the removal of your ovaries/ fallopian tubes (to reduce the risk of ovarian cancer) are both covered by the NHS for women with genetic mutations that increase the risks of these cancers. You should factor in costs such as time off work and travel to the hospital, but the surgeries themselves will not cost you any money. Your genetics team can tell you more about your options in this area.
When you get the news that you have a BRCA/ Lynch syndrome mutation you may feel like you want to do everything all at once to reduce your risk, but it’s important to make these decisions carefully and discuss your options with your genetic counsellor. Your options will depend on your age, family history, and your mutation - but surgery is not the only choice. There are screening programmes for breast cancer on the NHS for example, as well as chemo-prevention. For more information about your options see here.
You can find out more information about both in person and online support here.
