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.
- Breast awareness
As all men and women should, individuals with BRCA1 or BRCA2 mutations should get into a regular habit of checking their breasts. Click here for details of how to check your breasts and what signs to look out for. Remember, even if you have had risk-reducing surgery (see further down this page) you still need to check your breasts regularly.
If there are any changes at all you should visit your GP.
- Surveillance (checks to catch cancer early)
Women with a BRCA1/2 gene mutation are offered yearly MRI scans, from the age of 30, to check for breast cancer. Mammograms are offered annually from age 40–70. The reason that mammograms are not used under the age of 40 is that they are not reliable on young, dense breast tissue.
Checking yourself and attending screenings will not stop you from getting breast cancer, but it will help to detect any abnormalities as early as possible.
Chemoprevention (medication to prevent cancer): If you are at high risk of breast cancer but haven’t had the disease, you can be treated with a five-year course of tamoxifen or raloxifene to reduce your risk. This treatment carries side effects and risks so you should consult with your medical team to fully understand the implications. See NICE guidelines here.
- Risk-reducing breast surgery
If you have a BRCA1/2 mutation, you should be offered the opportunity to have a risk-reducing bilateral mastectomy, which will reduce your breast cancer risk to 5-10%.
This involves the removal of the breast tissue on both sides, with the option to have your breasts reconstructed or to stay “flat”.
Reconstruction is covered on the NHS and can be done using breast implants or by using tissue from another part of your body, for example, your tummy, to create new breasts (known as a “flap”). Within each of these options, there are many variations and different choices and you should have the opportunity to discuss these with your surgeon and find out what is best for you.
This is a major surgery and it involves a great deal of consideration so please discuss all your options with your medical team. There are advantages and disadvantages to each type of reconstruction, so what worked for one person will not be the best fit for another, but it is a good idea to get in touch with other women who have been through a similar procedure to find out their experiences. Breast Cancer Now provides a support service matching people to others in a similar situation should you wish to do so. Find out more.
Alternatively there are many groups on social media and support groups throughout the country. Click here to find out where you can find support.
The age to consider this surgery will vary depending on your specific mutation and your family history. If women in your family have been diagnosed with breast cancer at a very young age, you may want to have the surgery earlier than if women have been diagnosed in their 50s, for example. This is a conversation to have with your genetic counsellor so you can fully understand your personal risks and the best way to reduce them.
- Men & breast cancer
Yes, men have breasts and can get breast cancer!
Despite the increased risks for men with BRCA1 or BRCA2 mutations, there is no routine breast screening at the current time as it has not been found to be beneficial.
The advice is to check yourself regularly, and to be aware of any changes to how your breasts look or feel. Visit your GP if you find any of the following:
- Lumps in the breast area or in your armpit
- Skin irritation around the nipple that doesn’t go away
- The nipple turning inwards
- Fluid oozing from the nipple
- The nipple or surrounding skin becoming hard, red or swollen
See more information about symptoms of male breast cancer here.
Visit your GP if you have any concerns. If you need further checks, your GP will refer you to a breast clinic where you will be offered diagnostic tests such as a mammogram, ultrasound and biopsy.
There is currently no national screening programme for ovarian cancer, either for the general public or high risk groups, and surveillance isn’t routinely offered. This is because there is uncertainty about its reliability and effectiveness at catching ovarian cancer early. However, it may be possible to have regular CA125 blood tests and pelvic ultrasound scans as part of research trials. Talk to your GP to find out what is available locally.
Remember: cervical screening (the smear test) does not test for ovarian cancer.
- Risk-reducing surgery
If you have a BRCA mutation you have the option of having surgery to remove your ovaries and fallopian tubes (bilateral salpingo-oophorectomy), which will significantly reduce the risk of cancer developing. As well as reducing your risk of developing breast cancer (the precise risk reduction is uncertain), having your ovaries and fallopian tubes removed will reduce your risk of developing ovarian cancer to around 5%.
If you are pre-menopausal, this operation will put you into immediate menopause. There are significant risks associated with going through the menopause early, even if you take HRT, so speak to your medical team in detail about this risks and benefits of this surgery.
The evidence suggests that the most appropriate age to have this surgery differs depending on your mutation. If you have a BRCA1 mutation, the suggested age for this surgery is 35-40. If you have a BRCA2 mutation you should consider this surgery by the age of 45.
Another option you may be given is to have a risk-reducing salpingectomy (removing the fallopian tubes only) as evidence suggests that the majority of BRCA1/2-associated ovarian cancers start at the end of the fallopian tube. This would mean you didn’t go into early menopause as your ovaries would be left intact for longer.
However, while evidence from the general population suggests that removing tubes approximately halves risk of ovarian cancer, there is not yet any long term evidence of safety or efficacy of this approach in women with BRCA1/2 gene mutations. Current research suggests that this offers less protection than removing the ovaries, so you would need to have a second surgery at a later date to remove them. There are trials ongoing to gather this data so we may know more soon.
The advice from the Royal College of Obstetricians and Gynaecologists is that if you have finished your family, are not yet at the age where you wish to have your ovaries removed, but are planning to have an abdominal surgery or sterilisation, it may be worth speaking to your medical team about the options to remove your fallopian tubes at the same time. This should not be in place of removing your ovaries at a later date, but may offer you some risk reduction in the interim.
It’s important to note that none of these options guarantee that you will not get cancer and there will always be a risk. You should continue to be aware of any changes in your body and visit your GP if you notice anything that concerns you. Speak to your medical team to understand more.
It’s also important to note that there are no right or wrong decisions. You should take the time to find out as much as possible and make the best decision for you and your family.
There is a useful tool to compare the outcomes of different options at different ages here.
 Royal College of Obstetricians and Gynaecologists, Management of Women with a Genetic Predisposition to Gynaecological Cancers https://www.rcog.org.uk/globalassets/documents/guidelines/scientific-impact-papers/sip48.pdf
There is not currently a national screening programme for prostate cancer as the methods we have available have not been found to be reliable enough.